Annie Sullivan

Missing my little pink Valentine

2012-02-13T09:23:00.000-08:00

February 2011

I took this picture on February 18th--the day before we took Annie to the hospital last year. Remembering the events that happened through February and March of last year are hard. It is a constant discipline to stay focused on the future--heaven--and not keep ruminating on the "what ifs" of the past.

Also, if you think of it this weekend, please pray for me and five friends of mine who have lost children--we're getting together to share our stories, relax, pray and enjoy a couple of days with other moms who miss their kids. Some background: we all went to the same church years ago--and have recently reconnected through Facebook. Some of us haven't seen each other in over ten years, so we're looking forward to this reunion--and also the heavenly one to come.

Thanks for your prayers,

Jean

Now faith is the substance of things hoped for, the evidence of things not seen. Hebrews 11:1

Do you have adrenal insufficiency?

2012-01-31T22:02:00.000-08:00

I'm going to do a little experiment. If you or a family member has adrenal insufficiency, would you be willing to post a comment and say why you have AI? I believe there are at least 60 reasons a person could be adrenal insufficient, and it would be interesting to see how many representatives of each of these reasons we could have post.

With Annie, we never discovered why she had primary Addison's, because she had no adrenal cortex antibodies. Her autopsy report showed that she had something wrong with her pancreas, too, as it was mostly fatty tissue. But again, so far, we don't know what caused that, or the Addison's.

The thing I think is important, though, is that no matter what caused a person's adrenal insufficiency, the effects on a person's life are very similar. So although there may be many different disease processes that cause AI, the daily struggles in keeping your body running well on supplemental steroids are quite similar.

Who wants to go first?

Jean

Better cortisol control with a pump?

2012-01-27T09:00:00.000-08:00

Adrenal insufficiency can be caused by Addison's Disease, Congenital Adrenal Hyperplasia, (CAH), adrenoleukodystrophy, sudden withdrawal of corticosteroids, adrenal tumors, as well as a number of other disease processes.

People with adrenal insufficiency (AI) must take replacement steroids, usually in the form of hydrocortisone tablets to try and replicate the natural rhythms of cortisol that the body supplies. AI patients need hydrocortisone to maintain blood sugar, blood pressure, energy, and to mount a stress response to illness.

It often occurred to me how great it would be if there was a way to gauge Annie's circadian rhythms, as it related to her natural need for cortisol, and supply it through a subcutaneous pump, much like the pumps diabetics use to release insulin.

Well, Dr. Peter Hindmarsh, an endocrinologist at Great Ormond Street Hospital in the UK, actually does this for his patients, and from the sounds of this article, he does it with good success. He has his patients check in once a year to closely monitor their need for cortisol through the day, and adjusts their dosing schedule/amount based on his findings. This helps his patients get the right dose at the right times, affording them the best quality of life possible.

My question: why don't we have this technology in the US? Or do we? A subcutaneous pump that delivered the optimal dose of hydrocortisone could be life changing for those with adrenal insufficiency.

Five Years Ago Today...

2012-01-21T22:20:00.000-08:00

Life as we knew it changed forever. We woke up in the morning to a little girl who was in the middle of an adrenal crisis: blue, postured, lifeless eyes staring straight ahead--it's a memory that I would like to forget, but never will.

What do you do when the future you envisioned suddenly changes?

For us, we desperately wanted to return to how things used to be. We prayed for Annie to be completely healed. We worked hard to help her recover her lost functions of eating, walking, talking, thinking. And over the next four years, she did make progress, but never walked independently again, never held our hand again, never sang a song again and never said Mommy again.

Sometimes the future you envisioned disappears, and a new reality takes its place. It often isn't something you embrace--you want to run away from it. You want what used to be. But it's gone and will never come back.

What do you do?

There's a story in the Bible of the wise man and foolish man. The wise man built his house upon the rock. The foolish man built his house on the sand. The wind beat down on both of them. The wise man's house stood. The foolish man's house collapsed.

Winds blow. Times of testing, illness, job loss, death--bad things happen to us all. Annie's brain injury was absolutely the worst thing we'd ever faced. But because Jesus is our Rock, He was underneath us, holding us together when our world fell apart.

Over many long months, we ever so slowly began to appreciate things Annie could do, rather than continue mourning the things she couldn't do. We began enjoying quiet times snuggling with Annie while reading Brown Bear--for the tenth time that day. Walks around the neighborhood while she looked at the trees and dogs and cars driving by. We looked for ways she could enjoy this new life, the one with very restricted boundaries.

We made new friends. New doctors, new therapists, new teachers, new nurses. New little friends who couldn't walk so well or who didn't talk or had seizures--just like Annie. We became members of a new community of parents who spoke our language of AFO's, IEPs, g-tubes, seizure meds, and XL pull-ups. It wasn't a community any of us would have volunteered to join, but since we had all been drafted, we were a team. A family. We had each other's backs.

Then the life we had adjusted to and came to appreciate abruptly ended.

When Annie died, there were no more "yo-ees," no more snuggle times with Daddy while watching the Packers, no more walks around the neighborhood with Jack, reading times with Olivia, morning-getting-ready-for-school times with David. No more Sunday School. No more bedtime prayers.

Now, each time we think about all that we've lost, we also remember all that Annie has gained. It is the only thing that comforts us. We know she is well and able again to walk, talk, eat, and sing, and we try to focus on the day when we again hear her say "Mommy! Daddy!" So we don't grieve as those who have no hope--but we do grieve.

In looking back on this day, five years ago, the future we envisioned was obliterated, and in it's place God brought something else. Sometimes what we're assuming our future to be changes drastically and suddenly. What do we do when that happens? What do you do?

Jean

Though you have made me see troubles, many and bitter,
you will restore my life again; from the depths of the earth
you will again bring me up. Psalm 71:20

One Thing You Need to Know About Ice Storms

2012-01-19T11:09:00.000-08:00

1. They even happen in the Pacific Northwest.

Here's the view from our backyard this morning.

How are we?

2012-01-11T19:24:00.000-08:00

Terri asked, so I'll tell you.

How am I doing?
I always picture myself on a road. I tend to look forward, not back. And with Annie, I tend to look forward to seeing her again. That's my focus. But, as with everyone, there are triggers to grief that catch one unawares, and when that happens, I can go from fine to mush in nothing flat.

Usual conversation with any new acquaintance:
"How many children do you have?"
"Seven."
"Oh, and what are their ages?"
"29, 26, 23, 20, 18, 16."
Eyes begin to tear...
"...And our youngest, Annie, who died in March. She was almost 8."

Or when I go to the store to buy flowers for her grave:
"Is this for a special occasion?"
"Uh, not exactly. I'm putting them on my daughter's grave."
"Oh, I'm so sorry. What happened? How old was she?"
"Well, she had a brain injury when she was three...and adrenal insufficiency...and then she got the flu, and died from complications of that...she was almost eight."
"Oh, I'm so sorry."
Clerk's eyes mist over as mine do, too.

In many ways, we have been grieving for five years.
We grieved the loss of the Annie we had before her brain injury, and we grieved the post-brain-injured Annie when she died. So grief is almost a familiar friend who goes away for a few days and then comes back in and sits down for awhile. Many people describe it as waves of grief. And that has certainly been our experience. For five years.

What surprised me when she died was how much of our grief was of Annie before as well as Annie after. With severe brain injury, it's almost taboo to say how much you miss who they used to be, because after all---aren't they still alive? Aren't they right in front of you? Well, yes, their body may be. But their mind--who they were in expression and conversation--the essence of who they were--that's gone. And in Annie's case--she went from a precocious 3 1/2 year old to a 6 month old overnight. It was incredible loss. So when she died in March, it was like we lost her again.

How's Bill?

Well, right before Christmas, a client came into Bill's office and saw the picture of me holding Annie in our backyard.

"Is that your wife and little girl?"

"Oh, yes."

"Bet she's excited for Christmas to come."

"Ah, no...actually, she died in March."

Client's face falls off. Bill struggles to compose himself and move on to the business at hand.

We go to church. The pastor describes taking his blond eight year old daughter to see Cinderella. Out of the corner of my eye, I see Bill wiping his face.

Fortunately, these types of situations aren't the whole story. They are just waves that come and go.

How are the kids?
I won't identify them by name, but one still has dreams about Annie a lot:
"In my dream, I was holding her so tight and she was fighting against me 'cause she'd never let us hold her tight you know, and when I woke up, I just wanted to go back to sleep, so I could hold her again."

Another one continues to visit her grave each week.

Another one always bought Annie a stuffed toy at the Disney store every Christmas. But this Christmas, he wandered in there, looked around at all the toys he wasn't buying, and then hurried out when the tears started creeping down his face. He mentioned that again when Christmas came, how sad he was that he wasn't able to give her a Disney toy as in years past.

When talking to a friend who's experienced loss, what helps and what doesn't?

What I have found in my own family is the full range of personalities: introverts, extroverts and some in between. Some want to talk about Annie with everyone, (that would be me), and some are more private, (everyone else). So this is a common exchange with my kids:

"Mom--you didn't have to tell that clerk that Annie died."

"Yes, but she lost a child, too, and we had a heartfelt (read: teary) conversation about it."

Or from their perspective:

"So did you tell the people at Little Bit that your sister used to ride here?"

"No."

"Why don't you tell them? It'll help them know you better and why you're volunteering."

"I don't want to tell them."

Here's the deal: People grieve differently. Some want to talk about it, some don't. Just so you know, I do. I love talking about Annie, and anytime she comes up in conversation, I try to model to my kids that it is absolutely fine and appropriate to talk about her, even if there are tears involved. Because, honestly, I think some of their reluctance to talk about her is this fear of tears, and of this western phobia of showing sad emotion. But we are people who feel--Jesus wept, for crying out loud, so why can't we?

Anyway--that is the very long version of the answer to the question. We are working through it, and we appreciate your prayers to help us continue to work through it. And my hope is that this blog helps others who are working through grief and loss, too. But ultimately, my hope is in seeing Annie again. Because Jesus died for my sin, rose from the dead, ascended to heaven, and is coming again, I have the assurance that I will see her again. So I'm on that road--looking forward.

Jean

Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you. 1 Peter 1:3-4

What would you like to know?

2012-01-11T07:23:00.000-08:00

Feeling a little writer's block with Annie's blog. So rather than wait another week before inspiration hits, I thought I'd ask you for some direction. Is there is anything you'd like to know about her, about brain injury, adrenal insufficiency, living after the loss of a child...? Be bold.

Jean

December 31, 2011

2011-12-31T19:07:00.000-08:00

It's been a tough year, not only for us, but for many of you. Along with the burdens we may personally carry now, there is the sense of apprehension as to what 2012 will hold. World markets, political changes, unemployment...it can weigh us all down if we think about it for long.

However, as I was reading today's message from my flip calendar on the kitchen windowsill, I remembered Who's in charge, and in Whom my hope rests. The One who carried me through 2011 will walk with me through 2012. I do not need to be afraid, and neither do you.

As the Christian surveys the world scene, he is aware that we do not worship an absentee God. He is aware that God is in the shadows of history and that He has a plan. No matter how foreboding the future, the Christian knows the end of the story of history. We are heading toward a glorious climax.*

Forever, O Lord, thy word is settled in heaven.

Psalm 119:89

May your hope and trust be in Jesus in the New Year,

Jean

*Unto the Hills by Billy Graham

God with us

2011-12-25T06:05:00.000-08:00

And she will bring forth a Son, and you shall call His name JESUS, for He will save His people from their sins.” So all this was done that it might be fulfilled which was spoken by the Lord through the prophet, saying: “Behold, the virgin shall be with child, and bear a Son, and they shall call His name Immanuel,” which is translated, “God with us.” Matthew 1:21-23

May God be with you this Christmas, as He has been with us: Savior, Comforter, Lord and Friend.

Jean

2011-12-23T21:21:00.001-08:00

The Man and the little girl watched the woman roll out the sugar cookie dough and carefully cut out the trees, bells and stars. The little girl remembered the stars--stars were her favorite. The Man often told the little girl that the woman thought of her and missed her.

"Can You tell her that I miss her, too?" she asked Him.

The woman continued rolling the dough and cutting out the cookies. The instrumental music echoed softly in the living room while she worked. Her memory filled in the words to the song:

For the beauty of the earth,
for the glory of the skies,
for the love which from our birth
over and around us lies;
Lord of all, to thee we raise
this our hymn of grateful praise.

The little girl tugged at His robe and persisted. "And if you told her I miss her, how would I know if she really heard you?"

The woman's thoughts drifted back to the last time she made Christmas cut-out cookies, so many years ago. She had a little helper then, who liked to mix the dough then lick the spoon.

For the joy of human love,

brother sister, parent, child,

friends on earth and friends above,

for all gentle thoughts and mild;

Lord of all, to thee we raise

this our hymn of grateful praise.

The little girl continued to watch as the woman cut out another star and hummed along to the music coming from the next room. The woman suddenly recalled how her little helper used to sing that song--part of a children's collection of hymns. It had been one of her favorites, that she always would half-sing, half-yell, "Lord of all to thee we raise, this our hymn of grateful praise!"

The woman blinked back tears as she placed the next star on the cookie sheet.

The Man leaned down to the little girl and whispered in her ear as they watched the woman brush the tear away. "That's how you'll know."

For thyself, best Gift Divine,

to the world so freely given,
peace on earth, and joy in heaven:
Lord of all, to thee we raise
this our hymn of grateful praise.

For the Beauty of the Earth by Folliett S. Pierpoint

Annie's Favorite Christmas Carol

2011-12-20T07:47:00.000-08:00

I'm sure I've already told you this story, but it's Christmas, so I'll tell you again. When Annie was little--before her brain injury--her favorite Christmas Carol was Hark the Herald Angels Sing. She listened to it on the Charlie Brown Christmas CD we had, and loved to sing along, especially at the end where she would strain to reach the high notes of "Glory to the newborn King!"

After her brain injury, we would play the Charlie Brown music on the Ipod, and she would turn her head to the music and just light up like a Christmas tree when she heard this song. Now she gets to sing along with the angels. And I imagine she no longer has trouble hitting the high notes.

Hark the Herald Angels Sing

Hark, the herald-angels sing
glory to the new-born King,
peace on earth, and mercy mild,
God and sinners reconciled.
Joyful, all ye nations, rise,
join the triumph of the skies;
with the angelic host proclaim,
'Christ is born in Bethlehem.'
Hark, the herald-angels sing
glory to the new-born King.

Christ, by highest heaven adored,
Christ, the everlasting Lord,
late in time behold him come,
offspring of a Virgin's womb.
Veiled in flesh the Godhead see:
hail, the incarnate Deity,
pleased as man with man to dwell,
Jesus, our Emmanuel.
Hark, the herald-angels sing
glory to the new-born King.

Hail, the heaven-born Prince of Peace:
hail, the Sun of Righteousness.
Light and life to all he brings,
risen with healing in his wings.
Mild he lays his glory by,
born that man no more may die,
born to raise the sons of earth,
born to give them second birth.
Hark, the herald-angels sing
glory to the new-born King.

