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    Posted June 17, 2014 by
    johnweis
    Location
    Pasco, Washington
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Sibling and a Father to An Individual with Special Needs

     

    CNN PRODUCER NOTE     Growing up, John Weisenfeld had an older brother who had special needs. His brother Paul died from complications from pneumonia just shy of turning 50 years old. Now, Weisenfeld and his wife are raising their daughter Johanna who has Angelman Syndrome, a genetic disorder that causes developmental disabilities and neurological problems. They first noticed something was wrong with their daughter when she was just two days old. While in the neonatal intensive care unit, Johanna had reflux, and was unable to nurse or sleep properly. During those early days, Weisenfeld had feelings of denial that something was wrong with his daughter.

    Johanna is now 10 years old and goes to elementary school in Pasco, Washington. She is nonverbal and a bit shaky on her feet. She has a delayed reaction time, but loves riding her specialized bike. Weisenfeld and his wife had a fundraiser in order to purchase it for her.

    Despite setbacks and difficulties, he says the most important thing for Johanna is progress. “We sometimes get discouraged when the pace of progress is slow or barely noticeable, but sometimes she surprises,” he said. "I often relate the story of when she came into the kitchen, found a glass, turned on the sink, got some water, drank the water, turned off the tap, and put the glass down. I don’t know if she saw me or not, or if that even mattered, but I was so impressed.”

    Through his experiences of raising his daughter, Weisenfeld has discovered several things about himself and other people. "I have learned I am not as patient as I thought I was,” he said. “And how many people are kind and helpful to Johanna, or to Paul for instance when we are not around, and do it for that unqualified, unstrained goodness, not for reward or praise, or recognition, but simply because.”

    Weisenfeld says he’s noticed that the number of people giving birth to children with Down Syndrome is going down, and although he doesn’t know if that is attributed to more in vitro testing and early terminations, he says he cannot imagine a life without Johanna. “Tests can be wrong. Expectations can be exceeded. Who are we to decide what a successful life looks like?” he asked.

    “Treasure each day, each moment, and they soon fly away."
    - Jareen, CNN iReport producer

    When I was born, in 1968, I joined a family of two boys, Paul, age 9 and Mark, age 6. My sister joined us in 1971 and that completed our family. I have no recollection of the Willowbrook story that Geraldo Rivera broke in 1972. I didn’t know then, and I have never thought of how many children with Down Syndrome like my brother Paul were "sent away". Paul was always part of our family, the oldest, although not always getting the respect he deserved from his primogeniture. I can remember races with all my siblings to put our shoes on, but the winner not only had to put his own shoes on, but also those of our brother Paul, who was never able to do that himself.

    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.

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