A Life That’s Not Fair

August 19, 2015
He would be starting first grade this year. I’d know what superhero he’d love and if he liked t-ball and soccer as much as his twin brother.
In just a few short days it will be six years since I held him for the very first and very last time. His death was peaceful, and for that I am thankful. But no matter what way you look at it, his death shook me to the core.
When you live a life that’s not fair there are always more questions than answers. Did we make the right decision by taking him off of life support? Would a different surgery have made a difference? A different hospital? And perhaps the biggest question of them all: What would he be like today?
I’ll never know what it would be like to cheer his name at a soccer game, or hear him learn to read. I’ll never roll my eyes when someone asks for the millionth time, “Are they twins?” I’ll never get mad when friends can’t tell my identical twins apart. Because that’s what happens when you live a life that’s not fair.
The seasons of grief come at different times in different waves. I remember feeling so peaceful at this time last year. Reliving his 35 days of life over in my head brought good memories. This year I relive those 35 days and I feel full of anger. I’m angry that we were so naïve and never thought he would die. I feel like we should have prepared ourselves better for that possibility because then we never would have left the NICU. Instead we prepared ourselves for the long NICU stay the doctors were preparing us for. We expected his first 6-12 months of life to be in the NICU. So we were trying to figure out how we would manage emotionally, and financially. We drifted between the hospital parent room, the Ronald McDonald House, hotels, and our home an hour away from the hospital for five weeks. All while learning to be new parents to his healthy twin brother. Looking back all I wish we would have done was never leave.
After the anger comes the sadness. These past few weeks have been especially hard as we prepare to send only one son off to first grade when we always thought there would be two.
This year my emotions are all over the place. The littlest mention of something that someone may think it insignificant can change my whole day. For example, recently a friend offered her ear if I needed to talk because she knew this was a rough time of year for me. I don’t remember the last time someone offered that to me. It’s just assumed that since it has been six years I don’t need that anymore. I’ll always need it. I’ll always grieve my son. I’ll never really be okay this time of year.
He died the day after my birthday. I remember walking into his room the day I turned 25 and thought that I would never really be able to celebrate my birthday because we knew he would die. I prayed and hoped he would live another day and he did. But his death was imminent. And to this day the flashbacks of his death begin with my birthday.
It’s not fair that he died. It’s not fair that we have to live without our son. It’s not fair our children

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understand what death means at such a young age. The life we live is not fair.

The grief changes as does the seasons. I thought the anger stage was long gone. It is not. I wonder a complete family picture would look like. I can picture our twin boys with our younger daughters, but I’ll never truly know what it would be. I have to settle for a picture our missing son.
And like so many other things in my life since he died, I have to figure out how to accept it. I’d give anything to go back in time and have one more moment with him. This six year anniversary of his death has hit me harder than I thought, just like so many other things in this journey of grief.



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