It was less than a year prior to finding out we were pregnant with KC when I was diagnosed with Parkinson’s Disease. Although I was still recovering from the tailspin of the diagnosis, the motivating factor of a new life added to the love I already had for our other kids helped me focus on getting a handle on controlling the early challenges of PD. The older kids jumped onboard acquiring new knowledge of the disease and daily skills to help me maneuver through the new PD obstacle course and KC has grown up never knowing what Dad was like without freezing gait, tremors, muscle cramping, and bad balance days. Don’t get me wrong…it wasn’t and isn’t always easy for anyone and the road has been rough at times as the whole family has had to be patient and forgiving of me.
Several years go by and everyone grows up and/or older. I never will stop being amazed how quickly the kids mature and become pure gifts of human beings. Parkinson’s has become just as much a part of Alli and the kid’s lives as it is mine. If I freeze in a doorway the hand of any age kid may be the one to touch my shoulder to help me unfreeze. Often I’m not aware of a hand tremor until little KC reaches across the table and grabs mine. A bout of dyskinesia while at the mall may prompt any of the teens to join in “dancing” with me. And then there is my wife, who knows me and my PD so well she can predict a “bad” day for me and have a cane in the car even before I would think…or admit…to needing it.
I am one hell of a lucky (blessed) “Parky!” I have a wonderful family to make this journey with me. However, I still often lay awake at night feeling guilty they all have to carry a part of this burden. As of now, PD is not a disease that I can go through treatments and find remission on the other side. Until a cure is found it will progress and always be with us. It’s not something I can battle and free my family from…for now. The fear of progression to a point of needing full time care is always with me and I cringe at the thought of my wife and kids having to see and deal with that.
So, when Alli first mentioned the desire to have another baby my first internal reaction was. “no way in hell am I going to do this to another!” Honestly, I think my thought process went a couple of ways including the selfish path of wondering how long would I really get to spend with a new child. PD is not necessarily a death sentence, but the progression of symptoms can cause many complications that can play a large supporting role in death or just the simple fact of no longer being able to fully support my family the way I want. But, I, and we, also choose not to let PD stop us from living our life to the fullest. Sometimes we have to take a different path to get there, but PD always just joins in on the adventure. KC has never known any different in her dad. And, she seems to be quite smitten with me. Anyway…yeah, yeah, yeah….KC, Aria, Amanda, and Evan are all cool with PD so why not have another baby! ????? No. The eventual resolve and support to do this really had little to do with how much the kids are great with my and PD and more about my wife wanting to live a life with me as her husband and build a family based on where we are today and not on the possibility of tomorrow. She has reaffirmed in me that no matter what challenges we carry with us tomorrow is never guaranteed. We cherish and grow from the past, work, love and live hard for today, and hope, dream and build for tomorrow. Another baby is our affirmation for the future based on the love our family has now. That love is greater than any disease and will out live me and everyone else.
So we all, Alli, me, kids…and PD, anxiously await our new baby boy to join our adventure…
-life as eric