Written by Juan – Peanut’s Daddy
Lately their has been a lot of talk about Iceland due to a recent report by CBS. The CBS article addressed how Iceland is trying to eradicate Down Syndrome completely. Iceland’s stance is that all women should be made aware of the possibility of their child being born with Down Syndrome via screening. Since the screening was introduced in 2000 nearly 100 percent of women who receive a positive diagnosis have chosen to terminate their pregnancy.
Although we are talking about Down Syndrome, the underlying question we must address is the value of life.
I remember shortly after my wife and I adopted our daughter I was asked by a Dr. “If her mother knew that she had down syndrome, why not just terminate the pregnancy instead of putting her up for adoption?” I can honestly say that I had to walk away because I was afraid of how I would respond. This question also made me stop and think. We brought Jana into our home at 1 month old, tiny (since the name Peanut), cute as can be and full of life. Jana’s first year of life was very eventful. She required medical treatment outside of our county (2 hours away) and initially we had appointments several times per week. Jana had appointments at the Down Syndrome Clinic along with several follow up appointments with ENT, Cardiology, Pulmonology, Pediatric Specialist, Blood Screenings, and a few hospitalizations due to respiratory and low Oxygen concerns. In order to attend all of her appointments (which I insisted) I had to file for FMLA coverage. I very quickly used up my 160 hours of vacation time I had accumulated and we accumulated over $4,000 in debt due to travel, hotel stays, specialized testing (still waiting reimbursement). I don’t say this for attention, but for understanding. Although my wife and I focused on her well being, others were not able to see past the hardship. At times we would only sleep 2 to 4 hours per night due to her sleep apnea, taking shifts as needed and pulling all nighters on weekends. We were afraid to talk to friends and family at times because we were afraid that people would judge Jana, or feel like we did the wrong thing by taking her in. We spent as much time with our other biological children (Joey, Mason, Jaylen) keeping them informed of her status, pending tests and upcoming medical procedures in order to address their concerns for their sister and our family.
I’m not going to lie, it was hard. Being away from our other kids at times for days, nights, weeks, lack of sleep, minimal time with my wife, financial stress and being helpless to help our daughter at times. Through all of this, not once was the value of Jana’s life questioned. Their were no regrets about her adoption. From the moment that she was placed in my arms by the social worker we bonded and a life long connection was formed. What I came to realize though was that others were not able to see past her diagnosis, past her appointments, past the zombie like appearance we sometimes reflected due to lack of sleep. They looked at us with pity and at times questioned our decision.
At that time Jen and I made a decision, to share our experience with others. Jana’s blog was created and we began to post as many pictures of her as possible. Initially we were unable to post anything due to her “foster” status but we walked the line as much as possible. We wanted to introduce our friends, family and the world to the Jana that we instantly fell in love with. We wanted to help others to see past her diagnosis, and fall in love with the same “Peanut” that we fell in love with instantly. We wanted them to see her smile which brightened our day, hear her laugh which instantly made us smile, see her progress (even if minimal) and share in our pride for her hard work and accomplishments. We posted as many pictures and videos as possible in order to introduce the world to “Peanut”.
In fact, just this past week Peanut found fame, with some of her video’s being posted by several sights and views quickly climbing above 1 million, 2 million and now somewhere above 5 million. With those views came many comments of support and encouragement and of course discouragement and questions of the value of her life. If you know us personally you know how protective I was (AM) of my peanut. My initial desire was to respond out of emotion but as I read the comments I was saddened. Not because of what was being said but because of how much these people were missing out on. You see, they did not know my Peanut. They questioned her progress, “She’s taking a few steps using a walker, big deal” not knowing that these simple steps were a result of months of hard work and support from others who love our JANA as well (PT, in home therapy etc). I felt bad for those that were so shallow that they were unable to see past her diagnosis, were unable to see her beauty and share in her love. And then something happened. Some of our online friends began to reply “Hey, that’s Peanut”, “That’s Peanut and she’s made so much progress”, “That’s peanut and you need to read her story on her blog”. Others began to step up and defend my daughter, because they had also invested their time in her and had fallen in Love with who she is.
In her short life (2 years) peanut has changed our life for the better. She has brought our family closer. She has taught us about overcoming adversity, working hard to achieve small steps (literally). She exposed us to an amazing community of support online, provided us with the opportunity to meet some amazing families and loving children. We have shared our story with others, prayed for families we have never met and cried for families we may never meet. All this was possible for one reason. Jana’s biological mother saw past her diagnosis and found Value in her life. Although she was aware that she would be unable to address her medical needs she made the selfless decision to place her daughter up for adoption and not terminate her pregnancy.
Choosing life not only changed our life for the better it has also allowed Jana to impact the life of others worldwide through her smile and her laugh. In her short time here she has helped us gain a better understanding of the value of life. What Iceland is failing to recognize is that that they are not just eradicating Down Syndrome in their country. They are killing a beautiful life who may happen to be born with Down Syndrome. You cannot debate the potential of that life when you never give him/her the opportunity to live. In her short life Jana has taught us so much more about “abilities” despite being labeled with a “disability”.