(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!
11 comments:
Beautiful post Maria. I SO get what you mean. I just said almost the same thing in my post about House Rules. Hang in there. You are doing a marvelous job.
Maria, that made me cry! I love Claire. Her beautiful spirit shines every time I see her. You are the perfect mom for her. Both you and Claire are amazing and strong. You'll see...:)
This made me cry....Claire is teaching all of us lessons we hopefully are allowing to sink in. We are very blessed to have her in our family.
ALmost crying here too - what a beautiful little spirit you have in Claire, Maria. You are doing an amazing job, I can feel it through your writing. She is beautiful and you have all come such a long way. I am inspired by you.
Oh how I love that little girl- Keep your head up! You are an amazing mother! And that Claire is a strong girl. She told me today "only 2 more weeks with the cast". She won't let you forget :)
You're an awesome mom and we all LOVE Claire! She is such an amazing spirit! We all could learn a lot from her!!!!
Maria, that was a beautiful account of what you go through, and I agree with everyone else that you are amazing. Whatever you do will be perfect. At the same time, I am surprised that none of the therapists offer any advice. Maybe you need to form a support group with others with somewhat similar circumstances. But you already have a pretty strong support group with the family...Love you! Aunt Liza
You are doing great Maria even if I am sure you doubt it at times. Claire wouldn't be so amazing if it wasn't for your love and support.
that little claire is one tough cookie, and you are one tough amazing mother! your family + extended family will always be here as a sound board and to help! xo
Claire is such a sweet little girl! She is lucky to have such amazing parents! I have been really impressed with how you have handled your struggles. I love your little family. I wish we could be closer so we could see you more! Love ya!
What a sweet post. You are an amazing mom and Claire is an amazing little girl! The primary program last week was so sweet but the two moments that touched me the most was watching Claire, and then watching you and Emma. Love that little girl of yours!
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