Turning Three- Running to Stand Still

Eliah turns three on May 28th. He is 42inches long, and weighs in right at 35lbs. He sleeps from approximately 1am-6am, and naps for two glorious hours a day. He screams/cries about 45% of the day, with laughing/playing/exploring coming in at 35%, and blank stares around 20%. And all of it is mixed together in one, big, bi-polar mess throughout the day. I have a big baby on my hands that wants to be picked up as soon as he is put down, and put down as soon as he is picked up. He has temper tantrums and loves to snuggle and get hugs.

Sadly, I could easily copy and paste Eliah's Second Birthday blog post here. Nothing has changed since then. His major milestones this year consisted of learning to roll and drinking through a straw (although not at the same time). I completely understand the statement "running to stand still" in depth now. Every day is a struggle just to maintain what we have. To give you an idea of what I/we think about and handle every day with Eliah, I wrote some things down.

I am under constant pressure to make sure Eliah gets medications on time, including his shots and checking his blood pressure…..to hold Eliah until he falls asleep every night, and get as much sleep as possible in that time, as well as eating and showering as fast as possible because he is crying for me to pick him up….under pressure to get him to talk before the age of five, or he will never talk….to get him walking or crawling as soon as possible.

I constantly worry about: Why is he crying? Is he in pain? Is he bleeding internally? Is he about to have a seizure? Are the hospital bags packed? Are the oxygen tanks hooked up? Is his blood pressure too high? Is he about to have a heart attack? Is he about to have another stroke? What can I do to help him? Can my back handle picking him up for the 50th time today?

But there is also good that surrounds the pressure and worry. When Natalie and Eliah laugh, the world is right. I am always trying to find ways to have fun and make them laugh. I want them to have happy memories of their childhood, not worry. I have always told Natalie, "It's my job to worry. It's her job to have fun". And I do everything in my power to show them how to love, laugh and have fun.

There is definitely hope for more improvements for Eliah in the future as well. New medicine and new technology is around the corner. Maybe more programs will be available when we move. There's always hope that something will "click" in Eliah's brain, and things will start happening. Now when I look at things Eliah does, like one of his fingers twitches constantly, I am thinking, "there is one little tiny part of his brain that is making that happen". I love having that perspective, and seeing it objectively, without fear. He has so much potential, so much life inside him, so much personality, and is so much more than just a kid in a wheelchair.

I questioned my friends a while back about how to deal with disabled people when they passed by. What do you say? How do you act? I've never been around special needs people, so I really didn't know. And now that I have experience with Eliah, I wanted to share what I like best when people pass us by. Children have the right idea. They ask, plain as day, "What's wrong with him? Why is he in that chair? Why can't he walk?" It's simple questions and it's a pleasure to answer them.

I stopped by Natalie's school the other day with Eliah. And children wandered out of a 2nd grade classroom to look at Eliah, and I was bombarded with questions. I loved that they were not afraid to ask. I loved explaining things to them. I love the curiosity without feeling sorry for him. And within a minute, the teacher came out and said, "Oh my goodness, I'm SO sorry they did that to you." And then she cocked her head to the side and gave me the pity look.

I don't want pity. I don't want sympathy. This is what we were given. I don't take a moment for granted. I love, hate, cherish and look forward to every single day, and what it will hold for Eliah. I love what I have learned by being the mother of such a special boy. I am proud to be his mother.

It's been a long road over the past three years. We're blessed Eliah lived through the first year, much less got to sit in a wheelchair on the beach at the age of three. We still have a long road ahead of us. But we'll get there, someway, somehow.

Happy Birthday, Eliah.