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Not Alone

May 5, 2016

“When everything goes to hell, the people who stand by you without flinching — they are your family. ”

– Jim Butcher

 

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It’s been a long time since I’ve been here. Not just this corner of the internet. But here, in this place where we are grappling with yet another diagnosis… Yet another disability…. I feel like somehow we’re back at the beginning… learning a new language for a new set of doctors and therapies.

I have been talking to myself- trying to talk myself out of this fog…. often using the same words I have used when talking to so many other mothers when they were faced with a new diagnosis… “She is the same perfect little girl that she was ten minutes before the doctors walked into the room….”

Yes, the same…. But our world has just shifted onto a new axis. Over six years of learning how to advocate for my Deaf child…. Then adding in how to advocate for her as a Deaf Autistic child with mitochondrial disease and epilepsy…. The list goes on, and each time they added to it, I took a breath, put my head down and learned everything I could. Because it never changed anything about who she was. It only changed how we helped her.

They’ve handed us some scary stuff before. And we would take it and move on. Just keep swimming, right? But this one feels different. It’s not deadly, she’s not sick. But it feels different because it changes everything about what I thought I understood about her experiences. And it’s left me feeling like we are scrambling to make up lost time.

(But do you see what I did there? The diagnosis changes me more than it changes her. It changes my perceptions- hers are exactly what they were last week.)

It’s good to know. It is. And I am grateful for the teacher that was experienced enough to see it for exactly what it was, and then to actually say it directly to me, and immediately offer the help and expertise that we so clearly need. That took guts.

And I have to be honest here. I didn’t believe her, but I figured an evaluation would be an educational and informative experience, and then we would be on our way.  But it didn’t happen that way.

Yesterday, after an evaluation at school my daughter was diagnosed with Cortical Vision Impairment, or CVI. It’s a type of blindness that is neurological, which is why her eye doctor never caught it. And it affects everything. It obviously affects her sight, but more it affects how she perceives the things that she can see. It slows her down when she is walking, because a threshold looks like an abyss to her. It complicates the way she eats her food because she can’t find it on her plate. It makes it difficult for her to recognize people by their faces alone. It alters her perception of every experience she has. And it makes it almost impossible for her to communicate with her iPad or picture cards. It is mind-numbing how hard this must make everything for her- on top of her other disabilities. And I had no idea.

I pride myself on being able to hold it together when talking to professionals about my kids. Just the facts- leave the emotions for when you are safe in the solitude of your parked car. But after they took my girl back to class and I was left alone in the room with the vision therapists as they scored her evaluation. I could feel the dam cracking. And when they started to explain just how much she cannot see, and how much it affects everything- especially her communication- I fell apart. Because, my God, I thought we were done. I thought we had all the stuff figured out. And here I am again, listening to professionals rattle off terms I had never heard of and how they affected my baby girl. And this one affects everything… Just everything… We are back at the beginning of a whole new journey and somehow we are already six years behind.

Almost always, when we get a diagnosis about my sweet girl, I am alone. And painfully so. It is by necessity- we have two other kids and my husband works, so, she and I go alone. I am left to remember all the details, answer all the questions, and deal with the results. Alone.

That wasn’t how it played out yesterday. Not at all. Without being asked, and even though they certainly had other things to do, her whole team spontaneously showed up. Her teacher, her speech therapist, her occupational therapist, her physical therapist, her behavioral aid, her interpreter, her principal….  Because they wanted to be there, for her, for me… To answer questions and learn how to help her. Because they have become family and they made it clear that we were in this together. And then last night when I emailed her school district’s assistant superintendent to let him know how the evaluation went, he was just as kind, and genuine in his concern for her best interests, offering whatever help she needed. The family we have found through this child over the years has been such a blessing. I’m not sure I will ever be able to express what that means to each of them- from the Early Intervention team all the way to her school team and even the school district, they have, in so many ways conquered the suffocating loneliness that this journey often creates.

Yes, this Diagnosis Day was different from all the other ones. Perhaps this one stings a little  more, but this time, I really feel like we are not alone in this. I’m still trying to wrap my brain around what all of this means for my sweet girl. But, she is exactly the same perfect little girl that she was the day before yesterday. Nothing has changed except that the exceptional family of teachers and therapists that love her will now have the tools they need to help her move mountains.

 

If you want to learn a little more about CVI, this is a pretty straightforward laymen’s explanation. I am learning that I have a lot to learn.

Cortical Visual Impairment 101

 

 

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3 Comments leave one →
  1. May 5, 2016 10:55 pm

    Bless her heart. Once you get through the abyss of diagnosis you will find the path that will lead you to help her move those mountains! Hoping for the best for her in her journey!

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