I Never Wanted Any of This

Exactly eight months ago today I was lying in my hospital bed elated at the birth of my twin sons. Will was in my arms and MJ was stable and doing better then expected in the NICU. I was attempting to eat so I could build up my strength after 26 hours of labor and a c-section. I was talking with the nurses and trying to get to see MJ for the first time. It wouldn't be until almost 10 pm that evening that I would see MJ. I will never forget the moment that I laid my eyes on him for the very first time. Tears flew from my face as I tried to comprehend what my son was facing. I knew before he was born that he would have CDH. We had a tour of the NICU and saw other babies hooked up to the same machines that MJ was on. But still, it doesn't truly hit you until you see your own son fighting for his life. He was on an oscillating ventilator, and for those of you who don't know, the ventilator violently shook his entire body as it filled his lungs with air. We could only touch his leg and talk to him. No stroking or kisses or holding his hand. All we could do was touch his leg and pray.

 The First Moment I saw MJ

Those days play through my mind all the time. I wonder if there was something more I could have done to save him. I wonder if I would have talked to him more, would he have wanted to fight more? If we would have chosen a different hospital, would it have made a difference? If I would have been able to hold on to the boys just a little while longer, would his lungs have been just a bit bigger? Could my body have been better for him in the eighth and nineth week when the diaphragm forms, would it have formed correctly? I remember I spotted during that week. I remember I thought maybe I was having a miscarriage. Now I know. I know that that is exactly when his diaphragm did not form correctly and his fate was formed. Could I have done anything, anything differently? These thoughts haunt me. Each and everyday I think about these things. If I could go back and choose things differently would MJ still be here? Would he be celebrating his eight month birthday with us? I don't know, maybe it would play out the same no matter what we did. I just can't help but think maybe if wouldn't have.

The end of the month is always very hard for me. Especially the 25th and the 29th day of each month. The 25th is a monthly birthday for my boys. The 29th is another month that I have to live without MJ. Lately I have been feeling a lot better. I have felt as if I am coming out of the fog that I was in the first six months after we lost MJ. And last night I kind of lost it again. I don't think I even realized until this morning. I was super stressed out and I took a shower and just fell apart in the shower. I just wanted to scream as loud as I could that I NEVER ASKED FOR THIS, I JUST WANT MY BABY BACK, AND I DON'T WANT ANY OF THIS. I just want MJ. I never wanted memories of my son. I only wanted my son. I still want my son. I want to share a few lines from a song that kept me going when my Dad was battling cancer (he survived, thank God).

If you're going through hell keep on going 
Don't slow down if you're scared don't show it
You might get out before the devil even knows you're there



I've been deep down in that darkness
I've been down to my last match
Felt a hundred different demons breathing fire down my back
And I knew that if I stumbled I'd fall right into the trap
That they were laying

But the good news is there's angels everywhere

That's how I felt last night, deep down in a darkness with demons breathing down my back.  I know my son is an angel, but still, sometimes I can't cope with that fact.

 Tonight we are flying out to Nevada to see my husband's side of the family and to attend the CDH Awareness Walk that my sister in law has coordinated. It will be very hard emotionally for me. I know this. Things like this always are. But it will also be wonderful to see family again. It is hard living so far away from everyone. My sister lives an hour from us, and all of our other family lives in Chicago, New York, and Nevada. My mom if flying out for the walk, too, which will be great to see her as well. I know I will have lots of pictures from the walk to share, too! So I will be away from here for awhile because all I will have is my blackberry. So I wish everyone a wonderful weekend!!