Wednesday, September 7, 2011

"Does she have a Syndrome?"

Ive never had anyone ask me "what is wrong with your child?" Most just approach madie and say "Hi" and smile at her and tell me she is so cute.. and when they get no answer from the gal who could care less and probably doesn't like them in her face they just back off...I never feel the need to go into she doesn't understand or care less about you so go Or the Ol "She has a unknown disorder with hard to control seizures" thing..But its tough. I just want them to let me poke around and chat with madie on my own..even though they are just being nice. Perfectly kind strangers who say "Hi hi hi" over and over and madie just munching on her hands and making noises and faces..breaking my heart that she just doesn't say a simple "Hi" to satify the curious. Sometimes I just go with the Shes sleepy thing just to satisfy them.
I wonder how it would be to raise that Normal" Child?? I wonder how people deal with that child who runs around all over the house exploring and sometimes breaking things or coloring on walls..I would flip my lid! But am Envious beyond...
When we go out to dinner she is always offered a booster seat or a highchair and we decline saying that she will be fine in her stroller...sometimes I think folks wonder why we do not put such a big girl in a booster but screw em. let them think. I like when they offer (more for me to doodle with!)

I was at the consignment store today and was the only one in there walking with my little tongue roller and whistler thru the store..when the woman who ran the place flat out asked me if madie had a syndrome..Eh? I was kinda thrown off by the blunt question but then she began to say that her daughter who has some syndrome I cannot pronounce makes the same noises as Madie..But to just ask "Does she have a syndrome?" was kinda weird. She was nice I guess but I certainly did not want to go into Madies medical history. I just told her that she has a seizure disorder with no name right now. That she is delayed and that she will be 5 in Oct. Awwwwkward! She was already kinda unprofessional on her phone talking about her rent for the store being due...ehh LOL what can ya do!? :P

Most would as us how WE take care of a special child and that they could never do what we do..I just say that its all I know. My Sweet Perfect Madie. We have the ability to adapt wherever we go..bringing all we need with us to keep madie comfy. Of course it breaks my heart not knowing if my madie will ever walk or talk or write her name on my wall..BUT as we allllways say we take it one day at a time. What else can I do? If I loose hope and faith for my girl I wll be nothing..that is the honest truth!
Today she has been very constipated and sleepy...barely a nap out of this kiddo...she was awake in her bed at 530 making noises which progressed to her squawking crying..which like a switch stops when anyone walks in the room to get her out of bed. Sigh...
Sorry Kiddo..this mama is not up till 730-8 and even that is too stinkin early for me! LOL She loves to whistle...its the funniest when a good loud one comes out. New Noises are always welcome Miss madie. :)
Hubby and I are hoping to get out to dinner tonight early enough to get home and get madie her meds and to bed...ehhh not a date night since madie is coming but she is USUALLY ok in restaurants..Just get her content (and mom a glass of wine) and with her noises and super cuteness she gets smiles from all who pass. :)
I guess I will leave you with that. I hope everyone is happy and well..Please extra good thoughts for Miss Reagan in the Sweetpea prayers section over there of my blog she is having some yucky tummy troubles hoping she gets over that soon. I will catch up on all your stories this weekend.

1 comment:

Reagan Leigh said...

Today has been a better day for Reagan...thank you for your prayers! I had someone ask me the exact same question today "Does she have a syndrome?" Reagan wasn't there...I was just explaining to a stranger that my 4yr old (and unborn child) are not the perfect age 4yr old has "medical issues". Then came the syndrome question. It was an odd way of phrasing it, but I didn't mind it all that much. It does get irritating having to go into a 45min discussion about all of Reagan's issues. Sometimes it is easier just to let them think everything is normal...