Sunday, August 24, 2008

I realized something today

When I became a mom I think I thought that it was going to be as easy as it looks on TV. Anyone who is a parent knows that isn't true.

Sophie has not had a very good couple of months. For those of yall that don't know me well, Sophie was diagnosed on the autism spectrum and has severe sensory processing disorder. She also has a few health problems.

Because of her sensory integration whenever there is even the slightest change to the weather, her daily routine or if she has a cold or is constipated her entire sensory system goes haywire. Her behavior is awful and she has a lot of ritualistic and self injurous behaviors that only come out when she is in 'sensory mode'.

This past week has been particularly rough for us. First there was the septal hematoma and the swelling from that caused pressure in her face and her sensory was way off BC of it.

Then she became constipated and BC she had a bad belly ache her sensory again was off.

For anyone who does not know about sensory integration or does not have a special needs child it is hard to say you understand. Just the other day Sophie and I were walking through petco and she became extremely agitated BC there were no 'nemo' fish on display. She was having a sensory day and when she has bad days she doesn't nap. Its like her body won't let her sleep. Anyways, I was trying to calm her down when this woman standing nearby says "oh honey, I know that feeling, my daughter throws a fit to when she wants something she can't have".

Alright. You know the feeling eh? You know how it feels to have a child who is constantly struggling? A child who you so desperately want to make all of their pain and frustration go away, but can't?

No. You don't. A majority of parents don't. Please don't get me wrong, I realize that parenting a "normal"(god I hate that word) child is HARD work but until you are the parent of a special needs child you have no clue.

Ok ok now that I have completely gotten off topic let me get back to what I was talking about.

Yesterday was another rough day. I had been hit, kicked, spit on, hair pulled, eyes gouged. You name it. I had yet again scrubbed poop out of my carpet. I was so completely exhausted that I literally just broke down. I cried for an hour straight. I'm tired. I'm literally just so tired. I have not slept over 4 hours a night in months.

But, when Sophie woke up last night with a tummy ache I went in to lay with her. She climbed up on to my stomach and curled up and went back to sleep. I just wrapped my arms around her and I just cried.

I realized that no matter how stressful my life is, no matter how little of sleep I get, it is so completely and utterly worth it. I love that kiddo more than anything.



Anonymous said...

One of my best friends son has autism. I often see what she goes through. The slightest thing can set him off. For some reason, he loves me. She says it's because no matter what he says, I listen to him and most others don't (he gets excited and rambles). Visitiation with is father is the worst. He tells the boy he's coming to get him and then doesn't and she's left with the "mess". I always wish I could do more for her.

I wish you all the best. I can tell you love her. No matter what, she's a blessing.

Andrea said...

I'm sure the lady in PetCo was just trying to make you feel less alone in that moment. Everyone knows how hard it is to feel like the lone mom, the only one struggling with whatever their child is dishing out at them, especially when it happens in public.

Charming Lamb said...

I won't even pretend to understand.

From one mom to another...I'm sending you the biggest bear hug ever! :)

Kim @ What's That Smell? said...

We spent a couple of months where Abby was allergic to milk and we didn't know it. No matter what I did she just screamed. She was a newborn and certainly couldn't tell us what was wrong. They finally diagnosed it and she's doing great.

While I cannot imagine what you go through, I've glimpsed something similar for a brief period and I've told you this before that I truly admire you for the way you handle all that life has thrown at you with your little angel.

Minxy Mimi said...

((HUGS)) you need a break, Heather. Sophie is a beautiful child with a wonderful mommy. BUT, no matter how much you love her you need to have at least one good nights rest and soon. I hope someone out there can help you, otherwise stay strong! PS.... Dont get too mad at the lady in Petco, that could be me one day!

Karen of Sillymonkeez said...

Sorry it's been so tough. I agree that it's totally worth it, although some days it's hard to remember that. ;P

Karen of the MomDot Street Team

Anonymous said...

Heather you're an amazing Mom. Honestly when I read stories like this I just don't know how you do it but I do agree kids are worth it.

JLT6907 said...

NO. A parent without a special needs child cant say *i understand*. But I do understand. I hear about her bad days, day after day. And I feel so bad for her and for you. bc when she's in these modes, she doesnt realize what she's doing. Thats just so sad. But I am here for you. And big hugs to you both!

lonestar818 said...

(((hugs))) my guys have autism & sensory integration disorder so I kwym about the routine changes and such, the good news is it does get better over time. At least that's been my experience (and believing that it will get better again is what keeps me sane w/ my youngest so it HAS to, lol!)

She's a beautiful little girl and she's incredibly blessed to have you for a mother!