The Horror Of Having A Child With Down Syndrome

Horror!  That is quite a word.   It is a word that makes me think back to when I was a kid and saw my first Dracula movie.  I was so scared that I had nightmares for weeks (Now vampires sparkle but that is a blog for another day).  Horror is a terrifying word and yet when people think about their supposedly healthy child being born with the condition of Down syndrome (DS) the word Horror comes to mind.  It is almost like a death sentence.   This is not what you expected.  This is not what you had hoped for.   So much to learn…so much to do…so much to think about.

Since our daughter Joy was born with DS everyone one asks me, “How are you and Charyl?”  “How is Joy?”

I have to be completely honest with you.  I am not going to hold back the bitter truth…

Joy has been the most delightful child I could imagine!

Here are some real horrors we have experienced with our little Joy

THE HORROR OF SLEEPING THROUGH THE NIGHT – Joy is now 11 weeks old and she has slept through the night since we brought her home.  Our other children have not been sleepers.  We went almost a solid year without a good nights sleep with our twin girls.  Joy’s awesome sleeping schedule has allowed Charyl and I to be able to quickly adjust to the needs of a family of 6.

THE HORROR OF SNUGGLINESS – Apparently snuggliness is not a word but I am making it up because it so accurately describes Joy.  She is the cuddliest child imaginable.   I have nicknamed her “Snuggles.”  She is like having a little warmer full of love on your chest.  If you could somehow package love and hold it in your arms my little girl would be what you would come up with.

THE HORROR OF SUPER BIG SMILES, TONS OF BABY NOISES, AND PLAYFUL EXCITEMENT – I don’t want you to get the impression that Joy sleeps all the time or does not interact.  She loves to interact with everyone she comes in contact with.  She is very social.   She “talks” all the time.   She loves for her brother and sisters to talk with her and play with her.

I will not say that our experience with Joy is typical of all parents who have children with Downs.   Many children have open-heart surgery during the first few weeks of their life.  Some children with DS have many different health issues.  However, I will say that the joy found in parenting a child with DS seems to be unanimously wonderful across the board.  I have had the opportunity to meet a number of parents who have children with DS and all of them have such a deep love and appreciation for their child.

The only real horror of downs is the same horror I have for all of my children.

It is the horror of fear.

The horror of fear of the future that has not yet come and may never be.  Fear and worry are brothers from the same father, Satan.  They say that worry is a down payment on something that you may never need to pay for.

Fear is satanic in nature.   When we worry we are saying to God that we cannot trust Him with our future.   We cannot trust Him with our children.

2 Timothy 1:7 God didn’t give us a spirit that makes us weak and fearful. He gave us a spirit that gives us power and love. It helps us control ourselves.

I cannot speak about what God has in the future for Joy, or any of my other children.   I can speak of what I know.  I know that God has been faithful to my family and I.  I know He WILL continue to be faithful.  Joy’s DS has just given us one more reason to trust our heavenly Father more, for that I am eternally grateful. IMG_3069 IMG_3244 IMG_2933

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9 thoughts on “The Horror Of Having A Child With Down Syndrome

  1. Such a blessing! May I borrow some of what you said? Starting with the Horror of Fear through the scripture you mention?
    Thanks for sharing! Joy is a beautiful bundle of love.
    Karen Heard

  2. You all are so blessed! God knew exactly where and with whom to entrust this beautiful, precious life. Family that love and appreciate all that she is and her sweet soul that will be nurtured and protected to God’s glory.

  3. Beautifully written. I have two gorgeous girls with DS. My daughter, Madison, is 24 and my granddaughter,Michayla, is nine. Believe it or not, it keeps getting better and better. 🙂 Congratulations on the birth of your baby.

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