Saturday, October 23, 2010

Autism Every Day -

I was at the doctors the other day because my hair has been falling out like crazy for three months straight without slowing down at all. It's beginning to freak me out. It only lasted for around a month with Savannah. He had me get my thyroids tested. I'm still waiting for the results.I had Xander and Savannah with me. He asked about how Savannah and Xander are doing and I told him Xander still seams to be sick. He still wakes up two to three times a night because he can't breath. He checked Xander's ears for me and they're not infected anymore! We might be Scheduling Xander's first surgery soon, for his Polydactyly . I gave him Savannah's results for Autism for him to copy. Right now we can't really afford to go to any classes or take her to anything to get her extra help, but at least I'm able to go to a support group once a month at Kids on The Move, and I have lots of friends for support. He suggested that I go online and fine out as much as I can about autism, and as I watched video after video the tears came again and again. It amazed me how much the same these mothers are feeling and going through the same feelings and the same fears, that I am not just about autism but mostly about bardet biedl syndrome. It has changed my families lives forever. The day Savannah was born, she changed mine and Courts life permanently. She changed who we were. Something wasn't right with our precious little girl. As we watched her grow and she missed milestone after milestone, and kept gaining weight we worried more and more. She didn't act or interact like the other babies and toddlers. Sometimes I feel like no one understands, and no one can really know how each moment of every day breaks my heart, watching my children. I feel like the dream has died, my dreams as their mother watching them grow up and wondering if they will have all of the same opportunities that normal children have, make lots of friends, fall in love, graduate, get married,even if they will ever even be able to have children. I know for sure that Xander most likely won't. Only two males with BBS have ever had children. BBS effects just about every thing we do. Going anywhere with Savannah is a huge deal. I have to be ready, knowing that she will probably run out into the street, not listen to me, throw herself onto the floor throwing a tantrum, while other parents look at her and me like I'm a horrible mother. BBS effects our possibility of having more children. There is a 25% chance with each pregnancy, and we've managed to have two with BBS. I want so badly to have one more child, but what If they have it too, and what if it's even more surveyor. Can we go through it all again? All the pain, all the sleepless nights, everything we are still going to have to watch each of our children go through. I know that sometimes when I watch other children playing, sometimes I wish that my children were normal, and healthy. We could go places where Savannah could play with other kids and not just play by herself or overreact to things. She'd be potty trained. We wouldn't have to go to all of these doctors appointments, just to make sure they are ok. I wouldn't have to worry about every little thing she eats, and when she has a cookie or something she likes I wouldn't have to be worrying about how much she might gain, or if she's going to get diabetes. I wouldn't worry so much when they are not with me. They could be just like all of the other children. Savannah can't control her weight. She can't eat just like every other kid. She's going to have to deal with her weight her whole life, and I'm really scared about her being picked on or left out by other children or having bad self esteem, because I've struggled with it my whole life. I don't want my daughter to feel bad about herself. She is so beautiful! I love my children more than anything, and even if it takes longer to reach the steps that come so easily to other children, and even if they have their little quirks. In a way I think it makes me love them more.


  1. Nicole,
    I love you so much. And I'm so sorry that you are going through such hard things. Please know that I am here for you.

  2. Thank you for sharing this video. I learned a few new things and I cried. I know you and Courtney are wonderful parents. And you have truly amazing children.

  3. I can't even imagine- I have a lot of fears as a parent but they are different from yours. You are a wonderful mom and they need you. Do your best and let the Lord do the rest. Love you.