Charles Wesley (1707-1788)

Gift from Annie

2011-12-14T12:16:00.000-08:00

This was the first thing Bill pulled out of the box of Christmas decorations this year. It's the gift she made (with lots of help!) at school last year:

If you're a teacher and ever wonder if helping your students make gifts for their parents is worth it, you need wonder no more.

Adrenal Insufficiency United

2011-12-13T13:19:00.000-08:00

A friend of mine, Jennifer Knapp, has put together a video to be shown at the National Association of EMS Physicians Conference in Tucson, AZ, January 12-14, 2012. Her goal is to have national standards put into place so that all medics and emergency room departments have Solu-Cortef--the emergency injection of cortisol that I carried with Annie all the time--on hand and readily accessible. As of today, some have it and some don't. Take a look at the video here.

You can also visit Adrenal Insufficiency United's website for more information.

Go, Jennifer!!

Jean

New Blog

2011-12-12T22:24:00.000-08:00

I've started a new blog here. I'll continue to post on this blog--Annie's blog--but do visit the new one and tell me what you think.

Jean

See, I am doing a new thing! Isaiah 43:19

Causes of Adrenal Insufficiency

2011-12-07T12:56:00.000-08:00

Did you know that Addison's Disease is only one of more than 60 causes of adrenal insufficiency (AI)? There's an interesting article that describes some of the more common causes of AI, but one in particular is important for everyone to know: abrupt cessation of steroids, which can be in the form of asthma inhalers, steroid creams, or prednisone.

What this means is that AI can be caused by common medicines. That's why the instructions on most steroid medicines say to taper slowly, so your body has time to ramp up on the cortisol production that it may have decreased while you've been taking steroids. In other words, when you take steroids for a period of time, your body can be "tricked" into thinking it doesn't need to make it's normal amount of cortisol, because it is being supplied via whatever steroid you're taking. Another article I found explains this is more detail.

Good to know.

Jean

Christmas in Heaven

2011-12-01T00:00:00.000-08:00

I see the countless Christmas trees
around the world below
With tiny lights, like Heaven's stars,
reflecting on the snow

The sight is so spectacular,
please wipe away that tear
For I am spending Christmas with
Jesus Christ this year.

I hear the many Christmas songs
that people hold so dear
But the sounds of music can't compare
with the Christmas choir up here.

I have no words to tell you,
the joy their voices bring,
For it is beyond description,
to hear the angels sing.

I know how much you miss me,
I see the pain inside your heart.
But I am not so far away,
We really aren't apart.

Please love and keep each other,
as my Father said to do.
For I can't count the blessings
He has for each of you.

So have a Merry Christmas and
wipe away that tear
Remember, I am spending Christmas
with Jesus Christ this year.

Wanda Bencke

Thankful for a Child's Perspective

2011-11-24T12:55:00.000-08:00

Got this e-mail this morning from my niece, Lorraine. Her 10-year-old twin girls, Grace and Aileen, are pictured with Annie in the October 25th post.

I was thinking of all the reasons why I'm thankful and last Sunday we had a service where anyone could come up to say why we are thankful as well. One elderly man was thankful that the Lord gave him a new wife (after his first wife passed on) by having a new woman visit our church and a year later they were married. It's adorable and they are well suited.

Then after a few more families giving thanks, Grace and Aileen cajoled their friends to come up with them to give thanks. Aileen stammered and then spoke up, she was thankful that Annie was in heaven and could eat. I just couldn't look up after that. Kleenex in hand, I was a mess.

Needless to say, she said what was in my heart. I miss her, I miss all of you and I'm glad she's well again.

I was also a mess after I read this. It comforts me that Grace and Aileen carry Annie so close to their hearts. They prayed fervently through the years of her illness, begging God to heal their little cousin. And now, without minimizing their loss of Annie, their faith is big enough to thank God that today she is well--and can eat.

Another e-mail came a few days ago from my friend, Rebecca, whose daughter, Caitlyn, was in Annie's class at school last year. Caitlyn is still in the same Lifeskills class, with the same teacher, Miss Cindy. Rebecca said, "Miss Cindy has a series of videos on her iphone of the kids, and one of them is of Annie. She said Caitlyn loves to choose that one to watch, and kisses the screen while she watches it. We never know with her just what she is taking in and what things have impacted her. It's obvious, though, that she remembers her friend."

I love to hear these stories, and I'm thankful for these tender, little hearts who love and remember Annie.

Jean

7 Things I'm Thankful For

2011-11-08T21:25:00.000-08:00

Let me be blunt--being thankful isn't going to be the easiest thing I do this Thanksgiving. It may be easier to dwell on the one thing I don't have, Annie, than all the things I do have. But as my friend, Cindy--who lost her husband four months ago to a sudden heart attack--reminds me, I need to make a daily decision to "Choose Joy." So with some borrowed joy from Cindy, here are

7 things I'm thankful for this Thanksgiving season:

1. You. Whether you know me or are just peeking in, I appreciate your stopping by. One of my goals in keeping this blog is to share an eternal perspective in tough situations--in our case, with the disability and subsequent death of our daughter. And because everyone at some point experiences hard things, I hope that our story gives you hope for yours.
2. Bill--the best best friend I could ever have, to walk with through life...and death.
3. My courageous children--who keep forging ahead with their jobs, schooling, and responsibilities all while carrying their own burden of grief.
4. People who pray for us, send cards, and ask us how we're doing. It means a lot.
5. Parents or caregivers who ask for our advice. When we are able to help others with what we've learned, it redeems our loss.
6. People who talk about Annie--share memories of her, dreams they've had...anything. When you talk about Annie, it comforts us because it means you think about her, too.
7. Jesus--who died to pay for my sin and gave me eternal life. In heaven. With Annie.

Gratefully,

Jean

"We ought to give thanks for all fortune: if it is good, because it is good, if bad, because it works in us patience, humility and the contempt of this world and the hope of our eternal country." C.S. Lewis

Missing Annie #1 and Annie #2

2011-10-25T16:58:00.000-07:00

Journal entry from November 1, 2006: "Today is a cold, crisp sunny fall day--a great day to rake the leaves of the massive maple tree in our front yard. Annie helped me by pushing them around with her rake--which was twice as big as she. We filled the yard waste bin and they'll come and pick it up tomorrow--just in time for the rain and wind that's predicted for this weekend."

Before Annie's brain injury, she was my little shadow, helping me with whatever I was doing in or outside the house. I was thinking about her while raking leaves of our maple tree yesterday afternoon, and reminiscing about that fall day in November five years ago.

I was also remembering the time last October when I tried to get a picture of her sitting on a blanket with me in the leaves. With her post-brain injury sensory issues, she didn't like the wind in her face, she didn't like to have her hands touched--and she most certainly didn't like the leaves of the maple tree anymore.

We had better luck sitting beside the pumpkins in the safety of her own jogger with cousins Grace and Aileen:

Each season brings its own reminders of her. In the fall, Annie #1 was my little leaf raker, and Annie #2 was my pumpkin inspector. Today marks seven months since she left us. I miss both Annies so much.

Jean

"But I miss you most of all, my darling...when autumn leaves start to fall." Johnny Mercer
Listen here.

Not Hibernating Yet

2011-10-18T17:42:00.000-07:00

...Just in case you were wondering.

Olivia and I spent a week in Ooooooooklahoma visiting my sister Rebecca and celebrating her (fill-in-the-blank) birthday by helping her paint/redecorate her house. Lots of fun. Also drove over to Arkansas to see my sister Marilyn, and enjoyed a delicious Italian dinner with her son, Frankie. Frankie has the coolest car ever. It's a red '68 Chevelle that sits low and has big, fat rear tires.

Something I noticed there in Oklahoma (besides the towers with tornado sirens on top of them) was the wind. It's always blowing. Then there's the 85 degree heat that's hanging around still in October. Not that I don't enjoy wind and heat. Just not in October. I'm a Pacific Northwest mole at heart, and love the crisp, ~~dark~~ fall weather we have. One thing I didn't see there was traffic. Lots of nice roads, but no traffic. And after everyone comes to a complete stop at the stop signs, they wave to everyone in the intersection, on the outside chance that they know each other. Y'all know what I'm talkin' about if yer from OK.

While we were there, I called up Ashley at Silver Wind Stables at Windy Meadow Farm and arranged for Olivia to ride a horse--for the first time. I figured that would be a good thing to do in Oklahoma, seeings how they've got a fair number of horse ranches around. Ashley runs the place and gives riding lessons as well as trail rides to green city folk like us.

Here's Olivia riding Rocky with Miss Ashley leading the way:

Notice the red dirt. Lots of brick homes in Oklahoma.

And here's Olivia leading Rocky back to the barn:

Guess who wants a pony for Christmas?

30 Years Together

2011-09-19T10:06:00.000-07:00

Bill and I were married 30 years ago today, at Calvary Chapel in Costa Mesa, California. I think we were about 14 at the time. In mulling over the events of three decades, here are three things I'm grateful for:

Bill

Bill is the total bomb in my book. I love his sense of humor, his generosity, and his faithfulness to me and the kids. He loves us sacrificially and would do anything for us anytime, anywhere. If I wanted the moon, he'd find a way to give it to me. He demonstrates Christ's love to me in tangible ways every day, and our time reading the Bible and praying each morning before he goes to work glues our hearts together. He truly is God's gift to me.

My Kids and Grandkids
The Lord blessed us with seven children: Taylor, Peter, Andy, David, Jack, Olivia--and Annie, who went to heaven almost six months ago. We are thankful for our two beautiful daughters-in-law, Cris (Peter), and Naomi (Andy), and two sweet little grandchildren, Irene and Brady, (Peter and Cris'). They each have unique gifts that bless our family--we love them and pray for them every day.

Jesus
He is the Author and Finisher of our faith--and our marriage. How would our marriage have survived without His discipline, provision, guidance, healing and comforting? He is the third cord of our "3-fold cord" spoken of in Ecclesiastes 4:12, binding and strengthening us in sickness and in health, in good times and in bad. His grace covers all our sin, and makes us one--each day.

Praying for 30 more,

Jean

Marriage is more than your love for each other. It has a higher dignity and power, for it is God's holy ordinance, through which he wills to perpetuate the human race till the end of time. In your love you see only your two selves in the world, but in marriage you are a link in the chain of the generations, which God causes to come and to pass away to his glory, and calls into his kingdom.

In your love, you see only the heaven of your own happiness, but in marriage you are placed at a post of responsibility towards the world and mankind. Your love is your own private possession, but marriage is more than something personal—it is a status, an office. Just as it is the crown, and not merely the will to rule, that makes the king, so it is marriage, and not merely your love for each other, that joins you together in the sight of God and man.
As high as God is above man, so high are the sanctity, the rights, and the promise of marriage above the sanctity, the rights, and the promise of love. It is not your love that sustains the marriage, but from now on, the marriage that sustains your love.

Dietrich Bonhoeffer, "A Wedding Sermon from a NAZI Prison"

9/11--A Time to Weep

2011-09-11T17:59:00.000-07:00

Like many of you, I've spent the last several days catching bits and pieces of news reports and stories from this date ten years ago. We all remember where we were and what we were doing that morning--the shock of watching the planes hit the towers, the smoke, the fear, the crumbling debris. The death and loss and grief.

Two thoughts--the universal experience of grief, and the importance of memorial--have kept coming to my mind.

Grief. Deep sorrow, esp. that caused by someone's death.
All of us experience loss and the accompanying grief in our lives: loss of employment, loss of relationships from divorce, loss of health, loss through death. And through all the losses I've experienced, I've learned that grief isn't something you "get over" or even "get through." Instead, this loss becomes part of who you are--you assimilate it into your life as part of you. Over time, the loss is not as debilitatingly painful as at first, but quietly waits in the shadows as a permanent companion, tiptoeing out through an unexpected conversation, or appearing through the grief experienced by someone else. The stories I've heard about these last few days have reminded me that there are many who carry a unseen burden of grief.

Memorial. Something, esp. a structure, that reminds people of a person or event.
Having a place to remember Annie at her grave has been helpful to us. It's a place to step away to a quiet place, be alone and remember her. And now, with the memorials in New York, Shanksville, and the Pentagon, the families of the victims of 9/11 have a place to remember. They've carried their invisible backpacks of grief for ten years, and now have a place to put them down and rest--especially important, I think, because many of them never were able to bury the remains of their loved ones.

Memorials are important because until Jesus comes and conquers the last enemy, death, there will be grief. And as long as there is grief, those that mourn will be comforted by memorials that remind the world what they know in their heart--their loved ones will never be forgotten.

Jean

"We miss and love you so much. I have your smile, your eyes, and your laugh, but I just don't have you." --Francesa Picerno, whose father, Matthew Picerno, died at the world trade center.

Annie's Headstone

2011-09-08T20:19:00.001-07:00

Annie's headstone was installed today. We went over to look at it this evening. It's nice, as headstones go, but I wish we never had to design one for her.

If you live in the area and want to visit, her grave is in the Camellia Garden at Purdy-Walters/Floral Hills Cemetery. Her grave is southeast of the red flowering plum tree, which is southeast of the fountain. We always have pink flowers there.

Jean

The last enemy that will be destroyed is death. 1 Corinthians 15:26

What Annie Taught Me

2011-08-20T18:00:00.000-07:00

After a bath--August 2010

It's been almost five months since Annie died. Five months to reflect on her brief life, five months to miss her, and five months to think about the good things that sifted out through the bad. I learned much from that little girl.

She taught me that every person has value, no matter what their physical or intellectual limitations.
Annie could do very little for herself. She couldn't eat, walk, or talk. Her contribution to society--as if a person needs to "do" something in order to have permission to live--seemed to consist of one thing, and that was the daily testing of my character. Well, I guess her other contribution was that she was pretty darn cute.

She taught me to trust God even when the answers to my prayers were "No."
I love to get "yes" answers to my prayers--who doesn't? But often when praying for Annie, the answer was no. Or worse yet, sometimes it seemed like there just was no answer. But most times, even when the answer seemed to be out there floating somewhere, I felt His presence in spite of the incredible challenges of caring for Annie. And many times, I felt God's comfort and strength through the prayers you offered.

She taught my other kids compassion for people with disabilities.
They learned to not be afraid of people with disabilities; that people who have disabilities need love and respect--just like anyone else.

She taught us to treasure each moment with our friends and loved ones.
Because this life is brief, and our little reality can change in an unexpected instant.

She taught us that heaven is closer than you think.
Annie was a little girl who lived such a short time here on earth. However, her life in heaven has just begun, and with each thought of her comes the excitement of seeing her again very soon.

Jean

You do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away. James 4:14

Celebrations

2011-07-27T14:10:00.000-07:00

Happy Wedding!

This past weekend, Annie's big brother Andy (don't ask us why we chose those names...) married his lovely bride, Naomi. The day was beautiful in every way--the weather, the friends and family who gathered, and the couple, who spent the day grinning from ear to ear. We are overjoyed to have Naomi join our family as a new daughter-in-law--almost as overjoyed as Andy is to have her as his wife!

