Here is an amazing video of our Sophia Jane-Marie grinning and squealing with delight! We feel SO blessed. We never expected that she would develop this far. This is AMAZING.
www.youtube.com/watch?v=UbxRNBvIJr0&feature=youtu.be
not sure why it's not showing up as a link. You can copy paste or you-tube "Sophia Jane-Marie squealing with delight"
This is a blog about the joys of raising Sophia. It is intended to be REAL, inspiring, and shed light on the experience of having a terminal child. I hope that our experience will help people in one way or another. I could have never imagined having a terminal baby with special needs. The news was devastating. But there is joy in this journey. And life lessons to be learned. God knows us, individually, and he blesses each of of our lives daily. THIS, IS SOPHIA'S STORY...
Monday, July 10, 2017
Saturday, July 8, 2017
8 years ago today....
8 years ago today my husband, his wife at the time and their children, lost their beautiful Mariahnna. I'm so sad that they had to lose her. She was a beautiful little girl and I love to see pictures of her and hear stories about her. I don't yet know what it's like to lose a child but I do know now what it's like to face losing a child. I'm so sorry for anyone who's ever had to go through this, especially my dear husband.
Friday, July 7, 2017
Thursday, July 6, 2017
Bucketlist Item 3-Go Swimming!
Wednesday, July 5, 2017
Hayes Reunion!
We made it! By the prayers of my MIL I'm certain! Sophia slept all the way to the exit! Which is an incredible miracle. You see, she Hates her carseat because she can't arch her back...and if she gets too upset about that...then she has trouble breathing. So coming to the family reunion was a decision to make...and I worried there may be a point on the drive, if it came between breathing and being in her carseat, that the safer thing would be to take her out of the seat. Which I really didn't want to do. But we can't just stay home. We want to have a life with her. And we want her to experience life. And be around family. And see new things and create memories. Because when she's gone that's all we'll have.
Something else I'm grateful for is all 8of us and our stuff fitting in one car!
Something else I'm grateful for is all 8of us and our stuff fitting in one car!
Tuesday, July 4, 2017
4th of July!
I was a little nervous about the day and her getting overstimulated, or sick, but we were brave and made some great memories today :-) And I'm so glad we did :-)
Monday, July 3, 2017
She's a ham
Sophia is a ham. A TOTAL Ham! I'll catch her grinning at me...waiting for me to notice her 😇 It reminds me of Michael as a baby. She really has a cute sense of humor 😝 Every day she smiles more and more. Every day she coos more and more, and here she's squealing with delight. Best ever.
Sophia today...hammin it up with Dad :-)
Sophia today...hammin it up with Dad :-)
Subscribe to:
Posts (Atom)