No news

An article in The New York Times said yesterday that No News Is Better Than Bad News, so I guess that means they're going to stop publishing or something. I am starting to think that all the bad economic news just isn't good for my already-in-winter-slump-mode-psyche. So I started reading up on all the things people did in the Depression besides make money. You know, visiting with their neighbors, going to church functions, reading books, listening to radio shows--stuff like that. I guess the pessimist in me just wants to get ready so it's not too much of a shock to my system when the bottom falls out. Why can I can hear my mother, who was born in 1930, laughing at me?

I don't have any bad news myself, but I don't have alot of new news either. Annie is plugging along, getting used to the wires in her neck and all. She really doesn't seem to be aware of them--of course, they're not turned on yet either. But overall, she seems to have taken another step up in her alertness and interaction. When I picked her up from school today and gave her a big kiss on her cheek, she started with the kissing noises too. Bright eyes and big smile too!

We go back in for a checkup in about a week, and then a few days after that, the nurse will turn the VNS on. 'Til then, let's quit with the bad news and go visit a neighbor.

Jean

“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need. So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today." Matthew 6:31-34

Annie's Auction

Wow--last night over $10,000 was raised at Annie's Benefit Auction! Thank you, Jenn Lund, for choosing to do this for your senior project, and for the many long hours you spent in procuring items, recruiting volunteers, and organizing hundreds of details. Annie is the beneficiary of your efforts, but you can look back on this event your whole life and say, "I made a difference in someone's life." Yeah, Jenn!

Many of you may not know that because Jenn's dad, Tim, had ALS, she knows firsthand the life of medical equipment, therapy appointments and doctor's visits. So much of her motivation for doing this auction sprang from an identification of Annie's world, and a desire to help her in a significant way. I'm sure your dad, Jenn, would be very proud of your accomplishment, and I know someday will tell you that himself.

Thanks, too, all of you who joined in this effort by donating items, helping host the event, and buying things. And, Lynn, you totally rocked as the Auctioneer Extraordinaire! It was a fun and blessed night that far exceeded our expectations.

I'll have pictures up soon!

Jean

Act as if what you do makes a difference. It does. ~William James

VNS--Home

After a sleepless-in-Seattle-Children's-night, Annie was discharged this afternoon, and came home to her own bed where she has been napping ever since I plopped her in it. Things seem to be going well otherwise--and after catching up on some zzz's, she should be on the way to a good recovery from the VNS surgery.

Thank you for all your prayers. We feel them.

Jean

VNS--Update

What a world we live in, that wires and batteries can be placed INSIDE the body to make it work better. Annie's new equipment was installed without any glitches this morning. She is doing well, and will be watched at the hospital overnight, just to be on the safe side.

She doesn't seem to be bothered much with the patch on her neck, she's already had some sips from her sippy cup, and aside from the IV poking her left wrist, she seems to be weathering the whole thing well.

Hopefully, we'll have her home tomorrow afternoon. Thanks again so much for your prayers--God is answering each one!

Jean

The angel of the LORD encamps all around those who fear Him,
And delivers them. Psalm 34:7

VNS Files--Placement Surgery Scheduled

So we went down to Children's today to meet everyone who has anything to do with VNS surgery. The neuro nurses, the anesthesiologist nurses, and the neurosurgeon; then we visited our favorite phlebotomist to see if Annie's blood clots fast enough.

Tonight we scrub her down with some really good antibacterial soap, withhold food after midnight, then wake her up at dark-thirty to drive down for the surgery. We're first in line tomorrow morning, so hopefully, we'll be done and out of there quickly. There is a possibility that they'll keep her overnight to make sure that everything's okay.

Your mission, should you choose to accept it, is to pray for: no complications during surgery or after, and that this VNS thing work to control her seizures. She had about 5 today, just to confirm to us that she needs the thing. We know that God can heal her without the surgery, but if surgery is the way He wants to heal her, I'll take it. I would so love for something to work, and for us to be able to get her off of at least some of the seizure meds she's on.

Thanks again for checking in, and for your prayers! I'll update as soon as I can after surgery.

Jean

Sanctity of Human Life Sunday

Two years ago on Sanctity of Human Life Sunday, our family woke up at 5:30 in the morning to the nightmare of our 3 ½ year old daughter, Annie, suffering from a seizure. I knew from her clenched jaw, staring eyes, and limp, blue, postured body that she was a thread away from death.

The medics got her to the hospital, her life was saved, and our new life caring for a severely disabled child began. I don’t believe in coincidences, and I don’t think it was a coincidence that Annie became disabled on Sanctity of Human Life Sunday. I remember thinking, “What do you want to teach me God?—what is the lesson here, in light of this day?”

One result has been a re-affirmation of my belief that God created Annie; that she is made in His image, and because she is made in the image of God, her life has value regardless of her abilities, or lack of abilities. Her life has worth in spite of her weakness and complete dependence, simply because she is made in God's image.

