Grief is a crazy thing. Even grief over your losing kid's hair. One minute you're fine. The next, you're not. It seems like the smallest thing can trigger it.
Our Duke visit on Thursday was amazing. We liked our doctor. We don't necessarily love our diagnosis, but what a relief to finally get one! We walked out of Duke feeling encouraged and surrounded. I don't know-- there's just something beautiful about a hospital. It's like there's a spirit in the air that says "it's-okay-to-not-be-okay here." You don't have hair? Doesn't matter. Because in here? Everybody's got somethin'! That's why we're here! There's no need for people to be quiet and awkwardly stare because they know why you're there. And you know why they're there. We all need help. There's just something so beautifully leveling about a hospital. If only our churches shared the same welcome to sick sinners!
But even though the Gospel was SO clear that day as I reflected on God's new direction for our family with a likely lifetime of alopecia, I wasn't prepared for the emotional crash that would come the next day.
The grief and denial soon set in. I mean, Caroline's been bald for almost a year now, but it seriously feels almost like it's for the first time. No, surely there's something else I can DO to figure this all out, Lord. Are we really DONE? Why does my daughter have no HAIR anymore?! Why did we go 21 months with it, only to lose it all? And what does this mean for her when she's 8? When she's 12? When she's 16?? How will people treat her? How will she deal with it? How will I deal with it??
Again, she asked me, "Mommy, why did I lose my hair?" She wasn't upset. Just curious.
"Sweetheart, I don't know! Sometimes people just lose all of their hair. God doesn't want everyone to have hair."
"I mean, but where did it GO, Mommy? When it fell out, where did it GO?" she asked.
"Well," I answered, "some of it went into the bathtub. Some of it went into your crib...."
"And then where did it go?"
"Then we threw it away."
"Why did you throw it away?"
"Well, that's what you do when you lose hairs. You throw them away."
"So I can get NEW hair!" she exclaimed as she touched the top of her head.
My heart sank. I smiled at her, but inside I was torn in a million pieces. But she's not. And that's halfway reassuring.
So our Duke dermatologist called again yesterday after doing his research and actually talking with our gastroenterologist. (finally! What I've been waiting for! A day when 2 doctors will actually TALK to one another!) And their united recommendation to us was to call off the endoscopy we had scheduled for February. They don't see the connection for Caroline between her alopecia and her intestinal issues. (which have since gotten much, much better lately, by the way...) And so when I've got two well-educated DUKE doctors telling me not to put my child under and do this procedure, it wasn't too hard of a decision for Marc and I to make the call today to cancel it.
So it's over. (For now, at least. Of course, we can reconvene on things if anything changes or becomes worse.) But our hunt to find answers to all the mysterious symptoms over the past 2 years is behind us, still leaving unanswered questions in our minds. It is especially hard for me to swallow. They say the hardest thing about alopecia is accepting that it's only alopecia. For now, that's where I am.
I'm sure it's normal to feel the waves of sadness. I'm sure these won't be the last of them. It's feelings like these that remind me that things are not the way they're supposed to be. My daughter is supposed to have hair. This world is broken and fallen. This is not how it should be, and thankfully it's not how it's gonna be, either . There will be a Day FAR more wonderful when there will be no more tears, no more grief. When the world is made anew and creation is finally restored (as it's groaning in expectation even now), things will finally be made RIGHT. THAT is my ultimate hope. And it's the feelings of pain, longing, sadness, and grief that point me there.
I have no idea why God chose ME to be Caroline's mom, even though biologically I wasn't supposed to be. He knew that she would face a life of alopecia, and for some odd reason of His own, He wanted me to be the one to explain it to her. (Marc had an excellent idea for us to write a children's book for her helping her understand alopecia & I plan to do it! I'll keep you posted.) Just as I love my daughter fiercely, His love for us and for her is even more so. Even before I knew a thing about her, or ever met Megan, He was working out His loving will for Caroline. And in my times of grief, that's what gets me through.
Well, and a little of this, too...