Still running…

I took a survey today that asked me if I felt better prepared to deal with the issues that my special needs child would face in the future.

Um….no.

How in the world am I supposed to prepare for that anyway?  Isn’t the whole point to not worry about the future, not obsess over the things that may or may not happen, things I can’t really control anyway?  And isn’t that a little counterintuitive to preparation?

I guess I’m just a little frustrated today, or this week.  Like I said a few days ago, things are going much better for me — I’m better.  But I suppose nothing has really changed, has it?  I’m just not a total basket-case about everything.  

We made it to all of our early intervention appointments this week and it didn’t kill me, but I’m definitely burned out.  Tonight at dinner Tammy mentioned how nice it will be once summer vacation comes and we can all go together.  Uh….we’re going to have to talk about that, I’m ready for a break…at least one less appointment a week for a few months — especially since I’m going to have to push for speech therapy come September and that could very well mean another weekly appointment.  Ugh.

But mostly I’m just frustrated with the tediousness of it all — that Hope still isn’t drinking consistently out of a sippy cup and I know she can’t be getting enough fluids and that makes me feel like a huge failure.  And because of that I haven’t been taking her outside as much this week because it’s already steadily in the 90’s and will hit the 100’s this weekend.  She likes being outside and I like having her out there with us — especially since Grace is just pure mischief if left unattended.  Two days ago she fed the goldfish in our pond Miracle-Gro tree spikes; yesterday she fed them McDonalds; today she decided to try her hand at picking up dog poop (which she did quite well the first time, not so well the second….don’t ask); and every day she dumps the dog’s water into the dry kibble.  But being outside to monitor Grace means I’m not inside to keep Hope company — somebody is always being neglected.

It still takes forever to feed Hope, in large part because I have to let her try to feed herself and that takes a long time.  She’s getting better at it, tonight she did pretty well with beans and mixed vegetables — but I have to stay close by in case something goes down the wrong way and then still have to feed her myself to make sure she gets her calories.  It takes an hour, I get bored, I’m not interacting with her the way I should, I get distracted by Grace, etc….

It doesn’t really ever feel like there is a light at the end of the tunnel, because progress is so slow in coming and the waiting just leaves me feeling so helpless.  And even though I know that eventually she will be able to drink from a cup and feed herself, I can’t really bring myself to even look forward to those things because they’ll be such double-edged swords in our lives.  I can’t help but feel bitter and resentful that my life today is consumed by the worry that she’s not getting enough calories, just so we can reach the point where my life can be consumed by the worry that she’s getting too many calories.

But I think that mostly it just makes me feel really, really sad to see how much she struggles to accomplish the tasks her sister so miraculously mastered out of the blue — how long it takes for everything.  Have you ever had the dream where you’re running as fast as you can, but you’re not moving at all?  That’s what my life feels like right now.

Well, anyway….  My next big task is to pull a Prader-Willi Symposium out of my rear-end by next Monday, something that’s been in the works for months — which is to say it’s something I’ve been procrastinating about for months.  I’ve got to come up with some inspiring comments to make so thanks for letting me purge the grumpies here.

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3 Responses to Still running…

  1. Vikki says:

    I’m sending positive thoughts from afar.

  2. Wifie says:

    Thanks for putting some of my thoughts in writing. I can’t say I deal with Hope’s slow progress as much as you do, but I do have the same thoughts and fears, so you’re not alone in those. All I can say is THANKS for taking great care of our girls- day in and day out.
    143

  3. Jeannette says:

    Hey there – this post is like reading my own thoughts. I have two older boys and my middle guy is very high maintenance. I constantly walk the tight rope of giving the right amount of attention to each and feeling guilty for not doing enough for Alden. He’ll be 21 months on Sunday and I am struggling with the same thoughts about his slow progress and like you, I know it will come, but that knowledge doean’t always help – it isn’t enough some days. At times I’m overcome just watching him try to master the simplest of things that I took for granted with the other boys. But at other times I am able to whole heartedly celebrate his little victories. I’m guessing that will be another lifelong dicotomy in this new world of ours.

    Regarding the sippy cup – have you tried one with a straw? Our OT recommended that. We actually had A drinking from a regular straw first so he could master it and then switched him over to the sippy cup with a straw. The regular drinking straw was helpful b/c you can pinch it to slow the flow. We’ve had the most luck with the Nub brand straw cup which I believe I get at WalMart in the baby section. Good luck and let me know! email me anytime about anything
    Jeannette

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