Let me share 3 other things that God has taught us in these last 2 years. First--an eternal viewpoint is crucial. An eternal viewpoint reminds us that this life is brief; and if Annie lives, she lives for God’s purposes, if she dies, she gets to go to heaven. We want Christ to be magnified in her body, whether by life or by death. Paul said “For to me, to live is Christ, and to die is gain.” (Philippians 1:20-21)That is my prayer for myself and for Annie.

An eternal viewpoint reminds us that life is a test of our obedience to God. Mother Teresa said that every one of the people she cared for was Jesus in disguise. I think about that with Annie—someday in heaven she is going to sit with me over a cup of coffee—there will be coffee in heaven, otherwise it wouldn’t be heaven, now, would it?—anyway, she’s going to sit with me over a cup of coffee and recite to me everything I ever did for her or said to her. And I want those words to be sweet and loving. Jesus said: “I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’ (Matthew 25:40)
 
A second thing God has taught us is that caregiving requires a team effort. The National Alliance for Caregiving reports that 1 in every 5 households are involved in caregiving roles. This means that chances are, either you will require someone to help you, or you will help someone else—or both—sometime in your life. So why should we value people who are sick? Because someday you’re gonna be sick and need someone to take care of you! I think about that with Annie—what if the roles were reversed and I was the one in the wheelchair?

I have been a caregiver 3 times—right out of high school I took care of an elderly stroke patient, then for Bill when he was sick, and now for Annie. And let me tell you: there’s no such thing as a heroic caregiver. The degree that we are doing a good job with Annie is the degree that we have a good team around us. A lot of my team lives in my house: Bill and my kids. But there have been countless times that we have been rescued by Donna and her housecleaning team, Kate and her food team, or Andrea and her garden team. Being a caregiver cannot successfully be done alone. I am not a heroic caregiver, and neither are you. We need friends who can bear this burden with us, so that we can successfully care for the people God has entrusted to us.

The last thing I’ll mention regarding what God has taught us in these last two years about the value of human life has to do with the disabled. What is a disabled person? We think disabled people are people who either can’t walk, or can’t talk, or whose brains don’t work like ours. So our culture—and sometimes even we--often look at disabled people as “less than.” In our culture, health, beauty, independence, and youth are valued. Weakness, infirmity, and the aged are de-valued.

But let me ask a question: we may be able to walk—-but can we walk on water? We might have a sharp intellect, but can we read people’s minds? We may be able to multitask, but can we hold the earth together in our hands? Can we calm the winds and the sea? Can we heal leprosy? Can we raise the dead?

Do you think God looks on us as having less value and worth because we can’t do what He can do? We need to compare our so-called abilities with God’s, regain some measure of humility, and thereby have more compassion for the weak.

We need to remember that God chose things that are powerless to shame those who are powerful. God chose things despised by the world, things counted as nothing at all, and used them to bring to nothing what the world considers important. As a result, no one can ever boast in the presence of God. (1 Corinthians 1:27-29)

We have learned through this experience with Annie that even though her body doesn’t do what we or she would like it to do, she is still “in there,” she is still “Annie,” and she is still worthy of dignity and respect. And now my other kids have a compassion for the disabled that causes them to stick up for them at school, befriend them in the cafeteria, and defend them at public bus stops. The empathy and compassion God has given them as a result of living with Annie has been a great blessing.

So—3 things:

1.An eternal viewpoint is crucial because Everyone is Jesus in Disguise.
2.Successful Caregiving is a Team Effort—There’s no such thing as a Heroic Caregiver.
3.We can’t walk on water, so we need to have compassion for those who can’t walk on concrete.

Now here we are on Sanctity of Human Life Sunday—2 years later. Would I change anything if I could? You bet. Is our lesson over? No--we're not in heaven, yet, are we? Do I look forward to Annie running, jumping, singing and dancing again? Soon—very soon!

Jean

Annie's Benefit Auction

Jenn Lund, a senior high student at our church, has organized a benefit auction for Annie's ongoing therapy. The auction is going to be on Friday, January 23, from 7-9 PM at Northlake Christian Church. If you click on the link at left, you can get all the details.

As most of you know, our daughter, Annie, sustained a catastrophic hypoxic brain injury on January 21, 2007, when she was 3 ½ years old. So we're coming up on the two year anniversary. This crisis happened at night, while she slept, and was a result of undiagnosed Addison’s disease. Addison’s Disease is also known as adrenal insufficiency, when the adrenal glands cannot mount an effective fight against infection, stress, or injury. In Annie’s case, the cause of her adrenal insufficiency is not known. An Addisonian crisis causes a precipitous drop in blood pressure and blood insulin that can result in seizures, coma and death.

By God’s grace Annie’s life was saved, but not before much of her brain had been affected. She was in a coma for about a week, on a ventilator for 5 days, and in the hospital for 52 days. She lost the ability to walk, talk, eat, and use her hands and arms. Her cognitive level has regressed to about 12 months. Fortunately, her eyesight, hearing, and swallowing were preserved. Her smile came back after 1 year, and her speech has begun to emerge after almost 2 years.

