Late Term and Child Loss
absentmindedwife
member
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Intro and Hello
absentmindedwife
member
I have known for a long time that I would eventually be part of this message board. It certainly doesn't make it any easy coming over here... but you all know how that goes. My son Isaac was born on May 26th 2014, hearty and healthy, 2 days after his due date. I noticed around the 4 month age mark that he was having some difficulty meeting physical milestones like rolling over and lifting his head. After pediatrician --> neurologist --> diagnosis (I will spare you the long story, the agonizing waiting, the uncertainty), our beautiful boy was diagnosed with SMA type 1, a terminal genetic condition with no treatment or cure. How could this even be happening? I had never even heard of this before! We were crushed to say the very least. Isaac endured much in his 14 months, I am not sure how familiar everyone is with SMA, but the disease progresses just like ALS, the body weakens over time-- with Isaac losing his ability to swallow, cough, move, and eventually breathe. His suffering ended on July 31st, 2015.
I am so very grateful for the 14 months we had with our son. Much of that time was spent in the hospital, but we cherished every second of it. After Isaac was diagnosed we did everything we could with him, making as many memories as possible. I hope I can lean on the wonderful ladies here for support, as I am so in need of it. We all have to be so strong, even when we have no strength left. We have to keep going even when our lives feel like they have stopped when our child's did. I may not know any of you personally, but know that I feel your grief and understand your pain. We love our children forever, no matter where they are.
Re: Intro and Hello