Category: Brain

Bald Blind BEAUTIFUL

Yesterday, our daughter posted a selfie on instagram. In her own words, her hair “was falling out in handfulls, and I told myself I wasn’t going to loose my hair to sickness or medications, and if I was going to be bald it would be because I was confident enough to not feel like I need my hair to protect me or make me beautiful and to be able to shave it off myself, so that’s exactly what I did”.

In synopsis, since September 8, we have been in two ambulances, three emergency rooms, countless doctor’s offices, and inpatient in hospitals in two states, three times. We know a ton of information about what is NOT going on, but no clear answers about why she is struggling.

She hasn’t fainted in three weeks now. She is still totally blind (lost eyesight within 48 hours). Over half of her hair fell out, in individual strand cascading like a waterfall, (over two weeks) then in huge chunks as large as 4×6 inches of baldness at once (over 36 hours)! We broke down and shaved the remaining hair on Wednesday after another huge section on the side of her head came off with the beanie she wore to school on Wednesday to camouflage the large patch missing off the back of her head. One area fell out in a nearly-perfect heart shape, so once we shaved her remaining hair to ¼ inch, the bald heart looked intentional.

Today will be our third doctor’s appointment of the week. She is very frustrated by the amount of school she is missing. We are tying to emphasize that our priority is her well-being. The teachers, school staff, and her counselor are being fantastically supportive. The school started her on learning Braille on Wednesday and started mobility safety training with her VI (visual impairment) teacher today.

We are on the waiting list for a referral to an “undiagnosed conditions” program out of state. Please join us in praying that she will be accepted into the program (they receive so many applications that only a small fraction of kids actually get in). Also pray for doctors to have wisdom to figure out what’s going on and be able to help her. According to God’s perfect will and timing, we are simply requesting full healing for our girl, whether He wants to accomplish that through the common grace of medical aid, or to move miraculously to bring about dramatic healing that glorifies His name by leaving the medical community without explanation!

It is a HARD road we are walking. (If you don’t know the backstory, I told more at missed-deadlines and literal.) We are clinging to God’s grace through the darkness.

I cry to you, LORD;
I say, “You are my refuge,
my portion in the land of the living.”
– Psalm 142:5 (NIV)

Literal

My heart leapt with joy at the sound of singing coming from my daughter’s bedroom a couple weeks back. Beautiful melody is common from my teen who has won multiple talent shows and serves as a lead singer on her youth group’s worship team. What caused this song to capture my heart was the literal way it illustrated this blog’s “In Darkness Sing” theme.

 

At her request, over our past month, I have refrained from sharing identifying details. However, issues have now progressed to a life-altering levels, tested and researched enough to lead us to believe we may be facing these challenges for the long-haul. Hope and peace continually collide with fear, anger, and grief.

 

What made my songbird’s worship touch my heart so deeply 15 days ago (and every day since)? The understanding that just the day before her song reverberated down our hallway, her eyesight had totally vanished, after just a 48-hour battle. In the terrifying wake of uncertainty, blind faith in her Creator was being very literally tested. Her grace astounded, challenged, and convicted me as I wrestled through my own confusion.

I am writing from our 3rd hospital in 3 ½ weeks, this time a major, out-of-state one we had to fly to on Sunday. Monday involved 4 ½ hours of one-on-one appointments with two different specialists.  Yesterday was another 6+ hours with an even more unique sub-specialist. We were admitted last night and got little sleep as major testing unfolded throughout the wee hours.

 

Questions and theories abound.

 

Answers remain few.

 

Our daughter remains sightless.

 

As we were sitting in our first appointment of Monday morning, our son called with his own fresh, raw, devastating news. Rick flew home on Tuesday to get back to our boys as one of them walks his first real grief journey.

 

My in-laws have been here. I’m so thankful. However, they cannot stay past Friday. Since testing could continue into the weekend or beyond, I’ll be checking into another Ronald McDonald House for an indefinite length of time. We are hoping there will be a room available tomorrow. In times like these, I really miss my ability to drive!

 

This I know:

Earth is temporary and fading. God is constant and eternal.

 

If my girl can sing praises to Him, in the midst of her darkness, I choose to do the same.

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