I Wish.......

I Wish I could be dealing with a bratty 7 year old tantrum instead of dealing with screaming fits that last hours with unknown cause.

I wish I could be burdened by my daughters occasional restless nights sleep instead of administering 2 sleep meds every night and being pleasantly surprised at a full nights sleep.

I wish I could be talking to my daughter about a mean girl or the boy in her class that's teasing her rather than desperately trying to get her to tell me her basic needs through a computer.

I wish our trips to the ER were because my daughter was being a bit too fancy on the monkey bars and took a tumble rather than because of seizures.

I wish I could be meeting with my daughters teacher because her math skills need improvement rather than needing to home school her because the school system is unequipped to educate a child like mine.

I wish I could scold my daughter for saying a nasty word or for hitting her brother or sister rather than dreaming of the day when an actual word comes from her lips or a purposeful movement comes from her hands.

I wish I could hear my daughter complain about how much she hates what I made for dinner rather than having her obediently open her mouth while I spoon feed her.

I wish our nighttime routine involved a shower, reading time and then lights out (even if I find her later reading under the covers with a flashlight), rather than me having to bath my 7 year old, dress her, brush her teeth, read to her, administer meds and hook her up to her tube feeding.

I wish I could punish my child for crossing the street without looking both ways or running over to her friends house without letting me know instead of having to put my daughter in a wheelchair and pushing her across the street hoping we will find someone at the neighborhood park that would stop and say "hi" to her.

I wish I could be searching the Internet for a new recipe to make for dinner rather than searching for the latest research in Rett Syndrome.

I wish my oldest daughter could do her little sisters hair or pick out her clothes rather than the other way around.

I wish I could polish my daughters fingernails rather than searching her fingers and hands for callouses and skin breakdown because of all the hand wringing.

I wish we could be saving for a family trip or a new big flat screen TV rather than saving for the next needed medical device or an intensive therapy program.

I wish my husband could come home early from work because it's a beautiful day and we want to spend the evening as a family rather than coming home because it's only noon and I'm already in tears from a difficult day and he has to take over.

I wish a respiratory infection would bring the annoyance of a couple sleepless nights, steam showers, a pediatricians visit and a possible antibiotic rather than all of the above plus breathing treatments, dehydration, weight loss, labored breathing and possible hospital visit.

I wish there was a cure for Rett Syndrome.

I will continue to pray that all of these wishes come true but if they don't then I pray for increased strength for the difficult days, increased energy for the sleepless nights, increased resources to meet all of my daughters needs, increased peace to make it through the sicknesses and screaming fits and increased tolerance for the typical friends that complain about things I can only wish for.

More Special Than Special

For the past 6 months I have been trying to take Annie to a Special Needs Social Night.  It's held the first Friday of every month and it just so happens that those Friday's we have either had something going on or she hasn't been feeling well enough to go.  Last Friday I was thrilled to finally get her out and socializing.  She's had such a rough time lately and has missed lots of bible school, I just felt like Annie was dying to get out and have some fun.

Annie's helper was over that day and we started trying to figure out what would be the best form of communication for Annie while she was there - her computer, program her sequencer, use eye gaze, etc.  We started reading the flyer because it listed the things that they would be doing that night.  I was caught off guard as I read - "puzzles, games, dance party, pizza" and realized Annie can't do any of these things.  This was supposed to be a special needs social night and even at a special needs function Annie wasn't able to participate independently in anything.  For flippin' sake she wouldn't even be able to eat the pizza - 1 she can't eat independently and B she's gluten free!

Unfortunately the day was pretty bad and as we rolled into the evening it was clear Annie wasn't going anywhere.  I guess, in a way, it was a relief, I didn't have to worry about all that we couldn't do at the social night because we weren't even able to go.  What a let down.

The thing with special needs is that it covers a HUGE stretch of kids.  Ones that are incredibly high functioning that may have a little social or texture issue to those like my Annie - unable to do a single thing on their own.  This reality was all too clear when we were in therapy, Annie would be sitting in her wheelchair crying and I'd be holding up Yes/No cards in an attempt to figure out what was wrong while another mom was walking in with their kiddo skipping and singing and carrying their favorite toy - And of course that was the same kid who's insurance approved unlimited therapy sessions...... but that's another story.

Even within Rett Syndrome there is a huge spectrum, there are kids that speak a few words, kids who have retained hand function, and kids who can walk, even run.  Medical issues vary too, some kids are able to take all their nourishment in by mouth, others who have never  had a seizure, and others who have no issues with their bones.  Don't get me wrong, even the highest function Rett girl leads an incredibly difficult life and regardless of the issues these girls face or don't face this is NEVER an easy road but it's a pretty scary place when your kiddo has (arguably) the most severe and disabling condition and within that condition she is one of the most severe and disabled.  OUCH!

It seems there isn't really a place where we fit in.  On top of the medical and physical issues we are dealing with a kid who is very much aware of everything.  She is a typical little girl in a broken body which means she understands that she is the most severe of the severe and she is very much aware of all that her peers can do, all she can't do and how there really isn't a place exactly for her.

Next month we will once again try for the special needs social night.  God willing we will make it.  I  pray that we will be OK with just the socializing part and not the activities and that maybe we will meet another kiddo and parent that are more special than special just like us.