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So this is my post from Father's day so my blog entries are a little out of order...oh well.  I find that all our moods are starting to pick up again now that we are almost through June.  Now if I could only figure out my inlaws....;p

So Father’s Day of last year is when we made the most horrible decision we would ever have to make. That was the day we decided it was time to take Scott off of life support and let him go and be at peace.   Some may think why didn’t we just wait one more day but we choose to look at it as a father Mike did the most unselfish thing he has ever done by doing what was best for his second son no matter how hard it was and what day it was.

I remember going in Scott’s room that morning. ( by then they had moved him into his own room since we had let the staff know the day before we would be making this decision) and first seeing the photographer there from the nonprofit organization, “Now I lay me Down To Sleep” taking photos of our son. A wonderful program I realize now but then and now I really really really hate the name!   We could not be in the room we left and waited down the hall till she was done. It was so hard watching this woman take photographs and knowing that was all we would have. They asked if we wanted to be in the photos but we couldn’t.  we were way too emotional.

When the photographer finished and had left we went in to visit with our son before having the “final” meeting with his doctors to make the decision. On his bassinet the nurses had put a little sign that read, “Happy Father’s Day” there was his foot print and hand print on it. I saw it and it about broke me in half but I kept a brave face hoping that Mike would not see it. I knew it would make the day all that much harder for him. Of course he saw it but he did okay with it.

We then met with his wonderful doctor. ( how caring and compassionate she was always making herself available to us even giving us her cell number at one point) and then conference called his genetics doctor since she was out of town. We sat at the conference table just me and Mike and the doctor and listened to the overwhelming information the genetics doctor gave us over the phone. All the decisions we still had to make autopsy, partial autopsy, banking cells, banking blood, what insurance would cover what it would not if we chose to bank anything. We were already emotionally drained and thought we had already made the last final decision we had to make on all this and then find out we hadn’t. It was so overwhelming and we hung up with her our heads spinning and looking at one another with the glance of do you remember any of that? Maybe we should have wrote it down…then his other doctor who was in the room handed us a paper with all that had been discussed on the phone. She had wrote it all down for us…Bless that woman.   I was adamant that if we were making this decision to end his suffering that I was not going to have an autopsy after he had passed. So we chose not too.

I then went into his room and said goodbye for the last time. It was the hardest thing I ever had to do. We were told that sometimes they can live for a few days. But I knew once I left there I wasn’t coming back I couldn’t. My strength was crumbling and I had to hold on to what reserves I had left to get through his funeral and other things to come. I held him and then I laid him down in his bassinet kissed him more time and left.

My husband had made the decision to sit with him all the rest of that day and most the night. My oldest brother sat there with him not wanting him to be alone. How thankful I was. I couldn’t ask my dad to do it and I couldn’t so my brother stepped up.     But Scott did not pass that day my little fighter who had nothing to fight for lived for two more days. Mike told me when he came home early the next morning that there was one point during the night that Scott died in his arms and then took one giant gasped of air and came back.   He told me that moment will haunt him forever. I think though that Scott held on to see me one last time because I did end up going back the afternoon of the day he died. But that’s a post for another day. Somehow even though his brain function was practically nonexistent my son knew who I was. I don’t know how but he did. He would only open his eyes for me and he would grasped my finger so tight. To this day I cannot have Colin hold just one finger when holding my hand.

So today is Father’s Day Mike asked that we not celebrate it. So Colin being 4 has no idea it was Father’s Day so we just told him it was grandpa’s day he made them presents. All Mike wanted to do was go to the movies. He and I saw Super Man. On the almost exact year to date that one has made the decision to give up their child, Superman really not the movie to see. The scene where the parents are saying goodbye to their baby and kissing him before putting him in his space craft, yeah….talk about flashbacks. The movie also had many religious over tones which normally I have no problem with. But this made it hard as well because I still wrestle with so many questions, and so much anger. I have yet to figure out what prayer is since I had so many prayers said for my baby. I still don’t understand why and quite frankly I’m pissed off at God. But this was Mike’s day and so I endured. He has taken such good care of me the past year and put my needs at times first over his own. After the movie he was apologizing left and right even though I had not said a thing. But I know it was because it was really hard for him too and that maybe he regretted choosing today to see that movie a little too. Driving home I was thankful for my very dark, large sunglasses because out of no where came a sadness I hadn’t felt in a really long time. The tears took over but I could not let Mike see them because he would have felt so bad. But they passed we went home, saw our other little guy C and then made jam.   When you pick 20 lbs of strawberries the day before you have to do something with them.

I have attached a pic which I hope can be seen the angel is very light in color.  My friend sent me this card and it touched me.  Because I see butterflies everywhere now since Scott has passed away.