CDH Awareness Day

Tomorrow we wear Turquoise. It is Congenital Diaphragmatic Hernia (CDH) Awareness Day. MJ was born with CDH. In case you are not aware, CDH occurs when the diaphragm does not fully form, leaving a hole in the muscle that is supposed to seperate the stomach organs from the chest cavity. Due to this hole, the stomach organs then migrate and grow in the chest cavitity, and severely hinder lung and heart development. Here is a diagram to visually explain.

You can see that the left lung is underdeveloped squished due to the organs being in the chest cavity. (This picture also links to further details on CDH).

If you can, please wear turquoise tomorrow. I know its Easter Sunday, but just a little bit would mean a lot! To me, CDH Awareness Day is a day for MJ. To celebrate and remember his life. To be honest, it is kind of similar to his birthday to Willie and I. Mostly because since MJ is a twin, their birthday has to be for Will. It's just not fair to Will to treat it any other way.

July 25, 2009 I delivered two amazing sons. But we only celebrate with one, because it is not fair to let Will's birthday be marred with sadness because MJ isn't there. Don't get me wrong, in the quiet of the morning and the still of the night, I weep. But that day, and that party I smile and celebrate Will's life. So March 31 is a day for MJ. Along with August 29, the day MJ died. And October 15, Pregnancy and Infant Loss Awareness Day. He deserves some special days, too- you know?

MJ lived for 35 days, so I think that three days out of the year that are 'his' are more than okay. I know my baby loss mommas get this. And I sadly know that sometimes not even family try to understand. So to honor and remember my amazing little boy who fought harder and braver than I thought possible, I WEAR TURQUOISE.

But I Want Them All

Today we decided to spend the day and night at CoCo Keys Water Resort in Kansas City. Willie is going out of town next week and so we wanted to do something fun with the kids, because this will be the longest they have gone without seeing him every day. (I have no idea how you military families do it!)

About half way through our first day we were sitting in the kiddie pool and look to our left to see the cutest set of twins in matching swim suits. As I always do when I see twins I immediately started to think about how I should be thankful for what I have, instead of dwell on what I don't. I was holding Maci and thinking about how hard it was to conceive her, and that she probably wouldn't be here if MJ lived.

And then I thought why am I trying to convince myself of this foolishness? I WANT them ALL I have carried four children in my womb, prayed for four children, bonded and loved deeply four children. I hold two of them in my arms today. Pretty shitty odds if you ask me. I want them all. MJ died in my arms almost four years ago. I miscarried a baby in January 2011. Why can't I have them all?

So many people, people who don't deserve the wonderful amazing children they are blessed with, don't care. And us, we'd do anything for our kids. We prayed and prayed and asked God to let us switch places with MJ. And at 35 days he slipped away and there was nothing we could do. I want them all, I don't want only half.

Sometimes I See Double

(I submitted this post to Still Standing and it was published on March 5, 2013, head here to see the original posting.)

Sometimes I still see double. It’s been almost four years since I held my twin sons in my arms for the first and the very last time. Will was born, and still is perfectly healthy. MJ fought a battle with a congenital diaphragmatic hernia (CDH) for 35 days before we were given the choice to let him die on an operating table or in our arms. We held him and we got one moment, which lasted a few hours to feel the weight of two infants in our arms.

The first year I swear I saw two babies every time I looked at Will. Very slowly MJ’s ghost seemed to fade from my mind as Will got older. The more time that passed the more we became parents to one living child and less parents of twins in which one died. We met new people and did new things and were completely focused on giving Will the childhood we longed to give two little boys.

We sacrificed a lot those first few years. Someone once told us that we had to ‘fake it till we would make it’. Somewhere around year three we started feeling like we were making it instead of faking it. Will, and now Maci Jayne- our rainbow baby, lack for nothing. They are spoiled in a way that only living children of bereaved parents can be.

Now Will is starting to understand and grasp that he is a twin to a brother he can only see in pictures. He likes to look at them and ask questions that we don’t have answers to. His eyes get so big and sad when he asks ‘Why is MJ in the sky? I want to see him.’ Those are questions that won’t ever be answered this side of Heaven.

I wonder if we are doing it right. I wonder if we talk too much about MJ, or if we talk too little about him. I wonder if we are exposing him to a side of life that is far beyond his little minds comprehension. Especially when he asks if the zoo’s pregnant orangutan’s baby will go fly in the sky like MJ.

I suppose we can only do the best that we can, but really- what is the best that we can? Will and Maci seem happy. They laugh a lot and are both further socially and academically than where guidelines suggest they should be. So I suppose however we are doing it is working.

But I still sometimes see double when I look at Will. When he’s brushing his teeth, or running up the stairs, or when I kiss him goodnight I wonder how it would be to kiss two little heads in two little beds like I dreamed the moment the doctor said ‘Its twins!’ And the more Will asks questions the more I wonder what it could be like if he lived, and the more I long for what my mind sometimes tricks me into seeing.

Signs

I've seen so many signs from MJ today, too many to be a coincidence. First, I save MyCokeRewards points, and today I was plugging in my points to the reader. I've been saving them for almost a  year and only have come across two or three that have 'MJ' as part of the number/letter sequence. Today I came across two back to back. I save each one that has the 'MJ' sequence, I'm not sure why, but I just love seeing those two letters so I save them whenever I see them.

Earlier this week I got the mail and we got a flier from 'MJ's Auto Body'. I've never heard of this place and apparently they've been in Topeka for quite some time. Totally makes me want to take my car there!

And today I was shopping for items on my lunch break for MJ's Memories. We are getting ready to donate our 1,000 care package to NICU families in MJ's honor, and the song 'One More Day With You' came on the radio. I totally broke crying.

These little things are just too much too close to be random. I know it has to be my boy sending me his love. It's almost been four years since we've said hello and goodbye 35 days later. The end of this month is March 31 and CDH Awareness Day. March 31 kinda begins the 'hard time' of the year for me and it ends with the day he died, August 29. So many memories and flashbacks happen during this time for me. Four  years, its too long to comprehend at times.