Today marks one year since the first hairs began falling out of my daughter's head. I remember finding her pacifier in her crib completely covered in beautiful dark brown hair and wondering what that was about. I remember her picking at hairs between her fingers as they'd fall into her food at mealtimes. I had no idea what was happening at the time or why it was happening. For whatever reason, I wasn't even all that worried at the time. (I guess that didn't come until later...)
I certainly didn't expect my child would be completely bald in 10 months, or that a year later I still wouldn't really know the why of all of this. Or that I'd be cooking gluten-free, dairy-free, soy-free, low sugar meals for her.
My, how things change in a year!
I don't even know where to begin. We've had so many ups and downs that I'm honestly left questioning whether I even know what "normal" is anymore! I mean, I don't have any other kids to compare things, and I'm just sooo weary trying to be the detective, the chef, the nutritionist, the doctor, and the wife and mom as well.
Before this past year, I used to think health issues were so concrete. So fixable. I trusted physicians and big hospitals to KNOW and help. I thought I could eat well and feed my child "well," and just deal with the normal stuff that comes along in life. I never knew what a year of discouragement and heartache I would have to face. I didn't know what it was like to cry so hard that you think you're gonna puke. I've never experienced the moments of hopelessness and despair as I have this year. It is just so hard for a mom not to be able to "fix" it.
It's been a year filled with grieving lots of little things: bows in the hair, eating as a family at the ice cream stand, playing with regular playdough, etc. It may sound so dumb and I know in the grand scheme of life, it could be SOOO much worse. Nevertheless it is still very painful.
And I still don't know the why of everything. Last week our doctor suggested we begin looking nationwide for a specialized immunologist that would know auto immune conditions and the connections with dermatology. (hair & skin issues) We are waiting on her referral as she is looking into possible physicians. It felt like such a blow to hear her say, "I've been in peds for 30 years and have never seen a case like this."
I just don't understand. I don't understand why my kid is never really sick (haven't needed to give her tylenol or ibuprofin for almost a year!), she's as strong & happy a kid as you've ever met, she's growing like a weed, she communicates similar to a child twice her age, and yet she's supposedly the "sick" kid?? I just don't see it. I don't know what I'm supposed to do to help her. And apparently no one does.
What has also been discouraging is that my own vertigo issues have recently come back as well. (some of you remember I struggled all last winter with it.) Three weeks ago I woke out of bed and everything was out of control-- it was as if I was on a rocking boat in the middle of a terrible storm, and I had to grab the wall to keep from falling. Thankfully the dizziness only lasted for about 30 seconds before the nausea and vomiting set in. Since that episode, I have struggled with the constant sense of being "off kilter" and having an almost continuous vestibular migraine-- not anything that has kept me from normal functioning, but has certainly decreased my quality of life. Please, please, PLEASE count it a blessing if you are able to feel like your head is in balance with your body! It is such a gift. I beg the Lord will give that back to me soon.
My symptoms have been particularly aggravated this time around by looking at the computer screen. (which is why I have written this entire post out on paper first & am looking away as I type this as much as possible) With just one minute of looking at the computer or tv screen, I feel a headache and dizziness/spaciness come on. Ugh. Can I just try to get my daughter well without everyone's health in my family falling apart???
Speaking of everyone's health issues, Marc has gone back ON gluten for the past several weeks as he'll be having an endoscopy in a week or so to check for celiac disease. (his brother has it and so it makes everyone in his family prone to it) You might remember that he was feeling SO good when he went gluten free for a month or so. Back on gluten, he is fighting all of his old symptoms again-- fatigue, lack of energy, mental cloudiness, gastro issues, allergies & itching, etc. These were ALL much improved off of gluten. He says regardless of this test's results, (which requires you to be on gluten for 6 weeks) he will be going gluten free. I think for him, he's wondering if he'll be gluten free because he wants to or because he has to.
He's eager to be gluten free again and says that there is NO food worth eating if it makes him feel like this. Amazing, huh? But since he has to be on the stuff for it to show up on his endoscopy, we've been enjoying a "farewell gluten" tour together! (Pizzas and breads and some junk food! yummm!) Too bad he won't still be on it over the holidays! :) I'll keep you guys posted. If it weren't for Caroline's health issues, I don't think Marc would ever have figured out his own issues with gluten, so even for that, we can be thankful.
Yes, it's been the hardest year of my life.
It's also been the best year of my life, too.
Watching my little girl grow and blossom into a little person is the highlight of my life. I just love to watch her little brain tick as she learns and discovers all that life has to offer. I have a husband who is so, so good to me and we suffer through this together. We are the best of friends and marriage is even better after 11 years than it was at year one. God is growing me in ways I never dreamed. And suffering, as awful as it feels, just humbles you, you know?
I love my little family. We are richly blessed. With so much more than hair. Hair, shmair.
I know God is at work in our lives, especially when we're suffering. He works through the suffering, not in spite of it. Many of you have prayed for us and loved us in so many different ways over this past year. Thank you. Thank you for the cards, the emails, the gifts, the meals, the toddler hats, :) the hugs, and the prayers. This Thanksgiving, we have much for which to be thankful.