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A Daddy's View - "the short straw"

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  • Scott Fontana
    Nearly 4 years ago, I was blessed with a wonderful gift. My wife and I had tried for some time to conceive and after several miscarriages, we finally did. We
    Message 1 of 1 , Apr 5 6:00 PM
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      Nearly 4 years ago, I was blessed with a wonderful gift. My wife and I had tried for some time to conceive and after several miscarriages, we finally did. We excitedly planned for the baby, painting the nursery, picking out a crib, poring over baby name books.  Six weeks before our baby was due, my wifes water broke, boy was there a lot. After 26 hours in labor our son, Mason was born via c-section. He was floppy and not breathing. He was immediately intubated and flown from our local hospital to another three hours away. We spent 5 months in this hospital and then transferred to another for 3 more. We went thru many tests, had a myriad of diagnoses, when we finally came home  Mason carried the diagnosis of Weaver Syndrome. It was not until researching on our own and coming across pictures of Jacob, reading about MTM were we able to have our son diagnosed. We had the blood test done when he was 2 1/2, it was positive for MTM. The more you read about this diagnosis,  you become both scared and inspired. One thing Mason has taught me about  is the strength of the human spirit. He goes through pokings and proddings, struggles that I doubt I myself could endure. Even though I know my time on earth with Mason may be short I am forever grateful that he picked me to be his Daddy.
      I will not lie to you, this diagnosis does bring tremendous stress. Many medical appointments and decisions in this area. To trach or not to trach was a big one for us. We have had the privilege of nursing care in our home for most days and nights since Mason came home. It is a nice help, but there is always another person in your house - no more running around in my underwear, another person to be offended by my belching and farting (heh heh heh) and intimacy - what's that. In all seriousness though, I have found although the diagnosis of Myotubular Myopathy may be heart breaking and forever life changing, it is really not so bad, how can it be both.. I have a wonderful son and I am so glad to be his Daddy.  Nobody can walk it for you, and it is a tough road, I just wanted you to hear from another Dad. This board is an excellent source of support I am glad I found it.
       
      Scott Fontana
      Mason's Daddy


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