- Posted June 17, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Sibling and a Father to An Individual with Special Needs
- Jareen, CNN iReport producer
As a young adult, the prospect of getting married and starting my own family filled me with trepidation. Part of that was the thought of having my own child with special needs. I just didn't know if I had the strength that I had seen it demanded from my mother, my father and all my siblings.
In the 1980s as all of the siblings grew up and left the home, but my mind naturally worried about my mother and father aging, not in perfect health and left to care for Paul. The situation got critical when my Dad had a stroke in December of 1993. My mother was now a caregiver to two adults with very different diagnoses, but somewhat similar needs.
I cut my schooling short, I was at Cornell University in Ithaca at the time, by finishing up my Master's degree and moving back to Olympia. I had a vague notion of "helping out" my mother in the fall of 1997 as I moved back into my parent's basement at the age of 29.
That situation didn't last very long when I was hired by a still small but growing software company called Microsoft in March of 1998. I moved to Redmond, Washington. Although 78 miles away, I commuted home on weekends, by bus, to be with my mother, my father, a stroke survivor, and my brother, a 39-year old adult with Down Syndrome.
In 2001 I met my wife, Jolena, and we married in 2002. My earlier worries were squelched by love and a desire to start my own family. Our daughter Johanna was born in 2004 and our son Benjamin in 2006.
From the very beginning, Johanna did not have it easy. We were in the hospital within days of birth ruling out a gastrointestinal obstruction that might explain her reflux. We were given some tips on how to manage it. However, rotavirus put us back in the hospital and poor Johanna had another diagnosis: failure to thrive. When I think back on those days, the intervening years dull somewhat the scrambling powerlessness that any parent feels when their child has to undergo medical treatment.
Our uncertainty about Johanna's prognosis, i.e. missing milestones, reflux, lack of weight gain, lasted almost a year. My wife had heard about a program for dads, called the Washington State Fathers Network, but I was in denial. The male-pattern denial keeps us from reaching out for help to "solve the problems" that life sends our way.
The day we went to genetic counseling and were told definitively that Johanna had Angelman Syndrome is as clear in my mind as if it was yesterday. It explained so much that we had been reading about that and similar diagnoses that our pediatrician had suspected. I was more relieved than shocked, more empowered than angry. Not to say that emotion did not surface periodically as we went again through a grieving process.
Since we finally had a diagnosis, I agreed to finally attend a meeting of the Washington State Fathers Network in Bellevue, WA, where we lived at the time. A support group of sorts, but also a safe place to share the milestones and frustrations that few of our friends with typical syndrome children could identify with. For example not many dads give each other high fives when their kids are seizure free for months at a time, or when their 5-6-7-8 year-old has a dry diaper over night. Those men, and their support, encouragement, brainstorming and righteous indignation at a society that does not have much patience with the special in their midst, they were a lifeline for me at the time. But more than that, they are heroes. Following the lead of other admirable dads in that group, I have left Microsoft to start a career that would be more compatible with my family’s needs. I have moved from the area, but yearn to start a similar group in our new location. Dads need support too!
When I look at my daughter Johanna Rose, I see a different person than my brother, of course. However, I see similar challenges that I am familiar with and which used to paralyze me, however I also see limitless potential, and a chance to give back. For the world my brother grew up in was much different than the world my daughter is growing up in, in some ways better, in some ways more receptive, thanks to the tireless advocacy of many over the intervening years. I yearn to preserve those hard-fought rights, and push the envelope, for I am special too, I am a sibling and a father of two amazing people.
NOTE: My brother Paul died close to his 50th birthday in 2009. The director of the Washington State Fathers Network and many friends attended a celebration of his life. His torch has passed to my daughter to forge her way and help more of us realize what is really important in life.
- My life