Intro and Hello

absentmindedwife

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.

houstongirl77

Hugs to you. We all feel that same pain. So very sorry for your loss.

mamalucy15

I'm so sorry for your loss. Praying for your strength.

msunshine123

I am so very sorry for the loss of your beautiful son Isaac. Thinking of you and your family and sending so many hugs your way. Loosing a child is so very painful and unfortunately something we all know only too well. I hope you find this board as comforting and helpful as I have.

MamaBish

I am so, so very sorry for the loss of little Isaac. It's so heartbreaking. Hugs to you.

Teenie16

I am so sorry for the loss of your sweet Isaac. My heart goes out to you and your family for everything you are going through. Sending big hugs your way.  

andreachristine81

I am so sorry for your loss and sending thoughts and prayers to your sweet family

Mel&John2013

***siggy warning

I'm so very sorry for your loss. Isaac was such a beautiful baby.

My situation was different from yours, but I lost my son after a long hospital stay as well. He also came home from the hospital healthy, and we found out about his health troubles later. Please reach out if you ever want to talk. And please lean on the ladies here. You are going through something so unbelievably difficult, but we all understand and are here for you.

tenna1sa

Such a beautiful face! What a lovely picture, thank you for sharing it. To me from that picture it looks like Issac, despite his illness, was joyous and full of life. He was very lucky to have you to fill his short life with such happy memories and experiences. Hugs and love to you and your family!

jkcaviness

I'm so very sorry to hear about your loss! I know now that words very rarely take away any of the grief or sorrow that we feel in our hearts, but I do want you to know that I am sorry that you lost your little boy! And hope that maybe you find comfort from the ladies on this board. After I lost my daughter I felt like I was totally alone. The only one who had ever felt something so horrible as to lose their child. But more and more i have found others who have gone through losing a child and continued to live each day so that has helped me continue each day! I hope that this board will be a help to you too. You and your family will be in my thoughts and prayers!

houstongirl77

So sorry for your loss dear. I lost my son at 22 weeks along and it has been a very hard and rough 4 months. This board has helped me so much. I can interact with other mommies who feel the same pain that I do. Hugs to you and it'll get easier to deal with over time but u never fully over the loss of your child