Actually it's both a sad story, but in the end an inspirational and uplifting one as well. It's a story about a father. His child didn't have Moebius Syndrome; instead, she had Down Syndrome. And it was tough on him. It made him depressed. He didn't think he could handle it all. He thought of suicide; he contemplated just getting up and leaving his wife and daughter.
Tough stuff. But hey, let's be real. I've got to believe that there have been parents of Moebius children who have had a hard time coping; who have at some point privately said "why us? why my child?" Who have at some point wanted to bail. My wife and I have two small children--neither of whom have Moebius--and at times we're so exhausted we can hardly stand it. I can only imagine then how it can be for parents of a special-needs child. It can be hard. And it's okay to acknowledge this.
But in the end, the key is this--this guy (his name is Jack Barr, Jr.) stuck with it. He stayed. And now of course he's glad he did, and his daughter is an inspiration. Those of us connected to Moebius aren't surprised. Life is precious. Here's his story, and see how much of it with which you can identify:
The day my daughter Marley was born, I went straight to the nursery and held her for well over two hours. I just held her and cried because I had never experienced such a love for anyone or anything in my life.
I think the nurses thought I was crazy because eventually they told me I needed to go be with my wife. Three days later, before we left the hospital, the pediatric doctor told us she thought Marley might have Down syndrome.
My reaction: Are you freaking kidding me?
I immediately had a panic attack and was taken to the emergency room. Thoughts were racing through my mind: How could my perfect daughter have Down syndrome? How could they not know for sure? How could the general ultrasound, which said we had a 1-in-18,000 chance of having a child with Down syndrome, be wrong? Why was God punishing me? How could I live with a daughter that was going to be rejected by everyone ... including myself?
I entered into a deep depression for the first year of Marley's life. My wife became concerned about me, so I started taking antidepressants and seeing a counselor. I contemplated leaving my wife, or giving my daughter up for adoption, and suicide.
I would lie awake at night thinking about my future, and searching for a reason to live. I believed all the negative things the world told me about Down syndrome, and viewed it as a curse on my family. The entire time, I couldn't stop thinking about how this would change my life!
But the truth is, I felt badly about myself. At one point, I wrote a letter to myself asking why things had to be this way. I prayed for God to take my worthless life in exchange for removing Marley's extra chromosome. I would even quietly lie awake at night contemplating how I would feel if she suddenly stopped breathing while she slept. Finally, one Saturday morning, when Marley was about 2 months old, I got up and told my wife I was going for a walk.
I had no intention of coming back. I was going to leave my wife and daughter.
I couldn't do it anymore. But then, after I left, I started having second thoughts, and that's when I remembered that my wife had signed up for an online support group. I ended up spending the next two hours talking on the phone about my daughter and family with a man I had never met. He had a 2-year-old with Down syndrome.
I cannot explain it, but after talking to him for two hours I had the strength to go home and face another day. For the next six months, I got up and faced one day at a time.
Years ago, my father said to me, "If you want to fix a problem, then do something about it."
I followed his advice. First, I tried to gain as much knowledge as I could about raising a child with Down syndrome. Next, I started calling every family I could find that had a child with Down syndrome. I owe a great deal to these families because they were willing to talk to me despite the 12-hour time difference between Bangkok and the States.
I also started forcing myself to interact with my daughter. She was desperate for me to start loving her, and she continued loving me until I broke down and did the same. I was scared to accept my daughter because that would mean accepting her disability. But the reality was the only thing keeping me from loving my daughter was my own ignorance.
Once I overcame my own selfish expectations for my daughter, I slowly began to see the beautiful girl that would change my life forever.
And finally, I talked to God. I talked to Him just like He was sitting in a chair beside me because that was the true barrier in my life. I was honest with God throughout the entire process, and that is when I started finding peace.
Healing is a process and a journey. I would have never experienced this life-changing transformation if Marley had not been born.
It is true, there are difficult times having a daughter with Down syndrome. But it also true that she is very much like any other child. Marley smiles, laughs, plays, is able to meet many developmental milestones (albeit her own pace, with her own style), makes mistakes, and, most importantly, completes our family.
She literally brightens my day every time I see her. She's now 2 years old, and at this age all children develop at different rates. Marley can walk; swim; sign and speak words; throw and kick a ball; follow simple directions and throw tantrums. She also knows how to manipulate her grandparents.
But she has not learned how to run or jump. She is taking thyroid medication and has a small heart defect.
The key is, she is very similar to most toddlers her age and every child with Down syndrome is different just like every child is different.
Before our summer break, she passed an entrance exam to start at a British preschool in September with her peers who are not labeled as "special-needs children." In my opinion, these limitations we put on children with Down syndrome are outdated and lead to a lack of acceptance in our society.
The medical community focuses on so many of the challenges associated with Down syndrome that we develop an unnecessary fear -- but these are only differences. The truth is, I am a better person today because of my daughter, my daughter who has Down syndrome. I am thankful for a wife that was willing to push me to change, and support me when I struggled.
Mostly, I thank God for Marley. I remember praying while waiting those first two weeks to get her confirmed diagnosis: "God, if you heal my daughter, then I will give up my own salvation."
God didn't need my salvation -- that was a gift from him to me, just like Marley is a gift to us.
The reality is that I am still saddened that Marley has Down syndrome, but I am beginning to realize that God can bless us regardless of our circumstances. I will never be able to fully understand why Marley has Down syndrome, but I do know she has made a difference in my life, my wife's life, and in the lives of so many in our community.
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"Hold your head up high."--M. Cyrus, "The Climb"
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