Friday, November 25, 2011

So much for being over it

I am for the most part over it. On a normal day to day situation I can deal. No, seriously I can.

Yesterday after dinner my son and I were playing with Abby who was babbling on the couch. My 7 year old, babbling like a one year old and the waterworks started.

I asked my son if he ever wondered. If he ever wondered what our lives would be like had his sister been normal. Would I have gone back to work? Would we not be dirt poor living on one income? Would she have helped me on Thanksgiving....or complained and threw a fit cause she didnt want to...stomping out of the room..blaming me for the end of the world for being asked to set the table?

By the time I got it all out I was sobbing, my daughter still babbling and chewing her hands was smiling at me on the couch.

My teenage son, wise beyond his years. He looked at me and said,"Mom. stop. She's the happiest person I have ever seen. She wants for nothing and all she knows is she is loved. Her whole world revolves around her and she loves it. Stop doing this to yourself."

Wow. I wonder if he would be so smart had this not happened. He seems so much older than his peers. Is that a good or bad thing? I don't remember being that sensitive at his age. I pretty much cared about nothing outside of myself at nineteen.

I hope more than anything that this has been for a reason. To teach my son compassion. To do whatever it is it is supposed to do for me. Make me a tool for others. I don't know.

Living with Rett Syndrome...we don't often say this out loud. It sometimes feels like our child died one day. We call it D day. And we are forced to live on with a trapped soul without a body that works. Holidays suck. Hurts like hell.

There are day's...fewer and further between...that I don't think I will survive this. Like today

Thursday, November 24, 2011


Today I am thankful. As little as we have, we have each other and love.

I am Thankful that my son finally got a job and will start this weekend.

I am Thankful that we finally have a new caregiver, make that 2. One during the week and one for 8 hours on Saturdays. My back has been out for almost 2 weeks again. As I cannot stand or sit without assistance I am so thankful for caregivers.

I am Thankful for my daughter. More than anything she has taught me what love is and how to be a good person...even though sometimes my mouth gets away from me. For those affected by my temper I apologize.

I am Thankful that my kids are not selfish and realize that Christmas is about love and least I hope they do. I guess we really only know that Abby is happy regardless and expects nothing and Kyler is finally learning that everything is not about what you get.

I am Thankful that I was finally able to quit smoking this year...even E ciggs. Now if I could walk Id tell ya if I was able to get up the stairs better.

I am Thankful for my extended Rett Family...even though we rarely see each other in person and when it comes down to it we'd all rather wish that we'd never had to are THE only ones that get me and I am eternally grateful that you have not left me.

I am Thankful for my church family. Always so genuine and filled with love. Every one of you. Thank you.

Tuesday, November 15, 2011

I am not Superwoman

Big surprise eh?

Eh? Yeah I have been awfully Canadian lately. Don't know what's up with that except for maybe the ton of special needs Mom's I have meet through the group A4CWSN lately.

I threw in the towel last week and finally called the agency to get a caregiver back over here. After 14 caregivers and nurses in 2 years I had had it and kicked everyone out of here. Part of me had the guilt trip that I stay at home so I should be able to take care of her on my own. The other part of me was just sick and tired of having people in my home and in my life that were weird or stole or you couldn't count on. 14 in 2 years. I liked 3 of them.

This summer I tore discs in my back and went into months of Physical therapy. Now I know I have a bad back but nothing I seem to do stops it from going out at the littlest sneeze or lift. Abby weighs 50 pounds now and we have 3 floors....I feel like I'm justifying this decision. I'm not. I'm just getting it out. OK Yes I am.

Late this summer I passed out on my front porch after no sleep for a few days and heat exhaustion. That incident has cost us almost 4 grand. 4 grand when we dont have 4 dollars. I just can't do it anymore. I need someone with her 24/7. Since that is me a 4 hour break a day shouldn't leave me feeling this guilty should it? I do it by myself all night long and while getting her ready for school. It's time someone helped me after school.....OK yeah I feel guilty. Why? Am I being lazy? I mean she is gone from 830am to 430 pm right? Auuugghh.

Saturday night for the first time in forever I went out. I had won tickets to Guns N' Roses. I went with my son. Yeah no kidding. Old ass me rocking out in the pit right against the stage. I had the time of my life. Everyone has their ROCK or Music Legend. That person for me is and always has been Axel Rose. I haven't always necessarily agreed with him and his decisions but that voice and that music. Never ever get tired of it and he was 10 feet from me. And he brought it. No Slash. No Duff and he tore the house down!

