This gift may seem different to most. But to a parent who's child has just been diagnosed with scoliosis it means a lot.
Every day my daughter works hard on one of the many challenges/issues she tries to overcome. If it is not my daughter, it is us, her parents working with her...to help her. If it is not us, then it is her one to one, or her therapists, or her grandparents working with her.
We are very blessed with the fact that the challenges she faces are not as severe as many of her Rett "sisters". But to us...to her...her challenges are severe to her. Her challenges limit her from being the little girl she was meant to be.
While we are constantly helping her get bathed, dressed, assist her with meals (she has learned over time to hold her own cup and pick the fork up to put the bite in her mouth)...basically helping her with all her daily activities...we are also helping her in other ways. And let's not forget to mention trying to keep her "calm" when behaviors rear their ugly head.
We are constantly helping her keep the functional hand use she has by keeping her hands busy...playing Connect 4, ball, anything which requires her hands to not "wring". We are walking all over the house with her playing games, taking walks outside, or swinging on the swings to keep her mobile...to keep her legs moving. We are massaging her hands nightly with special ointment to help heal the calluses she has caused due to her constant hand wringing. We make her say the words she knows to preserve her speech and have her repeat new approximations and words over and over again to have new words added to her list of what she can say.
Now we have one more thing to add to her daily list...her back. We must massage her daily to help release the tension she holds so tight in her back, neck and shoulders. We must "try" to keep her sitting upright as much as we can, especially at the dinner table. She sits on a cushion called a "wedge", to help her with her core, which helps her posture. And now at therapy different exercises need to be addressed to help with stretching her back and helping her to loosen up her shoulders....lots of reaching overhead activities.
Today at therapy, she started adding new activities to help her back. Sometimes when a new activity is introduced she is hesitant as she knows you are going to not be working just one area of her body, but two or three at the same time. It is like when we exercise and do a reverse lunge with a bicep curl...we are working legs, glutes, core and arms. Today she was standing on a wedge (to work her Achilles Tendon she needs stretched due to her prior surgery), while she had to reach down to pick up a bean bag (works on balance, trunk support and teaching her to bend her knees when she "bends" down), then she had to take the bean bag reach overhead and throw it into a barrel ( worked on stretching her back and shoulders and crossing her midline).
Think how hard this would be for a child like my daughter who is constantly wringing her hands. Think about all the steps she had to do...herself...and all the challenges she had to overcome to make this happen, especially given her overall muscle tightness. Just the challenge of apraxia alone is huge to overcome. But guess what she not only did it, but did it perfectly! I was so proud of how hard she was working. And the smile on her face showed she was equally as proud!
Then tonight at dinner, I look over at her and she is sitting as straight as can be on her wedge looking at her "puppy". Her posture was beautiful! Maybe a wedge is what I need to work on my core too!
As I mentioned in a post not too long ago 2012 was a pretty good year for her...for us. It looks like 2013 will have some extra challenges for us, but it is nothing we can't handle. It is just one more mountain to climb...
Here are some quotes for today...
If God brings you to it, he will bring you through it- Unknown
God has a reason for allowing things to happen. We may never understand His wisdom, but we simply have to trust His will- Psalm 37:5
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