As I was sitting there ~~crying~~ watching them exchange their vows, it made me think that we have experienced the highest of highs and the lowest of lows all in the span of 5 months, and reminded me of a recent message on how Christianity is about a funeral and a wedding. The funeral happened when Jesus died for us. But the wedding is yet to come. Pastor Mark explained:

Think of a woman who God has told her, “You’re going to be married. Just wait for your husband.” Days, weeks, months, years. She wonders, “Is he ever coming?” But God had revealed to her some specific details. “He’ll come like this. You’ll know this is he.” And then one day—she wasn’t expecting it, she’d sort of lost hope—and there he is. And he starts approaching her. And in that moment she realizes, “This is the day where the promise of God comes true.”

I can't wait!

Jean

Was It Her?

2011-07-19T21:54:00.000-07:00

The other day when Jack was driving down the road, he said he saw a little girl in a jogger stroller "with skinny legs just like Annie's--she even looked like Annie!" His knee-jerk thought was: "Stomp on the brakes--Annie? You're not supposed to be here!?" But then he realized that it couldn't be Annie--after nearly crashing his car while craning his neck around just to make sure.

After he came home and was telling me about it, I asked him if it could have been Annie's friend, Molly.

He thought for a moment. "Oh, yeah...it must have been Molly!"

Annie and Molly were in similar life-skills classes together last year, and the all the kids at their school would often get them mixed up--they look that much like each other. Her mom and I would laugh and tell them that they were sisters--we even thought of getting them matching T-shirts: "I'm Annie's Sister," or, "I'm Molly's Sister." When I told her that Jack had seen them out for a walk and thought for a split second that Molly was Annie, she said maybe it was just Annie's way of reaching down and saying, "Hi Jack!"

I like that idea.

Jean

Life means all that it ever meant. It is the same that it ever was.
There is absolutely unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you, for an interval,
somewhere very near, just around the corner.
All is well. Henry Scott Holland

The Roadmap to Heaven

2011-07-14T11:36:00.000-07:00

This will be my last post on the book, Heaven. Briefly, here's what the Bible says on how to get there:

1. God loves you and wants you to go heaven!

The Lord...is longsuffering toward us, not willing that any should perish but that all should come to repentance. 2 Peter 3:9
In this is love, not that we loved God, but that He loved us and sent His son to be the propitiation (payment) for our sins. 1 John 4:10

2. Jesus is the way to heaven.

Don't be troubled. Trust in God. Trust also in me. My Father's house has room to spare. If that weren't the case, would I have told you that I'm going to prepare a place for you? When I go to prepare a place for you, I will return and take you to be with me so that where I am you will be too. You know the way to the place I'm going. Thomas asked, "Lord, we don't know where you are going. How can we know the way?" Jesus answered, "I am the way, the truth, and the life. No one comes to the Father except through me." John 14:1-6

God gave us eternal life, and this life is in his Son. Whoever has the Son has life; whoever does not have the Son of God does not have life. 1 John 5:11b-12

3. You make the call.

You decide--do you believe that Jesus died for you? If you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved. Romans 10:9

4. We can know for sure.

God wants us to have assurance that we will be with Him when we die. I write these things to you who believe in the name of the Son of God that you may know that you have eternal life. 1 John 5:9

5. What about the people we love?

Many of us know friends and family who seem to be far from God. I'd say, tell them what the Bible says, and then pray. Show them God's love and forgiveness, and keep praying. The Lord saves people, we don't. And remember that there's a party in heaven over each sinner who repents! (Luke 15:7)

Again, if you'd like to be a part of a continuing discussion, contact me. Or if you just have questions about heaven, e-mail me, and if I don't know the answer to your question, I'll try to find it.

Jean

A Few More Books on Heaven

2011-07-13T16:58:00.000-07:00

Paul Enns, author of a new book called Heaven Revealed, posted his top five books on the subject of heaven in the July issue of Christianity Today. They are:

Heaven, by Randy Alcorn; One Minute After You Die, by Erwin W. Lutzer; A Brief History of Heaven, by Alister E. McGrath; Heaven--Better By Far: Answers to Questions about the Believer's Final Hope, by J. Oswald Sanders; and The Biblical Doctrine of Heaven, by Wilbur M. Smith.

So, a few more ideas for your library.

You might be interested to know that a few of these authors were prompted to write about heaven after they had lost a spouse or loved one.

Anyway--happy reading. I'll post my next chapter discussion tomorrow, then I'm going to go underground with our Heaven book study. Let me know if you're interested in joining a group discussion via e-mail...or the Spotted Cow.

Jean

5 Things You Need to Know About Hell

2011-07-12T08:16:00.000-07:00

This blog post will be like a trip to the dentist. No, maybe the endodontist. But because I care about where you go after you die, and no book discussion about Heaven is complete without including information about Hell, I'm going to hit "publish." But let's be honest--not everyone believes in Hell, or wants to discuss it. I think most people would like to think that everyone goes to heaven...or at least "a better place." However, God told us about Hell in the Bible, so it's important that we know about it too--and more important, how to avoid it. Why?

1. Because you don't know when you're going to die. It's of utmost importance to know your eternal destination. Man is like a breath; his days are like a passing shadow. Psalm 144:4

2. Because Jesus talked about hell more than anyone else in the Bible, which means it's a real place that real people go to. Wide is the gate and broad is the way that leads to destruction, and there are many who go in by it. Matthew 7:13

3. Because our sin separates us from God. If we're separated from God, our default destination is hell,
and we are on that broad way that leads to destruction.
For all have sinned and fall short of the glory of God. Romans 3:23

4. Because Jesus died to save you from hell. Alcorn says, "If Christ's crucifixion and resurrection didn't deliver us from an eternal Hell, his work on the cross is less heroic, less potent, less consequential, and thus less deserving of our worship and praise." We simply don't realize what an awesome thing it is that the God of the universe came to earth, and died in our place, to rescue us from Hell!
God shows His own love for us in that
while we were still sinners, Christ died for us. Romans 5:8

5. To learn more about what the Bible says about heaven and hell, and how to avoid hell, watch this. Jesus was the sinless Son of God who died in our place for our sin, and we are on the road to hell apart from trusting in Jesus to save us.
I am the way, the truth and the life. No one comes to the Father except through Me. John 14:6

Question:

When was the last time you had a conversation with someone about Hell? What happened?

Jean

Setting Our Minds on Things Above

2011-07-08T21:42:00.000-07:00

In Chapter Two, Alcorn quotes C.S. Lewis: Most of us find it very difficult to want "Heaven" at all--except in so far as "Heaven" means meeting again our friends who have died. One reason for this difficulty is that we have not been trained: our whole education tends to fix our minds on this world. Another reason is that when the real want for heaven is present in us, we do not recognize it.

I have to admit that much of my desire for heaven centers around seeing Annie again--and my mom and sister. But when Lewis says that "when the real want for heaven is present in us, we do not recognize it," that got me to thinking...what are some examples of the real want for heaven that we may experience every day, but don't recognize those wants as a desire for heaven?

For instance, what if everyone in your family got along all the time?
...you never had to weed again?
...your laundry was done--forever?
...you were geographically close to the people you love?
And what if everyone was safe, had enough to eat, was treated fairly and with justice, and always felt loved and cared for?

Do you ever wish that things were, well, perfect?

What difficult situations in our lives are also divine reminders for us to look up and look forward to heaven?

Jean

Seek the things that are above, where Christ is, seated at the right hand of God. Set your mind on things that are above, not on things that are on earth. Colossians 3:1b-2

46 Days in Heaven

2011-07-07T11:19:00.000-07:00

In discussing the book Heaven, by Randy Alcorn, I thought I'd do more frequent blog posts and just do one chapter at a time. There are 46 short chapters, so today, let's begin with this thought from Chapter 1:

"An overwhelming majority of Americans continue to believe that there is life after death and that heaven and hell exist," according to a Barna Research Group poll. But what people actually believe about Heaven and Hell varies widely. A Barna spokesman said, "They're cutting and pasting religious views from a variety of different sources--television, movies, conversations with their friends." The result is a highly subjective theology of the afterlife, disconnected from the biblical doctrine of Heaven.

Question: Do you believe there is a heaven and a hell? Why or why not?

Jean

PS. All respectful comments are welcome--don't be shy about asking questions. And if you believe in the Bible, try to include a Bible verse that supports your comment. Also, if you're reading Heaven along with us, and want to comment about something else in Chapter 1, feel free to do that.

Heaven Book Club

2011-06-25T08:33:00.000-07:00

Flowers for Annie

It's been three months today since Annie went to heaven, so I thought it would be a good time to jump in and do that book club we've been talking about. Let's read and discuss Heaven, by Randy Alcorn. You can get a copy either through your library or on Amazon for the reasonable price of $13.97 plus shipping. Heaven is divided into three sections: Part I is "A Theology of Heaven," Part II is "Questions and Answers About Heaven," and Part III is "Living in Light of Heaven." Taking into account family reunions, weddings and vacations, I think we can get through the whole book this summer. It'll be a crunch.

There are 12 sections to the book--about 500 pages. It's a big one. Let's try to do 3 sections every 2 weeks. I'll post questions/discussion as often as possible, so we can get through this by the end of August.

Just to get our mental cogs moving, Alcorn points out in his introduction that "we all have a terminal disease called mortality." But no one seems to like to think about death, or life after death. Most of us have a tendency to have our feet planted firmly in this life of work, family issues, and meeting urgent, yet often not important, commitments. He also says that "God uses suffering and impending death to unfasten us from this earth." I would agree with that. Since Annie had her brain injury in 2007, and then died three months ago today, I have never been so anxious to leave this world and get home!

Bill actually gave me the book Heaven for Christmas in 2008. On the first page, he wrote:

Dear Jean,

I thought it would be fun to plan our trip.

Merry Christmas '08.

Love, Bill

Now, I have to be honest--I have only read one chapter so far. One chapter in two and a half years. My excuse is that caring for Annie was pretty consuming, and didn't leave me a lot of time to read books. But I don't have that excuse anymore. And, most of you don't either. So, let me start with this first question, just to get us going until everyone gets their book and reads the first chapter. "Are you looking forward to Heaven--why or why not?"

Jean

"Show me, O Lord, my life's end and the number of my days; let me know how fleeting is my life. You have made my days a mere handbreadth; the span of my years is as nothing before you. Each man's life is but a breath." Psalm 39:4-5

Last Day of School

2011-06-21T07:21:00.000-07:00

Yesterday, Annie's teacher, Miss Cindy, invited us to the dedication of a little flower garden they planted in front of the school in her memory. In the middle of the garden is a weeping cherry tree--very appropriate, because I think I watered it enough for this week just with my tears. They also made a memory book of pictures and a CD of video and still pictures from this past year. Many of her classmates were there with their parents: Maya, Josh, Elise, Aiden, Caitlyn, Kai...and her friend, Molly, who bears a striking resemblance to Annie, and who, we used to say was Annie's older sister. Sweet, sweet children.

Her teachers and therapists: Cindy, from this year, Amanda from the last two years, Cynthia, Brenda, Karen, Meg, Barb, and Annie's nurse, Miss Patty were all there, as well as principal Brenda, counselor Merriah, teacher Chandler, paraeducators Roxanne, Alicia, Dina...friends Amber and Rebecca...many wonderful, kind people. My kids, David, Jack and Olivia came too, with friends Jessica and Chioma.

Bill and I knew it was going to be difficult returning for the first time to Annie's school...I think the last time I was there with her was for the Valentine's Day party, pictured in the memory book. School, and the people there were such a big part of our lives. Annie loved being at school with all her friends, although she didn't like everything they made her do--like taste pudding and finger paint. But she loved walking through the halls on her Kidwalk, visiting with the ladies in the office, and sitting next to little Elise at circle time, who would pull a "Hi" out of Annie every day. We miss seeing everyone there so much...just like we miss Annie.

The garden, memorial plaque, book and CD were all such kind gestures...we are grateful for the friends we made through her school, and the caring people who worked with her over the years. God blessed us and Annie through them all.

Jean

"Enjoy the little things, for one day you may look back and realize they were the big things." Robert Brault

Mercies In Disguise

2011-06-14T15:49:00.000-07:00

I keep hearing bits and pieces of this song on the radio. I think they fit well with my last post. Laura Story wrote it--look up more about her "story" here.

Blessings
We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering

All the while You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?

What if trials of this life
Are Your mercies in disguise?

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough

And all the while You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?

And what if trials of this life
Are Your mercies in disguise?

When friends betray us, when darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy?

And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?

Why God Heals: 5 Common Misconceptions

2011-06-09T09:00:00.000-07:00

Ever wonder why some people get healed and others don't? I Googled this question, and there're 286 people who also have the answer. But since you're reading this blog, here are 5 commonly held misconceptions as to why God heals:

1. People who get healed deserve it.
I heard this more than once when Bill was healed of Progressive Supranuclear Palsy in October of 2000. The conversation would go like this:
Me: "Bill was miraculously healed of PSP."
Someone else: "Well, if anyone deserved to be healed, he sure did."

Actually, Bill never felt like he "deserved" healing--although he was thrilled when God did it. In fact, the Bible says what we really deserve is to go to hell, but that's another post. Think about the story of when Jesus healed 10 lepers, and only one came back to thank Him. If only deserving people get healed, then why did Jesus heal the other 9 who weren't thankful? Even though they didn't thank Jesus, they still were healed! So, whether or not we are healed has nothing to do with what we deserve, but has everything to do with God's choice to heal.

2. If God heals you, He must have something important for you to do.
We also heard this when Bill was healed, almost as if everything he had done prior to being healed was not important, and now he had to solve world peace. The thought that he was healed so he could "do something important" was a burden on him for years, and he finally had to burn his red cape and come to the conclusion that his job was to "fear God and keep his commandments," (Ecc. 12:13), and let God deal with the future of the world.

3. People who get healed pray the right prayers.
The Apostle Paul prayed three times to be healed, and God didn't heal Him. (2 Corinthians 12:8-10) Was that because he didn't pray correctly? Paul prayed for other people to be healed, and they were, so surely he knew how to pray for healing. No, the reason Paul was not healed was that God's desire was to show His power, not through healing, but through illness. Paul wrote, "But (Jesus) said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Cor. 12:9)

4. People who get healed have enough faith--and, conversely, if you aren't healed, you don't have enough faith.
Some people in the Bible were said to have had faith, and that faith made them well. (Luke 18:42) However, there were also people who were healed in response to the faith of others. (Mark 2:1-12) And yet another story involved a child who was eventually healed, but whose father admitted to Jesus that he needed help to believe that healing was even possible! (Mark 9:24) And finally, some faith-filled people like the Apostle Paul, were never healed of their sickness. Jesus is not hamstrung by the amount of faith we do, or do not, possess. And, He's not obligated to heal when people absolutely, positively know He can do it. I've read a little about that in books.

