Tuesday, January 25, 2011

processing grief...

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...
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  1. Yea, I hate to admit it, but I've been struggling with my own grief for her and you and Marc. She's sooo beautiful but it worries me that people, especially kids, will miss her beauty because of the hair-thing. That's their loss, of course. This adoption has always been at God's leading and He has never failed us yet. We'll be there with you and Caroline. Few kids in this world will have the support team that she has. Maybe He knew all along that she would need two mothers and three grandmas pulling for her.

  2. There is never a doubt in my mind that God chose you two to be Caroline's parents and that He chose her to be your beautiful little princess daughter. He will see you through to that time when there will be no more pain, sorrow, heartache and tears. We all are groaning for that day when we can be at peace and be together with Him. Love and praying for you.

  3. I loved your insight about the hospital and the vision of the church as truly the hospital of the soul. I think you are right where God wants you. I think Caroline is right where God wants her. There is great blessing in all this which God will continue to bring about. Right now the struggle is with acceptance. But in the future there will be more genetic and cosmetic options for Caroline, maybe even medical developments as yet undiscovered. Thanks be to God He keeps the rain falling on the just and unjust and lavishes his elect with grace.

  4. I'm so glad to hear your doctors conferred and that you can avoid putting Caroline through a (sometimes scary) procedure. You're doing an amazing job raising this smart girl, and I absolutely think that the Christian love and knowledge that you and Marc are instilling in her will equip her not only to deal with the alopecia, but the other difficulties she will encounter as she grows up, and she will come through them shining!

  5. Hey Amy,

    I love you and am praying for you. I have a friend who grew up with a down syndrome brother. And she said that for her entire life, she has a natural way to see what people's true characters were by how they treated her brother.

    And I know its extremely sad right now (the Hindi word for grief and saddness is the same word...interesting)but thats what I will pray for Caroline. That she will learn from a very young age what a person's heart really is made of.

  6. My Faith Looks up to Thee
    © Bobby Guy Music. Words: Ray Palmer. Music: Bobby Guy.

    1. My faith looks up to Thee,
    Thou Lamb of Calvary,
    Savior divine!
    Now hear me while I pray,
    Take all my guilt away,
    O let me from this day
    Be wholly Thine!

    2. May Thy rich grace impart
    Strength to my fainting heart,
    My zeal inspire!
    As Thou hast died for me,
    O may my love to Thee,
    Pure warm, and changeless be,
    A living fire!

    3. While life’s dark maze I tread,
    And griefs around me spread,
    Be Thou my guide;
    Bid darkness turn to day,
    Wipe sorrow’s tears away,
    Nor let me ever stray
    From Thee aside.

    4. When ends life’s transient dream,
    When death’s cold sullen stream
    Shall o’er me roll;
    Blessed Savior, then in love,
    Fear and distrust remove;
    O bear me safe above,
    A ransomed soul!
    -My Faith Looks Up To Thee

    You all should do this at Mercy. Greg Thompson has a GREAT arrangement of it. It will be good for your healing process..as well as for many others. It still brings me to tears sometimes.

  7. We love you, Amy. Thanks again for sharing your heart.