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.

Happy Birthday to both of My Boys!

One year ago today I gave birth to two of the most precious things I have ever laid eyes one. William Glen Skaggs IV was born at 3:26 am and Michael Joseph Skaggs was born at 3:27 am.  I never thought I would have to celebrate their birthday without MJ, but I do and I am. We are having a small party for Will, and keepings things very light and easy. I feel as though at the moment I am seperating my emotions from the day. I can be and I am happy to see Will turn one. But my heart lies with MJ and the devastation of losing him.

I miss MJ so much, and I want him back so bad. Yesterday we spent the day making items for our gift bags for MJ's Memories, our project through Project Sweet Peas that we deliver care packages to families that have a baby in the NICU. We made baby eye masks, isolette name plaques, baby girl hair bows, and memory boxes for families that lose their babies. My mom said it best when she said that we should have been playing with two baby boys yesterday, but since we can't, we can do these things in MJ's name, and keep his memory and life alive. (I'll post some pictures later.)

Today is not has hard as I thought it would be, at least not now. I don't know what the party or tonight will bring.

I will never understand the path that God has chosen for us this side of Heaven, but the one thing that I can do is allow Him to lead us in this crazy thing called grief.

To my sweet, sweet Will: You have brought an incredible amount of smiles into our life the past year, and I don't know where I would be without you. Thank you for being such an incredible son and for brightening so many dark days. I love and appreciate you more then you will ever know.

To my angel MJ: Thank you for blessing us with your life for 35 precious days. There is nothing I want more in life then to be able to watch you grow up. You have changed my entire life and way of being. You have made me a better person and a better mother to your twin brother. I am better for knowing you. I love you with everything that I have.