Saturday, April 24, 2010

On getting bigger...

Today we're hanging out at home.

Which is what we do basically every day.

As Max has gotten older, he really hasn't had many doctor appointments. Not that I am complaining about that one bit. But, we really don't have a lot of reason to get out. So we have to make a reason. And then we have to do it. Because it is ALWAYS easier to just stay home with Max. But that takes two of us...because Max is a big guy, and I just can't throw him in a carrier and leave anymore!

When he was younger and much smaller, he and I would get out of the house a lot more. When Steve lived/worked in California while we were still here, Max and I got out at least 4 times a week. I would put him in his chair, go all around town, to lunches, mall outings, doctor and therapy appointments.

Even as he got bigger, I was still able to get him out occasionally, just not as much because lifting him in and out of the car was a pain...a serious pain. Then something happened last year.

We had that fateful meeting with the allergist. He said Max is severely allergic to vaccines. That means Max can no longer have vaccines. And if Max can't have vaccines, that means he could catch whatever someone else who chooses not to vaccinate themselves or their children has. And when Max even gets a small cold that takes the rest of us a couple of days to get over, it can take him weeks.

So, we've stayed home. We've stopped traveling as a family. We close ourselves off to our friends and family if they have the slightest sniffle. To keep Max healthy. But, we also lost the practice and drive of getting out and about. When it just became easier to sit at home than to get out.

There are days when I think, forget it...we should plan a trip...just get on a plane and go. But then, I remember we don't have a special seat Max fits in anymore. We can't take him on a plane if he can't sit up. And the germs....

Then I think, he would do so great in school...he would be worn out at the end of the day because he would play and play and play! Then I remember that he can't be in school because he can't be exposed to the common cold, let alone flu, or swine flu, or whatever new flu we'll get this year.

And on days like today, when Steve is out of town, having a much deserved break, I think, we'll get out and go to the pizza place, or the mall. Then I remember, I can hardly get him into his wheelchair without a lift would I get him out of the house...into his large van (without a lift)...into his carseat...out of his carseat...out of the van...and into his wheelchair by myself? I couldn't, and wouldn't try. I can hardly get him out of the house for a walk around the backyard.

When we first started down this journey with Max, we always wondered why we never really saw kids with special needs out and about. We would see babies...and adults...but rarely children. We vowed we wouldn't be one of those parents that gets so worn down by it all that we quit living our lives. We didn't understand the difficulties of a growing child. We didn't know that there is no assistance for adapted vehicles, or lifts, or the challenges of finding proper seating, or where to change the diaper of a 60 pound, 4 foot tall child, or the constant weighing of risks of getting illness prone child out and around crowds.

There are things we can do, and we're working on to make getting out a little easier. But it all takes $$$$$$$$$$$$$$$. And as my friend said the other day, but it is ONLY money. This is true. We're not having to move mountains, or sell body parts to make it happen. It will just take time, and will-power to put money towards those things. But I sometimes wish we could wave our magic wand, or have Extreme Home Makeover come and bawl over our lives and just get us all the things we need.

I would love to go back to when he was so small...and do more...go more places...take more vacations as a family. But that is all in the past...and we only know how easy it would be now because we've had to learn all that. It didn't seem easy then. It seemed like we were doing the impossible. It seemed like we were beating the odds...we were getting out and living our lives.

I want to get back to that place. These four walls are getting a little dull.

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