Sophia do you want to watch dino trucks
Sophia can get her ball!
Look at all her progress guys ;-) To be able to reach for, grasp, and pull her favorite toy to her face especially! She amazes us every 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...
Monday, November 26, 2018
Saturday, November 24, 2018
Catch Up
Here's some of the stuff we've been up to besides Halloween and Thanksgiving...
Sarah won 2nd place in a district art contest.
The look on her face when she won!
Me and my Dad when I was little ;-)
Went back to the pioneer museum with Jason's parents, who came out for a few lovely days of visiting :-) I'm truly so blessed to have such amazingly kind in-laws ;-)
The sheep parade with friends and family :-) It's the coolest thing. In one parade they run the sheep off the mountain and down main street in cedar city.
The pumpkin patch
Carving pumpkins from the patch
Crazy Hair Day
Nightly walk (my husband's fave thing is stopping to get his picture taken as you can tell ;-)
Spent some time at our Apple Valley house "The Dragonfly"
Jason and the kids made me a birthday cake. That's my husband loving getting his picture taken again ;-)
"Now guys, don't blow out the candles, this is Mom's cake" ;-)
Sarah and Jason painting for the contest :-)
Michael's Band Concert :-)
Cutie Sophie
Went back to the pioneer museum with Jason's parents, who came out for a few lovely days of visiting :-) I'm truly so blessed to have such amazingly kind in-laws ;-)
Besties from Apple Valley come visit :-)
Spent some time at our Apple Valley house "The Dragonfly"
Jason and the kids made me a birthday cake. That's my husband loving getting his picture taken again ;-)
And that brings us current ;-)
Friday, November 23, 2018
A Modified Thanksgiving for Two
My Dad and my sisters family were coming for Thanksgiving. I have hosted Thanksgiving twice in my life so far. The turkey was better the second time than the first ;-) This third time I was confident enough that I wasn't even going to have to use a recipe! A scoop of this, and a pinch or a dash of that, which I never imagined I'd be able to do! I've learned from past years to wait until the day before to buy the turkey, so I don't have to freeze it. Because they are a pain in the you know what to thaw!
So Wednesday I took Michael and Sarah along with the "littles" to the store and bought EVERYTHING we were going to need. After unpacking the food we watched The Blind Side, our first traditional Thanksgiving movie. We watched it a day early since it's not my year with M&S. Afterward we were drafting a list of the pies we wanted to make. It was ambitious, eight pies, and we were going to give five of them away. It was my way of having a little Thanksgiving spirit with the kids before they went to their Dad's.
We were just about to get started when Sophia threw up. I suctioned her and she threw up again. I suctioned her again and lay her on an absorbent blanket next to the kitchen just in case. Thinking, more like wishing, we could multi-task. But ...... it soon became very apparent that we weren't going to be making pies :-(
More retching and more vomiting. Then the seizures began. It was difficult for her to breathe and she started holding her breath. Instead of making memory's, M&S went out in the neighborhood to play. The hospice nurse came by and after checking Sophie thoroughly, and holding her for a while, she took Max home to play with her son.
I started all Sophie's usual "sick medications" and wrapped her up. When she's healthy she takes 8 medications several times a day. When she's sick she takes 13 :-( Michael and Sarah came home at dusk and we watched The Pursuit of Happyness while I rocked Sophie. Jason got Max on his way home from work and waited on me hand and foot as I was stuck in the chair. I postponed Thanksgiving with my very understanding family, put the turkey in the freezer, and prepared to hunker down.
Her night nurse came at 10 and I was relieved. Thank goodness for her night nurse! I remember well how hard it was doing this on no sleep. I remember how guilty I felt when Sophie was in Primary Children's Hospital ..... and I was relieved that she was in the best care ..... so that I could get some sleep. I never want to go w/o nurses again. Nurse Ali took great care of Sophia all night and I woke up in the morning rested and ready for a difficult day in the least.
Then a little thanksgiving miracle in the morning :-) She was resting when Ali left and she slept in for just long enough for us to throw a little thanksgiving dinner for two in the crockpot ;-) The nicest butcher at Lin's cut me a single pound of turkey, and we had boxed stuffing. We offered Max some of course, but he wouldn't touch anything thanksgiving related ;-)
I even had time to make one single pumpkin pie.
When she woke up the regular complications began. But then our second miracle happened when at dinnertime she lay quiet on a blanket just long enough for us to eat.
In the evening we watched Rudy, our last Thanksgiving traditional movie.
Even with all these complications I feel content and grateful today. I am grateful for a very comfy rocking chair, and for good movies so that even when she is sick, we can have family traditions. I am grateful for my children and a beautiful home in a beautiful neighborhood. I am grateful for a very kind husband who does EVERYTHING for his wife and family and hardly ever takes a minute for himself.
I am grateful that our dear Sophia is still alive, and that she smiles every day, even when she is sick.
