Thursday, November 25, 2010

I don't even know where to begin.

The very fact that I have re-written this first sentence no fewer than 20 times should attest to that!

What am I thankful for?

Just one thing? Because I can't narrow it down. My heart and my spirit overbounds with thankfulness. That sounds so sappy; and mushy. But if you had walked the amount of miles I have clocked in this last year - you would feel the same way. I don't know where to begin in the list of things I am thankful for. Last year, I wrote a blog entitled Today I Give Thanks. And I feel like that was pretty concise. And honestly, I should have renamed it to "Everyday for the rest of my life I will give thanks for..." Because, literally, every day of this last year I have given thanks for the sentiment of that post. So, all that's number 1.

Every day I give thanks that a string of miracles led my beautiful daughter Makenna to the treatment she needed. That my parents had instilled in me a never ending search for the truth and a perserverance that wouldn't be stopped. That I am just stubborn enough to have to see for myself and not just trust what I am told(in a polite way, of course :)) That the internet exist to aid parents in seeking the best medical treatment for their children. And that it exists to connect people who normally would not cross paths. People who can hold me up when I feel like falling down. People who lean on me just as much as I lean on them. People who know the path I am travelling and can reassure me that I am not alone - even though it feels so dark and quiet at times. Yes, every day. Every day I give thanks for all those things.

This year. We were able to confirm a diagnosis for Makenna. She has Horizontal Gaze Palsy with Progressive Scoliosis (HGPPS). I have known she had that since August of 2009. It took until February of 2010 to get a genetic confirmation. There are very few reported cases in the world - around 80. After meeting with the specialist in Boston - which is another day I give thanks for each day:) - I now understand the condition. Most people are 'cross-wired'. The left side of their brain controls the right side of their body and vice versa. Makenna is not. Her nerves do not cross. The right side of her brain is wired to the right side of her body. The fact that a gaze palsy and progressive scoliosis are ALL she has is a miracle to me. I am thankful for that miracle and the diagnosis in and of itself. When you know there is something wrong with your child, but you don't know what it is - it's agonizing. We spent the first three years of Makenna's life waiting for the other shoe to drop. It just seemed like there was always something with her...and we didn't know what was coming next. Having a diagnosis lets us know that we've hit all the major speedbumps. I mean we still have little issues to conquer - reading will be a concern because of the eye tracking - but, we'll handle those as they come. We know it's not degenerative and it doesn't effect her cognition. All blessings.

I am thankful for my newfound group of solidarity. I can't say it enough. The group of mothers I have met inspire me on a daily basis. They are my sunshine on a rainy day, my rope when I feel like I'm standing in quicksand, and my inspiration to keep going and make a difference.

There is so much left to do. To make sure that each and every child who needs casting treatment gets it. Or is at least offered it. Or at least their parents can find it easy! So many hurdles. So many standards to change. I am hopeful and I see signs of improvement. Just today, I found an article that confirms that Riely Hospital in Indianapolis is offering casting. I am thankful that doctors are moving to new communities and offering the treatment. Spread the knowledge - spread the word.

Lastly, I am thankful that after all our famliy has been through in the last 15 months, we are strong. We are energized. I am thankful that I still have fight left in me :)And I'm going to use it!

What I am most grateful for, though, is Makenna's progress. She is a testimony to this treatment. I am happy to report that after a series of 4 casts, Makenna was transitioned into a brace. We began at a humble 20 degress. But given her underlying condition that was bound to progress quickly and aggressively. She is currently holding somewhere between zero and 10 degrees. I still look at her every day. I analyze her back as she climbs into the tub. I watch as she sits down. I don't think I'll ever stop. And she is patient with me. She humors me and lets me 'rub' her back; as I trace my finger up and down her spine to check. She gallops equally on both feet at my insistance.

She shows her gratitude as well.

I often ask my kids "What are you grateful for today?"

And Makenna answered the other day,

"I am grateful that you rub my tummy and my back".

Give Thanks!

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