Saturday, March 16, 2019

She doubled her life expectancy!!!

     It's been a long time. Since the last time I wrote, Sophia had pneumonia again. We were able to keep her home. I attribute that, again, to her cough assist machine. Every hour when she is sick, I take her to her room and put this mask over her face. It forces air in her lungs, and then pulls it back out. It keeps everything in her lungs moving so that nothing settles. It must be a very expensive machine, because it was hard to get. Only people who are constantly getting pneumonia qualify for it. It has made a BIG difference for Sophia.
     She's been pretty healthy for several weeks now. Which is lucky because I've been having thyroid problems :-( When we first had her, I read that caretakers often end up with health problems of their own. Unfortunately that has been true for me. BUT ... I consider it a true blessing from the Lord that her and I have never been sick at the same time. I also don't consider it a coincidence that she is mostly sick when Michael and Sarah are at their Dad's. The Lord knows how important family time is to me. He has a hand in our trials. Jason is a great blessing to us too. He works so hard all day to provide and hardly gets a moment to himself at home. He's sweet and sometimes commends me for how much I do, but they are not just words. He knows how much I do, because when I'm sick, he does it for me. 
     Life is work. Thank heavens for our children because they are all extremely worth it. Every day we spend together, they make our lives so rich. I just love our children ❤️ 💖💓 Remember to count your blessings everyone. It is very important to keep perspective.
     Anyways those are my excuses for not writing but we also have had some very good times since I wrote last! Today I figure I will write about how lucky we are, that on the 28th of February, Sophia doubled her life expectancy!!!!! ❤️ And hopefully on my next post, I will update you with pictures of everything else we've been up to ;-)
     For Sophia's birthday this year, we had a small party at home. Just us. No extended family. I really loved it and here's why.
As you know we weren't supposed to have one birthday party for her, let alone two! Sophia has been SO strong and fought SO hard. She's proven time and time again that she doesn't want to go anywhere right now! She has woven herself into our lives in a way that ... just doesn't feel temporary anymore. I know that it is (and I'm glad that I did the work to accept that). But for NOW, we're just living life!
     SO, we just treated her birthday like we treat all the kids' birthdays! We put up a few decorations, made a cake out of a box, sung happy birthday and opened presents!
     We are so lucky to have her in our life. Her angelic light fills our home and makes it a very desirable place to be! She makes us grateful for everyday and she gives every member of our family a perspective about what's the most important in life. Loving other people, treating them with kindness, accepting those who are different in any way. She teaches us to value life and love others for who they are. No matter what.
     The week before Sophia's birthday we lost three children in our support group 😞 Our group has been growing, but that was still a lot in one week. One mother described this whole experience like being thrown onto roller coaster. One that you never wanted to be on ... but as soon as somebody lets you off ... all you want to do is get back on again.
    Her perspective reminds us to be grateful. And we really are. Last year I wanted to throw a big party for Sophia in the spring, but we ended up moving and had too much on our plate. I'm recommitting to trying again this spring. As long as our house in Apple valley has sold by then, so everyone pray for that ;-)

https://www.youtube.com/watch?v=0lOppgS1X8Y
Sophia Jane-Marie on Her Second Birthday!!!

https://www.youtube.com/watch?v=Ljik7OsW9M4&t=9s
Just in time for her second year with us, we discovered that being surprised makes her laugh the hardest! Ripping paper works too. And rolling dice, which makes family game night really fun ;-)