Friday, February 11, 2011

Bummerville

Welcome to Bummerville. If you look to your left you will see Rett Syndrome,Seizures,diapers,meds and g-tubes. If you look out the window to the right you will see examples of complete hysteria,exhaustion and little pieces of one Moms heart scattered to and fro.

What a sorry sack I am lately huh? I think that I have decided instead of a quarterly nervous breakdown I'll just do it once or twice a week for sh*** and giggles.

Unfortunately Abby's seizures have continued. They arn't bad considering what I have seen and heard of some Rett Girls going through..They are totally breaking my heart but..considering...it could be worse (Please God don't let it get worse)

They have been lasting 1-3 minutes and she recovers quickly. The first few completely wiped her out.

On Monday the school called me while I was doing my --screw it I'm gonna lay in bed all day and feel sorry for myself routine. Abby had just had a cluster.(one after another) She vomited towards the end of one and as they were cleaning her up she went back into it. Her Dad went and got her and brought her home. She came in the door smiling like she just got a get out of jail free card.

That day I called the Neuro's office and had quite a large cow on his nurse over the phone. On Tuesday they called with an EEG appointment followed by a Neuro appointment for Wednesday.

We stayed up pretty late. Midnight for Abby and 3 am for me. Got up just before 5 am. She of course did not have a seizure during the EEG. I however, had to close my head and turn my eyes cause it makes me nauseous.

We met with the Neuro...I tried to fight the meds. Tried to excuse away the episodes as maybe something else. Begged to wait. In defeat I finally had to give in and realize that she is having seizures and I have to help her. Burying my head in the sand, praying,crying and refusing treatment isn't going to stop her from choking to death in the middle of the night of her own vomit.

I hate that Rett Syndrome wins every battle...insert a barrage of profanity here...

Why am I so devastated? For people to say seizures are a part of Rett Syndrome is like that bunghole person that always has to make some stupid comment...like when my dad died...,"He had cancer. It's not like you didn't see this coming."

For the most part if girls with Rett are gonna have seizures it is almost always by 3-4 years of age. We had beat that by 2 years. I had found God again. I just didn't expect it. Not at all. Walking into that room that first night I felt ambushed. Like I walked in to an intruder that had ahold of my baby and kicked me in the face when I walked in the door. Now I have to live with that happening at any time. I feel trapped and held hostage..

Whole lot of I's there huh? Poor me. Imagine all that and being 6. When I was six the only thing I was worried about was ice cream cups after lunch and hoarding all the blue crayons. I could scratch my own feet. Go to the bathroom. Eat. Breath. Walk.Run.Talk.

I may be crazy...OK who am I fooling? I am crazy. I always feel like Abby is being punished for something I did. Some sin from the past that I haven't been forgiven for. For being a bad kid. A bad sister. For making fun or not helping someone. For my years between 16-22. Was I too selfish? Did I bully someone or hurt them terribly?

I sometimes...there's that I again..lay next to her at night. Spooning with her and pray to God that he will take whatever she needs to make her whole from me and give it to her. Weather it's a hormone, a gene, a protein..a thousand genes..take it from me and give it to her. I would be forever grateful to be a blob on the floor than see her have to struggle one more day.

The lack of sleep is what is making this Mom even crazier I think. Per Docs orders I have her in bed with me. I'm up and on watch if she stretches,sighs,makes a noise,turns over. That shudder thing we do after she stretches darn near gives me a heart attack.
Bummerville.

1 comment:

Sam said...

I'm so sorry to hear Abby is suffering with the seizures, I hope you find some way of controlling them quickly and things can calm down for you.
I don't know how you feel because my daughter hasn't had a normal seizure so far, but it's one of my biggest fears. You and Abby are in my thoughts