5. God loves the people who get healed. God is mad at, or somehow displeased with, the people who don't get healed. I don't think God was displeased with the Apostle Paul, so if you've prayed and you or your loved one is not healed, don't let Satan whisper in your ear that God doesn't love you, or is somehow not paying attention. The bottom line is that even people who DO get healed, eventually die. Our problem is that we think that our health or the health of our loved ones is the most important thing. As consuming as it may be, our health is secondary. Jesus, and His kingdom, is Primary.

So there you have it. I'd also recommend the book Miraculous Healing--Why Does God Heal Some and Not Others, by Henry Frost. It was written at the turn of the last century, and is a bit cumbersome to read--but he gives a thorough treatment of this question, and I came away from it encouraged to pray, and to leave the answers with God.

We prayed for Bill to be healed, and he was--here on earth. We prayed for Annie to be healed, and she was--in heaven. And having experienced both, I know God can be glorified through sickness just as effectively as through healing. We need to remember that God can take seemingly bad things to bring about His good--the good that is, admittedly, sometimes very hard to see. Sometimes, the "good" is simply that we experience in a daily, minute-by-minute way that His grace is sufficient, while anxiously looking forward to heaven where there will be no more sickness and no more pain!

Jean

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. Revelation 21:4

Memorial Day 2011

2011-05-29T21:55:00.000-07:00

We went to the cemetery after church today to put flowers on Annie's grave. Lots of American flags decorated the cemetery in preparation for Memorial Day--many veterans are buried there. The place was a hub of activity today with organizations selling red, white and blue flowers and flags to put on the graves of loved ones. I appreciate the sacrifice of those buried there. Even if the soldiers died of old age, their years spent serving their country deserve honor, respect and gratitude from we who are the recipients of the freedom we enjoy in our country.

For some of us, Memorial Day is more of a day to remember any family member who has died--veterans or not--so that's what we did. I'm glad Annie's grave is close by--the boys stop by there frequently to leave flowers, or to just sit and think. She was a much-loved and cared for little sister, and still is.

Jean

Courage is contagious. When a brave man takes a stand, the spines of others are often stiffened. Billy Graham

Oh-la-la!

2011-05-26T20:07:00.000-07:00

The next best thing to gardening with Annie in heaven is gardening with Ciscoe. My friend, Linda, and I learned all about container gardening last night at a talk he gave at MyGarden nursery. We didn't win first prize for the containers we made, but we had loads of fun.

Me and Ciscoe Morris, garden guru of the Northwest

Posing beside our container creations

Check out Ciscoe's new book, "Ask Cisco: Oh-la-la, Your Gardening Questions Answered." I'll have to put it on my recommended reading list. Don't ask me where the Oh-la-la thing came from. I don't know everything about gardening.

Jean

When weeding, the best way to make sure you are removing a weed and not a valuable plant is to pull on it. If it comes out of the ground easily, it is a valuable plant. --Author Unknown

Gardening in Heaven

2011-05-24T10:00:00.000-07:00

I've read that after someone dies, a family member may leave their loved one's bedroom untouched, with their clothes in a pile on the floor just like they left them, their reading glasses on the table just like they left them or their stuff exactly as they were the day they died. I always thought this practice was a bit weird until I realized I did the same thing in our backyard with Annie's garden tools. Then it wasn't so weird.

When Annie got sick four years ago I left her little shovel and hand rake where she dropped them the last time she played with them under the slide in our backyard. After her brain injury, I always hoped she might play with them again, so I left them there in the chance that she would. But she never did. Most of you know that anytime she'd pick up a toy, she'd usually immediately throw it, and she certainly didn't want to dig the dirt in the garden with all her sensory aversions. So, the tools just laid there for the last four years. Bill's going to build a shed there soon, and the tools will be moved. I'll put them inside with some other things I've saved of hers.

My plan now is to garden with Annie in heaven. The Bible speaks of many different gardens, and God created gardens, so I'm thinking that this is not an unreasonable thing to hope for. The Bible opens with a scene in a garden, our salvation was secured after Jesus suffered in a garden, He was buried in a garden close to the place of His crucifixion, and the description of heaven at the end of the Bible has a garden. So Annie and I will garden in heaven--something else I'm looking forward to.

Jean

Old Maple Tree

2011-05-18T10:00:00.000-07:00

The red leaves of our old maple tree just popped out this week--late this year because of all the cold, rainy weather. Each afternoon as the sun sets, the sunlight strobes through the fluttering leaves and makes patterns on the walls and floor of our living room. I remember when we brought Annie home from the hospital after her brain injury in the Spring of '07, she would stare at the movement of the leaves as if she was wondering what caused it, and her attention couldn't be diverted to anything else. The therapists had difficulty working with her, because her eyes were fixed on those leaves. So we'd position her to face away from the window. But she'd turn her head around anyway so she could look at them.

Today, though, Annie can see another tree. It's not old. And she's not brain-injured.

Jean

Then the angel showed me the river of the water of life, bright as crystal, flowing from the throne of God and of the Lamb through the middle of the street of the city; also, on either side of the river, the tree of life with its twelve kinds of fruit, yielding its fruit each month. The leaves of the tree were for the healing of the nations. Revelation 22:1-2

Questions

2011-05-10T21:30:00.000-07:00

I have a few questions about heaven. Well, actually a lot of questions. The main one centers around prayer, and how to talk to God about Annie. You see, I still pray for Annie. I know, it's weird. But when I'm praying and go down the list of my kids and get to Annie, I'm not quite sure what's the right thing to say to God, and not praying for her seems somehow disrespectful or unkind. But what should I say? What should I ask for? It's not as if she needs anything, and she's not sick anymore...and most of the things I used to pray for her don't apply now.

Sometimes I wish there were more specifics in the Bible about the lines of communication between heaven and earth--I mean, besides between God and me. And I'm not just talking about what I might want to believe is true, but what is really true? (Check out this blog from Randy Alcorn about heaven, books about heaven, and why any near-death experience of heaven or beliefs about heaven need to be judged against the truth of God's Word.)

Getting back to my question, though--if God can hear me, (1 John 5:14), and Annie is with Him, (1 Thess. 4:17), if I ask Him to relay a message to her--will He? What is the conduit of communication between people on earth and people in heaven? Hebrews 12:1 says we're surrounded by a great cloud of witnesses--those who have gone to heaven--but does that mean that they watch us all the time? How interested are they in what is going on here when they've got better things to focus on in heaven? Does Annie think about me as much as I think about her?

I really don't know all the answers to those questions. But if God shares messages to people in heaven from people on earth, I want Him to tell her that I miss her and I love her and I can't wait to see her again. And I'm so thankful that she is healed and can talk again.

I just can't wait until Jesus comes so I can hug her and tell her those things myself.

Jean

"Surely I am coming quickly." Amen. Even so, come, Lord Jesus! Rev. 22:20

Mother's Day

2011-05-08T00:00:00.000-07:00

Thinking about two of my favorite people today...

Anna Grace Magee Priest
January 26, 1930 ~ June 28, 1986

Annalee Grace Sullivan
April 7, 2003 ~ March 25, 2011

Her absence is like the sky, spread over everything. C.S. Lewis from A Grief Observed

Grief Mentors

2011-05-04T20:54:00.000-07:00

I was standing in the grief aisle at the bookstore the other day, reading books about the five stages of grief, books that refute the theory of the five stages of grief, and books about losing a spouse, a parent, a sibling, and a child. Lots of stuff written on grief and loss. It was all very interesting, and basically, I learned that when someone you love dies, you're sad. And the books said that being sad is normal, so I was relieved to know that I'm normal. In that way, books have been helpful.

What has been even more helpful are lessons from my friends who've lost children. I call these friends Grief Mentors. Interestingly, some of the lessons these Grief Mentors taught me were from years ago--long before Annie died. Most of them probably didn't realize at the time that they were teachers, but their lessons have stuck with me, and I'm now walking in the footprints they've left behind.

I remember sitting next to a friend at the funeral of an elderly man. During the service there was a responsive reading of Psalm 23, and as we recited the psalm, I overheard her whisper:
"Yea, though I walk through the valley of the shadow of death,
I will fear no evil, for thou art with me,
thy rod and thy staff, they comfort me."
I found myself straining to hear her quiet voice, so I lowered mine to listen to hers. Her baby had just died of SIDS not long before, and as I sat there in the pew next to her, it occurred to me that she knew by heartbreaking experience what walking through the valley of the shadow of death really meant.
To me, it was an evidence of her trust in God that she could say those verses, while the pain of her loss was so raw. And here, so many years later, I can still hear her soft whisper: "thy rod and thy staff, they comfort me."

It reminds me of that verse I posted from a couple of days ago--how when God's people "walk through the Valley of Weeping, it becomes a place of refreshing springs." Their faith in the face of loss refreshes those who follow in their footsteps.

Jean

Cold, Rain and Gloom

2011-05-02T21:42:00.000-07:00

Tomorrow will mark 40 days since Annie went to heaven. Forty days and forty nights. And although we're happy for her, we're not so happy for us. How appropriate that this past month is one of the coldest, rainiest and gloomiest on record...it certainly matches the mood around here.

Just slogging through it.

Jean

What joy for those whose strength comes from the Lord,
who have set their minds on a pilgrimage to Jerusalem.
When they walk through the Valley of Weeping,
it will become a place of refreshing springs.
The autumn rains will clothe it with blessings.
They go from strength to strength--
each of them appears before God in Zion. Psalm 84:5-7

Songs in the Night

2011-04-26T20:58:00.000-07:00

Throughout Annie's illness and now since she's been in heaven, I have almost a continuous playlist in my head of songs that bring immense comfort, and remind me that God is near. The Bible says that He gives songs in the night, (Job 35:10), and I have truly experienced that in this dark time of our lives. One that keeps coming to mind is referenced in a comment from my last post, by Tanis, which we also included at Annie's memorial service:

In Christ Alone
In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand. Stuart Townend

Listen to Kenosis play it here.

How Deep The Father's Love for Us

2011-04-22T07:16:00.000-07:00

How deep the Father's love for us
How vast beyond all measure
That He would give His only Son
To make a wretch His treasure

How great the pain of searing loss
The Father turns His face away
As wounds which mar the chosen One
Bring many sons to glory

Behold the Man upon a cross
My guilt upon His shoulders
Ashamed, I hear my mocking voice
Call out among the scoffers

It was my sin that held Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

I will not boast in anything
No gifts, no powr's, no wisdom
But I will boast in Jesus Christ
His death and resurrection

Why should I gain from His reward?
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom

©1995 Kingsway's Thankyou Music
Words and Music by Stuart Townend

Listen to this song on Mars Hill band's "Kenosis" page.

Working through it

2011-04-20T20:27:00.000-07:00

I've talked about the chronic grief we lived with for the last four years: losing a typically developing child, gaining a child with severe disabilities and all the trauma that that event included. The sadness of what Annie lost herself, although it mercifully never seemed to bother her. And, now the physical loss of her and her place in our lives. Every one of our lives revolved around this little Miss in an intense way--every decision, every plan, everything included her. She really was the center of our universe in many ways.

And yet, it has surprised me that our time now doesn't seem to be empty, in the sense that we have long spans of hours with nothing to do. Going through Annie's things and deciding what to keep and what to give away has been cathartic to me. It's been comforting to see equipment like her wheelchair and activity chair go to children whose lives will be improved by using them. And also comforting to choose some of her things to keep out nearby to remind us of Her Little Self, like the blankets I gave to each of the kids to keep in their rooms, along with any of her stuffed toys they wanted.

Then there's the mountain of thank you notes that I'm working on. We have been overwhelmed with the many expressions of sympathy from you all--so many kind cards, gifts, flowers--it has been a daily reminder that God loves us and is walking through this with us. And the notes I'm writing are a pleasure, because it's like experiencing again the things you've done for us.

Also, soon we'll design Annie's headstone and having that placed on her grave. I have conflicting emotions about graves, I'll admit, because I so clearly see her with Jesus, and not in the ground. But we'll do it, and it will be a sweet reminder of young Annalee.

I've also appreciated the time I've had with the older kids and Bill to process what happened four years ago, all the events of the last four years, and of course, the things from the last few months. It's been good to have time to talk, and to listen when the kids come in and sit down with tears in their eyes. Just hearing their perspective of events, their questions about why, and what do I do when people talk about Annie and I just want to cry? It's all work, but it's all good.

Again...we know you all are praying, and those prayers form a blanket of comfort around us.

Working through it,

Jean

You number my wanderings;
Put my tears into Your bottle;
Are they not in Your book? Psalm 56:8

rem·i·nisce

2011-04-14T07:49:00.000-07:00

/ˌreməˈnis/ Verb: Indulge in enjoyable recollection of past events.

Sometimes after Annie woke up early in the morning, I'd start her g-tube breakfast, give her medicine, and then tuck her back in bed with Olivia while I got ready for the day.

Morning snooze with sister Olivia.

Time to Grieve

2011-04-11T10:23:00.000-07:00

Annie's memorial is over, the extended family has returned to their respective states and towns, and now there is time to mull over the events of the last few weeks. Or years. I am looking forward to this quiet time alone to think.

Family caregivers who have lost their jobs through their charge's death have a gift. It's called Time. Time to mentally sift through what happened, time to thank God for helping them through the pressures of medicines, doctor's appointments, therapies, and illnesses--and time to look forward to when they'll see their loved ones again. That's about my favorite part, right now. The anticipation of Annie talking to me is better than being a 6 year old one week before Christmas.

In some ways, I feel like I've been here before. A little over ten years ago, I lost my job as Bill's caregiver. Of course, it was a completely different experience--a happy one--because he was miraculously healed overnight of the Parkinsonism, PSP. One day he was sick, the next day he was healed. One day he was sick, the next day he had an opinion about everything. We didn't need the disabled parking card anymore. We had a bunch of medical equipment in the garage we needed to get rid of. But after I wasn't his caregiver anymore, Bill was still here.

Now with Annie's death, there is a heaviness, a weight of sadness that hangs over our house, and sits with us in our living room. It looks out from her bedroom when we walk down the hall, and silently stares through her books and toys that lie motionlessly on the floor. The soft, heavy quiet of her absence.

Jean

Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me; your rod and your staff, they comfort me. Psalm 23:4

Thy Will Be Done

2011-04-09T21:10:00.000-07:00

I remember standing in church a year or so ago, during a worship song. The words on the screen caught me off guard--

If Thou hast called me to resign
What most I prized--never was mine;
I only yield Thee what is Thine--
"Thy will be done."

I promptly burst into tears because I had the distinct impression that God was saying to me, "Look, Annie is Mine. She's not yours. So, although you want Me to heal her, that's My decision. Your job is to trust Me."

I remember praying and praying and praying for God to heal her and wondering if the mic on my lapel was even on. Was God listening? Did He care? Why wasn't He answering me? All I thought was God needed to heal her, and if I prayed hard enough, He'd be convinced of the validity of my good idea.

