Sunday, June 13, 2010

A lot on my mind

Today I am packing for the CDH Summit in Philadelphia that we are going to next week. We are making a road trip of it, and we are really excited. We get to meet another CDH momma that we met online on our way. When we were pregnant we belonged to a due date club on Baby We both had CDH babies. I knew ahead of time, where she did not know ahead of time. We lost MJ, and her son survived and is doing wonderfully! I can't help but think about if we didn't know and what sort of emotions that we had. I don't konw which would be better, knowing about CDH or not.

Anyway, after our stop in Indianapolis to meet them, we are headed to my sisters for a few days before the Summit. I am really excited to see her and her boyfriend. They live in New York and we have never been there before, so it will be really great to see them and where they live. Then we head to Philadelphia for the Summit! Which is really exciting to finally be able to meet so many different people that I have met online, and never in person before. Plus, we have never been to Philadelphia before, so we are excited to eat some Philly Cheesesteaks! We have traveled with Will a few times before, via both car and plane, but this roadtrip is going to be quite a drive and a long time on the road. I hope that it all goes well and we don't have too many hiccups. But knowing life, we will :)

While I am packing today and getting things ready for our trip, I can't help but think how different life would be right now with MJ. We probably wouldn't be going to the Summit this week. MJ would hopefully be home from the hospital, but he may not, and our life would be drastically different. I look around our living room and its scattered with Will's toys. I think, if MJ was home right now, what would our living room look like? He probably would have come home on a ventilator or at least oxygen. He probably would have needed a feeding tube. What would our home look like? I remember when the doctor told us that MJ would be in the hospital 6-12 months. He was talking to us and was very frank and matter of fact. No emotion. I so desperatly did not want to cry in front of him. Dr. K was the head of the NICU and one of the most respected doctors at Children's Mercy. I bit my lip so hard to keep from crying, it bled. He left the room and I just lost it, I was holding Will and I was crying so bad. Our nurse that day, Phyllis, held me and I just sobbed. At the time I was thinking MJ would be home before Christmas, which would have put him at five months. I was thinking, how are we going to manage a year in here? And a ventilator at home? How will I ever figure it all out? But Phyllis, she talked to me and she said that no one had ever talked to us about MJ coming home because they didn't think that he ever would come home. And I remember her telling me that she truely though MJ was a survivor, that he was going to make it. She said she felt it in her heart, and the other nurses did, too. It made me feel so much better, and I kept repeating what she said in my head, he's a survivor, he's coming home. We lost MJ three days later.

I miss him so much, each and every single day. That hole in my heart sometimes seems so huge. So while today we pack to learn more about CDH and meet the people that have gotten me through the last nine months, I miss MJ even more then I did yesterday. However, I think that every day. Each day without my son makes me miss him more. I will never stop loving MJ. I will never stop missing MJ. I will always be his mother, and he will always be my son.


Lisette said...

Such a pretty post. I am positive MJ can feel your love in heaven. I don't think it ever gets easier but we have to believe one day we will meet again. Hope your trip goes well. Be safe and big (HUGS))