But I am most grateful for the gospel of Jesus Christ. I am grateful that He lived, and that because of HIM we can ask to be forgiven. So that we may hope to live with our perfect angel Sophia, in Heaven forever. Happy Thanksgiving everyone.
So Wednesday I took Michael and Sarah along with the "littles" to the store and bought EVERYTHING we were going to need. After unpacking the food we watched The Blind Side, our first traditional Thanksgiving movie. We watched it a day early since it's not my year with M&S. Afterward we were drafting a list of the pies we wanted to make. It was ambitious, eight pies, and we were going to give five of them away. It was my way of having a little Thanksgiving spirit with the kids before they went to their Dad's.
We were just about to get started when Sophia threw up. I suctioned her and she threw up again. I suctioned her again and lay her on an absorbent blanket next to the kitchen just in case. Thinking, more like wishing, we could multi-task. But ...... it soon became very apparent that we weren't going to be making pies :-(
More retching and more vomiting. Then the seizures began. It was difficult for her to breathe and she started holding her breath. Instead of making memory's, M&S went out in the neighborhood to play. The hospice nurse came by and after checking Sophie thoroughly, and holding her for a while, she took Max home to play with her son.
I started all Sophie's usual "sick medications" and wrapped her up. When she's healthy she takes 8 medications several times a day. When she's sick she takes 13 :-( Michael and Sarah came home at dusk and we watched The Pursuit of Happyness while I rocked Sophie. Jason got Max on his way home from work and waited on me hand and foot as I was stuck in the chair. I postponed Thanksgiving with my very understanding family, put the turkey in the freezer, and prepared to hunker down.
Her night nurse came at 10 and I was relieved. Thank goodness for her night nurse! I remember well how hard it was doing this on no sleep. I remember how guilty I felt when Sophie was in Primary Children's Hospital ..... and I was relieved that she was in the best care ..... so that I could get some sleep. I never want to go w/o nurses again. Nurse Ali took great care of Sophia all night and I woke up in the morning rested and ready for a difficult day in the least.
Then a little thanksgiving miracle in the morning :-) She was resting when Ali left and she slept in for just long enough for us to throw a little thanksgiving dinner for two in the crockpot ;-) The nicest butcher at Lin's cut me a single pound of turkey, and we had boxed stuffing. We offered Max some of course, but he wouldn't touch anything thanksgiving related ;-)
Even with all these complications I feel content and grateful today. I am grateful for a very comfy rocking chair, and for good movies so that even when she is sick, we can have family traditions. I am grateful for my children and a beautiful home in a beautiful neighborhood. I am grateful for a very kind husband who does EVERYTHING for his wife and family and hardly ever takes a minute for himself.
I am grateful that our dear Sophia is still alive, and that she smiles every day, even when she is sick.
But I am most grateful for the gospel of Jesus Christ. I am grateful that He lived, and that because of HIM we can ask to be forgiven. So that we may hope to live with our perfect angel Sophia, in Heaven forever. Happy Thanksgiving everyone.
Tuesday, November 13, 2018
The Halloween Wheelchair
This Halloween kicked off the holiday season with compassion.
I don't know if it's possible to have writers block, when all a person does is type out updates every week or two, but I've had it ;-) I know the story I want to tell, but I've told one's like it before, and don't really have a new angle :-) So I'll just tell you I guess.
Halloween day was an emotional rollercoaster!...
Thankfully, THIS is our only baby ;-)
I was a dragonfly, which I think might be my yearly costume to honor Sophie ;-) I was getting super excited to take "the littles" (Max and Sophie) around our neighborhood. Plus I like passing out the candy too .... it always makes me feel so grown up ;-)
Then came the expected knock at the door. It wasn't my year for Halloween and I was happy knowing it was Curtis and Mari bringing over the kids for trick or treating. I hadn't had a chance to see Michael or Sarah's costumes yet.
When I opened the door I saw something strange. A gift so compassionate that my brain would not understand. There was Curtis and Mari ... and all 6 of the children in their blended family. In the middle of them ... a tiny wheelchair.
I've never seen one so small. I just kept saying "Guys! What IS this?!". They wouldn't answer me, just smiled and kept pushing it toward the door. My heart knew, but my brain wouldn't believe it. Is this to borrow for trick or treating ..... or to .....keep?
When my mind finally accepted that it was a gift, I began to cry and hug them ;-) I called Jason who was pulling in. We were so grateful, we just didn't even know what to say.
Michael, Sarah, and their dad had got a used wheelchair and worked to make it right for Sophie.
Jason and I talked for days about what a touching gift it was. It was a wonderful way to kick off the holiday season (and a great ending to a roller-coaster of a day for me ;-) Sophia is so lucky to be loved by so many people. And we are so lucky to receive acts of pure kindness from the people around us. And to feel the love of Christ, given by others, in our lives.
