When I was 5 months pregnant I wrote in my journal "Today we found out we are having a girl. It is exactly what I wanted. I feel so blessed. I could not want for more. I have everything I want in life. How did I get so lucky? I still can't believe it".
When I was 7 or 8 months pregnant Jason gave a talk in sacrament meeting. At the end he said his life was perfect. He qualified that it hadn't always been that way, but that right now, it was perfect.
On February 28th I went into labor at a friends house. We chatted for a couple hours and at 5 o'clock I drove myself to the hospital to meet Jason. I was at a 6 and we had our baby naturally 2 hours later. I did it! I officially had everything I ever wanted.
She was perfect. 8lbs 14ozs. Red hair. We stayed the night in the birth suite with a lovely view of the temple. The older boys came and we watched TV and I ordered food. Then my husband and I slept with our baby girl in-between us. It was one of the best nights of my life. Our family felt complete and I couldn't wait to get home. I felt SO privileged.
And then it was like a scene from a medical drama playing out in real life. OUR life. They got us our own room and two doctors sat us down. They told us our perfect daughter has ponto-cerebellar hypoplasia. We knew exactly what it meant. It means she will likely die in infancy. My poor husband lost his first daughter at 9 months old.
I felt as if every trauma I have ever experienced was hitting me all at once. This wasn't supposed to happen. We talked to professionals. This WASN'T supposed to happen!
I began writing blog entries in my phone. I haven't posted in 4 1/2 years but I felt the need to start again. Recording my feelings seems to be helping me towards acceptance. For the first time in years I re-read my last entry and the general conference talk I had linked. Whoa. I had related to parts of that talk before. But now I am hearing it entirely differently. And realizing the ENTIRE talk is about losing children in the traditional sense. How did I not notice that before? How is this the last thing I posted? Is this a coincidence or some sort of sign that this was meant to happen?
http://www.lds.org/general-conference/2012/10/because-i-live-ye-shall-live-also?lang=eng&media=audio
Day 1 after my daughters terminal diagnosis: In the last 24 hours I find myself getting to know my husband in ways that I never expected. I've asked him a lot about losing his daughter over the years. I'm not sure I ever wanted to COMPLETELY understand. Not like this.
Nonetheless Sophia is teaching me about her father. I am learning that some of the best parts of my husband are there because of losing his daughter. Jason is compassionate and understanding. He connects with people's pain on a real and deep level. Already in 24 hours I'm starting to notice that I judge people differently and empathize more.
Day 21: Congratulations. Sometimes people say congratulations but then seem to feel immediately awkward for allowing the sentiment out. But one person said it intentionally and it felt good. A member of my ward texted me "CONGRATULATIONS. The Lord knows he could trust you with this one :-)" I believe she is right. And I AM proud :-)
It has taken almost a month for me to SOMETIMES feel like ONE DAY I MIGHT believe my journal entry from last October again. This was so incredibly unlikely. So maybe one way to look at it is, if the odds were astronomical, then maybe this is exactly what was supposed to happen. I don't know if that idea helps me today, but maybe it will in the future. And maybe one day I'll believe, again, that I have it all.
