Sophia Jane-Marie Hayes

This is Sophia. Our proud new addition. The last of our clan.

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.

In the morning I called in the nurse. Sophia was rooting but couldn't open her mouth wide enough to breastfeed. While we were talking Sophia did something strange. I asked if she was ok. She responded seriously "No, she's not" and called for backup. She said it looked like a seizure. Sophia spent the next 2 days in the NICU while a very caring and loving staff......poked her :-( An IV through her umbilical cord. Needles in her head. An EEG and finally, an MRI. 

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.

Getting a New Hobby

My favorite talk from our last general conference was given by Elder Bowen. 

http://www.lds.org/general-conference/2012/10/because-i-live-ye-shall-live-also?lang=eng&media=audio

 He spoke about  experiencing loss. He said "Because of Him, even our Savior, Jesus Christ, those feelings of sorrow, loneliness, and despair will one day be swallowed up in a fullness of joy." Shortly after, I got on my knees and gave my heart up to the Lord. For we had experienced loss of children in our home, an I had much sorrow in my heart still. I asked the Lord for an experience that would give me a new heart. I had the prompting to begin blogging again. And I soon found myself having an experience that I did not expect, but that I immediately recognized, was giving me a new heart. I saw experiences from other's perspectives, and I was finally able to let go of much of the pain.

I realized that for some time after we lost the boys I felt as if I had lost what had become my identity. This was the first time I had been a step-mom. I took the job seriously, and because of our unique situation, intense bonds were created. Not to mention I loved it when people asked me how many children we had :)

That question is different now. It's easy as an individual when your story changes for the better, but when hardships are ushered in, simple well meaning questions from strangers like "how many children do you have?" can bring an instant burning pain to your eyes.

And so it is time to find a new identity. And it is time to remember that we have not really lost who we are. We are people who acted the way we did because of love and because it was the right thing to do. And moving on does not change the past. It does not change the experiences we had as a family. It does not change who we were then, or who we are now. We are still the same people. Our situation just looks different than it used to.

We have accepted for a long time that Sebastian and Charlie will not likely be a part of our immediate family anymore. Moving has made that acceptance real. I hadn’t put it here on the blog because I didn’t want others' hope to be crushed as well. But that is our reality now. We lost 2 boys who we considered siblings to our children and sons to Jason. And although devastated we are moving on.

Of course, they are still important to us. We still pray for them, hang their pictures in our house, and reflect on good times. But we are hanging new pictures of our family too. We still consider them family and we hope to see them eventually. In fact, Mason and Jonah were recently given that privelage :)

From this experience I have gained testimony, knowledge, and even wisdom that I would not have had otherwise. I have learned that I can lean on the Lord in the worst of times and in the best. Although I would have always done the work of the Lord, without all these trials; I suspect the wisdom we have gained from our experiences will serve a great purpose in our lives, and with a little luck, we can bless the lives of others as well.

We are on our way up and out of this trial. It's a good feeling :)

And so now. We will settle into our new Apple Valley home. And I will need to find a new hobby. The blogging chapter of my life has ended, and it's time to find a new outlet and a new way to impact the world.