Six Years

The day Kevin was born, six years ago today, was joyous, scary, and surreal. A culmination of months of planning, hoping, wishing, and praying that he would make it to term. He was pink and screaming and I was able to see him briefly before he was taken to intensive care. We were told, within hours, that in addition to the heart defects that were discovered before he was born, there was an additional problem with his aorta that would need surgery the next morning. At less that one day old, Kevin was taken into surgery to repair his aorta and have a pacemaker implanted.

The weeks ahead were a test of love, strength, and perseverance. Kevin was close to death and short of a heart transplant there was little hope that he would survive. We made the decision to pack as much love into what time was left as possible. I sat at his bedside stroking his baby soft skin, yellow from liver failure. I told him how much we loved him and how much he was wanted. We read him books, told him stories, and tried to will him to keep fighting.

At sixteen days old he underwent open heart surgery in an attempt to improve his heart function. There was little hope that the procedure would save his life, but rather improve his heart function enough that we could buy some time for a transplant. When his surgeon came back after six grueling hours, and told us that so far his heart function was great and that the surgery was more successful than they could have ever hoped for, we were in shock. Disbelief. Afraid to believe what we were hearing.

I knew, deep down, that I would likely outlive Kevin. It is a heartbreaking realization that your child will probably die before you. I also knew that if we were going to make his life as happy, love filled, and joyous as possible, I would have to tuck that realization away. Put it where he would never see it, and live life like we did not have a care in the world. Because despite his medical issues, Kevin did not have a care in the world. Not one.

I won't pretend that I was always successful at not worrying about the future. About how, if Kevin died, we would be absolutely devastated. I poured over medical literature trying to figure out if we were doing the best for him, making sure that we were up to date on any new procedure that could potentially help him. I did my best to save my weak moments for when he was asleep, and I was alone.

The feeling that you are on borrowed time is a strong one. And as horrible as it is knowing that your child has a potentially fatal set of conditions, it forced me to see life for what it is. To treasure muddy feet, popsicle stained clothes, and marker on the sofa. My job was to make his life, however long, as happy as possible. And really, that is my job for all of my kids. Again, I am not always successful at this.  My children know that I am flawed, we all are. They also know that despite my flaws I love them with my whole self and will stop at nothing to love, protect, and guide them through life. I learned a lot from my little guy that was only here for two short years. He taught me what no one else could. And for that I will be eternally grateful.

The two birthdays that we were able to celebrate with Kevin were emotional, happy, and full of joy. I would watch him opening up gifts or eating birthday cake and remember that tiny sick baby that no one thought would make it out of the hospital. He was a fighter, not the loud aggressive kind, but the quiet, strong, courageous, persevering kind that we should all aspire to be.

When I think of what six-year-old Kevin would be like, I can't help but smile. I imagine him trying to beat his dad at chess, wanting to do science experiments at the kitchen table, and bugging his older sister. He would still be tall and skinny, with huge blue eyes, and a goofy grin. I can not even put in to words how much I miss him. Our hearts are still broken. It is still hard to breathe sometimes when I think about him being gone. Everyone who knew Kevin suffered a huge loss the day he died. But, as much as his loss devastated all of us, I cannot let it outshine the joy, happiness, courage, and unconditional love that he showed us everyday.

Happy Birthday, my sweet boy.