To say I got beat up,smashed and was sore and tired after the concert would be a joke. I felt like I had been in a car wreck. I laid in bed when I got home wondering if I should go to the ER or something. I hurt too bad to move or sleep..then it started. Out of nowhere Abby started to projectile vomit. 4 am. I could barely stand and I had to get up and turn,vent and hold her head to keep her from choking on her own vomit. I had to do this with no sleep for 2 more days.

This is the life I live. I should not feel guilty.

Wednesday, November 9, 2011

Scoliosis update

Unfortunately I have no pictures or video for you today. My scanner on my printer isn't working.

If you have been keeping up or following this blog you will know that with Rett Syndrome(MAN I HATE THOSE TWO WORDS) comes scoliosis and we have been dealing with it since we first noticed it when Abby was 3. Back then she had a slight 15 degree curve and nobody saw any reason to do anything but monitor her.

Come 5 years old she was at 23 degrees and we started PT. In 6 months we got it down to 17 degrees and we were thrilled.

5 months after she started Kindergarten and a new school she was at 34 degrees and they were talking rods the length of her back and a risky surgery. I got advice from a few other Moms and started the search for a massage therapist and a chiropractor. It took 5 months to find someone to take her on and with the help of some friends we were able to put together and pay for a therapy program for her until the end of the year.

Today we took her in for xrays and her curve is between 25-32 degrees depending where on the bend they measure. Not a miracle but definite progress. The doctor ordered her PT at school to be tripled(they wont do it) so we will soon be looking for therapy through the hospital. I wish we could do it through school but I doubt that will happen considering our district has one...yes one physical therapist. He wants us to continue the Chiropractic and the massage although I don't know how we will pay for that one after the end of this year.

And here's the kicker..don't freak out but...we are going to brace her. Studies show bracing doesn't usually work for RettGirls but we have to try anything we can before we let them cut her open and stick metal in her spine.

That's all I have for now. Keep praying and sending good vibes our way. We appreciate it!

Saturday, November 5, 2011

Abby's 1st field trip and play

Abby had her 1st field trip this week. A wonderful day for the both of us. We went to Crown Center and had lunch with all her friends before going to see a play.

Abby's friends came and got her so she could go sit with them.

Abby and her aide. I think I was technically her aide for the day, but these 2 have a special relationship.
One of KC's many fountains
Abby and her Emma
Looking up at the Marquee. Priceless!
We saw a musical version of Horton Hears a Who. It was awesome!
The Princess after her play. She told EVERYONE about it for days!!!

Thursday, November 3, 2011

The Day I got over it.

It was November 2 2011. Yesterday in fact.

I didn't realize it as the day played out. It was only last night after I thought about the day that I realized everything is not Rett Syndrome. I am not a Rettmom. I'm Abby's Mom. She is not the girl with Rett Syndrome nor is her last name Rett Syndrome. She's my little girl and she's perfect.

Yesterday I volunteered for a field trip. I didn't know where we were going or what we would be doing but I knew they would need my help.

I never thought once about us getting on the short wheelchair bus while the other kids ran to the bigger buses. I didn't have to walk away and cry while the nurse hooked my 1st grader up to a feeding while 200 other 1st graders laughed and talked. I ate my lunch. Even when a group of girls asked if they could take Abby to their table. I just let her go.

When I noticed a toy store on the second floor of the place we were at I asked permission to go look while an aide kept an eye on Abby. I walked up to the second floor and I looked in the windows and I smiled at the children there. I looked at the isles of toys on the shelf and I didn't cry at all the stuff there would be no point in buying because she can't play with them anyway .I looked at the Tea Set and smiled.

We sat in a tiny theatre and watched a musical version of Horton Hears a Who. I sat on the floor next to her wheelchair...surrounded by 6 and 7 year olds and I enjoyed a play. I held my daughters hand and smiled and nodded at her when she looked at me in wonder.

Being surrounded on all sides by "typical" kids who can and do didn't rip my heart out. Does time really heal all wounds? Even this one? My daughter was just my daughter. She was Abby. Last night I cried myself to sleep with relief. Rett Syndrome may have a hold of my daughter's body but it does NOT HAVE CONTROL OF OUR HEARTS. Not anymore.

This year...come hell or high water...she will get that tea set for Christmas. I'll pour that pot for her and hold that little cup to her lips. I can't wait!