My Son-The 12th Man Finding out your child has a disability changes your life, your perspective, the future, and just about everything else. Our little family is made up of me, my wife, Jessie, our ten year old daughter, Acashia, and six year old son, Stage. Acashia like her mother has a knack for creativity and is a bit on the impulsive side. Stage is my man! He’s like me-laid back and easy to please. Stage is also diagnosed with a mitochondrial disorder. It impacts his health, development, and overall quality of life. Mitochondrial disorders vary and they impact everyone differently. I’m still not sure we have a full grasp of all that it includes and in many ways it’s still a mystery to us. We didn’t even get a formal diagnosis until just a couple years ago. It all happened so fast. We went from having a healthy baby to just a few weeks later going through endless tests and hospital stays. New words were added to our vocabulary, like, failure to thrive, intractable epilepsy, developmental delay, feeding tubes, and a whole slew of others. In times like these, your life changes. You go from thinking you know what to expect in life to all of a sudden being thrown into a new world without a map. Your life feels like it stops, but it really doesn’t. Bills are due, work still calls and the needs of your other children still exist. My wife and I partnered up pretty well. She took the lead in all of Stage’s advocacy, health care and research. I went to work and exhausted myself keeping our family together and assuring my wife that it would be okay. I held her during her times of emotional breakdown-she really cried enough for the both of us. It killed me to not be able to put our life back to how it was, to see her take on all that grief. At times it felt like the sadness could tear us apart, but it really became the glue that held us together. It’s easy to ramble off all the things Stage can’t do: walk, crawl, feed himself, dress himself, and the list goes on and on. He pretty much depends on us for every aspect of his daily living and survival. When I sit back and think of all he can’t do it really tugs at the heart. I wanted a son I could teach to play sports, watch football together, and root for the Seahawks on Sundays. The list is pretty long of all the things I feel I have come to miss out on with my son. However, you can’t live life that way, otherwise it would be a real drag. So I’ve found a different kind of perfect relationship between son and father. I tickle him until he snorts, throwing him in the air and catching him with the squeals of delight enough to fill any cracks in my heart. We cuddle on football Sundays and sometimes when the Hawks make a score and I yell loud enough and look at my boy, he’s smiling too. My son is the 12th man in his own special way. He isn’t the son I thought I would have, but he’s the son that I needed. written by Jeff Atkins (Stages Dad)
Posted on: Thu, 05 Dec 2013 05:03:41 +0000
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