Saturday, June 9, 2012

Dear God, can you do something about this Rett Syndrome stuff now please?

Dear God,

It's me Abby. Can I get you to do something about Rett Syndrome please?

Today drove me and my Mom crazy. She means well but sometimes she just doesn't get it.

She is very sick. Her mind is not right. Today when she went to take my brother his wallet at work, she picked me up and walked to our front door. I sat on her hip wondering why she was pointing the car remote at the front door. She would hit unlock then try to open the door. I watched her do it twice. When she was turning with me to shut the door after her mess up, she caught my arm on the door and pinched my elbow. She thought maybe she had hurt me but I just looked at her and looked at my arm. I wish I could have told her. I'm sure she would have kissed my boo boo. Instead she just walked clueless to the car.

She tried to take a nap but when she laid there, all she could do was cough and cough. I heard her call a couple of people to ask if they could come over and help her. I think they said no because she cried and nobody came.

I looked at her in her bed when she was coughing and crying. I wish I could go make her some soup or bring her some tissues. I can't get out of my bed. Believe me I tried.

When it was time to feed me today Mommy did it wrong. She made my bag right. She put all my vitamins in it. She didn't notice when she plugged the tube into my belly that it fell right out and was laying next to my left leg. I tried to tell her while she was eating her soup that I was hungry but the words wouldn't come out. Mom pretends that she knows what I am thinking and just told me I couldn't have any of her soup because it had noodles in it and noodles are made of wheat. I looked at her harder and she thought maybe I didn't like what was on TV, so she kept changing the channel, not understanding that I was telling her my food was leaking on the side of my leg and wheelchair.

My timer finally went off on my feeding machine and when she came over to unhook me she saw the food all over my leg,chair and the floor. It makes me sad when my Mom cries. I tried to tell her it was OK but she just kept begging me to forgive her and telling me she wished I could talk.

I wish I could talk God. I wish me and all my Rett sisters and brothers could talk. We hear the words in our heads but they won't come out of our mouths. We are used to it mostly but when we really need it it is really hard sometimes. I don't want to see my Mommy cry anymore God. When she was cleaning me up she saw the red and purple mark on my arm where she had caught it on the door. Either that woman is a complete bawl bag or she really needs some rest.

Dear God. Can you please do something about this Rett Syndrome stuff now please?

Your child,



Amy said...

You don't know me but I am a friend of Dawn (Reagan's Mommy) and I have kinda kept up with some of her Rett Buddies' blogs...including yours. This post made me cry. I have been praying for over 2 years for Reagan and all of her Rett Brothers and Sisters since I learned of her diagnosis and did my own research on Rett. I pray so hard for a cure that will break your little angel free. I can only imagine how exhausting your Rett lives must be and I would give you a day (or two) off if only I could. God be with you and your family.

karly said...

I'm so sorry. You are not alone, either of you, but it sure feels that way sometimes, doesn't it? Karly and I understand days, like that. I am praying for you. If I could I would be there in person to hug you.
Love, lois

Anonymous said...

I know how tough it is having a child with Rett Syndrome is. My niece Kirsty is 21 now and my sister as struggled with her mainly because she as never walked in her 21 years. So she has to carry her up to bed at night. I think there are different form s of this illness as some girls can walk with help. Sadly Kirsty hasn't walked or spoke a word in her life. She is aware of people and has a huge smile with big blue eyes. We all love her too bits. Respect to you and your family and hope everything turns out for you. Ray Foster from Manchester,England.

3lilcubs said...

This past made me cry. I also pray everyday for a cure! I pray for all the rett angels so they can have a better lifestyle. You are not alone, we all have our days. I suffer from chronic migraines, I have had my moments of desperation. I'm sure our angels wish they had a voice, must be so frustrating for them. I hope that soon there some easy way for them to communicate. Big hugs to you!