This post is one of those that is rattling around in my head. Parts of it are clear and parts of it make me feel awkward. Here we go anyway.
A couple days ago I was at Shriner's Hospital for Children with Ayden Jane for her scoliosis check. It was awesome. Her curve is measuring 8 degrees but the doc was very impressed with the progression of Ayden Jane's x-rays (honestly, he lost me in that conversation). He was very surprised by her tone and improvement in her core. He asked what we have been doing and Ayden Jane piped up that she works hard with Mrs. Jen to keep her body strong and straight. I told him she swims, rides horses and we have added running. He was very interested in the story of how things started after the winter she lost her tone and the right leg seeming to be the key. I think he and Jen would have a great conversation about it all.
What really surprised me was after we finished the orthopedic talk, he asked me, "What else are you doing because I have had many patients with Prader-Willi Syndrome over the years and she is different." It took me back a bit for a minute. Usually, I hear she is doing great and is on the mild end of the spectrum.... His simple statement and later expansion to include, "she is not just mild PWS, there is nothing about her that presents as PWS. She is different."
That phrase just keeps rolling around in my head. It still jolts me a little. I mean, I know Ayden Jane is doing fabulously right now but to me, she is just a kid who has worked hard but still fights PWS. It makes me thrilled to hear and at the same time breaks my heart for others. I mean, if she is different - then how do others shift from PWS to different. I mean if she is mild, then others can sort of slide down the spectrum and join her. What does it mean if she is different? Is there a track to jump? How exactly did we make the leap?
It was fabulous confirmation of all we have done over the years. Sometimes I wonder if the time and effort and financial sacrifice of staying home to sort all of this out over the years was worth it. I start to get on myself about how I should really have been able to find some sort of work to fit in with it all to ease the pressures. In the end, I know that God has His hand all over this. I pray for wisdom as I tweak things with AJ and as I attempt to help families who are a few years behind us on this path. I pray that God will use us as He sees fit and I am doing my best to trust Him to guide our next step.
She is different. It will echo with me for a while as I try to understand the full extent of that simple statement.
A couple days ago I was at Shriner's Hospital for Children with Ayden Jane for her scoliosis check. It was awesome. Her curve is measuring 8 degrees but the doc was very impressed with the progression of Ayden Jane's x-rays (honestly, he lost me in that conversation). He was very surprised by her tone and improvement in her core. He asked what we have been doing and Ayden Jane piped up that she works hard with Mrs. Jen to keep her body strong and straight. I told him she swims, rides horses and we have added running. He was very interested in the story of how things started after the winter she lost her tone and the right leg seeming to be the key. I think he and Jen would have a great conversation about it all.
What really surprised me was after we finished the orthopedic talk, he asked me, "What else are you doing because I have had many patients with Prader-Willi Syndrome over the years and she is different." It took me back a bit for a minute. Usually, I hear she is doing great and is on the mild end of the spectrum.... His simple statement and later expansion to include, "she is not just mild PWS, there is nothing about her that presents as PWS. She is different."
That phrase just keeps rolling around in my head. It still jolts me a little. I mean, I know Ayden Jane is doing fabulously right now but to me, she is just a kid who has worked hard but still fights PWS. It makes me thrilled to hear and at the same time breaks my heart for others. I mean, if she is different - then how do others shift from PWS to different. I mean if she is mild, then others can sort of slide down the spectrum and join her. What does it mean if she is different? Is there a track to jump? How exactly did we make the leap?
It was fabulous confirmation of all we have done over the years. Sometimes I wonder if the time and effort and financial sacrifice of staying home to sort all of this out over the years was worth it. I start to get on myself about how I should really have been able to find some sort of work to fit in with it all to ease the pressures. In the end, I know that God has His hand all over this. I pray for wisdom as I tweak things with AJ and as I attempt to help families who are a few years behind us on this path. I pray that God will use us as He sees fit and I am doing my best to trust Him to guide our next step.
She is different. It will echo with me for a while as I try to understand the full extent of that simple statement.
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