Well she's sick again. With (pardon my language) the same... damn... virus :-( Everything smells like vomit :-( She just keeps getting it. Again and again and again. Tonight she is struggling to breathe and we're doing everything we can for her at home. We really hope that we don't end up in the hospital again :-(
Ugh. Well all I can say is that life is full of trials. It's supposed to be this way. This stuff is supposed to happen. It's all part of God's plan. I know that. This is really really really hard. And it's all happening for a reason. I still love Heavenly Father. I'm not mad. I trust Him.
Been holding my sick baby all day.
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, December 20, 2017
Tuesday, December 19, 2017
This year was over way too fast
I think every good parent does truly want their children to grow up :-) But this year went by way too fast! :-) I've been looking forward to 2017 for a long time. It was the year that Mason would come home from his mission, we would have our last baby, and for a little while everybody would be under the same roof (again ;-)
Well tonight changes all that. Jonah has been set apart as a missionary for The Church of Jesus Christ of Latter Day Saints! Tomorrow morning Jason and Mason are driving Jonah to the missionary training center. There he will stay for 3 long months, learning mandarin, before going to Taiwan to teach people the good news. The news that Jesus is the Christ our Savior. That He died so that we may live and be with loved ones again.
Tomorrow morning Jonah goes on his mission and Mason is moving out as well. Suddenly, we are down two. It's happy, bc they are good boys doing good things. And it's sad. It's the end of an era.
Sophia has been doing fantastically well since Jonah's farewell on Sunday :-) I think she's doing it for him so he doesn't worry :-)
Christmas last night...
(Sarah and I fixed our tree for y'all that saw it before... haha)
Opening presents...
Sophia's present to everyone ;-) the boys are printed on 8 by 10 sheets of metal and the girls are printed on wood :-) (Mason took his home before I got a picture ;-)
Found this on the tree...
Sophia right now...
Monday, December 18, 2017
The Big Day
Well yesterday went off without a hitch! For our family it was the biggest day planned this month. Jonah gave a great farewell speech about loving everyone and not judging others trials :-) A hundred people came to the luncheon to support him :-) It was really wonderful being surrounded by so many people who care so much for Jonah! :-) We are all so proud and excited for him.
For Sophia it was a very stimulating day, and all things considered she did amazingly well! She was healthy and happy all day long (virtually no throwing up!). She was pretty dystonic for a few hours at the end of the long day, but that was to be expected.
There were so many people to see and talk to all day long I didn't even think to stop and take a picture! So I have nothing to show for it other than our memory of a great day :-)
This is the only picture I took all weekend :-) It's Max and his cousins playing with this cool fake snow stuff that Grandpa Chad brought over ;-)
For Sophia it was a very stimulating day, and all things considered she did amazingly well! She was healthy and happy all day long (virtually no throwing up!). She was pretty dystonic for a few hours at the end of the long day, but that was to be expected.
There were so many people to see and talk to all day long I didn't even think to stop and take a picture! So I have nothing to show for it other than our memory of a great day :-)
This is the only picture I took all weekend :-) It's Max and his cousins playing with this cool fake snow stuff that Grandpa Chad brought over ;-)
We had so much fun visiting with extended family. Tonight we change our pace and will be opening Christmas presents with Jonah! It will be a contrast but it will be nice to have a special evening with Jonah and just us :-) (Jason takes him to the MTC Wednesday)!
*shout out to my mom who just randomly brought me a casserole for a meal this week! We'll be having it tonight!
Saturday, December 16, 2017
Special Day Ahead!
Tomorrow Jonah gives his Farewell talk at our church before leaving on his mission on Wednesday :-) We have a ton of family coming into town today and we're very excited to see everyone! This weekend truly is a celebration for Jonah :-) We are so proud of him :-)
Yesterday was a hard day. Thursday night Sophia's brain wasn't communicating quite right with her heart. Her HR went real low for about two, really long minutes. We saw the doctor yesterday, and we are practicing more ambiguity (breath). Jason talked me through it and we put it in God's hands.
