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Raising Special Needs Kids Raising Special Needs Kids

Dad Who Wanted to Abandon Down Syndrome Baby Reminds Us No Child -- Or Parent -- Is Perfect

Posted by on Jun. 29, 2013 at 11:53 AM
  • 4 Replies

Dad Who Wanted to Abandon Down Syndrome Baby Reminds Us No Child -- Or Parent -- Is Perfect

by Kiri Blakeley

It's amazing that having children requires such an enormous commitment, and yet its outcome is relatively uncertain. Oh, you may think you know what you're going to get: I'm smart and my husband is handsome, so we are going to have a brilliant cutie! Or I'm ambitious and my husband can sing so we're going to have the next Kelly Clarkson! The truth is, you have zero idea what you're going to get for a child. You can certainly raise that child to the best of your ability and hope he or she doesn't turn out to be the class bully or the lifelong freeloader -- but you don't KNOW. That's especially true when a child is born with disabilities. No one plans to have a disabled or special needs child. Father Jack Barr certainly didn't plan on it. His daughter, Marley, was born with Down syndrome. Jack wrote an essay about how terribly difficult it was to learn to love Marley -- and how close he came to making some horrific choices.

After Jack and his wife were told that Marley may have Down syndrome, his first reaction was a panic attack. He thought, "How could my perfect daughter have Down syndrome?"

Because, of course, as parents we long for our children to be perfect ... but we also fantasize about that long before we have them. Our ideas about the child we have and the childhood they will have are filled with laugh-filled days by the pool and teaching them how to play a musical instrument -- not wondering how our child will ever live on their own or have any independence or support themselves or get married or have children or even be treated well by society, such as a child with a disability may have to go through.

Jack says he got so depressed about the situation that he contemplated not only killing himself, but fantasizing about Marley's death. He writes:

I would even quietly lie awake at night contemplating how I would feel if she suddenly stopped breathing while she slept.

He then went for a walk and thought very seriously about never coming back to his family -- leaving Marley and his wife to deal with everything while he skipped out on them.

Luckily, Jack got help. He joined a support group. He tracked down other parents of Down syndrome children and talked with them. He began studying Down syndrome. And he tapped into his spirituality, having a "talk" with God.

Mostly, he says, he learned to overcome his "selfish expectations" for his daughter. Because all along his disappointment was for himself, not for her. Now he says: "She literally brightens my day every time I see her."

This could be the template of acceptance that any parent needs to try and follow to learn how to love a child that isn't who was expected. One of the most difficult things in this world to do -- but one of the most beautiful -- is to learn to let go. To love someone for who they are, not who you want them to be. Fortunately, Jack learned that. Hopefully he will also forgive himself for how difficult it was for him and those awful thoughts he had. I know Marley would.

 How did you learn to cope?

by on Jun. 29, 2013 at 11:53 AM
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Replies (1-4):
bxmom2580
by on Jun. 29, 2013 at 12:36 PM
First, I will say this is an honest look into how alot of parents, especially men think about having a disabled child. Others are also consumed with not only great sadness and disappointment, but anger, disbelief, they may feel cheated by life,ect.

I have three diabled kids. I now live in poverty with them bc I had to give up everything to take care of and tend to their needs. I also have 0 family/friends support, other than my parents, who are elderly, who help me the best they can.

Copeing with 3 disabled kids is very very hard. I had to face alot of demons to get to were I am today. The road to copeing and acceptance is long and brutal.
jjamom
by Michele on Jun. 29, 2013 at 3:16 PM

We had no idea my son had Down syndrome until the night he was born.  I took it very well, because he was there and he was beautiful and perfect in my eyes.  My DH, however, took it pretty hard for a while.  I was actually really mad at him for a while because of how he was about it all.  But, I have since learned from talking to a lot of people, that many people go through a grieving process (grieving the child you thought you were going to have).  My DH came around and now loves our son so wholeheartedly.  I don't think he ever contemplated leaving us, but he did grieve that "perfect" son he had envisioned he would have.  He now realizes just how "perfect" he is and our family is happier and stronger to this day BECAUSE of our son.

mandee1503
by Amanda on Jun. 29, 2013 at 3:41 PM
Jacob doesn't have Down syndrome but his dx was a bit of a shock. It took me and my husband a long time to cope and come to terms with it. We still have bad days.
darbyakeep45
by Darby on Jun. 30, 2013 at 8:31 AM

Jeff and I learned of Brady's CF while I was pregnant, but all the other diagnoses came within the first 2 years of his life.  It's hard at times but we think he's perfect:)

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