Glass Half Full...

I’ve come to the conclusion that there are worse things that can happen in life than death. The fact that life must go on despite death is even crueler than death itself. I know that sounds like a completely cynical thing to say, but it’s a fact of life and I’ve come to terms with it.

Life goes on whether you want it to or not.

I should have shut down died right there with Ethan, but I didn’t. Believe me… my heart still continues to ache with his loss, but I know that life MUST go on. I recognize that Ethan would have wanted me to be happy even though his passing has done nothing but fill me with sorrow.

I want to do what my son would have wanted so I’ve tried to move on with life. A part of me died when my son left this world and I will never be the same person again. However, it is what I choose to do with this experience that will define what type of mother I am. Yes I’m a changed person, but "what kind of different" I turn out to be is entirely up to me. Do I go crazy or stay strong? Choice number two works better for me, but it’s not an easy feat to accomplish.

Ethan’s passing has made me equally weak and strong. Losing him made me realize how vulnerable my heart really is. (I'm an emotional hemophiliac now.) His passing also made me realize my own inner strength. (I surprised myself when I didn’t go crazy with grief.)

Life threw me a huge lemon and somehow I have to figure out how to make lemonade. Eventually, I have to re-learn how to enjoy that lemonade. I’ve always tried to be an optimist, but it’s hard to see the glass as half full right now. I question my ability to see anything as "full" when I struggle to not feel so empty inside. Nevertheless, I try. Life goes on right? I try my best to make my heart stop hurting. I try my best to forget, but I’m not trying to forget Ethan.

I will NEVER forget my son.

What I am trying to forget is how much it hurts to not have him in my arms. What I am trying to forget are the last moments we spent with him in the emergency room. What I am trying to forget is the fact that I will never see him grow up. Well, trying to forget is hard to do.

No matter how hard I try to remember "only the good", certain thoughts continue to haunt my mind. The "why factor" preoccupies me sometimes.

Why did this have to happen to my son? Why did he have to be Factor VII Deficient? Why couldn’t there be a way to save him?

Obsessing about "why factors" has gotten me no where. It just makes me have a pessimistic outlook on life. Asking "why" to questions that don’t have worldly answers is pointless. I have to learn how to stop thinking about "why" because I’ve known "why" all along. To simply put it…

it was God’s will.

That should be enough right? I have to have faith that someday that answer will be enough. Eventually the "whys" will slowly fade away. The glass will slowly stop being half empty and start to be half full.

For now, I take things day by day and look forward to getting a little bit closer to "closure". His 40th day passed on Sunday so John and I have stopped praying the rosary every evening so our son can "rest". I got two steps closer to closure yesterday too. We met with Ethan’s hematologist and learned that he did indeed inherit Factor VII Deficiency from the both of us. We have a 25% chance that any male children we have will be born with it, but at least we can be prepared in the future. Should we decide to cross that bridge again, as always we’re going to hope for a girl because females are rarely born with inherited bleeding disorders since women are XX. I suppose there is some light at the end of the tunnel, but God only knows what He has planned for us. There’s a 75% chance that our next male child won’t get it, but that 25% is still risky. Nonetheless, I’m glad we know how it happened now.

We also approved the final draft for Ethan’s headstone yesterday. I’ve obsessed about giving all of my children meaningful names and looking at Ethan’s name on the headstone was breathtaking. It was beautiful. It finally dawned on me that aside from giving him life, his name will be the only gift that John and I will ever give him. In this life and in the next, he will always have that name.

Ethan Nikolas de Leon(END) – his name turned out to be so appropriate, but not in a sad way.

I don’t find irony in his initials even though some of my family members have. He was supposed to be the end of our children (if three kids was too crazy) or at least the end of the boys if John and I decided try a fourth time for a girl.

The name Ethan means "strong". Despite the fact that he did not survive the bleed, my son’s spirit was strong. He went through so much and still he went peacefully. Because all of our children have a saint’s name (Catholic tradition), Nikolas was derived from the patron saint (guardian) of children St. Nicholas. I have faith that my son is in heaven being guarded by St. Nicholas and nurtured by God.

Ethan Nikolas de Leon, my son. I miss him so much, but life goes on.

P.S. BIG THANK YOU to all of you who wanted to remember Ethan with a blanket donation. I am happy to report that the ICN babies will be wrapped in luxurious warmth thanks to you all. The blankets were lovely.