Thank you all so much, I can't believe how many people were praying and thinking of Jack. I read every comment left on the last entry, and on my post on the Nest. I really took so much comfort from them. One of the things that's helping me is knowing that Jack touched so many people, and all those notes are proof to me. I look at them and think how one little sick baby will be remembered by people all over the world.
I want to write about Jack's last few days, but it is just too hard right now. I will say that the last hour I spent with Jack was the most special, incredible thing I've ever gone through. I feel so incredibly honored and blessed to have been there not only when he entered the world, but when he left it. He left with such grace, and peace, it too has given me some comfort.
He also made it clear he was ready to go. I feel like it was his last gift to us that he made the decision a little bit easier. It really wasn't much of a decision at all. He got progressively worse from Sunday to Monday.... by Tuesday evening, they had to sedate him and turn his vent all the way up to keep him from having more bad episodes where his heartrate dropped into the 50s, and his oxygen saturation dropped down at one point to 8 percent. They kept him comfortable and alive because I was not ready to let him go yet.
I'm not angry at God anymore, I made peace with him those last days I spent with Jack. A huge part of it is that, he has my baby now. I can't be angry with him. I have to have faith. I have to believe I will see Jack again.
I know Jack was here for a reason, and he was only meant to be here such a short time. I told PJ, Jack did more good and touched more people in less than 3 months than I have in 38 years. We need to spend the rest of our lives trying to catch up to him, though I don't think it's even possible.
Jack's funeral was amazing. So many people came to say goodbye to Jack, even some of the nurses from his time at St. Barnabas, which really touched PJ and I. We will never forget the nurses we met, both at St. B and at CHoP. They are the strongest, kindest women. So many of them told us how much they loved Jack , that they would hold a piece of him in their heart forever. They loved him and cared for him. They cried with us when we let him go.
Bloomfield made Jack an honorary firefighter. He had an honor guard standing next to his little casket. When they carried it out of the funeral home, the street out front was lined with fire engines, and a row of firefighters all standing at attention from one end of the street to the other. The procession had a police escort, blocking off Bloomfield Avenue through six towns. Two officers on motorcycles rode alongside the hearse, one on each side, with the fire engine leading the way. Everyone we passed stopped and looked, some made a sign of the cross, some even saluted. I wanted to yell Jack's name out the window, say this was my boy, he deserves all of this. My little cross eyed baby, who couldn't even breathe, never even left the hospital, got all this.
The priest at his funeral talked about how Jack had cracked open all our souls. I think he did. He opened them up, and we all have let so much in because of it. So much love, faith, hope. I hope it means we've let some out too. I hope we never let them close again. We have to keep them open for Jack. Don't let him fade away. Remember him, please. Remember him by being kind to each other, loving your family as much as you can. Being a good friend, a good person. Don't let little things upset you. Keep the perspective on life that I know Jack has given me. He fought so hard, he was so brave, he gave so much love without ever saying a word.
We chose a local cemetery for Jack, and I'm so glad. It's in my hometown, and close enough that I can walk over with the girls and we can visit him whenever we want. The day PJ and I went to pick out his plot, we were standing on the spot we chose, under a tree right near the road where children walk by and people walk their dogs, when PJ said, Meg, look!! He pointed to the street sign right across the road. The name of the street is Jackson Place. We couldn't believe it. We knew for sure then, it was the right place for our Jackson.
That Sunday before he died, when I walked in first thing in the morning to see him, he was laying in his crib, eyes wide open, staring at himself in the toy mirror Santa had given him. He was waving his little arms around, and his eyes were big as saucers. He looked so happy, this baby who couldn't smile, he was smiling. That is the moment I try to think of when I remember Jack. He did have joy, even with all his pain, his suffering, the tube down his throat, he still had joy.