Sometimes I think about my life now compared to my much younger years. I used to think that no matter how old I get, I will always feel (mentally) like a 16 year old. I can honestly say, I feel older then I am. I caught up to my age and surpassed it by a couple years. My youthful innocence, or immaturity, that I always thought would have, has gone. That might sound sad, but I see life for what it is now. It sucks. There is pain and suffering everywhere I turn. I didn't want Jesus to come yet because there was all this 'joy' I wanted to experience here on earth. I feel more then ready to experience the pure joy that He has for us in heaven now.
I know this will sound ridiculous, but I have been thinking about Edward in school. (I should just stick with today, right!) He is going to look different and I know, first hand, just how mean kids/people can be! I don't have any 'syndrome' and people were ruthless to me. I burnt my hand when I was one and I remember in third grade, I overheard a boy in my class say to his friend that he didn't like me because of my hand. Then in high-school, the girls on my volleyball team hated me. After our team pictures one year, they thought it would be awesome to put lotion and shampoo all over me, tape me to the locker bench, and put me in the cold shower. I don't want to shelter my kids, but I would like to spare them from some pain. I have been thinking about some cosmetic stuff I could do for Edward. It would not be necessary but maybe he would thank me later. No matter how normal looking or nice he will be, people are still going to be mean. That is a fact of life. 'If it ain't broken don't fix it.' Right? Or no? Mom always told me I could get my hand fixed to look normal. But it has never really bothered me. And it is me. Maybe Edward will think the same about himself. Hummm.....
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| my hand |
Edward had another casting appointment. We scheduled his tendon release surgery for June 16. I need lots of prayers for this one. I am nervous because it will be the first time he goes under general anesthesia. Like I said before, FSS kids have a greater risk of reaction to anesthesia, malignant hyperthermia. Plus, that is the first day of my husband's licensure test, so he won't be there.
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| i could kiss his sweet face! |
Oh, Janessa! We'll say lots of prayers for you, and for Edward, and for Adam.
ReplyDeleteJust was directed to your blog by a friend from AMCSI. My daughter Robyn has Sheldon Hall Syndrome! It is great to hear about another family who knows *exactly* what we are going through! Robyn is now 1year old and is doing great. She went through a year of Ponseti casting and 3 tenotomies on each foot and graduated to her AOF's the week before her first birthday. At birth she had many of the same facial features you described with Edward. She had feeding issues too. She had severe complex club feet, knee and hip contractures, hand contractures and the beginnings of scoliosis in her lower back. She is also a super bright firecracker with the most amazing personality! We live just south of Washington DC and our primary AMC Dr is at Shriners Philadelphia, Dr Van Bosse. I'm looking forward to reading more about Edward's journey! It is so rare to find another family who is in the same place as us.
ReplyDeleteI can be found on Facebook in the Shriners Philly AMC Clinics. I am very active in teh AMCSI community too.
Prayers and quick healing vibes for Edward!
What, Adam can't be there. Janessa, who will? I will be praying. I like that you shared about your story.
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