What happens when 7 moms who've lost children come together for a weekend of sharing

Thank you for your prayers for my friends and me this past weekend--it was cathartic to recount stories, cry and pray with other mothers who have suffered the death of a child. Like I said in my previous post, we all knew each other from a church Bill and I attended years ago, and have reacquainted through Facebook. I was sitting there one night in December looking on FB, counting up all the women from the church who had lost children, and just felt God saying, "You guys need to get together, and we can make this happen."

The Lord brought together the details of gathering us all--two of the moms from out-of-state--and provided a warm, hospitable place at Ocean Shores to meet (thank you, Pam!). We talked through a series of questions designed to help us reflect on the details of what happened, how it affected our marriages, families, and relationship with Jesus. We also discussed what we would say to a newly bereaved mother--and what we wouldn't!

We also spent a fair amount of time eating too much, laughing, singing worship songs led by one of the moms, and dodging the waves on the beach. It was a good, fun, and healing weekend on multiple levels.

Thanks again for praying--God was there with us.

Jean

You now have a child among the angels--to whom we will soon go. So short is life that our wounds are healed almost as soon as they begin to bleed. We part, and so soon meet again. ...To you it must be a sharp cut--but our Lord has an almighty salve.  Charles Spurgeon

Missing my little pink Valentine

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?

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?

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...

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