Then one night I read in my Bible, "while Jesus was here on earth, he offered prayers and pleadings, with a loud cry and tears, to the one who could rescue him from death. And God heard his prayers because of his deep reverence for God. Even though Jesus was God's Son, he learned obedience from the things he suffered." (Hebrews 5:7-8) What that meant to me was that although Jesus was God's Son, and even though His cries were heard, God's will from the beginning of the world was that Jesus would die in our place for our sin. And Jesus was obedient to God, even though it meant excruciating suffering.

Likewise, in a very small way, it dawned on me that even though the answer might be no that Annie be healed, it didn't mean God wasn't listening or couldn't hear. He did hear my cries and tears, and He could heal Annie, yet for reasons still unknown to me the answer was no. And just as Jesus said, "Not My will, but Yours, be done," so I had to come to the place of submission to God's will.

This revelation was immensely comforting to me. Especially since I knew that God could heal, not only from what I read in the Bible, but based on personal experience with Bill. Just because He wasn't healing her didn't mean that He wasn't listening, didn't care, or was unable to do anything about it. It gave me a renewed sense of God's love for her and for me; His healing of her was not the evidence of His love for us--Jesus' dying on the cross was. Not to say that I didn't wish everyday that God would heal her. I still wish He would have...it is so empty here without her.

But--Annie belonged to Jesus, she was not mine. And the reality that Annie is healed in heaven is not some lame platitude to make us all feel better. Annie is healed now--a fact that relates right back to the cross that Jesus was obedient to die on. Because if Jesus had not died for our sins and risen from the grave, then Annie would also be dead. But Jesus is alive today, and Annie is too.

Jean

"But in fact Christ has been raised from the dead, the firstfruits of those who have fallen asleep." 1 Corinthians 15:20

Happy Birthday, Annie

2011-04-07T07:40:00.000-07:00

I'm sitting here this morning, wrapped up in Annie's pink blanket you can see in this picture. I took this on March 20th, and in it, you can see the early birthday card Annie received from her 10 year old twin cousins, Grace & Aileen. Their mother, Lorraine, is my oldest sister, Susan's, daughter, and has always been either early or on time in sending greeting cards. Susan always did that too, but now she is in heaven with Annie. Maybe if there are cupcakes in heaven, she can help Annie celebrate today. Weird how you think about things like that now.

Olivia is going to make some pink cupcakes today. I think you all should, too.

Jean

On Mount Zion the Lord who rules over all will prepare a feast for all of the nations. The best and richest foods and the finest aged wines will be served. On that mountain the Lord will destroy the veil of sadness that covers all of the nations. He will destroy the gloom that is spread over everyone. He will swallow up death forever.
The Lord and King will wipe away the tears from everyone's face. He will remove the shame of his people from the whole earth. The Lord has spoken. At that time they will say, "He is our God. We trusted in him, and he saved us. He is the Lord. We trusted in him. Let us be filled with joy because he saved us." Isaiah 25:6-9

Thoughts

2011-04-04T21:30:00.000-07:00

Bill and I were comparing our feelings now to what we felt four years ago. Four years ago, we were in shock, and traumatized at the event of her brain injury--the loss of our healthy little girl was almost too much to bear. The daily grief was suffocating. The fear of how she was doing was constant. But over many months, we got into the rhythm of caring for Annie, and finding joy in her progress and achievements--no matter how slow they came.

Now, we miss holding her, snuggling with her, and having her here with us. We miss her sweet voice--the "hi's, yo-ees, o-ee-a's..." But the worry of how she is doing, how many seizures she's had, does she need more hydrocortisone, and is she going to be alive when we walk into her room the next morning? is gone. We have no fear, no worry. None. Annie is safe; she is well--she is perfectly well.

Jean

For this perishable body must put on the imperishable, and this mortal body must put on immortality. When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written:
"Death is swallowed up in victory." "O death, where is your victory? O death, where is your sting?"
1 Corinthians 15:54-55

Annie, Annie, Annie

2011-03-30T15:42:00.000-07:00

My friend, Brenda, has a 6 year old daughter, Ella, who was Annie's friend before her brain injury, and a 3 1/2 year old daughter, Katya. Here is her e-mail to me from Monday:

My heart is breaking for you and your family. It is amazing how God works. He has been bringing you all to mind so much. In fact I was praying for you all this morning in the shower. Then later this morning the girls and I were in the car on the way to the dentist and Katya started saying, "Annie, Annie, Annie." Then Ella said, "We know an Annie. Mom, do you know where she is?" Katya said, "She is in heaven."

I said, "No, she is probably at home or at school." Then Ella said, "Maybe she is in the hospital." She asked if I had your number and said I should call you right then. Of course, I said no but I would call you later.

You see I had no idea that Annie had passed on to heaven on Friday. I am so sorry for your loss. We will all miss Annie.

I am here in prayer always and please let me know how else I can support you and your family.

I love you guys,

Brenda

More info...

2011-03-29T21:20:00.000-07:00

We wanted to let you know that there will also be a viewing time for Annie on Friday, April 1, from 10 am to 5 pm at Purdy and Walters at Floral Hills Cemetery, 409 Filbert Road, Lynnwood, WA 98036-4934.

Also, you may make donations in Annie's name to Union Gospel Mission, P.O. Box 202, Seattle, WA 98111-0202.

Annie's Memorial Service

2011-03-26T18:07:00.001-07:00

Please accept our invitation to join us next Saturday, April 2, 2011, to celebrate Annie's brief, but very full life. The service will begin at 11 AM, at Northlake Christian Church, 19029 North Road, Bothell, WA 98012. A reception will follow.

I need to tell you how comforting your comments have been. It's quiet around here today--no medicines to prepare, no little Miss Muffet to hold...but your love and prayers help us bear the load of grief.

Jean

Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's word, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words. 1 Thessalonians 4:13-18

God's Plan

2011-03-25T20:54:00.000-07:00

Dear Annie entered into the presence of Jesus this morning at 7:30 a.m., after succumbing to a sudden infection and resulting bacterial sepsis. She fought a good fight, and her medical team gave their all. We are heartbroken, but our comfort is knowing that she is with the Lord.

We feel your prayers,

Jean

You saw my body as it was formed.
All the days planned for me
were written in your book before I was one day old. Psalm 139:16

The Plan

2011-03-22T20:04:00.000-07:00

Well, since this weekend, Annie's gotten back up to a grand total of 25 ml./hr. of formula through her j-tube. If you remember, she was up to her goal rate of 62 ml./hr. when we were discharged, which only lasted for about 24 hours after we came home. Why? I. don't. know. So for now, we've decided to feed her via TPN, or PPN (partial parenteral nutrition) for the foreseeable future. She will have a central line placed later this week. She already has begun receiving nutrition through her IV, and is perking up from that, as well as the IV fluids she's getting.

Annie's gut may need more time to recover, or it might not recover--you never know until time passes. We will continue trying to advance the rate on her j-tube feeds, but if she can't do it, she'll at least be getting enough food through the central line. Now, the downside of parenteral nutrition is the risk of infection, as well as the increased nursing requirements of administering it. But Annie needs food, and TPN/PPN is what she can do for now.

So that's the latest. We appreciate your prayers for strength and endurance for all of us, and healing for Annie.

Jean

For who is God, except the Lord?
And who is a rock, except our God?
It is God who arms me with strength,
And makes my way perfect. Psalm 18:31-32

Yo-Yo

2011-03-19T09:38:00.000-07:00

We thought she was ready to go home on Wednesday, but...she wasn't. The 24 hours we had at home were bumpy. She vomited in the middle of the night, then was gaggy/nauseated most of Thursday, then vomited three more times, and by the time we got to her pediatrician for a follow-up, she was looking sunken and grey again. The blood draw to check her electrolytes at the local lab was unsuccessful, so we went back down to the hospital to have labs drawn, and then decided we needed to admit her. Oh, and the other thing was that she had seven seizures while we were home--forgot about that detail.

The on-going problem is that we are having trouble keeping the amount of fluids/nutrition she needs inside her body. She is tolerating 40 ml./hr. formula into her GJ tube without gagging, but that isn't enough to maintain hydration. It appears that her gastric system just hasn't recovered it's pre-flu status.

So, we are problem-solving while she gets IV fluids. We increased up her hydrocortisone dose again to double. Her seizure meds will probably need to be increased. Also, she is being tested for celiac, to see if that may be contributing to her gastric problems. But her thyroid levels are in the 75% of normal, so those are not a contributing factor. I think the bottom line is that she needs to recover from the flu complication of gastroparesis--quickly.

Thank you again for your prayers,

Jean

Maybe Tomorrow?

2011-03-15T16:18:00.000-07:00

I'm going to be bold and say we're heading home tomorrow. Annie's feeds are at full rate and full strength into her GJ tube, the TPN is off as of Sunday, and the PICC line is supposed to come out later today. This weekend, she contracted an infection (presumably in her PICC line) that complicated things a bit. But she responded well to the antibiotic, and with the PICC line out, the infection source will be gone, too. If we go home tomorrow, we will have spent 26 days in the hospital. That's how strep and the flu can affect a medically complex kid.

But God has answered our prayers, and Annie is almost back on her saddle. I want you to know that we have felt your prayers--Jesus really does comfort, heal and strengthen. His angels have been with us.

I'll update after we have a few days of settling in.

Jean

As a father shows compassion to his children,
so the Lord show compassion to those who fear him.
For he knows our frame;
he remembers that we are dust.
As for man, his days are like grass;
he flourishes like a flower of the field;
for the wind passes over it, and it is gone,
and its place knows it no more.
But the steadfast love of the Lord is from everlasting to everlasting
on those who fear him,
and his righteousness to children's children,
to those who remember to keep his covenant
and remember to do his commandments.
The Lord has established his throne in the heavens,
and his kingdom rules over all.
Bless the Lord, O you his angels,
you mighty ones who do his word,
obeying the voice of his word!
Bless the Lord, all his hosts, his ministers, who do his will! Psalm 103:13-21

Day 21

2011-03-11T21:35:00.000-08:00

Annie visiting with Miss Tricia--a first-rate CNA and hairstylist.

Yes, Annie's still inpatient. And impatient. She's still walking around in her Kidwalk; still doing well; but still only up to 30 ml. of diluted formula per hour. Discharge criteria is 50 ml. Pediasure at full strength, and no TPN. So we're at least a few days away from going home, barring no speedbumps.

Now, you would think that we would get used to the hospital gig, but it never gets easy. I just keep repeating to myself that we did this last year for 7 weeks with Bill, so it's not that bad. We did this last year for 7 weeks with Bill, so it's not that bad.

The antibiotic I got at the walk-in clinic on the way home from the hospital should help. I never really recovered from the flu I shared with Annie, and it has now disguised itself as a respiratory infection. The doctor says after three days I should feel better. And we did this last year for 7 weeks with Bill, so it's not that bad.

Jean

The steadfast love of the Lord never ceases;
His mercies never come to an end;
they are new every morning;

great is your faithfulness. Lamentations 3:22-23

T.otal P.erky N.utrition

2011-03-08T20:27:00.000-08:00

As you can see, Annie is doing very well on the TPN--who cares about tube feeds anyway? She still hasn't gotten past 15 ml. per hour on her GJ feeding rate, but obviously it doesn't seem to be bothering her in the least. So, we will probably be making a plan to go home soon on TPN, and then continue to increase her tube feeds over time.

Thank you for your prayers--you can see that God is answering.

Jean

Gastroparesis

2011-03-06T15:24:00.000-08:00

Annie has suffered from varying degrees of gastroparesis for four years. We have had countless discussions with doctors and dieticians about how to cram enough food into her gut and get it to go through without coming back out--ad nauseum. Now, the strep/flu bug that got her admitted to the hospital two weeks ago has brought up this whole delayed gastric emptying problem again, front and center. The flu seems to have stopped whatever motility she DID have...and now, nothing is going down. Last night she threw up again. So, for the four times we've tried to advance her feeds, she has thrown up.

Now, for those of you not familiar with gastroparesis, it's a common problem for kids with neurological disorders. Some really smart people think that it's a vagal nerve problem that causes it--the vagus nerve doesn't work to move stuff down and out of the gut. Sounds reasonable.

What this means for Annie, is that she doesn't move food down and out. Rather, what happens is that I put the food down and she moves it up and out. She doesn't have the motility or the capacity for the amount of food she needs. It does not move DOWN and out. It moves UP and out. The result is that she has been chronically undernourished for four years. She hasn't gained any weight since September of 2007.

This was borne out in the xray taken this past week, to see if she had pneumonia. Her lungs were clear, (praise God), but the xray showed two compressed vertebrae, most likely a result of chronic undernutrition. Her bones are brittle. She doesn't get enough to eat.

Now, what makes this more complicated is there is no cure for gastroparesis. There are only things you can try to see if they work. G-tubes. GJ-tubes. TPN. Motility drugs--all of which have significant side effects, such as tardive dyskinesia or cardiac arrest. Starving also has significant side effects such as death.

So here we are between a rock and a hard place.

For you researchers, here's an interesting article called "The Riddle, Mystery, and Enigma of Gastroparesis." It's written in the context of cancer, but the possible treatments are all things on the table for Annie.

For you pray-ers, please keep Annie at the top of your list.

Jean

chron·ic (kron'ik)

2011-03-05T09:00:00.000-08:00

adj.

Of long duration. Used of a disease of slow progress and long continuance.

Annie was gaggy last night at only 15 ml./hr. of pedialyte into her jejunum. Then this morning, she seemed better, and after awhile, the rate was increased to 30 ml./hr.

Then she threw up.

When Can I Go Home?

2011-03-04T16:43:00.001-08:00

Annie got her G-J tube placed this morning, and should be getting food through her jejunum by this evening. We had to go this route because going through her stomach was getting us nowhere--she kept throwing everything up. As of yesterday, she had gained back two pounds just from the TPN, so we are thankful for that. She had been down from about 43 lbs. to 38 and change...and now she's back up to over 41. Now we'll see how she tolerates food into the jejunum, and hopefully, we can start tapering off the TPN. Then, we'll go home.

As always--we are grateful for your continued prayers.

Better

2011-03-01T19:35:00.000-08:00

God has answered many prayers--thank you so much to all of you who have been faithfully praying for us. Annie seems to have turned the corner on the flu in the last two days, and has started back on taking Pediasure via g-tube, along with her TPN. The goal is to continue to increase her g-tube feeds until she doesn't require the TPN and then assuming all goes well, be discharged.

Meanwhile--she has lost a lot of weight, and is pretty deconditioned. She used to be skinny. Now she is bony. Pray that she regain the weight she's lost and maybe even gain more. I think maybe that's what sister Olivia is telling her to do--eat!

Jean

The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for his name's sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
Surely goodness and mercy shall follow me all the days of my life,
and I shall dwell in the house of the Lord forever. Psalm 23

Extreme Ambush Makeover

2011-02-26T17:54:00.000-08:00

Annie had a rough morning, but this afternoon was more interactive, listening to the books that Miss Andrea read to her. Then the nurses came in and gave her an Extreme Ambush Makeover:

Pretty amazing, huh? She is wearing the pretty pink hospital gown that Grandmommie made her four years ago. It still fits.

