Wednesday, September 29, 2010


(I am warning you now that this is a slightly long and rambled post. I have so much in my mind and heart at the moment I just can't seem to organize it into a nice short post.But since this is my best form of family journal I feel I need to get it out. Ever feel that way? Sorry!:) )

I am constantly amazed by this little girl. She is teaching me so much about life that I can't even begin to tell you. This past Monday she started her 3rd round of constraint therapy. That is where you cast the strong arm to force the weak arm to work. This time has been a bit rougher for her than other times. She is now pretty independent and I just took away her only form of independence. In short I suck as a mom. She hasn't said that but I think she feels a bit betrayed. Every day she asks me to take her back to Shriner's so that they can take her cast off. I keep telling her that she needs it on for 2 more weeks and she will get big tears in her eyes and say "OK mom. Just 2 more weeks!"

I am amazed at the wise and determined personality that is in this little girl. I feel like I am going to cry every time she falls or can't keep up with the other kids. My heart broke tonight when she started to cry and ask me to read her one more story. You see every night she "reads" to herself books until she falls asleep. Without the use of her right arm she can't hold the book up so she just waits in the dark until she can fall asleep.

I don't know how to be a parent to a child with special needs! I am trying to do what I think is right and trying my best to follow the advice from the professionals but sometimes I want to say to the therapists that work with us, "Can you tell me what I am supposed to say to my little girl when she comes in crying because she can't keep up with the other kids?" or what to say to my 5 year old who the other night told me, "Mom. Tomorrow I think we need to teach Claire how to walk normal. You know. Like not drag her feet anymore." None of them have covered these topics with me. I wish they would.

The thing is that I am learning, as I am stumbling along this road that I don't need someone to tell me how to respond. Because Claire is showing me how to respond. Daily.

This past Sunday was the Primary Program. She had one line and to be honest I didn't know if she was going to say it at all. As her class stood up and took turns to say their parts Claire got right up there and said her part loud and clear. She didn't even hesitate and didn't care that the others could not understand her as well. She was proud to do it and I was proud of her! My mom and I sat in the audience and both just about started to cry. I couldn't believe that my little girl who was not supposed to talk or walk just did both in front of an audience.
She had just taught me once again how determined and independent she is and will continue to be. I am so thankful for this little person who continues to teach me daily what I need to be grateful for and what I take for granted. Thanks Claire!

Wednesday, September 1, 2010

Pants are NOT leggings

I just had a phone call from my husband. He was taking Emma to school and on the way (the whole 2 min) she told Kent that she was supposed to wear pants today and not her beautiful fluffy pink skirt. Kent then called me and I ran upstairs and got what I thought were pants. Ones she would be thrilled about as well as her Twinkle Toes shoes since the sandals she was wearing were probably not right. (The Twinkle Toes are another story completely. Another blog another day!)

So I am thinking I am being the super mom and run out to meet them with the extremely cute pants and her twinkle toes expecting a huge "Thanks so much mom!" Instead I was greeted with a "Those aren't pants mom. They are leggings! I NEED pants." Stupid mom. What was I thinking?

Since when did my 5 year old become the authority on pants?

Emma with the infamous (at our house at least) Twinkle Toesalt="