Thursday, November 25, 2010


I have thought several times over the last few days that I should join the what am I thankful for bandwagon. Each day I read online tidbits about what people were thankful for. Sometimes they were honest thoughts and sometimes jabs at friends or family. I am going to try to express my honest thankful thoughts.
I am Thankful....
For Jesus Christ. For re-entering my life. Or should I say for me letting him back in because HE never truly left. I left him. When I married an Atheist almost 11 years ago I put Jesus on the back burner and kept my faith silent. I didn't read my bible except to look up specific passages when sent to me by every day believers and when I silently prayed at night. Never thanking him. Just asking for what I wanted or needed.
When Abby..oh crap gonna cry..left us..when she became trapped in her own body I prayed,begged,pleaded,promised and more with my Lord. I knew no where else to go. When Abby continued to deteriorate I prayed and begged for a miracle that never came. When Abby was diagnosed I felt abandoned by the God whom I had abandoned years before.
In the fall of last year I found a church..actually my son found it. It is a very small congregation but the largest of heart. I was nervous about taking Abby to church. I was afraid of the looks,stares,whispers. We got none of that. They embraced us whole heartedly and more than I thought was possible. They smile when my daughter is yelling and laughing during the sermon. We get an Amen when she blows raspberries during prayer.
A few months after we joined they started reading this blog. They knew we were struggling and offered to help. When I told them no they told me no and built my daughter a bed. When she is being too loud and I try to take her out the Pastor will stop his sermon to tell us to sit back down. This church and the people there have saved me this past year and I look forward to nothing more each week than Sunday.
I am Thankful for my fellow Rett Parents. What an absolutely incredible community the Rett Syndrome world is. Not a family you would wish anyone to ever become a part of but the most loving nonetheless.
Rett Syndrome families answer the phone in the middle of the night because you cant breath and will pace their own kitchens when your daughter is sick. Rett Families never throw away clothes or supplies without offering them to other children who are going without or may need them. Rett families open their homes to strangers coming to town to seek treatment for their kids rather than have you stay in a town you don't know by yourself and ask nothing in return. They call and email doctors in the middle of the night with questions for parents that are too afraid to do it themselves. They buy airline tickets for people who have never shared a cup tea..all to try to relieve any burden a fellow family is going through. We all do it. They all do it. It is incredible and I don't know that I could exist without them.
I am Thankful for the doctors office who hired a special coordinator so the Special Needs parents can have a person to call directly when they need anything or have any concern. I know I personally terrorize this poor woman and don't know how she puts up with any of us but she does and she does it with so much love..Thanks CB!
I am Thankful for the neighbor who gave us his parking space so we could park on the end last week so we could more easily get Abby in and out of the van.
I am Thankful for the friend who called on Monday to tell me something her cousin did. We laughed at this poor woman's expense until we couldn't breath...its OK though..she would of been laughing too if she was with us. I mentioned that I was sick of turkey but still needed to go to the store. She and her 80 year old mother showed up a bit later that evening with a spiral ham and all the fixins. Just so I wouldn't have to back out..and because she loves us. So many people in our lives..friends and family have just stepped away because they don't know what to do or say. Or because or lives and our situation make them uncomfortable. Maybe because they get sick of hearing it. It doesn't take much. We don't want your money or your pity. A hug, a dinner, a movie..the same things we wanted before...we don't have cooties. We are not boring. I may not have any idea how to have a political conversation anymore. I know next to nothing about current events. But I'm still me and we're still us. I'm thankful for the people who haven't forgotten that.
I am Thankful for my children. I am Thankful for my son who is paying me back for being a teenager. As much grief as he gives me..and he does..I was a bad kid. He's lippy,overly opinionated, inconsiderate and rude. I was double all these things and a true teenager of the 80's and I thank God that he is smart enough not to do the things I did or hang out with the kind of people I did. I may complain about him but it could be worse. He could have mirrored me and for that I dont think I could recover. I am Thankful that when he thinks Im not around I hear him say things to his friends like, "Dude my Moms the S..T. She's like my best friend." And I quote
I am Thankful for my daughter. This little special girl has taught me more about love,heart,hurt,innocense and God than I ever thought possible. Always a smile. So full of love and so very happy in a body that doesnt work and a brain she cant control. She's happy. She is Love. Why should I complain about anything ever when I look into that little face and my own eyes stare back at me with the biggest smile. Every time. I think she pretty much thinks I'm the S..t too.
I am thankful for so many things....
I am blessed.


Zenaida said...

Thank you for sharing with us...brought tears to my eyes. I am grateful for all these people you mention on your post; for making your life a little easier.



Caitlyn said...

Although we have never met, I would have to agree that you are most def. the S..T!!!

Anonymous said...

I'm thankful for this blog. Since my daughter was diagnosed with Rett I have read every one of your entries to find out a bit more of the day to day life to expect. Your writings have given me and my family so much knowledge that you just dont find from doctors and therapists until its too late to be prepared. Thank you