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...
Wednesday, February 21, 2018
Magic last night
Sophia was like this for what must have been an hour last night. We just sat her on the bed and talked to her. And she smiled and squealed and giggled (in her own way). She's just magical ❤
Monday, February 19, 2018
Fingers crossed
It's been kind of hard since Friday bc Jason has been sick and can't hold Sophie. It's hard for him and they miss each other. He talks to her and tells her he loves her, and she smiles. Tonight I'm going to say an extra prayer that Jason's symptoms will go away soon so he can hold his daughter. We are doing everything we can and taking every precaution we can think of to keep Sophia safe from sickness. If she does get sick we will know we did everything we could to prevent it. Fingers crossed that she doesn't and that things can return to normal soon.
Idk if I've shown these. Hospice did them a while ago. Jason's fingernail is a little messed up, I hope we can file that. But I think they turned out pretty great.
Max getting attention from Michael ;-)
Idk if I've shown these. Hospice did them a while ago. Jason's fingernail is a little messed up, I hope we can file that. But I think they turned out pretty great.
Saturday, February 17, 2018
Wednesday, February 14, 2018
Happy Valentines Day!
Hey! What a wonderful Valentine's day! Got to go to dinner AND a movie! Felt so good ;-) Sophie got lots of extra love from her wonderful nurses ;-) She was asleep when we got home so I miss her a bit... kinda can't wait until morning now ;-) Happy Valentine's day to everyone we love!
Monday, February 12, 2018
Shopping
How do you grocery shop with a big baby who doesn't fit in her infantseat anymore?
Step 1. Use a harness to buckle her laying down!
Step 1. Use a harness to buckle her laying down!
(just in case anyone's analyzing that harness, there's another seatbelt going through the big straps underneath her, the airbag is off, and the harness has been safety crash tested ;-)
Step 2. Ask your 4 year old to handle the cart so you can push her stroller!
(Sorry it's blurry he wouldn't hold still!)
Step 3. Go to the store every day bc you can only fit so much in a baby cart!
Sunday, February 11, 2018
As We Approach a Year
As we approach Sophia's birthday I'm realizing I feel different about all this than I did almost a year ago. It wasn't easy but I've gotten used to this. Just last night I was telling my big sister Holly that I almost can't imagine my life any different. She said "Really?! I can!" But it's true, I almost can't imagine it. What was life before I was a special needs mom? I have to strain to remember. I'm glad too bc mourning the life I had, when I was expecting a healthy baby, was a very difficult process. And it's a relief to be mostly over that.
Dad and Sophie holding hands...
Dad and Sophie holding hands...
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