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

Inspiring 18

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.

Do you have a child with a disability? How did you learn to cope?

 

Image via fruitymonkey/Flickr

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Chana... Chanandler.Bong

I think we parents need to be very careful with how we present our special needs kids to the world.  It's a fine line between exploitation and over-sharing and educating and honesty.  Oftentimes, respecting your child and his/her privacy is more important than blogging or writing articles.  Special needs children and adults face an uphill battle in this society.  They are often assumed to be incompetent and not as valuable as everyone else.  I understand this man had a change of heart, and his ultimate feelings of love and adoration towards his daughter are lovely.  I just don't think it's appropriate to share how he wanted to leave her, or that at one point he wouldn't have thought it was a big deal if he died.  We live in a society that makes excuses for parents who kill their special needs children; where often, if down syndrome is discovered in utero, abortion is encouraged.  The best thing we can do is to publicly present positive stories and change that thinking and not even entertain the dark emotions to the masses.  Find a support group if you need to; don't plaster that all over the internet for your daughter to someday read. 

nonmember avatar April

I actually disagree with the above, for one reason. I think it needs to be said that ther ARE people who feel this way. And feel alone in the world. I think that if it could make one person think "wow, that is ME, and there IS a light at the end of the tunnel" it's worth it. Not to disrespect the children or make them feel bad, But to help thier parents

Stephanie Isaac

There was a chance when I was pregnant that my son would have Down's syndrome

My ex (but my husband at the time) thought I should end the pregnancy if it turned out that he was Down's

I knew from that first heartbeat that I'd live him no matter what

My son does have issues and falls on the spectrum but I do all I can

It is true in today's society that we seem to over share

Cathartic or not, one day our children may read what we put out there

No child should ever have to know that their parent want effected by the thought of their death

Teach... Teacher201213

I have a wonderful son who is celebrating his 20th birthday today.  He has Cerebral Palsy and let me tell you he is a gift.  Because of him, I became  special Education Teacher, determined to help parents like me and teachers who did not have a clue.  Because of him, my world is a better place.  I remember where I was at the moment he was diagnosed, what I was wearing, what exact time the clock said and what he was wearing.  Time stood still and I am now greatful that my world has been enriched by this experience.  Today, I know what love means and I understand in a way that only a special parent can.  Yes, I am still dealing with coping but you can make it and you will be blessed beyond imagination.

Chana... Chanandler.Bong

April, OF COURSE, there is a "grieving period" that occurs when your child is different than you had thought.  I understand that.  I think all parents of special needs children goes through that.  And I know a lot have blogs and write about it.  What makes this so hard to read is the real names that were used.  Pictures of a real child are used.  I get what you're saying about how it may help other people.  But part of being a parent means you have to protect your child at all costs.  It's putting your child ahead of your own desires.  He could have shared his story anonymously.  He could have left out the gory details and just said it was hard, then provided a link to resources for parents going through a similar thing.  This little girl will be able to read this; she will know explicitly how her father reacted.  She will also read the harsh comments to that article that random people left.  That's what I'm against.  It's not fair to her.

nonmember avatar NoWay

My family is blessed with several special needs children. I have a niece with Down Syndrome (my side), a nephew with Down Syndrome (my husband's side), a nephew with Autism (my ex-husband's side) and my own son was just diagnosed with Asperger's Syndrome. All of these children are special in their own way, but so are the "neurotypical" kids in the family. These children bring joy to our famiily every single day. Are there hard times? Of course! When my son was little, there were times when I would be so overwhelmed that I would just break down and cry. But, he needs me so I had to pick myself back up and be strong for him. There are days when I wonder what they would be like if they didn't have these disabilities, but really, if they didn't, they would not have the same personalities and that is what we love about them. No, I'm not "glad" they are disabled, but I love the people they are and woudn't change them.

adopt... adoption2013

I adopted her knowing that she had asd.  I didn't know if she could develop at all.  I chose to love her no matter what.

Green... GreenEyesMom

I agree with Chanandler bong.

nonmember avatar myopinion6

I totally disagree with this statement:

"My family is blessed with several special needs children."

Why would you say kids that have special needs are "blessings?" Why pretend that they aren't disappointments and burdens? I am never having kids because I couldn't deal with "special needs." I'm tired of hearing everyone downplaying special needs, these aren't GOOD things, they aren't things to be happy about! Yes you can deal with it the best you can but to call them blessings is wrong.

Chana... Chanandler.Bong

My opinion, that's fine if you choose to not have kids, but you are hardly in a position to decide whether or not my kids are blessings.  They are absolutely extraordinary people, and far from disappointment or burdens.  Maybe to you they aren't good things, and for that I feel sad for you.  My family is filled with love, and my kids are very much a large reason I am so content with my life.

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