Thursday, May 8, 2014

a look back, part 3...

...continued from Part 1 and Part 2, excerpts from my personal journal through Caroline's hairloss journey.

11/3/11  (Caroline was showing a variety of mysterious symptoms, not just hairloss)

I just need to be alone with my thoughts.
I don't even know what they are.
Our doctor "sent us on" today
after seeing Caroline's loss of pigmentation
on her legs spreading.
She wants us to see an immunologist.
It was a blow to hear,
"I've been in pediatrics for 30 years
and I've never seen anything like this."
I'm thankful for her honesty,
but it is utterly discouraging.
I feel so paralyzed.  Numb.  Confused and alone.
I feel like no one has time to just SIT with me.
Like no one feels the weight or shares it with me.
Like people are curious or interested,
but not affected.  
It's not their child, afterall.
I feel like no one's entering the suffering-
but just looking in on mine.
I don't know what I even want-
just someone to help me process it, maybe?

I feel like I'm a terrible mom.
Like somehow I didn't do enough.
Or at least I should be able to figure this out.
I don't know what "normal" is anymore.
I don't know how to be a mom.
I don't know what I'm doing.
I am so weary.  So hopeless.
God, please guide us to answers.
Help me to know what I should do.


Today marks one year
since the first hairs began falling out
of my daughter's head.
I remember finding her pacifier in her crib,
entirely COVERED in her own hair.
I remember her finding them in between her fingers.
I had no idea what was happening or why.
I remember that I wasn't even all that worried
I certainly didn't expect my child would be bald
in 10 months time,
or that a year later I still wouldn't really know why
or that I'd be providing a gluten-free, dairy-free, soy-free,
low sugar diet for her.

My how things change in a year.

Before all of this,
I used to think health issues
were so concrete, so fixable.
I trusted physicians to KNOW and help.
I thought I could eat well, and feed my kid well,
and deal with the normal stuff that comes along.
I never knew what a year
of discouragement and heartache
this would be.
I didn't know what it was like
to cry so hard
you thought you might puke.

It's been a year of grieving the little things:
no more ponytails or bows or shampoos.
It sounds so dumb
and it could be so much worse
but it is still so, so painful.

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
is the highlight of my life.
I have a husband who is so, so good to me
and we are the best of friends.
I love my little family.
We are richly blessed,
with so much more than hair.
God is growing me in ways I never dreamed.

1/1/12 (New Year's Day, another year later after we finally received a diagnosis from Duke Children's Hospital.  Caroline's symptoms were a result of alopecia, which required no treatment, and an intestinal parasite, which was very simple to treat.  All of the nutritional efforts in the world wouldn't have resolved the parasite... who knew?...)

2011 is behind us.
A year of a diagnosis!
It's just alopecia.

2011 was a year of re-building.
Rebuilding who we are,
what we believe,
figuring out how life works
when your kid is bald.
2011 wasn't void of tragedy-
my dad's diagnosis of pulmonary fibrosis
and my mom's fight with cancer.

Looking ahead to 2012,
I'm praying for an adoption.

And would you believe.
That's just what He gave us
November 8, 2012
in the form of
sweet Jameson David.

Praise be to God,
for He has done great things!

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