Three Years Ago

I married the greatest man I will ever know. He has been my rock and my strength and I don't know how I could survive without him. I am so incredibly blessed to have such an amazing husband. No matter where I go or what I do, he is always beside me every step of the way. We have had many, many great times together. And we have also endured the worst possible thing to ever happen to someone when almost one year ago our son died.

I look at this picture above and I see two people madly in love with so much hope in their eyes and so much to look forward to. And I don't even know them anymore. We have been through so much we know the depths of heartache and loss, we've been through the worse and it's pretty hard to see the sunlight right now. We are jaded. Our hearts are broken, and the scar will always remain.

One year ago we still had that hope. One year ago both of our sons' were alive and MJ was having a great day. He had been transferred to Children's Mercy Hospital the day before and I was released from KU Med that day. We rushed right over to see MJ and were so happy when we realized that we could bring Will in to see his brother each and every day. This is one of the few complete family photos that we will ever have.

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We have no clue what was ahead, and we were so happy to have our family of four together. You can see that MJ was starting to swell from all of the fluid that he was receiving via iv. Both Will and MJ were exactly six pounds each when they were born, but here is looks like MJ was an eight pound baby. He probably did weigh eight pounds, but he never should have that soon.

Things have been pretty hard for me as of late. I didn't think that they would. I thought the week before their birthday, and their birthday would be hard. But the feelings and emotions that I am having now are so much more intense and harder then I thought that they would be. I feel like I am in limbo and waiting for this crash to happen on August 29 (MJ's Angel Day), like I can't quite be happy, but I shouldn't be an emotional wreck just yet. But I am. I am an emotional wreck, and I don't know what I need or what I want. For example, last week a close friend was talking about how she knew SO many people with twins. And while she included me in that group, it felt so wrong and it hurt so much. You see, all of these twins she was talking about were living breathing, healthy babies. I will never know what its like to juggle two babies at the same time. I will never see my twins side by side. I will never get to laugh about their identical schedules or talk about the crazy bond that my twins have. The only time I held them together was the day that MJ died. I want to be included as a mother of twins, but I don't want to hear about twins. My emotions are so all over the place it's not even funny.

I have another friend that has a 16 month daughter and is due to give birth again in September. I was talking to her the other day and she told me how worried she is about how she will manage two babies. Um, hello? I would kill someone to have two babies. How do I even respond to that?

Sometimes I just feel like the people that I think should be sensitive and should know the right things to say or do are the ones that hurt the most. All I want is for MJ never to be forgotten and he was forgotten by people that have lost their babies and I never expected them to. And that hurts so very bad.

The people that I expect to forget MJ or the people that I expect to say hurtful things, don't necessarily hurt the worst. It's the unexpected that really just cuts me to the core.

And this time, these 35 days are so much harder then I ever thought they would be. I need some compassion, I need some sympathy, and I really just need someone to say, "What your feeling is okay, and normal, and it really, really sucks, and no matter what I love you." I need to know I am not crazy.

Emotions

This time last year MJ was alive and fighting for his life. He was having an okay day and they were planning on weaning him for the oscillator, or 'jet vent'. This type of ventilator would shake his entire body as it pumped 400 breaths of oxygen in him each minute. I will never forget the sound of that machine or the way his body shook so hard. It was this evening one year ago that MJ started to turn for the worse. He was KU Medical Center and the doctors weren't sure if he would make it through the night. I remember posting on facebook for prayers and thinking I was being dramatic because there was no way that MJ would not live. The next morning the doctors came in and told us that he needed to be transferred to Children's Mercy Hospital so he would be able to go on ECMO if he needed to.

Today I am angry. I am angry that I have not been able to watch MJ grow up for the past year. I am angry that I was not able to celebrate his first birthday with him. I am so, so sad. I don't know how I am going to endure the next 34 days. It's a crazy feeling and an indescribable thought, knowing that one year ago my son was alive and fighting for his life, and this year today I have to look back and know what was ahead.

I am grumpy and irritable, and I sure as hell don't want to be at work. But this is the busiest time of the year for us (I am in college recruitment) and so I have to endure. I have to live and I have to move on. I don't want to and sometimes I don't know how I am going to.

I don't have a picture of MJ from when he was two days old. When he took a turn for the worse, he was moved into an isolation room in hopes that the noise and lights from the other babies around him would help, so the room was always as dark as it could be and we could only whisper when we were with him. I wish I would have snuck one anyway, I wish that I had a picture of him from each and every day that he was alive.

Another Nightmare Coming True

Today I realized why this past week has been so incredibly hard for me. When I was pregnant and I would think of the possibility that MJ would not make it, I would always wonder I could ever possibly celebrate Will's birthday without MJ. At the time, that was the worst thing for me, probably because I never actually thought that MJ would not survive. I always thought he would be a survivor. I always thought that my son would beat the odds and come home with us. I always imagined two high chairs and two babies covered in birthday cake. When I was pregnant my biggest nightmare was celebrating my twins' birthday with only one of them.

And now its coming true this weekend. 

I keep telling myself to be happy and that we have to make Sunday all about Will. July 25 is Will's Day and August 29 (the day we lost MJ) is MJ's Day. But it is just so hard. Everyone always says that the anticipation is always harder then the actual day, and I really hope that it is the case on Sunday. I hope that I can smile and laugh and celebrate the life that God has allowed me watch grow up. I know that my heart will be heavy and MJ will be on my mind. But I really hope that I can give happiness to the son that is in my arms.

July 25

Three days from now we will have a first birthday party for Will. Three days from now, one year ago I gave birth to two baby boys, Will and MJ. But we only celebrate one of their birthdays. July 25 of each and every year has to be a celebration, and it has to be about Will and only Will. We have to celebrate the life that God has allowed us to see each and every day. And that really just breaks my hearts a little.