2011-02-25T20:26:00.000-08:00

Annie got a PICC line placed today for TPN. In a nutshell, she got a central IV line so she can get food into her body. She did well in surgery, but is cranky tonight--pray that we stay on top of any pain she has.

For some reason, she has not been able to keep any food down--even small, diluted amounts of formula. So that's why the PICC line. Pray that this help her to regain strength and energy so she can get over the flu virus she's been fighting for a week.

I'd add more detail to this post, but I also have the flu and am having more word-finding difficulties than usual.

Jean

The Lord will take care of him when he is lying sick in bed. He will make him well again. Psalm 41:3

Sick Annie

2011-02-23T16:56:00.000-08:00

Annie's been in the hospital since Saturday, with what started as a Strep infection and morphed into influenza B. And just in case your next question is "Did she get a flu shot?" the answer is yes, she did. In fact, we both got flu shots, but on Sunday I came down with it, too. And Bill just got over a violent stomach virus that Jack has now. But I digress.

She's been on IV fluids and g-tube Pedialyte for most of the week, along with triple-dose hydrocortisone. The goal has been to get her to tolerate maintenance g-tube feeds of 1/2 Pedialyte--1/2 Pediasure (60 ml./hr.) without any supplementary IV fluids. But every time we try to increase the feeds up to that rate, she throws up.

We are finding that 1/2 Pediasure in the mix is too much, because as of 2 PM today, she threw everything up again--her gut just is not moving anything through. So, we're back on IV fluids, and later tonight, we will try just Pedialyte and see if she can tolerate that by itself.

Thank you for your prayers...again.

Jean

Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:16-18

Happy Valentine's Day

2011-02-14T04:00:00.000-08:00

Today is a good day to acknowledge Mr. Bill, the "Determined Guardian" of our family, and my support, helper, encourager, comedian, prayer partner, and faithful friend. He is a gift from God. He lives out the command to love his wife just as Christ loved the church and gave Himself up for her. (Eph. 5:25)

Every morning at 6 AM, (if Annie sleeps that long) Bill gets up with me and we "do Annie" together--getting her food bag and medicines ready, changing her, picking her up out of her bed and carrying her out to the living room recliner to snooze on Daddy's lap while I get ready for the day. Every night he comes home from work and reads and visits with her after dinner. And, of course, that's just Annie. He loves and builds into the lives of each of our seven children, and prays for each one of them every day.

You might wonder why the big deal over a guy who's just doing his job, being a husband and dad. Well, it's a big deal to me, because I grew up without a dad. He quit when I was about 8. Just up and left.

Bill is no quitter. He loves Jesus, me, and our children, and shows it by giving himself up for us--every single day, whether he feels like it or not. I am blessed.

Jean

Many claim to have love that never fails.

But who can find a faithful man?

Anyone who does what is right lives without blame.

Blessed are his children after him. Proverbs 20:6-7

A.C.T. N.O.W.

2011-02-07T13:45:00.000-08:00

Here's a mnemonic to remember common symptoms of Addison's so that when you see them, you ACT NOW, and go to a doctor/ER immediately to get an ACTH test.

Anxiety (from low blood sugar)
Crave salt/Constipation (from low sodium)
Tanned and Tired

Nausea/vomiting
Orthostatic hypotension (lightheadedness when you stand up)
Weight loss

Addison's is an endocrine disease of the adrenal glands. When the adrenal glands don't produce enough cortisol to maintain blood sugar, or enough aldosterone to maintain sodium and potassium, these symptoms build until a trigger like a common cold or flu sends you over a cliff into an Addisonian Crisis that culminates into cardiovascular collapse, coma and death. We found Annie in bed one morning during an Addisonian Crisis and she was rescued somewhere between "coma" and "death." But it doesn't need to happen that way. Be alert and Act Now.

Jean

Groundhog Day 2011

2011-02-02T19:02:00.000-08:00

Today, Punxsutawney Phil did not see his shadow, so an early spring is right around the corner. He also predicted 6 more weeks of football. Not sure what that's all about.

Cheeseheads vs. Terrible Tahls

2011-01-23T20:06:00.000-08:00

Today brought cause for celebration at our house because the third thing the kids learned to say after Da-da and Ma-ma, was "Go Packers." Bill has been a Packer fan since he was a boy growing up in Indiana, and his children are well-versed in the intricacies of all things green and gold.

I, however, am from a small town north of Pittsburgh, and took the opportunity tonight to remind Bill that the Steelers have won the Superbowl 6 times, which is, yes, TWICE as many times as Green Bay has won.

Not that I rilly care about the Stillers n'at.

Jean

Four Years

2011-01-21T21:07:00.000-08:00

It was four years ago this morning that Annie had an Addisonian Crisis that resulted in her brain injury. She was three and a half years old when it happened, so she has been sick longer than she was healthy in her little life. I'm still not used to it.

Yesterday she was crying and scowling and her facial expression briefly reminded me of what she used to look like when she'd get mad about something. It was as if a veil on her face lifted for a tiny second and I caught a glimpse of the Annie who used to be. Even though she was mad, I loved watching her yesterday...and I know she's still in there. I will just keep waiting for her to come out.

You know what helps me wait? Stories about people who waited for a long time, and then finally had their prayers answered. Like Abraham and Sarah--they waited 25 years before their son Isaac was born. Abraham was 100 and Sarah was 99. Hard to believe, but with God all things are possible, right?

Then there was Joseph who was stuck in prison for about 13 years before he became the 2nd in command in Egypt, and then waited about 9 more years before he was reunited with his little brother and father. Over 20 years of waiting.

Jesus healed a woman who was crippled for 18 years. He healed a man by the pool of Bethesda who had been an invalid for 38 years.

I have a friend whose dad slowly lost his sight over the course of a few years and then was blind for 7 years after that. Then God led him to a doctor who gave him medicine that restored his sight.

So far I've only waited four years. I'll keep waiting and praying.

Jean

They who wait for the Lord shall renew their strength;

they shall mount up with wings like eagles;

they shall run and not be weary;

they shall walk and not faint. Isaiah 40:31

Sleepless...

2011-01-20T22:00:00.000-08:00

I can't tell you how many posts I've started in the last month, after I have put Annie in bed, only to be interrupted by her gagging herself. I don't know what's different from a few months ago, but we have been struggling to get her to go to sleep and STAY asleep for quite awhile now...so frustrating. We've tried a few different things, but none have worked real well. Last night we were up at 1 and 4 am.

Appreciate your prayers...and good ideas.

Jean

Listen, I tell you a mystery; We will not all sleep, but we will all be changed--" 1 Corinthians 15:51

Out with the Old...

2011-01-08T15:00:00.000-08:00

In with the New. Happy New Year everyone, and no, I haven't gone anywhere. It just has taken me until now to put away all the Christmas decorations and gather my thoughts.

Last week when everyone at my house was experiencing the post-Christmas blues, I decided to haul out the two huge Rubbermaid storage containers where I keep all the photos from the last 30 years. I figured it would be a good way to remember the past while making plans for the future. I also wanted to arrange the photos in some semblance of order--putting them in Zip-loc bags according to year. Maybe by our 40th wedding anniversary, they'll magically find their way into albums.

As I sifted through the piles of pictures, looking at each new baby, who turned into a toddler, who stood still for a toothless first day of school photo, I was struck by the sense of innocence in the eyes of our kids. Not that we didn't have our share of struggles, but there was an expectancy that life would follow a pattern: birth, early years, school, growing up, becoming an adult, marriage, kids--the usual routine. That innocence was interrupted when Bill got sick in the late 90's. You could see it in the faces in the pictures--a sense of heaviness and dread.

But, as you know if you've read this blog from the beginning, or if you know us--all of that was swept away when God miraculously healed Bill. The pictures of our home group celebrating around our kitchen table, the kids surrounding Bill as he held up the cake that says, "Happy Healing!"--so fun to remember that time.

I also noticed something else while looking at all that history: Bill and I have lived in the same house for 20 years, and have driven the same van for almost that long. Okay, not the same house and van, but identical ones--two identical houses and two identical vans. I always imagine myself to be adventurous and open to change...but the pictures tell another story. What does this tell me about the likelihood of following through on my New Year's resolutions to...change?! We are such boring creatures of habit. A more positive spin would be that we're stable. I'll go with that.

So, our pastor said last week that if we're going to follow through on resolutions, we need to not just "hope" for change, we need to make a plan. I have some ideas for plans for the coming year. Bill and I are going to nail some down on a day trip this week. I'll let you know what we come up with. Meanwhile, I need to get these pictures organized.

How about you?

Jean

For it is God who works in you, both to will and to work for his good pleasure. Philippians 2:13

Gifts

2010-12-25T20:16:00.000-08:00

We walked into the Christmas Eve service last night at our church and instead of going straight into Annie's classroom, we made a right turn into the main auditorium. The service was geared toward families, so all the kids were with their parents. Only some kids didn't want to be with their parents, they wanted to be in their classrooms. So when we didn't steer Annie's wheelchair into the hallway leading to her classroom, the whining began. Now, usually when there's a conflict of opinion between the princess and her parents, we try to divert her attention by strolling her around. Strolling didn't help last night. Nor did going into the cry/screaming room to sit with her mom. Pretty much nothing was going to appease her.

Do you know how to discipline a 7 year old in a wheelchair? Great, neither do we. So after Bill and I traded off awhile in an effort to get the decibel level down below Hark the Herald Angels Sing, I gave up--or gave in--and went outside and put her in the van. Must've been what she wanted, because she immediately stopped yelling. So we sat inside the van for an hour while I sang Christmas carols, and she sat there and smiled. I was not smiling.

You know the reason why Annie was so obstinate last night? It came to me about 11:36 PM. It's because she hasn't been having seizures, and now again has an opinion about who, what, where and how long--everything. Her seizure activity waxes and wanes, as does anyone's who has Lennox-Gastaut, but even after almost four years, I'm always a day or two behind: Oh, she hasn't had a seizure in 2 days--that's why she's got attitude. Or, oh, she's been seizing--that's why she hasn't been drinking from her cup.

So, I am thankful for the gift of no seizures, even when it comes with the behavior management string attached. In fact, I'm thankful for many gifts I got this Christmas--especially the ones that weren't under the tree! Gifts like a husband who is alive and well this Christmas and who came out into the parking lot looking for me while I was singing carols to Her Grumpiness. (He offered to switch off with me, but I was resigned to missing the service, and told him to go back in.)

Gifts like older children who patiently support, endure, help and love Annie.

And gifts like a reason to sing Christmas carols in the van. I've said it before, but if it weren't for Jesus coming to earth, dying on a cross for my sin, and giving me the gift of eternal life, I would be hopeless. But sitting there last night, I remembered that someday we'll be in heaven, Annie will be healed, and I'll be listening to her sing Christmas carols.

Jean

Hark the herald angels sing,

Glory to the newborn King!

Peace on earth and mercy mild,

God and sinners reconciled!

Charles Wesley

Remembering

2010-12-11T20:40:00.000-08:00

Last year, at just about this time, a doctor pulled me out of Bill's hospital room and said, "Call whoever needs to see Bill, and call whoever you need to come and support you. He's bleeding internally, and we're going to try really hard--but he could die."

We knew something had been brewing--he hadn't been feeling well since Thanksgiving--but that day he had been very uncomfortable, so we went down to the hospital. In the aid car. And that night they discovered a GIST tumor that was bleeding, and was also conveniently located on top of an artery connected to his aorta.

After they moved him to ICU, and had him hooked up to a hose of lifesaving blood, he started whispering instructions to me. I debated in my mind: If I listen to him too closely, he's going to think that I think he's dying. Then maybe he'll just up and do that...which will be bad. So maybe I should try and convince him that he's going to be fine, and then maybe he will be...which will be good. So I told him he was going to be fine, and to quit telling me what to do with the mortgage. And then we prayed. I prayed, our kids prayed, and then many of you prayed--a lot. And God saved his life that night.

For seven weeks we continued praying as Bill went through one stomach surgery, and then another, and then another. Finally, on February 5th, he came home. He was back to work at the end of February, and back to his old self sometime in April.

My point in telling you this is: no one knows when their time here on earth is up. We might have some warning, or we might not. But one thing's for sure--we're all going to die. Bill almost died last December 11th. And if he had, he would have been immediately present with the Lord. He has that confidence, as does anyone who has put their trust, not in their good works, but in the work that Jesus did on the cross.

It's good for me to remember this at Christmas as I'm rushing around shopping or whatever it is I'm doing that often doesn't matter in the eternal scheme of things. I need to quiet my mind and remember--Jesus came to earth to save me from my sins, to walk with me through this life, and to give me hope that when my time here on earth is done, I will be with Him forever. It's the greatest gift of all.

Jean

For unto you is born this day in the city of David a Savior, who is Christ the Lord. Luke 2:11

Santa sensory overload

2010-12-04T21:12:00.000-08:00

Annie had an appointment this afternoon with the Man in Red. Northwest Special Families sponsors this annual event where children with disabilities can visit with Santa in an environment that is just right for them. We had an appointment for 2:20 PM--as opposed to standing in line for an hour at the mall--and Annie was able to have quiet, one-on-one time to discuss her Christmas list.

Now, I was unable to be there because of a class on disability advocacy that I had to attend, so Bill and Olivia volunteered to oversee this adventure. First, Bill took her to the (insanely crowded) mall to get her a new pair of black patent Mary Jane's. Then after Olivia helped her put on the Christmas dress from Aunt Susie, they were off to see Santa.

Now, I don't know what was on Annie's list--but I know it wasn't $10's or $20's--or real estate. But from what I can gather from the picture, what she really wanted was for Santa to shave, because 3 seconds after this was taken, she started retching. My guess is the beard probably brushed too close her face. Soft, fuzzy stuff anywhere near her face is major sensory overload. Olivia noticed the tell-tale signs first. "Dad, I think Annie's going to throw up." Bill immediately leapt into action, tweaking his back in the process. He grabbed Annie just in time to divert the explosion from Santa's velvet suit to his sweatshirt and jeans--and onto the carpet. The dress was pretty much drenched, too.

The people at Northwest Special Families were very kind and gracious, as was Santa. I'm thinking that I'll probably be elected to take her next year.

Jean

"His droll little mouth was drawn up like a bow,

and the beard of his chin was as white as the snow."

A Visit From St. Nicholas by Clement C. Moore

Snow Day

2010-11-23T21:03:00.001-08:00

Jack-Jack-Jack, (Annie's translation), took her out for a walk in the snow today. It was a beautiful day for polar bears--sunny, bright and fa-reezing. The high was 24 degrees; tomorrow will top off at a balmy 28 degrees before going down to 14 at night. Brrr.

