It was heartfelt, very honest and very raw, and I was teary-eyed by the time I was done reading it.
For some reason, I felt compelled to share this here. Probably for me to look back here and see that as a parent, it's ok to have fears and it's ok to wish for a normal child and feel dismayed if my child doesn't turn out the way we want him/her to be. Probably, too, for me to see that no matter what happens, after all the negative feelings of unacceptance, anger and disappointment, no parent will ever not love his/her own flesh and blood. Finally, probably for for me to realise that God is there every step of the way with us - a child is His precious gift to us, will He not love and protect the child more than we can and ever will?
Coincidentally, I just had my Down syndrome test done at KKH early this week.
I was initially very reluctant to go for the test due to the cost, and because I strongly believed that my child would'nt have Down syndrome cos I'm still under 30 and I've read that the high-risk age starts from 35. But my gynae and KU encouraged me to go for the test so I made an appointment to do it.
The first few days after making the appointment, I was all nonchalant and telling KU, "the gynae wanted me to go for the test just to make money out of it and why waste that money? The result will surely be low-risk!" But in the weeks after that, for some reason, my attitude changed. I started worrying and doubting and praying hard every night that my baby would have a low risk of Down syndrome and that God would give me a normal, healthy baby.
So the test results are out. After doing the blood test, ultrasound scan, and taking into account my age, my baby has 1-in-5000+ chance of having Downs, which is considered low risk. I'm very thankful for this result, but I'm going to continue praying and pleading with God until the day my child is born.
Cos the wonderful (and extremely scary) thing is, though medicine and technology can detect and pinpoint abnomalities up to 90-something percent accuracy, God is in control of 100% of it, and we'll never know anything for sure until God decides to show it to us.
Dad's confession: I almost left my disabled daughter (by Jack Barr Jr.)
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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