Monday, December 31, 2012

been there...done that. Welcome home!

Sitting here near 7pm on New Years. Watching Dora the Explorer and watching my baby girl stumble through the room. Walking as best she can in the only place she feels safe enough to do so.

Although she looks like she's doing a pretty good job.....and she is for a child with Rett Syndrome.. I'm sure you can see the camera jump a few times. Our living room seems to be the only place that she will stand and walk without assistance. I'd ask her why but she cannot answer me. Why does one leg stomp out every few steps? I wonder if she has problems with feeling or if it's that "spark" not connecting. How scary it must be. Or maybe she's used to it. They talk about our girls not having great equilibrium. I think of her trapped in a body that does almost nothing she wants it to and being brave enough to walk and dance around the room. Id be scared. She seems so determined to go go go and do do do...even when her body wont let her. If I videoed her 24 hours a day then cut out all the moments she dove off the couch to run to the TV...even though she cannot stand on her own without being helped up and balanced....or the times she hits the gate with her head so she can get to me in the kitchen....or walks up to the fridge and says."uh, uh, uh" while holding her hand to her mouth. Is she thirsty? Is she hungry? She cannot coordinate chewing and swallowing or take more than a wetting of the mouth without choking. But she wants it. You'd see that. Dozens of times a day.

Someone asked me the other day If I thought she remembered being normal. I can't tell you how much I hate those questions. Of course she doesn't. Do you remember when you were two? Or maybe she does....Being that she has had to hear me tell of her losing her capable. The hundreds of stories of what she could do and then always how it ended. Does she think I don't love her as much as when she was perfect? Does she know how perfect I think she is. No more stories of the thief in the night. Not in front of her...ever

So I sit here thinking...making resolutions...thinking about the year that was and the year to come. 2012 was one of the bad years..probably the worse since 2006. I had 2 dear friends lose their daughters and one (older) in her twenties(older in her twenties) oh the lump in my throat...lose her battle..the example of what was in there. I think about what they have gone through and wonder when it will be my turn and how I will do it. If I can do it. I pray that I can live everyday like that day will never come and not obsess with every cough, every seizure until I drive myself mad.

 There were difficulties with my son. The loss of my husbands job, his subsequent 8 days in the hospital...7 in ICU and the near 40 grand in medical bills. I think of the new man he has become and pray that he continues on his positive journey. I thank God for bringing the people into our lives this year that were my rock. I have found there are people who are true and good and that there are people that pretend to be while rolling their eyes at your misfortune. Even if it was something small, it mattered to me. Thank you Irene,Sheri,Silvia,Kelley,Deena,Joan,Heather,Terri,Erika,Mitch, Jennifer, Carey and all of Georges former dance students for everything. Whether it was a ride...a car seat..lunch..a meal...or just caring enough and letting us know. We don't see it as often as you'd think.

So tonight as I watch my child stomp through the room as best she can I think of how thankful I am for the positive. I make a promise to myself for more things than I care to share. I will believe...I will hope...I will have faith.

Any one person or one thing that takes that away will be gone...done without. Ive had 6 years of mourning. 6 years of worry. 6 years of death.6 years of negativity. Whew. That was four 6's and not 3.

I have to get back to some kind of normal so....

Facebook will be a informative and keeping in touch thing and not my only escape...right back into the world I'm trapped in.

My cell phone will be for emergencies and not my life line

I will get out

WE WILL take turns

I will read....books

I will care for and believe in what is right and right front of me...right now

I will not live my life being jealous of the people that are living theirs

That starts now

Welcome home Terri

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