Anyways I really like weekends like this because for just a minute everything is so busy.... and there are so many people that love us all around, it can momentarily feel like there's nothing wrong :-)
" Mis-sion-ary (noun): Someone who leaves their FAMILY for a short time, so that others may be with their families for ETERNITY. "
These last few moments before Jonah leaves are so sweet :-)
Sophia all dressed up to see family today :-)
Yesterday was a hard day. Thursday night Sophia's brain wasn't communicating quite right with her heart. Her HR went real low for about two, really long minutes. We saw the doctor yesterday, and we are practicing more ambiguity (breath). Jason talked me through it and we put it in God's hands.
Anyways I really like weekends like this because for just a minute everything is so busy.... and there are so many people that love us all around, it can momentarily feel like there's nothing wrong :-)
" Mis-sion-ary (noun): Someone who leaves their FAMILY for a short time, so that others may be with their families for ETERNITY. "
These last few moments before Jonah leaves are so sweet :-)
Sophia all dressed up to see family today :-)
Thursday, December 14, 2017
Christmas Card/update on Sophia
Hey everyone sorry I haven't been writing every day! It has been especially hard since Sophia got sick. Even though she began to feel better she was still throwing up a lot until a couple days ago. We spent a lot of time "vacuuming" throw up out of her throat :-( It was like my post of the terrible horrible day, every day for a week :-( This time I did break down and wonder if I was strong enough. But I found out that I was :-) We are unsure if her vomiting dozens of times a day is her condition degenerating, or an intolerance to the very strong antibiotic she was on....but it has gone down a lot since she finished it so we are hoping for the latter!
Anyways the minute she was feeling better I had to buckle down and work on Jonah's slideshow for his FAREWELL THIS WEEKEND! OH MY GOSH!
Also, I have a very special announcement.......family please check your mailboxes for our Christmas Card this year!!! Now, let me tell you why this is special to ME :-) I used to love to send out Christmas cards, every single year :-) But in 2010 I found myself a single mom and I didn't feel like announcing it with a Christmas card :-( In 2011 I met and married a wonderful man, who is my soul mate ;-) But that same year we lost a couple boys that he was trying to adopt :-( It took years for our family to get over that hole and I never felt like sending a Christmas card. But this year, it finally feels right :-)
Life is hard. There are ups and downs. Sometimes it feels more down than up. Sophia is teaching me to celebrate the bright spots, using them to conserve energy for the hard times. And I am certainly practicing more than ever, leaning on our Savior, Jesus Christ. HE can and will heal our hearts if we turn to Him. Merry Christmas Everyone!!!
Quote for the day "Feed Your Faith and Your Fears Will Starve".
Anyways the minute she was feeling better I had to buckle down and work on Jonah's slideshow for his FAREWELL THIS WEEKEND! OH MY GOSH!
Also, I have a very special announcement.......family please check your mailboxes for our Christmas Card this year!!! Now, let me tell you why this is special to ME :-) I used to love to send out Christmas cards, every single year :-) But in 2010 I found myself a single mom and I didn't feel like announcing it with a Christmas card :-( In 2011 I met and married a wonderful man, who is my soul mate ;-) But that same year we lost a couple boys that he was trying to adopt :-( It took years for our family to get over that hole and I never felt like sending a Christmas card. But this year, it finally feels right :-)
Life is hard. There are ups and downs. Sometimes it feels more down than up. Sophia is teaching me to celebrate the bright spots, using them to conserve energy for the hard times. And I am certainly practicing more than ever, leaning on our Savior, Jesus Christ. HE can and will heal our hearts if we turn to Him. Merry Christmas Everyone!!!
Quote for the day "Feed Your Faith and Your Fears Will Starve".
Thursday, December 7, 2017
Tuesday, December 5, 2017
Tonight I want to talk about something that has been surprisingly hard. So here it is. Outside of my children there is absolutely nothing expected of me. I closed my daycare (I wasn't very busy out here... but still), I got released from my church calling, I quit the PTA. If the house is messy, nobody holds it against me. If there's no dinner prepared, Jason picks up the slack (he's turned into a really good cook by the way ;-). I'm rarely expected to be in a certain place at a certain time. When I am, half the time I have to cancel, and people are very understanding. And it's all as it should be I guess because of our situation. It's just...an unexpected challenge that comes with the territory of being a special needs parent. You lose yourself a little. Become a little.........invisible.
Sophia is not much better today. She's about the same. It's still a privelage taking care of her :-)
Sophia is not much better today. She's about the same. It's still a privelage taking care of her :-)
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