Contrary to the widely held assumption that the brain injury recovery process ends after 1 or 2 years, recent studies have shown that people can make significant functional improvements for at least 10 years post-injury. We believe that with intensive physical and cognitive therapy, Annie can relearn to walk and talk, and regain her ability to eat real food. She responds quickly to repetitive training—such as learning how to scoot down the stairs—something she mastered over Christmas vacation!

As you might imagine, the cost of physical, occupational, feeding and cognitive therapy is quite expensive, and is only partially covered by insurance. We are just now beginning to get a grasp on how to navigate through all the politics in accessing funding for the therapy that she needs to make functional gains. Unfortunately, the insurance industry is reluctant to support the long-term therapy needs of people affected by brain injury, and getting them to pay for what Annie needs is an ongoing, uphill battle.

We are so grateful to Jenn and her huge team of volunteers who are busy making this auction happen, and we'd like to invite all of you to come too.

New Pics!

Here are some pictures from the past few weeks. The top picture shows Annie, brothers Jack, Andy, Taylor, and David, sister Olivia, and cousin Kate at the reservoir in Volunteer Park in Seattle. I tried to get the Space Needle in the background, but photography isn't my strong suite, so it's behind Andy's head. Try to imagine what it might look like. The next pictures are on Christmas Day. Note the snow in the background--first white Christmas since 1990!

Jean

A happy family is but an earlier heaven.
-- John Bowring

VNS files

The neuro doctors met today to discuss Annie's candidacy for a Vagus Nerve Stimulator placement--an electrical "pacemaker" to control seizures. I guess she got voted in, because I got a call saying that they'll be scheduling her surgery soon. She continues to have little head drop seizures even with 3 seizure meds on board, so it's time to go to plan B. Or C.

We're also going back in next week to meet with the Rehab team to decide if/when Annie should go back inpatient for a couple of weeks of intensive rehab.

I would appreciate your prayers as we try to discern what to do, where to do, and when to do it. Managing her medical issues usually involves judgment calls--nothing is ever clear cut. We need wisdom!

Jean

If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. James 1:5

Mall-walking with Annie

This morning at 5:40 AM I got a recorded call from the school district superintendent saying that school was going to be 2 hours late--and no AM kindergarten for Annie--because of inclement weather. The slush on the street was at least 3/4" thick, so I was in total agreement with the decision. No telling what could happen on slushy roads when the temperature is 40 degrees.

Have I mentioned that Annie has had a long Christmas break? One week of snow days, two weeks of official break, and now we're into the fourth week, but who's counting? So instead of taking her to school, I packed her up, got in the van and braved the slush on our way to the mall. Annie loves going to the mall as long as you don't spend too much time in one place--she likes to keep moving in her wheelchair.

Telling about our trip to the mall reminds me of a list I thought of. I call it:

5 Things People Can Do for the Disabled in Public Places:

1. Smile--smiling is way better than staring.
2. Open doors for them.
3. Don't freak out when your kids ask "Why is that person in that wheelchair?"
Kids are naturally curious, and deserve a simple answer. I don't mind when kids (or adults for that matter) ask questions. You could say to the disabled person (or parent), "Do you mind if my son asks you a question?" A little boy in the elevator at Children's Hospital asked me why Annie was in the wheelchair, and I said, "Because her legs don't work as well as yours do." He then proceeded to demonstrate how high he could jump--he was onto the next thing. Kids are great, and honest questions are really okay.
4. Compliment them--notice that they are a human being with attributes besides their disability. A lady came up to Bill and Annie at the mall and said, "My, she is just all decked out in pink!" That remark was a blessing for Bill, because the lady was showing that Annie was attractive in spite of the hardware she sits in.
5. Don't park in handicapped spaces, unless you are disabled, even if the paint is so faded that you really can't tell if it's a handicapped place or not.

So that covers the essentials, at least for me. What's on your list?

Jean

Do to others whatever you would like them to do to you. This is the essence of all that is taught in the law and the prophets. Matthew 7:12

Something to Look Forward To

The fake tree is put away for another year, most of our out-of-town guests are gone, and now the winter depression is about to settle in. I think that's why New Year's resolutions were invented. To give you something to think about besides the after-holiday let down.

There's a saying that the secret to happiness is having something to do, having something to look forward to, and having someone to love. And one of my New Year's resolutions is to revamp this blog, so that'll give me something to do, and you something to look forward to. And since we all have someone to love--Annie--we should be set.

But don't you feel that sometimes, that you just need a change? January just seems like the right time to start something new. I've been giving updates on Annie's progress for almost two years, and I feel a little uncreative with a need to diversify, yet I'm undecided about what to do. Maybe you guys should give me your ideas, and the winner will get an all-expenses trip to Palm Springs. What do you think?

Jean


Your word is a lamp to my feet
And a light to my path. Psalm 119:105