No one ever forgets the day you find out your child has a genetic, life-long, life changing autoimmune disorder.
Alex, now a healthy, beautiful, vibrant 11 year old, once was a non-thriving, somewhat depressed, shy and often sick little girl.
When it all started, we really are not sure. She entered the world on Leap Day as a bubbly almost ten pound baby with hair you could almost braid. Looking back now, there seem to be several instances that were maybe unusual, but not that much:
A colicky baby;
projectile vomiting in the ER in Iowa one Thanksgiving,
pot belly stomach,
not too infrequent "blahness" when other children were running, laughing, exploring and having fun.
Whenever the subtle signs may have started, by the time Alex hit third grade her illness became more serious.
Addicted to Pepto Bismal, she would drink it like it was chocolate milk (attributed to school-related stress). Stomach aches that keep her from playing on her basketball team (we thought it was nerves).
And then the flu-like symptoms began. Every two months she would get the flu and vomit for four to five days. We took her to the doctor who would run your standard blood tests. They would all come back normal, not even anemic. The doctors answered our questions with "it is just the flu; it has been a bad season." The almost ten pound baby was now so thin and dehydrated you could count her ribs and she had to have IVs to be re-hydrated.
Finally, when she had the "flu" for five days in June, it was time to go to the doctor and not leave until we had some kind of an answer. Stomach x-rays and ran additional blood tests. I remember, as an afterthought, the doctor threw in "celiac" - a word we would soon get to know very well.
Not wanting anything serious. Down on my knees praying for an easy answer. Somewhat relieved when the initial tests came back normal. But still that nagging feeling that not all was well.
Then the call that answered the nagging feeling - one of the tests, something called celiac was positive. Silly what? How do you spell it? Autoimmune? Gluten what??
Thanks largely to the Internet; all of our questions were answered. Even while we waited through all the tests that summer, more blood draws, the endoscopy at Children's Hospital . . . I did not want to believe it but deep down I knew that Alex had celiac disease. Finally we received the news (on the day that Alex also fell and broke her arm). The endoscopy was conclusive for celiac disease.
As a parent, my prayer every night was for my children to be healthy and happy. So, why God, was my child not healthy? How could it be that my daughter had a genetic, life long, life changing disorder? Why did she have to live a life that would now be "different" and more difficult?
What parent would not be relieved to know why their child had been sick. Even better yet, the illness was completely treatable by something as natural as a change in diet. But oh, what a change.
It sounded simple enough; just eliminate gluten from your diet.
Ha! While no longer eating wheat flour was challenging enough for an elementary aged child, determining what we could eat in this gluten-laden world was a monstrous task. Eating out at restaurants was soon to become a rarity for our family. Hours of research to determine just what we could put on that gluten free bread, on the gluten free pancakes. So much more than a diet change, going gluten free is a lifestyle change!
Even though I ached inside for a pizza delivery van on Friday night, I made the commitment to be as positive as possible on the outside so that Alex could accept her new diet and life style. A new diet and lifestyle she would have to life with forever.
Two years later, the changes have all been made - our lives redesigned by things beyond our control as life usually happens.
The new life style accepted by all. Even though hours are still spent searching for safe food and even more hours are spent in the aisles of my local grocery stores (I say stores because anyone who cooks gluten free has at least three grocery/health food stores they shop at), I can breathe again.
Since I put so much effort into what we eat, we have decided to all travel down the gluten free path that leads to a healthier diet made up of more fresh everything. Our family is definitely closer together - family dinners are the norm, not a novelty at our house.
One of the first changes noticed was the color of Alex's skin. Always so pale before. Two months into the diet in the middle of the rainy season in Seattle, my daughter had a tan! I could not figure out where it came from. Then shock at realizing it was because she was healing. Then came the spontaneous dancing, the little skip across the family room for no apparent reason. Finally bigger changes, five inches of growth in a year! The point guard on her basketball team!
And so in the end, the realization came that God had answered my prayers. God took me on a different path than expected but I did finally have the happy and healthy child that I prayed for every night.