The Network, Hair, and My Turn

When we received Little's diagnosis in February of 2005, she was about to have her first birthday.  Our Neurologist at the time was NO help (I know I've said that before).  He gave us little hope that she would become anything of worth and sent us home with her whole life ahead of her and only a stack of outdated papers to help us on our way.  I remember feeling so helpless.

Within 24 hours God showed Himself to us and started our journey with billboard style evidence that He would be with us and would take care of us on this journey.  On more than one of the sheets we received, there was an email and physical address for something called the ACC-Network.  Having NO CLUE what this was, I figured that if it was mentioned more than once it was probably a decent place to start looking for answers.  I emailed "the network" right away and received a reply within an hour. 

It turned out that the network was just that. . . a network of parents across the nation who were committed to helping each other along the journey of parenting kids with ACC.  The couple who started the network and administrated the online list-serve have a son with ACC, and it was Mr. Schillmoeller who wrote me back to tell me he would be glad to send us a packet of information and instructions for signing up with the list-serve.  He also added that it was "such a coincidence, but we will be arriving in your city tomorrow for a four day conference."  

I remember my heart caught in my throat as I sat at the computer in our seminary apartment's basement and my first thought was, "Well, God, of course they are going to be coming here.  You LOVE a good story! You're so funny."  I wrote Gary back and asked if I could pick them up at the airport and drive them to their hotel downtown; they were arriving at the beginning of rush hour, a cab would be outrageous, the train only went so far, and I would be thankful for the time in the car to talk and learn since I was certain their schedule would be too full to have dinner with us.  Turns out I got to be in the car with them for over an hour and they were all too ready to have dinner us that very night.  We learned more in that first evening than we could have ever hoped.  It laid the ground work for these last six years and allowed us to make inquiries and decisions we would never have considered otherwise.

Hands down, the most helpful resource has been the list-serve itself.  I am amazed at the wealth of information one can find there.  When Little had her first seizure I went straight to the group and had several responses within the hour that helped me process and walked me through the next steps to take.  One guy, a man with ACC, gave me several questions to ask myself to help me determine the severity of the situation and gave me a probable scenario of what would happen once I called the doctor.  It was so calming and wonderful.  Time and again this has happened and every time my heart cries out with gratitude to my Father who continues to show that He holds us in the palm of His hand and He love Little even more than we do!

I rarely contribute to the list-serve.  It seems so selfish to write that after discussing the encouragement potential it has, but the truth is that MANY of the questions are beyond Little's development, my experience, and often more severe situations than our own.  I do scan through the emails each day and still get ideas, etc. but I rarely find opportunities to chime in.  That changed today!

I looked in my ACC box in Outlook and there was a subject line that read, "Pulling Her Hair Out!".  My heart literally skipped a beat.  I read the email and in my sadness also started to get excited.  Weird, eh?  I couldn't believe that I was reading about a 3 year old girl who had always rubbed her blanket as she fell asleep but in the last week she had begun to rub her hair and was pulling out handfuls at a time.  My heart was sad because I recognized the helpless tone of the email.  I got excited because God was finally giving me an opportunity to be an encouragement to someone else on the list-serve.  It was finally my turn to "return the favor" and, prayerfully, be the voice of hope for another.

See, Little started to pull out her hair and rub it as she fell asleep when she was 18 months old.  By the time she was two, half of her head was bald and we were beside ourselves not knowing what to do.  We actually got a lot of the same advice the writer received today: swimming cap, socks on her hands, a stuffed animal.  We tried each one and, in addition, added tying hair extensions to her crib in hopes that she would rub them instead and eventually shaved our little girl's head.  None of it worked.

One weekend my mother went to speak in Atlanta and shared about our Little's hair.  A woman came up to her afterward and shared that her granddaughter had done the same thing and the solution was a Cabbage Patch Doll with corn silk hair.  My mom called and I went straight to Ebay.  Two days and $10 later we had Cassie, a new friend for Little who came for the sole purpose of sleeping in her bed so that Little could pull her hair and let her own hair grow out.  The first morning after Cassie stayed with Little, we were THRILLED to find one black Cassie hair in the crib.  Within a year Little had enough hair to warrant a bow and for the next three years we found Cassie hairs all over the apartment.  After 3 years Cassie went bald and, even though we ordered another doll (Molly), Little still won't play with her hair.  We are thankful that, other than a couple weeks in the beginning of the Molly years, Little hasn't reverted back to pulling her own hair.

I shared all this with Keely and told her that I hoped it would give her hope.  I sent her this picture too so she would have visual proof if she found herself getting too sad.

Keely wrote back just a bit ago and thanked me and thanked me.  She said she would start the hunt for a doll right away and was so grateful to know others had the same struggle; she is not alone.  What JOY to be her person - the one to help lighten that one load.  There will be so many more for her to bear - how wonderful to have a solid idea to try and direction to travel in this time.  I am so very thankful God let me have a turn.

Oh, and tonight as I shared this with Honey he told me about a conversation he had last week with Little.  He put Molly in Little's bed and as he did he slipped and called her Cassie.  What was Little's response?
"That's not Cassie - that's Molly.  Cassie went away and left me."

Nice.  Maybe I'll go to the list-serve and inquire about a good children's therapist. . .