Rainbow Kids

A few days ago I wrote in my journal/blog the following:
So, if you see a lady driving down the freeway in a red van and she's crying...it's probably just me.

After exercising this morning I should add to this:
If you see a lady exercising with a red Jog Stroller and she's crying...it's probably just me.

I don't know why it hit so hard this morning. Probably cause I started thinking that on Friday it will have been five months since I held my little man. I started thinking about how chubby and fat and cute my other children were at five months and what Connor may have looked like and what type of things he would be doing. And in thinking about all of that I started crying and tried to look the other way as I passed cars and other joggers.

I started thinking about Connor's heart. During our "big" ultrasound, Spencer and I both noticed that there were two holes in his heart (rather than the one which should be present), before anyone mentioned that anything was wrong. Once we commented on it, the kind lady who was performing the ultrasound gently agreed and then started to point out other parts of his body which she could not find or had not formed properly. Talk about a day to remember.

Because of Connor's heart defect, they sent us up to Primary Children's Hospital to have a fetal echo cardiogram. By then we knew that Connor would probably not live long, if at all. This fetal echo was to determine just how serious of a defect he had. The unltrasound was one hour of silence. The only sound was of two doctors quietly whispering to each other as they studied the flow of blood in and out of Connor's heart. It was a long hour. Then they gave us a few minutes to "get it together" and then invited us out to another room. We knew it couldn't be too good when we walked out of the room into the hallway and there stood a small army of people, all lined up in a row, looking right at us. I remember saying to Spencer, "It can't be good if they are all here to meet us."

We crammed ourselves into one of those dreaded conference rooms where the Dr. first told us that Connor's heart wasn't as bad as they had first suspected (the first Dr. we met with called his heart, "confusing.)" This specialist said something which gave us hope. He said, "Some of these guys are fighters. I believe his heart is strong enough to make it through labor." This was such a relief to me because in my research I had found that many babies with Trisomy do not make it through labor. It just puts too much stress on their hearts.

Anyways...these were all my thoughts as I went running today. It made me cry...in gulping sobs...and I haven't cried like that in forever.

One of the people in this small conference room was Kelly, a nurse who helps families like ours. She put us in contact with a group of people who run "Rainbow Kids" up at Primary Children's Hospital. They are a pallative care team who meet with families whose child has a life-threatening illness. Our team was made up of a social worker, nurses, a doctor and I can't remember the rest of their titles. But they are great people who I still think about. I wonder how they do it, again and again?

Beth, Joan, Toni, Kelly, Orly and Michael Jackson met with us several times, answering our questions as we were faced with making some hard decisions. I felt like I have not had to make so many decisions in my entire life as we did during our pregnancy with Connor. Everytime we turned around, we felt like we had to make another decision. And really hard ones, ones we didn't want to have regrets about later. They with us to answer questions and guide us through the acceptance process of what was going to take place (similar to Angel Watch). The difference for us was that Rainbow Kids helped answer our medical questions, which no one else had been able to do.

Children born with Trisomy 18 (and 13) have issues which vary. Some are more mild which allows them to live longer and some are more severe, leading to a very short life, if they are born alive. These guys helped us learn that Connor's extra 18th chromosome had done a good job messing things up.

We needed those visits with Rainbow Kids. Things were said that needed to be said. I remember the feeling in the room on two occassions. It was silent in the room and I knew that the words spoken were meant just for us.

On the back of their brochure, they write that "Rainbows...are a sign that one can find hope and beauty in unexpected moments, even during the darkest storms."

I am so glad I live in this age of technology. Because of it, we were able to know in advance that Connor wouldn't live long. It allowed us to meet with Angel Watch and Rainbow Kids - to make hard decisions beforehand and to have a birth plan prepared. It allowed us to have our other children waiting just outside the door, so they could meet their little brother. It allowed us to have Julie Williams and Miyo Strong in our room to capture his birth in photos (and me crying as he's born. I don't look so pretty as I cry, but those photos are priceless to me).

Our 90 minutes with Connor in our arms and hearing his little squeaks was one of the sweetest experiences of my entire life.

I felt pure joy and pure love.