So, just another reminder from me, that relationships can change if you let them. The relationship between Michael and Sarah's four parents, was the first one that Sophia healed, and continues to affect. But it wasn't, and won't be the last :-) Love that little angel. We hope she stays for many more years. To teach us all through her love ;-)
The rest of Halloween night went as we have come to expect. It was too cold for Sophie to do more than half a block so Jason and Grandpa Chad took her home. Max had an absolute blast. We knocked on 40 doors in our neighborhood, as we had previously counted on our walks, and as I had promised him ;-)
It got dark while we were out and we had forgot to turn on our porch light. So Jason missed out on probably half of the trick or treaters, sorry! 😝 and we ended with Max tripping and hitting his head on the road!
Those who know us well, would joke that that sounds like a typical night for us! Happy Belated Halloween everyone! We hope yours was as good as ours ;-)
I don't know if it's possible to have writers block, when all a person does is type out updates every week or two, but I've had it ;-) I know the story I want to tell, but I've told one's like it before, and don't really have a new angle :-) So I'll just tell you I guess.
Halloween day was an emotional rollercoaster!...
Bittersweet
It started with mixed emotions, volunteering at Max's preschool party. SO much fun to have another one in preschool and spend time with him there. SO sad that it's the last one. And trying SO hard to drink every moment in.
Fear
I thought I was pregnant and had to take a test to calm myself down. I've never been so afraid to look at something in my whole life. And I was QUITE relieved. Even though I'm sad that Max is our last "typical" child. There's NO way that we could, or should, ever have any more.Thankfully, THIS is our only baby ;-)
Heartbreak
Max, Sophie and I, got all dressed up in our costumes and headed over to the elementary school to cheer Sarah at the Halloween parade. But I had forgot about early out Wednesday's (which frankly will never make sense to me) and pulled into an empty parking lot :-( We were all dressed up with nowhere to go :-( I've NEVER missed a Halloween parade. I cried that afternoon (probably didn't help that I hadn't had any night nurse all week ;-) But still, I was SO sad. Michael is in middle school now, and didn't have a parade. Sarah's only got one left after this. They're growing so fast and I can't slow it down.Gratefulness
As I got ready for the evening, my feelings of gratefulness began to heal my sad heart from missing the parade. I was thinking about how the holiday's last year were so special, because we didn't think Sophia would be here for another season. We're so glad that she is still here. That her light gets to shine on our holiday season again. My feelings of gratefulness for our miracle, began to melt away my earlier sorrow and anxiety.Shock... Awe... and Overwhelmed with Kindness
Next I was gearing up for Halloween night. Max was the perfect Charlie Brown and Sophia the perfect Snoopy.
I was a dragonfly, which I think might be my yearly costume to honor Sophie ;-) I was getting super excited to take "the littles" (Max and Sophie) around our neighborhood. Plus I like passing out the candy too .... it always makes me feel so grown up ;-)
Then came the expected knock at the door. It wasn't my year for Halloween and I was happy knowing it was Curtis and Mari bringing over the kids for trick or treating. I hadn't had a chance to see Michael or Sarah's costumes yet.
When I opened the door I saw something strange. A gift so compassionate that my brain would not understand. There was Curtis and Mari ... and all 6 of the children in their blended family. In the middle of them ... a tiny wheelchair.
I've never seen one so small. I just kept saying "Guys! What IS this?!". They wouldn't answer me, just smiled and kept pushing it toward the door. My heart knew, but my brain wouldn't believe it. Is this to borrow for trick or treating ..... or to .....keep?
When my mind finally accepted that it was a gift, I began to cry and hug them ;-) I called Jason who was pulling in. We were so grateful, we just didn't even know what to say.
Michael, Sarah, and their dad had got a used wheelchair and worked to make it right for Sophie.
Jason and I talked for days about what a touching gift it was. It was a wonderful way to kick off the holiday season (and a great ending to a roller-coaster of a day for me ;-) Sophia is so lucky to be loved by so many people. And we are so lucky to receive acts of pure kindness from the people around us. And to feel the love of Christ, given by others, in our lives.
So, just another reminder from me, that relationships can change if you let them. The relationship between Michael and Sarah's four parents, was the first one that Sophia healed, and continues to affect. But it wasn't, and won't be the last :-) Love that little angel. We hope she stays for many more years. To teach us all through her love ;-)
The rest of Halloween night went as we have come to expect. It was too cold for Sophie to do more than half a block so Jason and Grandpa Chad took her home. Max had an absolute blast. We knocked on 40 doors in our neighborhood, as we had previously counted on our walks, and as I had promised him ;-)
It got dark while we were out and we had forgot to turn on our porch light. So Jason missed out on probably half of the trick or treaters, sorry! 😝 and we ended with Max tripping and hitting his head on the road!
Those who know us well, would joke that that sounds like a typical night for us! Happy Belated Halloween everyone! We hope yours was as good as ours ;-)
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