Friday, April 1, 2011

He Deserves Two Days

The day that MJ died I remember holding him and promising him over and over again that I would never forget him, never forget his fight, and never let him be forgotten. Personally this is incredibly easy for me, after all, I am his mother, he is my son, and NEVER will I forget him. Outside of my husband and I it seems as though the more time passes, the easier it is for others to simply let his memory fade. I will not let that happen. I refuse to let MJ simply become a baby that I had that died.

MJ - Michael Joseph - lived. He lived for 35 wonderful, amazing days and death cannot break the bond that I as a mother have for my child. I have to advocate for him because he cannot. I have to ensure that his memory lives on because he is not here to remind people that he lived. I have to refuse to allow the time and the years to act as a shield to forget. My sons are an every day part of my life.

Every day I am incredibly thankful for Will because he brings me an incredible amount of joy and love each and every moment. Every day I am incredibly thankful for MJ because he has changed my entire life in the most positive of ways. I am forever thankful for both of my sons and each of them have an equal place in my heart.

And just as the love that I have for Will grows each and every day, the love that I have for MJ grows each and every day. Unless you have lost a child, this is something that I don't think you can understand. I would think that most people would assume that as time passes, so does the feelings that come with losing a child. This could not be more incorrect. The pain is just as intense as it was the day we said goodbye. The love is deeper then the day we said hello. My heart hurts and grows with love more each day.

But I know that I owe it to myself, my husband, and my son in my arms to live each day with joy and to be happy. I have my moments of great joy and I have my moments of deep despair and a lot of moments in between.

MJ has two days, two days that are simply just for him. He has his Angel Day and he has CDH Awareness Day. Two days out of 365 that are dedicated to his fight to live. His birthday has to be for his twin brother. Will has to have a wonderful and joyous childhood and allowing him to be incredibly happy and delighted on his day of birth is part of that. So maybe in my own mind I have made March 31st MJ's 'birth day'. CDH was the birth defect that took his life, so the awareness of this day in my mind is MJ's day. Cities and states all over the country have proclaimed March 31 to be CDH Awareness Day year after year. If you remember last Topeka, KS proclaimed it as CDH Awareness Day. I want to do it again this year, I truly did. But this year was much harder emotionally than last year. Which is odd, because I would have thought last year to be harder, but the time took so much more of an emotional toll on my heart this year. I have been without my son for 18 months now, 17 months longer then he lived. To think of all the time I have lived without him, and all the time I still have until we can meet again is simply overwhelming. Its almost too much to bear. Maybe that's why this year was harder. And maybe it was harder because we are getting to a point where when we meet people they simply assume that Will is our only child and that we do not have any others (example: our daycare situation - and yes I bawled my eyes out when telling Will's teachers about MJ - that is a whole new post).

Knowing that from this point forward MJ will be nothing other then a baby that I had that died to people as they come in to our lives hurts so much. And this is why it is so important to me to have CDH Awareness Day be about MJ just as much as his Angel Day. He deserves that. He deserves two days and one of those two days simply cannot be his birthday. I hope he understands that it has to be about Will, but because of that I have given him another day. March 31 and August 29 are MJ's days. They are all about him to me, my husband, and Will, MJ's twin. For those people in our life that supported us and CDH and MJ we cannot thank you enough, it means more then I could ever explain.