Annie is still plodding along with tasting stuff. Today we tried a little Key Lime yogurt. She wasn't thrilled with it, but she didn't gag. She hasn't been feeling very well the last couple of days...not sure why, but I suspect the high-calorie formula we've been trying is making her a little green around the gills. So I don't think she'll be eating pumpkin pie on Thanksgiving, but she may taste it.

I'm getting a little more focused on transitioning her to a real-food blenderized diet. Like I said, the high calorie formula doesn't seem to be digesting easily, so today I bagged it, and just threw together a bunch of real food and gave her that through her g-tube. She seemed to tolerate it okay. Eventually I'd like to move to a modified Atkins diet, just to see if we can get rid of more seizures. Maybe if we can get rid of her seizures, then she'll eat. Maybe.

She really likes sitting in her Rifton Activity chair at the table, though, so I am thankful for that--and for big brother Jack-Jack-Jack who likes to take Annie for walks in the snow.

Jean

Feeding Therapy update

2010-11-14T18:32:00.000-08:00

As a correction from the last post, it turns out that Banzel may not cause too much of an appetite loss after all--but we are still struggling with motivating Annie to eat. The oral defensiveness persists, although she is allowing food around her mouth and face...which, I guess is progress. But no food in the mouth, just around the mouth. I should try that for a pre-holiday weight loss program...but I digress.

We have increased her calories almost up to normal, because she just wasn't making that transition to eating quick enough, and was losing weight too fast. And we are continuing with the program of sitting at the table at least 3X a day for 20-25 minutes, reading and taking tastes. I'm glad I have tools to keep her in a routine of at least touching the food, and sometimes allowing tastes, but it is slow going. Very slooooooooow. Do I sound impatient?

Meanwhile, I'm going to pursue the whole blenderized diet thing, because it has worked wonders on her gastrointestinal production. I'll spare you the details, but as Martha would say, It's a good thing.

I do appreciate your prayers--we need them!

Jean

Continue earnestly in prayer, being vigilant in it with thanksgiving. Colossians 4:2

Day 10

2010-11-10T20:47:00.000-08:00

Here's an overview of Annie's progress after a week and a half of feeding therapy:

1. She willingly touches an empty spoon by leaning forward and either touching or biting it.

2. She is off the food pump during the day and receives boluses, bringing the 2 1/2 hr long feeding times down to about 1/2 hour or less.

3. She is able to sit at the table in her Activity Chair for 25 minutes at a time--me reading to her while she tastes and tries new foods.

4. Before feeding therapy, she would bite carrots and apple consistently, as well as occasionally bite Cheez-its, Ritz crackers, or goldfish. Now she does all of that, and is getting proficient at eating peanut butter from a spoon or dipped on a carrot or apple. Today she was also taking tiny bites of Pirate Booty, and then chewing and swallowing it.

She had been on 30% calories for a few days, with the thought that decreasing her calories would kick-start an appetite. Then we discovered from dietician, Kim, that one of her seizure meds, Banzel, is "the worst" at suppressing a person's appetite. So, we had to rethink our approach and expectations, with the understanding that because she may never have a huge appetite, self-feeding may take more time. But we know that things take time, eh?

All in all, I am encouraged by her progress, and feel like I finally have some tools to help her learn to eat again. Karen Quinn-Shea and Danielle Dolezal have been wise and patient coaches in helping Annie and I work on this. I would recommend them to anyone looking for help in overcoming feeding aversion issues.

It's interesting, as I was talking with one of the clinicians today, they said that when a decision is made to place a g-tube, there should be a plan in place as to when or how the g-tube comes out. In other words, let's not send kids home with g-tubes without some support in getting them off of them, if it's at all feasible. Now, in Annie's case, she gets so many meds, it seems like she will always have a g-tube--a reality I can deal with. She also has frequent episodes of seizure activity and medical low-points, all of which make having a g-tube almost a necessity. But, to be able to eat by mouth, with her family, at the dining room table, is such a quality of life issue, and I am very happy that we are closer to achieving that goal. Very happy.

And, very tired. Thanks again for all of your prayers. We know she has been virtually seizure-free and healthy and cooperative and patient because God has answered your prayers.

Jean

What day is it?

2010-11-06T21:04:00.000-07:00

I had big plans of updating our progress in Feeding 101 on a daily basis, but I had misjudged how exhausting doing something new can be. Like when you start a new job, or when you become a new mom--you figure it's a good day when you remember to brush your teeth. That's where I am. And, yes, I have brushed my teeth at least 7 times in the last 7 days.

So, today we finished our first week of intensive feeding therapy. Each day, the goal is to sit down with Annie 4x, for 20-25 minutes, and in a calm, relaxed way introduce new food. Yeah, right. Smile, chat, ignore the gags and watery eyes. "Annie likes crackers. Annie likes apple. Annie likes carrot. Annie likes peanut butter." Fortunately, she keeps touching the spoon with her lips, occasionally opens her mouth a bit, and continues to persevere through the gags. She really has been a trooper, and quite patient through all the "newness" of this routine.

And, in an effort to prepare her little system for real food, we started feeding her a combination of 1/2 her regular formula mixed with 1/2 real food--or what is known in g-tube circles as a "blenderized diet." I think the plan is to transition her to a complete blenderized diet, maybe next week. Her calories have been cut 50% so that she might develop an appetite, and her weight is being monitored closely. It's assumed that she will lose some weight as she learns to eat, but I think that especially in Annie's case where she is already on the lean side, they really want to see her begin to eat significant amounts of food...quickly.

Today she had tiny licks of peanut butter, strawberry jam, applesauce, and ketchup as well as tiny bites of carrot and apple. She didn't like the Pringles or Cheez-its. She hasn't been too keen on the Veggie sticks either for some reason. So tonight I went to the store and slowly pushed my cart up and down the aisles trying to come up with something that she might like. I got a few different kinds of yogurt, flavor-blasted goldfish, a few different kinds of baby food, and dill pickles. A few people have mentioned that sometimes kids who haven't eaten in awhile like the strong flavors. We'll see how it goes tomorrow.

My prayer is that she will turn a corner in the next few days--tomorrow would be good--and open her mouth and willingly receive a spoonful of real food. I would so love to have her eating real food again. And I know I need to be thankful for the progress we've made--but she needs to begin to get the calories in her mouth--not just on her shirt--sooner rather than later!

Grateful for all your prayers,

Jean

Gracious words are like a honeycomb, sweetness to the soul and health to the body. Proverbs 16:24

Day 3

2010-11-03T21:53:00.000-07:00

Annie is getting into a groove of three practice meals a day. I put her in her Activity Chair, open one of her favorite books and begin to read. The catch is, I don't turn the page until she tastes, licks or otherwise touches whatever I put in front of her: a spoon, a spoon with a bit of yogurt, a chip, a veggie stick, a small carrot, or a slice of apple.

It goes like this: "Brown bear, brown bear, what do you see? I see a Red Bird looking at me. Brown Bear loves apple. Mmmm. Annie loves apple, too." Then I put the apple in front of her, and wait for her to lean forward to taste--which she does, most of the time. Anyway--she's doing well, and hopefully, soon, she'll be actually biting, chewing, eating and swallowing.

Meanwhile, you're praying, right?

Jean

Day One

2010-11-01T19:14:00.000-07:00

We had three appointments through the day to work on feeding. The first two went pretty much like they do at home. I offer the food, Annie throws it on the floor. Actually, she did taste the apple twice. Under duress. We taped it so they could document her progress, and to brainstorm ways to overcome her charming behavior. Actually, there are times at school with nurse Patty and at home with me that she IS cooperative and does taste food. Today just wasn't one of those days.

The last appointment was to nail down how/when we'll titrate her calories down. Typically, when you've cut kid's formula calories in half, that's when their appetite kicks in and they begin to be interested in eating. We're going slowly so that we don't add undue stress to her system, but not so slow that she doesn't make progress.

Please pray that Annie stays healthy, and that the therapists have wisdom in everything. This is a group effort--and I appreciate your work in prayer!

Jean

Then many will give thanks on our behalf for the gracious favor granted to us in answer to the prayers of many. 2 Corinthians 1:11b

Tinkerbell

2010-10-31T21:20:00.000-07:00

Annie dressed up as Tinkerbell for the Harvest Party yesterday at Mars Hill. We ventured into the bouncy house for awhile & Bill got this picture. Annie actually liked making the thing bounce. Some kind of fun.

But now I think that the last of the trick or treaters has come through, so I need to get ready for feeding therapy that starts this week. They said to bring food--leftover Halloween candy?--but didn't mention the 3 changes of clothing I'm packing just in case.

Jean

Foodoir

2010-10-25T20:37:00.000-07:00

For the next few weeks, I'll be writing a foodoir as Annie begins intensive feeding therapy. We've been warming her up the last few weeks with the carrots, apples, Pirate's Booty, big Cheez-its, and Cheetos her nurse offers her each day at lunch. She's tasting, biting and licking, but not doing a whole lot of chewing and swallowing. That will come later...

...when we pull out all the stops and she begins eating remediation. Feasting 101. Exploring your inner foodie. Starting November 1st, check in here for the latest on dining with Annie. You will get a blow by blow of every morsel and crumb that goes past her teeth. Never thought that eating could be such a big deal, huh? My goal is that by Thanksgiving, she'll be fighting her brothers for a piece of pumpkin pie. Now that would be something to be thankful for!

Please be praying for no seizures, and for her happy cooperation with the team who will lead us in this gastronomic adventure.

Jean

Seizureless in Seattle

2010-10-14T21:21:00.000-07:00

Last time I wrote on October 5th, Annie was into her 2nd week of cycling low with tons of seizure activity. It continued on until early this week--2 1/2 weeks for anyone who's counting--and today she actually had her first day of NO seizures. These last couple of weeks have been horrible and her seizures relentless--usually at least 8 a day--with lots of little ones mixed in. For her to be seizureless today borders on miraculous. Amazing. Thank You, Lord.

This is especially important now, because she is scheduled for intensive feeding therapy beginning in November, and continuing for at least two weeks, maybe three. This will be an adventure, and we will need your prayers every day!

It's interesting that today, her first day of no seizures, she was quite receptive to eating. I sat her down on the kitchen floor while I fixed her evening meds, and we were just visiting about the day, when I remembered that Nurse Patty had put some leftover snacks from lunchtime in her bag. Now, for the past couple of weeks, anytime anything has been offered to her, she has refused it. Probably because she has been so groggy and out of it. But today, as she was sitting in the kitchen, I offered her Cheetos, and she leaned forward, bit off a little bite, chewed it, and swallowed it. So, she seems to know when she can and can't handle food, and when she's alert, she doesn't seem to be near as averse to the idea of eating as she has been in the past. It really all seems to hinge on how she feels physically.

Anyway--it is an answer to prayer that she is doing so well now. Thank you for your prayers!

Jean

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4

Seizures don't rock

2010-10-05T19:03:00.000-07:00

Annie's had a cold this past week and a half--sneezing being her most obvious symptom that something isn't quite right. That and the number of seizures she's had each day. Yesterday she had 8. Today she's "only" had about 4, but she keeps bobbing her head like there are more subclinical ones...she just isn't tracking like she usually does. Occasionally, she'll perk up and look alert, and then drift back into her glazed-over stares.

I've had her on double dose hydrocortisone the whole week, which helps with her Addison's, but I suspect actually brings on more seizures because of the spike in blood sugar it causes. Very frustrating. Today I started bringing her back down to normal hydro dose...we'll see how she does.

I called her neurologist, and he says she's maxed out on the Banzel--the one anti-seizure med that has been the most effective against her drop seizures--so we can't increase the dose. The other drug that helps with her absence seizures is Lamictal, and we can increase that dose, so we will, beginning tomorrow morning.

Her main seizure types are drop and absence--which is common with Lennox-Gastaut seizure disorder. The other thing that is common with LG is a waxing and waning of seizure activity. But in Annie's case, I never know if the seizures are simply there for no particular reason, or if they are caused by illness, or if they are brought on by the increased doses of hydrocortisone that I give her when she's sick. But I do notice that shortly after I give her the hydrocortisone, she seizes. Not always, but often.

Please pray that this seizure pattern end, and that she return quickly to her lively self.

Thanks--

Jean

Return, O Lord, how long?

And have compassion on Your servants.

Oh, satisfy us early with Your mercy,

That we may rejoice and be glad all our days!

Make us glad according to the days in which You have afflicted us,

the years in which we have seen evil.

Let Your work appear to Your servants,

And Your glory to their children. Psalm 90: 13-16

Rifton Activity Chair Rocks!

2010-10-03T16:41:00.000-07:00

We picked up Annie's totally awesome Activity Chair yesterday.

Now she can sit up to the dining room table with us at dinnertime.

...who knows, maybe she'll even eat!

Side Benefits

2010-09-29T08:57:00.000-07:00

You're going to want to put your fork down for this one.

Big brother Jack came home the other day from his parcel clerk job at Fred Meyer, a local grocery chain. In addition to collecting carts and sweeping floors, he services the restrooms, and while he was cleaning the men's restroom that day, a young boy rushed into one of the stalls, slammed the door and started heaving. After awhile the boy came out, and Jack asked him, "Hey, buddy, are you okay?" The kid wiped his mouth with his sleeve and mumbled, "Yeah," and hurried out. Jack went over to the stall to inspect his next chore, pushed open the door and looked inside. It appeared that the kid had hit every surface except the toilet bowl. "Well, at least I'm used to this," Jack thought, and went to work on the mess.

David, who is a host at a local cafe, came home the same day with a similar story, this time involving an elderly woman. I'll spare you the details on that one.

When I think of the ways Annie's illness has had a positive effect on my other children, my mind usually goes to things like, they're more compassionate to the disabled. I don't immediately connect that willingly cleaning up after the weak is now part of their resume. God is good.

Jean

We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. Romans 5:3-5

What's Gnu?

2010-09-17T13:27:00.000-07:00

A couple of things: first, Annie's Rifton Activity Chair that I wrote about in this post has been approved by our insurance company, so it should arrive soon. The timing is perfect, because she is also in the queue for an intensive outpatient feeding program, set to begin sometime in October--we hope. That's the nature of obtaining rehab, therapy, equipment, etc...it usually involves a whole lot of waiting and praying: waiting for space--or stuff--to be available and praying for the resources to fund it. So, it appears that both will be supplied in October. I'll keep you posted.

Meanwhile, Annie is working hard with her new nurse, Miss Patty, new teacher, Miss Cindy, new PT, Miss Brenda, and new Speech teacher, Miss Meg, at her new school. She has been tooling around in her Kidwalk, taking tastes of apple, and finger-painting with shaving cream. I don't think she's thrown up yet with all of the sensory challenges, so--so far, so good. Miss Patty, no doubt, appreciates that.

Another thing that's new is my involvement with the Special Education Parent/Professional Advisory Council--or SEPAC--in our district. The group's mission is to advocate for all of the special ed kids--no matter how mild or severe their learning disabilities. There are over 2,000 kids in special ed in our district, and about 125 of them are in the life-skills program, like Annie. But all of the kids benefit when parents and district personnel work together to provide them the help they need so they can achieve the greatest success possible. Or, rather, so they may achieve the greatest that people think is impossible!

