Wednesday, February 29, 2012

Some memories have returned........

I've mentioned before that I'm a member of Intermountain Healing Hearts, which is a support group for families that are dealing with congenital heart defects and heart disease.  The women I've met through this group are unique, they've all gone through hard things...... different situations for each of them, but similar too, they are all strong, and most of them have seen their children face death-some have survived, some haven't.  Being a part of this group has been a good thing for me.  Every time I've posted a question, I've had amazing support, they know what I'm going through and can relate.  Even though I have only met a handful of these women face-to-face, I feel like I know each of them and their children personally.  Today, one of these mothers had to let her daugther go.  Those of you that are on facebook, saw that I shared a couple of links that this mom posted about her last few days and hours in this life with her baby.  It was hard to read, but it was also empowering to see the strength of this woman and to see her perspective.  As I was reading her posts, and thinking about what they were going through, it brought back some things that happened to us, some things that I had forgotten about.  There are big chunks of time that are missing from my memory of those first few days.  Like after we were on the lifeflight jet, and arrived at Primary Children's, I don't remember anything that happened for like 4 or 5 hours and there are many other times just like that......  It's crazy.  But a few things came back to me last night.

A few days after we had been at PCMC, I'm not sure how many, but we weren't in the ICU anymore, so probably around 5 or 6 days, I remember Dr. E. asking if she could talk to me out in the hall, not in Abby's room with her, just only me.  We walked down to the end of the hall by the window.  She looked right at me and said, "Michelle, I want to make sure that you understand how serious Abby's condition is.  She's not going to get any better until she gets her heart, in fact, she's going to get worse and it could happen fast."  I'm not sure what I said back or what else she said, all I remember thinking is that she's telling me that if Abby doesn't get a heart, she's going to die and it could happen fast.  It was scary, but I needed to be told.  Later that day, Brittany and Brock were deciding whether or not they wanted to stay in Salt Lake for a few more days, or head back to St. George.  I knew that I had to let them know the same thing Dr. E told me.  I remember sitting in the Rainbow Cafe with them, and telling them that Abby was sick, really, really sick and that she was going to get sicker and sicker until she got her heart.  The look on their faces was one of fear, sadness, and confusion, I think we were all still just in shock about everything.  I felt like a bum for laying it out like that, but I also knew that they needed to hear just like I needed to hear from Dr. E.  It was probably one of the hardest things I've ever done, something that now, I will never forget.   Now I know why I blocked it out for this long.  It made me think that maybe I don't really want to remember all of those hours and hours that are gone. 

Thinking about this conversation, reminded me of another that I had with the transplant team, probably near the end of June.  We had been waiting for about a month, but it felt like 100 months, but Abby was still listed as status 2, so I knew we weren't getting too close yet.  I remember just asking them how they knew that we weren't going to be sitting, waiting for Abby's heart a year from now?? How did they know that Abby's heart  couldn't sustain her for another 11 years?? It had worked for the first 11years of her life, how did they know it wouldn't work for 11 more??  Then I started wondering if maybe they had made a mistake, maybe she didn't really need a transplant, just a surgery would do.  I remember asking them to double check and just make sure.  I couldn't understand how everything was working a few days earlier, and then all of a sudden it just wasn't working anymore.  It didn't make sense, and to be honest, it still kind of doesn't!!  This was another time that Dr. E and Dr. M had to tell me straight up how bad things were.  That same day they showed me Abby's echo compared with a normal one-Brock's echo that he they had done right after we got Abby's diagnosis.  At that time it was obvious that Abby's heart was sick, it couldn't be fixed.....another one of those tough moments that I had forgotten about.

Maybe, probably, moments like these will keep coming back to me.  If you would have asked me yesterday, I would have said that I wished I remembered every moment, every single thing that happened from the time we arrived at the emergency room in St. George, until today.  But now, I'm not so sure.  Things have been blocked for a reason, I guess when I'm ready I'll remember more.  For now, I'm just going to remember to find joy in the little things, to remember that each day is a gift, and to remember that people and the relationships I have with them are really what matters.


  1. I've been a quiet follower of your blog. I joined long before I myself knew that my unborn baby has a heart defect and will need surgery when he is born. I've been in debate for quite some time to join Intermountain Healing Hearts. Think part of me is scared to join becasue it'll make this all the more real. But my little boy will be here in such a short time now I know I need to be more realistic hearing how much they've supported you I guess it is time for me to join.

  2. "Find Joy In The Journey" (easier said then done eh?)