Friday, September 28, 2012


Will fell at daycare yesterday and broke his arm. My lovely little boy broke it so bad he needed two pins to put the bones back in place, which required surgery to do so. Today was the fifth time I have handed over one of my children to a surgeon. MJ had 3, and this was Will's 2nd. It all happened so fast I didn't have a whole lot of time to think about it all, which I am thankful for. It was a lot easier to go on autopilot 'mom mode' and get him in to urgent care, the orthopedic surgeon, and then the hospital for surgery.

It really hit me today when they started to give him medicine to relax and calm him before they took him away for surgery. He was given versed to help relax and make him quite loopy. The nurse was explaining what versed was. I wanted to say, 'I already know what it is, his twin was doped up with it basically his entire life'. But I didn't. It wasn't worth it to me to bring up all the old feelings that were flashing through my mind. Then she put a pulse-ox on him and explained what that was. Again, I wanted to say, 'Yeah I am fully aware of what that is, it is one of the few momentos I have from his brother after he died, and it is currently sitting in a shadow box in my room, next to his ashes.' I hate that a 'normal' (whatever that is) parent would need to know what that is. Not this momma; not a NICU momma. As they were about to wheel him away my eyes got really teary, but then the versed made him so loopy it was so funny it lightened the mood up for both of us quickly.

Then after his surgery, when they woke him up, he had an IV and the machines were beeping measuring his oxygen level. Those sounds brought SO.MUCH.BACK. I remember staring at those machines begging God to let MJ's oxygen levels come back up. Will was statting at about 98-99% oxygen. I'm not sure if I ever remember MJ statting that high. His goal was 92% or better. The lowest it got was 17%, and that was when we decided to take him off the machines. At that point the nurses turned the monitors away so we couldn't see them. I am thankful I don't have a memory of 0% on that screen.

I swear this better be the last surgery for my children for many, many years. My heart won't be able to take it for a long time.

Friday, September 21, 2012

Odd One Out

Tonight I am going to pack the kids in the car and make a drive to Kansas City for a CDH fundraiser another wonderful CDH family is putting on to raise awareness/funds for research. I love going to these types of events. It makes me feel closer to MJ because I am doing something for him, and something because of him. There will be four other CDH families there tonight. We will be the odd ones out because we are the only family whose child did not survive. The only family to say goodbye.

I won't lie it is going to be hard to go there tonight knowing this. Several people have asked me why I even want to go. The answer is simple to me. MJ is my son. The only way I can parent him is to parent his memory by speaking of him, talking of him, and letting people know that he lived. I'll probably cry. Or if I don't I know I'll cry the whole way home. Willie has a football game tonight (he coaches high school) so he won't be able to come. Thank goodness the kids should both sleep on the way home so I'll be able to get my cry in.

A few months ago Children's Mercy Hospital asked Willie and I to be on the NICU Family Staff Adivsory Board. We were thrilled and said yes to such an amazing honor. I was really looking forward to being part of something that can help so many families. And then we went to our first meeting and realized we were the only people who had lost a child there. Again I just feel like the odd one out when we go. No one really has made us feel that by saying or doing anything. I think maybe I just feel that way because there are so many references to things I have never been through. We will be working with the March of Dimes and to build a better NICU and we were given a list of modules to focus on. We were to pick two modules and start from there. Last meeting we picked our modules and we picked Kangaroo Care and Transistion to Home. I have no experience with either of those things. The only time we held MJ was the day he died, and quite obviously we never brought him home. I am worried we will have nothing to contribute. I am worried people wonder why we are there because we don't have any experience in the modules we chose. The other families and staff are so nice and I am probably just reading into things. But I really feel like we'll be sitting at the meetings with nothing to contribute because we've never done either of the things we are focusing on. And while I really am so happy the other families all brought their babies home, it just reminds me that we didn't get our miracle. I'm not quite sure I will be very useful to the group. I want to give it a few more meetings (we only meet once a month) and see out it goes, but at the same time I am doubtful.

We are thrown so much into feeling like an 'odd one out' so to say in every day life, that I am not sure how much more I want to expose myself to. I want to do these things, I want to contribute to CDH awareness and CMH to make things better for other NICU families. But I its also hard at the same time. I wish I knew more people who have had similiar experiences as us, but we don't. Or we do and they are mostly my online friends. One of my best friends is another CDH momma I met online. They lives in New Orleans and I've been down there twice to see her. I talk to her almost every day, and we always talk about how if either of us wins the lotto, we are buying the other a house next door to the other. Obviously she lost her son to CDH, as well. We are planning a family vacation with them in June to Texas and I can't wait. They also have a daughter that was born a few weeks before the boys (her son, Drake, would be four), so we have a lot in common.

I'd love to have more people like her in my life so I don't feel so 'odd' all the time. But this is all the entails when your child dies before you. This is our life and no matter how much I want to bring MJ back, I can't. And it sucks. A lot. I always think that someday I'll figure it out, but I don't think that will happen on this side of Heaven.