And after the peak …

… comes the downward slope.

Yesterday, Nathan got his Kidwalk. Yipeee, right??!! NOT.

When the guy finally arrived with the Kidwalk, after a 7.5 month fight with CCS, medi-cal, blue cross, regional center, after a dozen letters, 10 dozen phone calls, well you get the pictures… I was ecstatic, worse than a kid at Christmas, I felt I had been given the biggest present of my entire life. Nathan could now become mobile!

I rushed over to the instructions, quickly figured out what to do, and rushed to put him in. I was literally beside myself.

But Nathan wasn’t. In fact he was the opposite from beside himself. He was pissed. The lip came out instantly, and the whiney whimpery newborn puppy whiney complaints started.

I was jumping around, calling him, encouraging him to move, I put his juice in front of him trying to get him to take a step, a single step. But…nothing. After 7.5 months it seems that whatever magic had enabled him to take steps that one time he was in the Kidwalk has now evaporated.

I figured, it’s okay, we’ll try again later. So later we tried again, and same. His legs were like noodles, and when I say noodles, I mean noodles. Pick up a cooked noodle and watch how it just sort of wobbles around with no sustance, no strength. Those are Nathan’s legs. Unless he decides to get stiff. Then they’re as stiff as a baseball bat. Try bending a baseball bat – not easy.

Anyways…he whined and complained and started crying so hard I had to take him out – I didn’t want him associated the Kidwalk with torture.

Today I tried again at home. More of the same. So I thought, hmmm. We need to put him in it in a more stimulating environment. So I took him to the park and positioned him a few steps away from the swing and told him to take a few steps to the swing. Nothing. His legs just dangle while he whimpers and whines.

And I know I have to give him time. I know it will take time. I know it’s something new to him and I can’t expect him to do well in it right away.

But it still breaks my heart. Let me explain something. The first time we tried out a Kidwalk, Nathan took off. We were at an Abilities Expo and he started walking from me to Owen and back. It was the most amazing thing. So all these months I had the illusion that as soon as he got the kidwalk, off he’d go. Instead I see he has lost even more and now that illusion seems like that’s all it was – an illlusion.

I know that with a lot of time and practice it’s possible that he might be able to do it. That he might be able to learn how to move.

But after having that illusion for so long I feel so sad and so heartbroken. Why does everything have to be so hard for Nathan? Why can’t he have one thing that he can do?

I’m sorry I know I’m being negative and ridiculous, that I should be grateful that we finally got the device and that I have to give him time. I know I should be grateful about so many things.

But I guess the downward slopes are part of the journey too.

Anyways..after our perfect day of doing everything, we’ve had two days of getting nothing done. Oh well. Tommorrow’s another day.

Comments

  1. Yes, tomorrow is another day. It may be great, or it may really suck, or, more likely, it will be somewhere in the middle. It is how we deal with it that counts, and I know you will rise to the challenge.

    I totally get how disappointed you feel, but sleep on it. Nathan will surprise you, he always does. I for one am still super-excited you got the kidwalk.

    Talk soon,
    Erin

  2. http://Administrator says

    I know, I feel like such a dork! I blame it entirely on PMS.
    We tried it again today at my grandma’s and he did great! He didn’t take steps, but the good thing is that he didn’t complain.
    I know that in time he will be able to figure it out.
    I found my camera so I will take and post some pictures tommorrow!
    Hope you’re having a lovely weekend!

  3. http://ToTheMax says

    Oh, I feel for you… You get your hopes up SO high. But, you know what it is: It’s something new he has to adapt to. Max takes forever to get used to new things/situations. If there’s one thing I’ve learned, it’s that our kids are on nobody’s timeline, and the most important thing is that they eventually try to do something and/or actually accomplish it. Keep your hopes up. And, the therapists can work wonders with the kids and the equipment.

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