I don't really want to celebrate just one of my son's lives. But that is how is has to be. We cannot be sad and cry (although I know I will want to, and I just might) on their birthday. That day has to always be about Will.

But I don't know if I can do it. The days leading up to this Sunday are getting harder, I find myself wanting to cry a little more each day. The tears and the sobs are getting stronger. I try not to really think about it, but it almost seems as though my body knows how sad my heart is, even though my mind tries to veer away from the heartache. The littlest things bring the tears these days. The grief is just all coming back.

It's just not fair. There is really no other way to put it, but it's simply not fair. It's hard, truly hard to know that there is still so much life to live without MJ. Sometimes the thought of it is just so incredibly overwhelming. To know that each and every day is yet another day I have to live without my son. But then again, each and every day is one day closer to when I can see him again.

This weekend is going to be hard, the 35 days after that are going to be hard, knowing that at that time last year, MJ was alive and fighting, and enduring so incredibly much.

Sometimes I just want to shout out to people I AM A MOTHER OF TWINS, MY SON LIVED, HE LIVED, AND HE FOUGHT SO HARD TO LIVE! But some people don't care, and that hurts so much.

For some reason this morning I was think a lot about two family members who choose not to acknowledge MJ. They didn't come to his funeral, they didn't call, and it really just feels like they don't care. And because of what they choose, they will never know Will either. That is a decision that Willie and I made, and I am very glad that we did. But it hurts, it hurts to know that they think of us as a family of three, that they think we only have one son. We are a family of four, and we have two sons. The rest of our lives, no matter how many children we have, MJ will always be included. Any family or friends that choose not to acknowledge both of our sons just can't be apart of our life. Its very plain and simple to us. But it still hurts. But that is our life, forever we will miss MJ, but he will forever be apart of our life.

A Time to Grieve

Ecclesiates 3:1, 4
To everything there is a season, and a time to every purpose under the Heaven . .  a time to weep and a time to laugh; a time to mourn and a time to dance

Recently I came aross the book, "When the Will of God is a Bitter Cup" by Dr. Don Woodard. (Thank you Desiree for recommending it!) I put it down a few weeks ago and decided this morning to pick it back up again. I think that I get the most of out a book the second time I read it, especially one on grief.

These past 11 months or so of my life have been filled with weeping and mourning and grieving. I finally feel as thought I am ready to laugh and ready to dance. Ready to enjoy life again. And it's okay to be happy. It's okay to smile and laugh and dance again. And I have to be able to do those things. I cannot miss out on watching Will grow up.

But sometimes I struggle with this. I struggle to know when the time is right to laugh and when the time is right to grieve. Somedays I can be okay and know that it really is okay to be happy. And then the sadness hits me out of nowhere, like when we were getting Will's one year pictures taken two days ago. It hit me when we were reviewing the photos and I thought, wow there should be two this cute. Or today when we were at the grocery store and Will was being fussy so I was carrying him on hip. We ran to the next aisle and got an economy size thing of toilet paper. I had Will on one hip and the toilet paper on the other hip, and I wondered what it would be like to have two babies on my hip. So many little things like that just hit me and then the waves of grief surround me.

So when is the time right to mourn? Or dance? Or weep? Or laugh? I don't think I will ever stop grieving. But I do think that the moments of weeping will be fewer and further in between, and  the moments of laughter and dancing will be longer and my happiness will come back.

Grief Changes You

Today we went to Children's Mercy Hospital to attend a Living with Grief Support Group meeting. It was so nice to be there, especially so close to the boys' birthday. It really is an incredible feeling to be with people who just 'get it'. To be able to talk about MJ and hear their children's story's, and then talk about the day to day struggles that have rocked my world the past year. It's a feeling that I can't really describe, being in a room ful of people that have had to say goodbye to their children incredibly too soon.

Maybe it's being back at the hospital that MJ lived and died, or maybe its going through those emotions and thoughts all over again, or maybe it's just that we are so close to their first birthday, but the whole day today has just been a little harder. The tears come just that much easier and the motivation to do what needs to be done is entirely gone. Today is a down day in this rollercoaster of grief. I suspect there are going to be many down days in the next few weeks as we go through our sons' birthdays and MJ's death day.

Maybe I am too hard on myself and should just live in the moment. But I want to be in a place in my grief where I will feel okay. Not quite good yet, but okay is what I am looking for. Most days are okay, but those days are coming fewer and further between.

It's strange, really. The first months after losing MJ I had no yearnings for feelings other then devastation. And then I started having good days, and the guilt swept in: guild that I could actually live and be happy without my son. And then I started having more good days then bad, and really wanted those good days. The past few days have been pretty hard, and it seems like they will get harder before they will get better. Grief really is a rollercoaster of ups and downs and everything in between.

And it changed me, it changed everything I knew and everything I thought I knew. I realized today how comforting it is to be around people who have walked in your shoes, and know what it feels like to lose a child. I haven't felt that comfortable in a room full of people in over a year. Sometimes I feel like I am more comfortable in tragedy then in joy. But don't misunderstand me, there was joy today, we laughed and we remembered our babies, and it was a comforting few hours. We all understood what its like to live your live with a broken heart.

While we were there we donated two memory boxes, one girl and one boy. We are planning on donating 35 at the end of August, one for each day that we were blessed with MJ's life. We wanted to bring two today to make sure that everything in them was okay to include. And everyone there just loved them. It was a good feeling, knowing that we can offer a little bit of comfort during such an incredibly hard time. Here are a few pictures of the memory boxes. They include in them a baby blanket, broken heart pendant with a poem, a wisp of hair bag with a poem, a disposable camera in case the parents don't have one, a baby cap, a stuffed animal, and a picture frame with a little baby angel on it.