Sunday, January 27, 2013

Down the Rabbit Hole- Part Two

If you missed the first post, Down the Rabbit Hole- Part One, please head over here to read first!

Part Two

Google was not my friend. 

All it did was serve to terrify me and sink me deeper into my guilt spiral. How could I not have known something was wrong with my child?  What kind of a mother was I?  Did I do this to her?  

I was a high risk pregnancy. I had a history of blood clots and yet my hematologist and OB both agreed not to medicate me unless necessary. At week nine of my pregnancy, it was necessary as I had developed deep vein thrombosis (blood clots in major veins of my leg). 

Could my clotting problem have had anything to do with all of Tiny Flower’s problems?

November of 2011: 

We started our evaluations for Early Intervention. A physical therapist, speech therapist, feeding therapist, occupational therapist and cognitive therapist all came to our home to play with and evaluate our daughter. They asked us the exact same questions, we gave the same answers. We waited on pins and needles for all of the evaluations to be completed so we could find out what we needed to do. 

We met with a neurologist and started the tests that would help up unravel the mystery of our child’s delays, hypotonia and small head size.

December 8, 2011: 

Our first meeting with the Department of Health and our Early Intervention Evaluator. Tiny Flower, 11 months old, was at the developmental level of a 2-4 month old across the board, except in her social interactions. The DOH tried to start us with one session per week of Special Instruction (essentially special ed), Speech/Feeding, Occupational Therapy, and Physical Therapy.  We managed to get started with two sessions each per week.

December 13, 2011: 

One month and one day before Tiny Flower’s first birthday. 

The day we found out that she was brain damaged. 

She’d suffered a stroke while I was pregnant with her.  She’d had an MRI the week before to determine what was causing the small head and the delays. 

We were hoping for the best case scenario - that it was a situation where the skull fuses together too quickly. It would have meant surgery, but once the surgery was done and interventional therapy put in place, Tiny Flower could have quickly gained footing on things in her age range. 

Unfortunately, we did not get the news we wanted to hear. Her microcephaly (clinical term for “small head”) was due to the fact that her brain was damaged and not growing the way it should have been.

Fast-forward to December 2012. 

It’s been a year. A good year, a horrible year, a year that will never be forgotten. 

With intensive Early Intervention, the only treatment option for brain damage, Tiny Flower has blossomed. She’s still very delayed, but the leaps and bounds she’s made are impressive. She sits on her own, she will stand - with assistance to get her there and someone to hold her and help with her balance, she plays with toys. She has gained 3 words (“hi,” “Dada,” and “Hooray”), and has developed a deep love of music.

Dreams are completely altered. 

Tiny Flower’s obsession (it is totally an obsession) with music gives me hope that she’ll conduct one day. Or sing, or play an instrument. I have visions of her conducting the Boston Pops or the New York Philharmonic. 

Mostly my dreams are of her being able to say “Mama” and know that it’s me. 

That she will be able to feed herself, and dress herself. That she can be potty trained some day. That she will be able to walk. My whole pregnancy I sang to her and talked to her about all of the things we would teach and show her. Now we’re teaching her how to play with toys and how to open her hands to clap.

It’s hard to be around my friends who have “normal” or “neurotypical” children. When I see the things that she should be doing, might not ever do, or will have a lot of trouble learning it’s like being punched in the heart. Luckily, my closest friends don’t see Tiny Flower as anyone different. They treat her the way they treat any child. They cry with me, spur me on, and are my child’s biggest cheerleaders. For that I’m eternally grateful. The difference it makes on this difficult path is immeasurable.

When you think of the term “brain damage,” you probably picture someone who is unresponsive, unable to do anything for themself, unable to exist without major medical interventions. For a child who faces such challenges and so much work on a daily basis, Tiny Flower is an absolute joy. She’s quick to smile and laugh, curious, and engaging. Many people think that she’s younger than she is, due to her small stature and developmental level of a 10-11 month old, but no one has ever reacted with anything but surprise at hearing her diagnosis.

We have a long road ahead of us. There are so many questions that we have and the only answer is, “we have to wait and see.”  There is so little known about the brain and how it heals and redirects information. We had one specialist write in her report that she was amazed at how well Tiny Flower is doing based on the amount of damage and the location of the damage in her brain. That comment not only is a blow to the parental psyche but also a statement of hope. We just might be able to re-wire her brain and she might come very close to being like any other neurotypical child.

No one ever expects or wants a child with Special Needs.  It’s an exclusive club that no one is clamoring to be a part of. You have to adjust your “normal” and constantly remind yourself that it’s not like anyone else’s. It’s entirely yours. Resist it, hate it, accept it, own it, eventually you will love it. At least parts of it.
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  1. It's been a long time since we have been in contact, but I am so thrilled and inspired to see the progress Tiny Flower is making. You are an AMAZING mother. Keep up the great work with your beautiful girl.

  2. What an inspiration this post is for parents who might be dealing with the same thing. :)


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