Jean

For with God nothing will be impossible. Luke 1:37

Take a look at these stories of remarkable people who struggled with learning disabilities

Doin' the Puyallup

2010-09-12T07:52:00.000-07:00

Interesting sights, sounds and smells here at the Puyallup Fair.

Back to School

2010-09-09T14:50:00.000-07:00

First day back to school! Let's wait in the garage until the bus comes.

Still waiting...

The bus finally arrives:

Annie's nurse gets off the bus to help load her in:

Annie gets on the bus:

Annie leaves on the bus:

After I follow Annie to school to drop off all her supplies, I see this sign outside her classroom.

I don't get it.

Okay, I did follow the nurse as she wheeled Annie into her classroom. She just lit up when she saw all her friends from last year, and said "Hi!" as she looked around at all of them. It was cool to see how much she enjoys school. She was exhausted when she got home, but was raring to go back at it this morning.

Jean

Finding the Silver Lining

2010-09-04T20:28:00.000-07:00

Annie decided to stop drinking from her sippy cup about a month ago. She was drinking less and less toward the end of July, probably because the lid on the cup was getting rough spots on it from her teeth. But because I couldn't find a grocery store that stocked the same type and color of lid as she had before, I got a purple lid instead of the pink one. And, being the sensorily-rigid kid she is now, she rejected it. Purple was not pink, and pink was the only acceptable color for a sippy cup lid--everyone knows that. So I kept offering it to her, and even prayed about it, but she would have none of it. Of course, I then supplemented whatever she would drink from a cup with syringes of water put directly in her g-tube. It made me sad that she seemed to be in danger of losing this skill--drinking from a sippy cup.

Until last night when we were in the ER and Annie leaned forward to drink from my bottle of water. I asked Bill to grab her sippy cup out of her bag, and offered it to her. While she was drinking, Bill asked, "So when did she start drinking out of her sippy cup again?" I was holding my breath while she sipped--I didn't want to say anything lest she realize what she was doing and decide to reject the purple lid again.

You want to know why we were in the ER. Well, at 10:30 last night I was asking myself the same question. So here's the Reader's Digest version: Yesterday afternoon, I was in the kitchen getting something for Annie--I forget what. While I was in the kitchen, I think Annie decided to reach forward for a toy that was out of her reach. Typically, when this has happened in the past, she might reach forward to the point of getting up on her knees and then falling forward onto her tummy--a position that she hates. So I was in the kitchen when I heard Annie starting to cry. I went back into the living room where I found Annie on her tummy, trying to turn back over and sit up again. Only her right shoulder was stuck and since she doesn't use her arms/hands to move herself, she just twists and turns and it wasn't working--so I picked her up and she was hysterical, because I think she also bit her tongue in the fall forward. So I began calling--okay--YELLING--for Olivia and Jack, who were in other places of the house wondering who died, and did they really want to go find out?

They eventually were sucked into the vortex of screaming and crying in the living room, and I exited to the kitchen again to frantically decide how much hydrocortisone and Tylenol Annie needed to recover from this insanity. After giving her 10 mg. of hydrocortisone, and getting out her favorite toy, the decibel level began to return to normal. I checked out her arms and shoulders and couldn't see any deformity, but she whimpered a few times when she moved her right arm, so around 7 PM, we decided to take her down to the ER. (Did I say that this was the Reader's Digest Version?)

At the ER, they felt around her arms and her shoulders and her collar bones and could find nothing amiss. At 10:30, it was agreed on that we would keep an eye on her for a day or so, and if she continued to complain, we'd go back down for an xray. Well, here we are the next evening, and she seems fine--and she's still drinking from her purple sippy cup.

Jean

"And we know that all things work together for good to those who love God, to those who are called according to His purpose." Romans 8:28

Farm Fresh Food

2010-08-26T20:38:00.000-07:00

There are two food items that I am hard-pressed to do without: dark chocolate, and the official state beverage, coffee. But I'm going to add a third category, and that is anything from Full Circle Farm. My friend, Andrea--who doesn't like chocolate but for some reason is still my friend--introduced me to an organic farm out in Carnation that for $44 a week delivers a generous box of organic fruits and vegetables to my doorstep every Thursday morning before 6 AM.

This week I got loads of salad greens, carrots, rainbow chard, zucchini, plums, peaches, onions, and cucumbers. The week before I got blueberries, plums, potatoes, oranges, avocados, donut peaches, Crimini mushrooms, and cool purple carrots as well as the load of salad greens.

If you decide you don't want to eat as much as we do, you can have a smaller box delivered for $34 a week. I haven't comparison shopped at the grocery store, but I'm thinking it's cheaper. And it's right there on my front porch every Thursday morning.

For someone whose schedule is filled with doctor visits, medicine, and therapy, having farm fresh food delivered to your doorstep is almost heaven. I love it.

Jean

Eat, Pray, Love--and this woman's quest for telling the truth

2010-08-16T19:51:00.000-07:00

Here's a thoughtful commentary on the new movie "Eat, Pray, Love." I know this has nothing to do with Addison's, brain injury, or seizures. But in the eternal view of things, it's much more important, so I wanted to share it: http://jrvassar.posterous.com/eat-pray-love-the-new-spirituality-and-the-su

Jean

Jesus said to him, "I am the way, the truth, and the life. No one comes to the Father except through Me." John 14:6

What I know about Addison's Disease

2010-08-11T23:00:00.000-07:00

Question: What do Addison's Disease, Alzheimer's and Autism have in common? Answer: They are all listed on the National Organization of Rare Diseases. And although all of these are uncommon diseases, most people do have a general understanding of what Alzheimer's and Autism are. But ask a man on the street what Addison's disease is, and he'll likely scratch his head, and say "Huh?"

We need to change that.

Addison's is a disease of the adrenal glands. When the adrenal glands are damaged--because of an autoimmune disorder, for instance--they don't produce enough of the hormones cortisol or (sometimes) aldosterone. Cortisol helps the body respond to stress. It also helps maintain blood pressure and cardiovascular function, as well as the right levels of glucose--a form of sugar used for energy--in the blood. Aldosterone helps maintain blood pressure and water and salt balance in the body. When you don't have enough aldosterone, the kidneys don't regulate water and salt, so you lose both blood volume and pressure. http://endocrine.niddk.nih.gov/pubs/addison/addison.htm

Now, this is how undiagnosed Addison's disease played out for Annie. Up to the time she was almost 3, she was a normally developing child--walked, talked, sang and danced. But she also:

1. Took really long naps--because she didn't have enough cortisol for energy.

2. Had chronic constipation--because her kidneys didn't regulate her water and salt.

3. Loved pepperoni, goldfish, and french fries--because she was salt-depleted, and craved salty foods. She was also anorexic, and ate like a bird.

4. Would get very dehydrated with any kind of illness--enough to warrant multiple trips to the ER.

Other symptoms of Addison's disease are nausea, leg pain, stomach pain, depression or fearfulness, and skin color changes including a bronze tan or darkened skin folds, especially on the knuckles and toes. Annie had all of those symptoms, which got progressively worse in the year or so leading up to her Addisonian Crisis. Then one night when she was 3 1/2, we put her to bed with what we thought was a little cold, and the next morning we woke up to find her in the middle of cardiovascular collapse that resulted in a severe brain injury.

So why am I writing this again? For you! Because you or someone you know might have these symptoms in the future. And if that happens, you need to RUN--don't walk--to a doctor and tell them to test for Addison's Disease. People need to be aware of this disease--and think of it when they have a feeling of exhaustion that won't go away, or are depressed, or crave salty food, or have skin color changes. A classic case is someone who is skinny, has a bronze tan, and can't get out of bed in the morning. And Addison's disease can manifest at any age--old, young, teens--anytime.

The good news is that Annie's Addison's disease is easily treated with daily doses of hydrocortisone. It is doable and it is liveable! No one has to suffer a brain injury, and no one has to die of this. They just need to be aware of it to be tested for it, and treated for it--before it is too late.

In spite of the bad thing that happened to Annie, there are a number of good things that have come out of it. My hope is that one of the good things that comes for our experience is that someone is saved from suffering a brain injury, or dying from Addison's disease, and is diagnosed early.

Jean

"Praise the Lord, O my soul, and forget not all his benefits,

Who forgives all your sins and heals all your diseases,

Who redeems your life from the pit and crowns you with love and compassion,

Who satisfies your desires with good things so that your youth is renewed like the eagle's."

Psalm 103:2-5

Mall Walk

2010-08-06T21:42:00.000-07:00

Jack and I took Annie for a mall walk in her Kidwalk this week. We were there early in the morning with the new moms and babies in strollers, retirees, and assorted diehard exercisers. Annie got lots of smiles from everyone and a few curious looks at her lime green walker with the wheels that light up. I'd like to do this a couple of times a week, early in the morning before the teenagers with too much expendable income crowd in. Anyone want to join us afterward for coffee at Starbucks?

I have to share, too, that Annie has had a run of no seizures for at least two weeks. I think the extra fludrocortisone (a drug for Addison's) is helping with this, because it helps regulate fluids in her body and brain. She had been low on sodium, with symptoms of nausea, lethargy and--seizures. The low sodium is a common problem with people who have Addison's, because the part of your adrenal glands that regulates fluid in your body is damaged. I found an interesting article that speaks about the connection between hyponatremia (low sodium) and seizures. Read more about it here: http://professionals.epilepsy.com/page/electroab_hyponatremia.html

Anyway--no seizures equals a brighter, more alert, vocal, happy Annie. Very bright. When I see her like this, I think--if we could end these seizures, she might actually have a fighting chance to make some significant progress, both physically and cognitively. Because if we could get rid of the seizures, then we could get right of the seizure medicine, which causes things like loss of balance or coordination, difficulty speaking, drowsiness, weakness, unsteady walking, blah, blah, blah. But--she is making great progress this summer. And that is good.

Jean

"He answered their prayers, because they trusted in Him." 1 Chronicles 5:20b

This just in...

2010-07-31T20:53:00.000-07:00

Thought I'd give you an update on Annie's progress this summer. She just finished ESY--short for Extended School Year--or summer school. It runs for the month of July--1 and a half hours in the morning, M-F. We were able to pack in a few extra hours of PT and OT around that brief 1 1/2 hour time, and then add a few hours with PT Kim at the clinic each week. The result has been that now Annie can--from a sitting position--reach out, grab your right hand with her left hand, and pull herself up to a supported standing position. The reaching, grabbing, and pulling are remarkable, intentional progress that we are all very happy about. In addition to that, she is tolerating hand over hand holding onto a grab bar for a few seconds.

I have also noticed when practicing this at home, that after she is standing, she turns from facing me, to face the window that looks out at the huge maple tree in our front yard, shifting her weight and moving her feet, one at a time. She likes to watch the leaves move in the breeze. Little by little, Annie keeps making progress, and we are thankful.

Jean

I can do all things through Christ who strengthens me. Philippians 4:13

Ball Pit Bazinga

2010-07-19T20:40:00.000-07:00

Last week, Annie's PT, Kim, decided to throw caution to the wind and see if Annie would tolerate the Ball Pit. If you know Annie, you know that any kind of sensory overload can send her into a retching tailspin, which usually culminates in a bath, outfit change, and wheelchair wash & detail. The goal of putting Annie in the ball pit, of course, is to acclimate her to more sensory experiences that might have carryover benefit to her oral/sensory defensiveness--in other words, if she can handle the ball pit, maybe she might take a bite of food. I know, it took me awhile to put this together, too.

So last Wednesday, PT Kim took the plunge, and put Annie in the pit. Annie's reaction was a series of three gags, followed by a tentative "I think I might like this" look, which was soon followed by a grab-one-of-the-balls toss. Her non-reaction soon drew a crowd including her school nurse, the director of special ed. summer school, and her teacher, Amanda, whose eyes were welling up with tears. Cameras came out and pictures were taken. Annie started posing with her best "I'm so cool, calm and collected" look. It was a Red Letter Day.

Since then, Annie's been in the ball pit as often as possible--with no gagging. Now, in addition to the ball pit, we're working again with a feeding therapist/psych. with the hope of qualifying for more intensive feeding therapy. I would so love to have Annie sit at the table and enjoy eating again, and that requires lots of desensitization, practice and therapy. And if you're looking for something to contribute, prayers--lots of prayers would help.

Oddly enough, one of my homework assignments with the psych this week was to videotape Annie eating at home. So today I took the video recorder out, dusted it off, and tried to find a tape that I could record over without feeling guilty about whatever I was losing. The tape in the camera had some old stuff on it, some stuff from a class project of Olivia's, and then a long piece that included Annie's 2nd birthday party. "Great," I thought, as I watched it fast-forwarding, "why did I have to find this?" And, of course, Jack was looking over my shoulder, "I want to see it! I want to see it!"

"Fine. Here. I need to go in the kitchen and fix some food for Annie."

Jack sat down and started watching the old video. "Look at this, Mom. We told her to pick up her fork, and she picked it up."

"Hmm."

"Wow...she's doing everything we tell her to...she's eating a cupcake...geez...you don't appreciate what you have until it's gone."

Jack turned off the video, put the camera down, then picked up Annie and said, "You'll do all this stuff in heaven, Annie. Won't that be fun?"

You know, I thought, maybe with enough time in the ball pit, she might do all that stuff again here, too.

Jean

"I am the Lord, the God of all mankind. Is anything too hard for me?" Jeremiah 32:27

Spa Day

2010-07-08T21:46:00.000-07:00

It is hot here in Seattle. We've broken a few records today, and may again tomorrow, although it's supposed to cool down to 90. So, this afternoon I contemplated what to do to relieve Annie's sweltering misery and decided to give her a bath, shampoo and blow dry her hair, then massage scented lotion on her hands, arms and legs and feet. So that's what we did. After her bath, I sat her down on the floor in the living room, plugged in the blow dryer, put the setting on "cool" so it wouldn't add any more heat to our already baking house, and went to work on her long, wet hair. When I was done, I put the blow dryer down on the floor and got ready to comb her hair up into a ponytail.

"No," Annie said adamantly, while reaching over to pick up the blow dryer.

"Hmm...do you want me to keep drying your hair?"

Big smile.

"Okay."

Annie turned around again with her back to me and waited for me to start brushing and drying her hair again.

"Wow," I thought. "It's been three and a half years since we've shared this much communication!"

Since the brain injury, she has been mostly passive, and only says "No, no, no," or expresses any kind of preference when she's mad, hurt, or after you've waited for many minutes for her to respond. And, it isn't unusual for you to wonder if she's really saying what you think she may have said...or not.

Today was different. It was immediate, appropriate, and clear. And she was happy when I immediately, appropriately and clearly understood what she wanted. I think I could get used to this.

I guess sometimes answers to prayer just kind of sneak up on you when you least expect it.

Jean

Ask, and you will receive, that your joy may be full. John 16:24