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...
Saturday, September 16, 2017
Friday, September 15, 2017
Max knows her scent :-)
When we first brought Sophia home, being unsure how long she was going to live, I wanted so badly for us to have a lot of ways to remember her :-) I wrote a Blog about assigning her a scent (burt's bee's) so that we could smell her even when she's gone :-) I haven't thought much about that but today Max casually said something that made me so happy because it's working! I was giving her a bath and he said "Mom I can smell Sophie's smell"!
Thursday, September 14, 2017
Dragonflies
I went through a dragonfly phase when I was a teenager :-) Dragonfly necklaces and earrings and figurines and prints. I am happy to announce a renewal of that phase ;-) Dragonflies are the symbol of Sophia's disease. It was chosen because on MRI PCH looks like a dragonfly. I love dragonflies again. They remind me of my special daughter and all children like her :-)
My little dragonfly...
My little dragonfly...
Tuesday, September 12, 2017
Lately I want to know why
I wrote in a blog post early on about my knowing God has a reason for everything. I said that I was content with knowing that some day, in the next life, we will be blessed beyond the depths of this trial. And that is still true. I trust Heavenly Father. I'm content waiting for the blessings. But I have been hoping lately to find out why. Why did this have to happen. My husband, knowing I'm hoping for answers, gave me a little advice in the form of a scripture...
"And if your eye be single to my glory, your whole bodies shall be filled with light, and there shall be no darkness in you; and that body which is filled with light comprehendeth all things." D&C 88:67
I think I will ponder that for a while. In fact...I think I will take down all my other quotes and just focus on those instructions for a while.
Miss Sophia in Grandma Hayes' arms :-)
"And if your eye be single to my glory, your whole bodies shall be filled with light, and there shall be no darkness in you; and that body which is filled with light comprehendeth all things." D&C 88:67
I think I will ponder that for a while. In fact...I think I will take down all my other quotes and just focus on those instructions for a while.
Miss Sophia in Grandma Hayes' arms :-)
Monday, September 11, 2017
The Lord Will Prepare You
When Sophia was in the hospital at times the veil was thin. I could feel the other side and I resisted. I didn't want their comfort because I thought it meant they were taking her. It was automatic.... maybe if I pushed them away....maybe she wouldn't die.
Well she didn't die that day, obviously NOT because of any impressions I pushed away, but because it wasn't her time. And I remembered something that my Aunt taught me when she was on hospice:
The Lord will provide you with opportunities to prepare for the trials that you will face. Avoiding those opportunities, does not mean you can avoid the trials. You will only end up unprepared.
ALMOST losing Sophia could have been an opportunity to prepare, IF I would have allowed it.
And that is my thought for the day ;-)
My girls ;-)
Sunday, September 10, 2017
Doing normal stuff!/Getting back to Church
Sophie has been feeling so good! It is so nice to be able to do normal stuff! :-) We went on a date on Friday, last night we went to my friend Brittnee's reception AND
took Max to the park, and today we went to church! Boy does it feel nice to get out! :-)
Congratulations Brittnee! You are a beautiful bride!
took Max to the park, and today we went to church! Boy does it feel nice to get out! :-)
Congratulations Brittnee! You are a beautiful bride!
Today we went to church :-) With all of Sophia's troubles lately it's been a while since she's been healthy enough to get there, so Jason and the boys have been taking the kids. It felt really nice :-) Even though, when you have little ones you may only catch a fraction of what is said, and I do sometimes miss the days when I could vigorously take notes beginning to end ;-) Today was regional conference. I was able to catch a few sentiments in my journal, and it felt good to soak in the Holy Ghost :-) There's something about being there that sets the tone for the whole week :-)
While wrangling with Max in the hall I caught a brother who I recognized because of a talk he gave in our Ward. He had lost his teenage son and he spoke about it. I told him that I remembered his talk and that I was grateful for it. I pointed out Jason holding our sleeping Sophie...and briefly told him about her ;-) We shared a few understandings of facing losing a child.
Our exchange was short but I was glad to see him there at church. I was glad because he lost a child...but he was still in the right place at the right time. And I imagine that sometime after his son died, whether it was the first Sunday after, or a while longer, he had to make the choice to get to church. Today he was in the right place at the right time and I want to be like that. I've always believed I will be blessed if I choose to be in the right place at the right time. It is my hope after Sophie's passing, I will find the courage to always be in the right place at the right time :-)
Friday, September 8, 2017
Daddy's home!
Jason had to go out of town for work this week and Sophia missed him!
Date Night! First one since Sophie was born!
Papa Ken babysitting ;-)
And Max had a good time with with Gpa Chad ;-)
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