May 17, 2013
Today marks three years since diagnosis day. Three years of uncontrollable laughter. Three years with tears of joy and sadness. Three years of sleepless nights waiting for machines to alarm. Three years of pain and suffering for my son. My innocent son.
I will never forget diagnosis day. Its a milestone in my son's life that I wish were never placed there...a day that forever changed my life, my sons life, and my family's lives. I never knew how much could be affected by one blood test.
Three years of being a parent to an SMA child changes you. Some ways, you become a stronger, more equipped parent...a parent who flourishes in the good and the bad. Some ways, you become weaker, less equipped to deal...a parent who has unshakable moments of weakness in the good and the bad. On the surface, I tend to put off an aura that would push most people to believe that I am the stronger more equipped parent. As much as I wish I could say that is the truth, I am not in any way stronger than before I had Zion, and before diagnosis three years ago. I am the same man, an enlightened man...a man who sees life through a different lens...my perspective has changed.
Today was rough. Work was work, and I was attempting to do anything but allow my mind to wander into the realm of reality. Work is my break from the real world...a world full of pain and hurt, a world full of happiness and joy...into a world where I can focus on my job and life outside the fence doesn't come into play. Its a break for my mind, my heart, and my soul...a much needed one at that. However, on a day like this...an anniversary I wish I never had to celebrate...it inevitably finds a way in. The threshold is crossed, and personal life is mixed with work and it affects me. My tough shell of fatherhood is compromised, and it leaks into the essence of my being in more ways than one. Luckily though, 6 pm found its way to me and I was outside the fence a free man...and along with that came relief from a mindset in the prison where emotion has to be void. After speaking to a friend of mine, I was encouraged in a way that I have yet to experience in my 3 years as an SMA Dad. I don't want to seem ungrateful, but there has yet to be someone who has offered me a piece of solace or advice that puts my heart at ease over having a son with SMA. There are no answers as to why...no peace of mind that comes with any words of encouragement that really sinks in and brings contentment and removes fear. Tonight, something struck inside me at the carefully chosen words, and while peace filled me eventually, first the fear, pain, and emotional baggage had to leave me. As I laid on the bathroom floor crying without end and physically sick to my stomach over the broken heart I found inside me, sadness was replaced with joy as I remembered a promise I made to myself long ago. I once committed to never spending a single second crying over something that I could not change, and that instead I would embrace SMA and my son, without exception. You see, I had an image of what it would be like to have a son...and Zion doesn't fit what my mind created before I was a father. However, with that said there is no void in who Zion is as a son...there is no such thing as missed track meets and basketball games...or even the most simplistic of things like his first steps or riding a bike without training wheels. Instead there are breathtaking events that I never dreamed possible....like teeball games with Optimist Miracle Movers, and running in his wheelchair with his cousins at Grammy's house...to taking steps with his therapist in his new braces, and seeing him smile from ear to ear while riding in his first bike. There is the key to happiness despite all the odds being stacked against you...looking not at how incredible the odds are that someone can't do certain things, but instead to focus on how good the odds are that they will succeed at other things you never imagined they would do. I don't feel bad that Zion can't walk on his own two feet because just like he will tell you, most people walk on their feet but not very many kids get to walk in a wheelchair.
Tonight I described myself to my friend as a broken individual as I went through this range of emotion. Broken is a harsh way to describe yourself, but looking at it now I see that instead of being broken I am simply repaired. Any part of me that was broken before November 9, 2008 was fixed as soon as Zion was brought into this world. I am forever thankful for the healing power his laughter has...the remedy that can be found by looking into his beautiful blue eyes as he smiles from ear to ear. His love repaired me. He gave me purpose. And tonight, I end my night not thinking of this as d-day, but instead as a day to be thankful for three more years I have gotten to spend with a living miracle.