Thanks for the reminder

The day after we had the ultrasound telling us Mya was in trouble Bernie went to work. There was no way for anyone to know what was happening but when he got there he found a bookmark on his chair. On the front it simply read:

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11

and on the back:

"Lord, help me to remember that nothing is going to happen today that you and I can't handle together."

I found that bookmark over the weekend while digging dusty books out from underneath our bed. I had forgotten that story, how we were both a little stunned at the coincidence when he brought it home, wondering who it came from, how much we wanted to hold on to our faith, but how final the news felt at the time. And then I started a group of months where I didn't really do much but stare at daytime TV so it made it about 30 pages into a book before it was set aside.

Mya is in sort of a funky space these last few weeks. We were in a really good place with our nights which translated into some great things for her days. We got a hold of a new apnea mask that, rigged with velcro and cords, fits her much better and allows her to sleep on her side, which she has always preferred. So we were sleeping and for the most part we think she was sleeping. But adding medication number 4 has completely wiped her out and with 4 giant lists of side effects it is hard to know for sure what exactly is going on and what exactly is to blame. She is also fighting congestion and it is hard to say how that plays. You wonder if you are making decisions on medications based on these external factors that mimic side effects or mask her seizures. It is frustrating to say the least. She slept for 22 hours on Sunday, something like 18 the day before. She fell asleep within 5 minutes of being placed in her stander 2 days in a row. That just can't be normal. And the hours she is awake she just looks out of it. And this brings up a host of other problems. Her apnea has been pretty bad during the day, even awake, and you have to pay special attention to how you position her head. So many times in these last few days I have returned to a room to see her positioned appropriately but with purple cheeks. Cut it out kid. We go through these periods where we wonder if all the tangled side effects will ever sort themselves out so she can be present and comfortable. We want so badly for her to have the chance to be herself but we just don't know how to make that happen. And so I found the bookmark. And I am reminded that this is out of our hands. There is a plan for this child's future.

And another funny coincidence. The quote wasn't cited and so I just Googled it. The 2nd result from Google is linked to the TTTS Foundation website. I couldn't make this stuff up.