And after the high…

…inevitably comes the low.

Today was just one of those days. I had been cruising on a nice high valley for a while, and had forgotten that awful nagging pain that comes with raising a child with intense special needs.

I took Nathan to see his cousins and since last time he seemed desperate to play with them, I brought his Kidwalk so he could stand and play with them and maybe walk a little.

We hadn’t used the kidwalk in many months so I was hoping that after 3 months of CME, 40 hbot dives, 40 hours of suit therapy – he would look/act different in the kidwalk. But…he didn’t. I know, I know, I can almost hear you saying – there you are with your expectations again! Haven’t you figured out that expectations inevitably lead to disappointment? What can I say – they still get me, even though I know I should know better. Plus he hasn’t been in it in a while, how can you expect him to figure it out again on his first try?

As usual his head was flopping to the sides

He would just stand there and not even try to move his feet

And he was unhappy about having to be IN it

I know it’s irrational but as I always say, this blog is about being honest and REAL, and this was a very real emotion today. It felt like I had a dark dark cloud in my chest and it made me just so sad and upset that nothing seems to ever really work for Nathan.

Even the devices made for the most disabled of kids don’t seem to work for Nathan. His head is always flopping off to the sides, or his trunk falls over, or his hyper tone in his arms and legs prevent him from doing stuff. Nothing that we have for him works right – the wheelchair, the walker, the car seat. We have tried so many chairs, walkers, wheelchairs. Nothing seems to ever work right, and we are always left to battle with body parts flopping in all directions.

When I got home I found a box waiting outside with a new chair that I’d had custom-made for Nathan. I was hoping that this was going to be “the one” thing that would actually work for him – it was custom made! But nope. We went to eat and put him in the chair at the restaurant – his head flopped to the sides. We went grocery shopping and tried it in the cart – the chair didn’t fit.

I was hoping this would be the chair that I could use to put in a double stroller so I can go out with both kids when Belle is born – but it doesn’t seem like it’s going to work.

We even bought a used backpack carrier thinking we could put Nathan in the back carrier and Belle in the front – NOPE, didn’t work either, he flopped in all directions.

I guess it makes me so sad that there are NO PRODUCTS out there that can make life easy for a child with a disability like Nathan’s. And when you compound that with the fact that no amount of therapy seems to even touch him – sometimes it just makes me sad. I read blog after blog and post after post where people talk about the progress their kids are making… and it seems like no matter what we do, Nathan just can’t seem to gain control over his body.

I’ll stop whining now. I guess it’s just one of those days. I can’t even blame pregnancy hormones…these days creep up on me every so often, when I allow expectations to enter my life. And now that I’ve had a good cry – I’m off to bed.

Comments

  1. Just stumbled across your blog via finding you on twitter via who knows how? God. Wanted to let you know that I am going to praying for you as soon as I am done commenting here. Praying for Nathan and that you can find something that works for him. He is so blessed to have you as a mom. Fighting for him, loving him, accepting him, searching for the right devices for him. Such love. He is adorable. His eyes and eyelashes are ridiculous. Gorgeous. He is God’s beautiful child with his head straight up or to the side. Praying for strength and encouragement for you. Motherhood is awesome and so hard. God bless you.

  2. Marcela, it’s so funny that you mention the highs and lows. I go through these constantly. ANYtime we have a big event/activity, I get all worked up for it and then once it’s over I usually cry myself to sleep for my son. You’d think I’d be used to it by now. But I don’t know how you can ever get used to your child being left out of life (so to speak) in certain situations. ((HUGS))

    And we’ve been there with the walker. We hadn’t tried the gait trainer here at home in a while and just knew that Clayton would do something in it while he watched Jackson in his baby walker. NOPE. He just stood there and wanted to watch Jackson. It’s almost like even he has given up and it wasn’t easy to watch. I say all that to say you’re not alone and I hope today is a better day.

  3. http://nonye says

    Hi. I read your blog and I must say that you inspire me. I have a three year old { well almost four} daughter with cerebral palsy. she is yet to gain neck control so I can feel your pulse. I have honestly prayed for Nathan a number of times. Actually I did so yesterday while I was working with my daughter on the exercisses that are supposed to help her gain head control. You have been doing so wonderfully well, so dont give room to the evil one now. Wish I can do half as much as you have done for Nathan for my daughter. I am hoping to try the ABR on her this may.
    Keep the chin up, you are doing everything you should do.

  4. http://Sally%20Fraley says

    hey marcella-
    I’m curious- could Nathan be associating ‘machinery’ with the inability to move on some little kid level?
    He seems to do great when the support and assistance comes from a less obvious source- like a person….I am just poking…but he did ok with his little girl cousin holding him up as he interacted?? Maybe this is a symtom of cognitive awareness??? Also- did anyone ever make sure the nerves in his neck muscles were not damaged…or was it just taken for granted that the brain injury is the reason for this?
    hugs

  5. Oh, this is going to sound awful but I just thank goodness you wrote this post so I don’t feel like I’m the only one who has these days! Ugh!

    I’ve found that towel rolls really are the best “modification” available 🙂 They’ve helped us with getting the various equipment we have to work. But, we don’t have a walker yet and I talked with the PT about it today and it seems head control is our biggest issue, too. So, I’m right there with you.

    The worst part is everyone kept telling us Emma would be mild at worst and she’s not. She’s definitely at least moderate CP and it’s quite hard to have had the news go in the wrong direction. I always hear the dr. said would never and now they are doing it! But, in our case it always feels like the dr. said would and still isn’t doing it. It’s a hard pill to take, but I try not to focus on it. Just take one day at a time and enjoy the ride. And, when I’m in a funk I don’t read the blogs…….I wait until I’m on my highs so I can rejoice in all the accomplishments without my heartache.

    Hang in there. Nathan is healthy and happy and I have a feeling he is going to surprise us all!

  6. One word (or 3, it depends..) ABM

  7. I feel for you.. even though ABR has helped with Christopher’s head control he still has issues in chairs and equipment. Even with his new diagnosis he still has a severe spastic dystonic body. He had a wheel chair clinic today and I am going to get him the snugseat x-panda seating
    system and new mutiposition frame. It was just right for him! Ton’s of head rest options . Look at it!!! snugseat.com

  8. hi!
    sorry about the equipment struggles!
    I hear ya’, sister.
    What is the chair you ordered?
    I’de love to hear about it.
    Hugs,
    whit

  9. http://Cybell says

    Marcela,cuántas veces me he sentido igual??? dando lo mejor de uno,el esfuerzo,perseverancia… y nada parece resultar como yo lo esperaba,probando una y otra vez sillas,aparatos, ortésis,en fín,ahora tengo algunas cosas por regalar que nunca sirviéron,creo que uno como mamá siempre debe tener espectativas con estos niños,ese es nuestro motor para probar una y mil cosas y es tán válido sentir frustación y esa sinceridad que tú tienes para contarnos algunos de tus sentimientos de tristeza es admirable,ya que yo sinceramente me cuesta mucho sacar,pero vamos amiga “PACIENCIA”,de muy bebé le expliqué a Catita esta palabra,cuándo reclamaba por algunos ejercicios yo le decia que debia tener paz y saber esperar,eso es paciencia, creo que nosotras tenemos paz pero nos falta tanto el saber esperar!!!
    Animo y fuerza que todas tenemos esos dias de tristezas,lo bueno que no todos los dias són iguales,seguramente ya tendrás tus dias con un sol resplandeciente!!!!
    Un grán abrazo.

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