Thursday, September 15, 2011

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Jackson's Smile

There's something about a child's smile. The look of wonder and delight all over their face that makes you smile in return, and feel better for it.  The freshness and innocence of youth that allows them to find magic in things we take for granted. Their absolute trust in us to take care of their every need. Think about it. When you were a child, did you ever worry about a house payment, whether there was enough money left in the bank for groceries, or how expensive this year's round of school clothes and supplies would be? Of course you didn't. You were busy being a child, working at the business of taking life in and enjoying every  drop of it. That is, after all, what children are supposed to do.

As we grow up and shed the innocence of youth little by little, we become more serious, more saturated in the  stresses and drama of life. More focused on being a responsible adult.  And then there's the day that we become parents ourselves. We suddenly realize that the fate of this tiny little person we hold in our hands directly after birth is completely dependent upon us. And we are thrilled to have the responsibility. There will be times that we wish our child came with a manual. We will lose sleep, worry about the silliest things, and carry pictures in our wallets. We will cry with pride in their accomplishments, and we will cry in sympathy when they hurt.

We already know that there is nothing we wouldn't do for our child. But now we've learned that our child needs special attention. He is diagnosed with Cerebral Palsy at nine months old. In the next couple of years he will also be diagnosed with Autism, Sensory Processing Disorder, and global Developmental Delays. Finally, after a long road traveled trying to find answers for his sleep disturbances, Landau-Kleffner Syndrome turns out to be the latest diagnosis to add to the list at 6 years old. And we tell ourselves to be strong. We accept the diagnosis, because there is no other option. At least we have something to go on now. And we, as parents, continue to go about the business of taking care of our child's every need. We have more, and newer stresses, and we start to forget the magic and wonder.

The medical bills add up. Some the insurance covers. Some, it does not. You apply, and are denied, SSI. The  only silver lining is that you have the option of medicaid as a secondary insurance resulting from being declined SSI for your child. This all sounds great, right? Medicaid to cover co-pays and the portion of procedures, testing, and therapies that your primary insurance won't. It's not great. You've found something that will help your child. An IV infusion called IVIG recommended by your epileptologist. It's scarily expensive. And it's not covered.

Let us pause in our story. I want you to scroll up to that picture at the beginning of this post. Only this time, I want you to think, "This is Jackson." Now. If Jackson were your child, could you look at him, witness his wonder and his smile, and then say you wouldn't move heaven and earth to get him the infusions he needs to calm his seizures? Of course you wouldn't. You would take out a loan on the house, you would work all the overtime hours humanly possible. You would do anything... ANYTHING.. to help your child. And that is just exactly what his parents have done.

Everyone, you have just met Jackson, son of Gina, who writes over at Special Happens. Isn't he just gorgeous?? I'm completely in love (don't tell the Daddy).  I'm introducing Jackson to you today, because I just can't deny him the infusions he so desperately needs. Can you?

Gina's family is starting a fund for Jackson's medical expenses, and we need YOUR help to spread the word.  Please tweet, post to facebook, blog, or donate. There are a multitude of ways to help this family, including submitting a guest post to Gina's blog so she has one less thing to worry about when Jackson starts his first round of infusions, beginning this coming Tuesday.

This will be an ongoing commitment on my part, to do everything I can to make sure Jackson, Gina, and the rest of the Special Happens family is taken care of. What will your commitment be?

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