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 night’s 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

A Dad’s Proverbs 7 to His Girls


Proverbs is one of my favorite books of the Bible.  It gives so much wisdom on how to live the day-to-day life.   Proverbs gives particular insight to young men and how to watch out for sexual temptation (Chapters 5 and 7) that could derail their lives and ultimately kill them.

I wish there was a chapter in the Bible like that for girls.   I have 3 girls that I want to be pure young ladies.   I want them to know what to watch out for.  I am writing this as an open letter for my girls to read and if you would like you can read it as well.  I am in no way comparing what I write to scripture.  These are just a few of my thoughts that I want my girls to consider as they grow up.


Yong men have a deep sexual desire, especially in their teens, that they have not yet learned to control.  Because of this you must be wise and discerning.  Here are a few things you should not do.

Don’t sit on their laps.

Don’t kiss them.

Don’t give them full frontal hugs.

Don’t be alone with them.

Don’t share a blanket with them.  A lot can happen under a blanket.

Don’t start something you do not intend to finish.

Don’t start ‘dating’ until you are in a season of life where you are ready for marriage.  This is NOT 16 for most girls.   Do not awaken love until its time.

Don’t listen to them.  They will say whatever they have to in order to get you to make them feel sexual pleasure.   Their words, although they make you feel good, are shallow.  They have not had time to develop character that you will desire in a husband.   The man you want to marry will be a man who will seek first to honor God and then you and only after marriage will he one day be intimate with you.


God says you are valuable and I say you are valuable!  It is hard for a young man to see past your exterior.  Your body is one of the greatest gifts you will ever give.   The times we live in have cheapened sex to be as random as a hug or handshake but God never meant it to be so.   God meant it to be a mingling of two souls.   He wired your body and soul together.  You will have a deep emotional attachment to whomever you share your body with.   Save your body for your spouse.   Wait until marriage to have sex.  This will strengthen your marriage in years to come in a way that you cannot imagine at the present time.


Be careful of the Internet.  Facebook, snapchat, twitter, and the 1000 other things that will be invented before you read this could be your undoing.  Don’t take a picture of yourself and put it online unless your dad has approved it.  Never take a picture of yourself and send it to a boy.   You never know where it may resurface.   I will help you with this.  Pictures and comments will be online for eternity and they could harm your future.


The way you dress is a reflection of your heart.   If you dress provocatively it is a clear picture that you need attention and you will do whatever you have to in order to get attention.  Do not worry about how the other girls dress.   If you are a Godly woman with character then the right man WILL notice you at the right time.   Modesty does not hide a beautiful woman — it reveals her.  Your mother is a gorgeous modest woman and she can help you find modest fashion.  If you are ever in doubt about whether you should or should not wear something, ask me.   I will give you an honest answer.


Choosing a spouse is the second most important decision you will make in your life after choosing your God.   If you believe your mother and I love you then allow us to have a very strong voice in helping you choose who you will date and marry.  No one loves you like your mother and I and we may be able to see things in your potential suitors that you may be blind to because of infatuation.


We are all somewhat superficial.  Please look at a man’s character more than his appearance.  As a young person I am sure you desire a man who will be attractive to you.  I can promise you that if you marry a man who loves Jesus with all his heart, over time, he will become your “Prince Charming.”   Proverbs 31 says of a woman that, “Charm is deceitful and beauty is vain, but a woman who fears the Lord is to be praised.”   The same can be said of a man.  Look for a man who fears the Lord.


Remember that Daddy and Mommy are praying for you.  No matter what decision you make in regard to your future husband please know that I am praying for you and for him.  I am praying God will give you wisdom and discernment that one day, if the Lord wills, you will find a man who loves you as much as I do…that might be impossible.

The “Joy” of Different


I would be remiss if I did not take a few moments and tell you of a providential tale that Lord is working in our lives (Rick and Charyl).

Yesterday (December 17, 2013) I was an expectant dad.  We got up at 3:30 in the morning and headed to the hospital.  Contractions were strong and about 5 minutes apart.   Charyl was a trooper and was dealing with them well.  We made it to the hospital, got situated in our room and continued the labor process.  Charyl received an epidural and had perhaps the most pain free and easy delivery we could have hoped for.   They put the messy but beautiful baby on Charyl and we were all full of  JOY at the delivery of our precious child.   As they worked on Charyl, I followed the nurse with the baby and had my camera in hand taking pictures and videos.  I have been there for the birth of all my children and they have all looked exactly alike.  As they wiped Joy off immediately I noticed that she had a different look about her than my other three.   At first I thought maybe she just looks different, but as I looked closer, like a punch in the stomach, I had the heartbreaking thought, “I think my new daughter has Down Syndrome.”  I dare not speak what I had suspicions of, but in my heart I knew.   I looked in the eyes of the nurses and I could tell that they knew.  I saw one of them make eye contact with another one and she looked down and confirmed the heartbreak that I was feeling.  I felt flushed like I was going to faint.  I felt shame, fear, anger, disbelief, and shock.  I didn’t want them to take the baby back to Charyl.   She is a nurse and I knew as soon as she got a chance to look at her, she would see the same thing.  They handed her to Charyl and after looking at her for just a moment Charyl’s face said what I was feeling in my gut.  Charyl said in quiet disbelief, “She looks like she has Down’s.”


I love people, but like most people, Charyl and I have never felt particularly comfortable around people with special needs.  We love them, but probably like most of you are–not sure exactly how to act around someone who has special needs.   For this reason we always thought that ministry to special needs children would be something we support, but not our particular calling in life.   Isn’t God funny?

I have to be honest… to this point in our life we have lived a life that could possibly be described as enviable by many.   We have a strong marriage, 3 awesome kids who are cute as can be, I serve as pastor at a great church, Charyl has an amazing business, we have more awesome friends than should be legal for two people, and most of all, we are happy.  We love Jesus and we love life.  We have seen all these things as the blessing of the hand of the Lord on our lives.   We have tried to honor Him in the way we live and the way we treat others and He has always been good to us.   Charyl is still relatively young (30) for today’s standard of having children and we have no family history of Down Syndrome.  There is NO way we should have a child with Down Syndrome!   This does not fit.   This is not in the plan.  A child with Down Syndrome does not fit into our crazy perfect little lives.   Well…God has other plans!   God has better plans.   God knows better than we know.  A God that has always been good to us is still good to us.  He is showing us His goodness through an unexpected channel of blessing named Joy.

A New Way of Thinking

When I think about Ty, Katie, and Karis growing up I think about all they can be and do.   Ty is smart and creative.  Katie is a loving hard worker, and Karis is dramatic and funny.  I think about life milestones like graduation, marriage, careers and children that they will one day have.  You want your children to excel in all that they do.   As I think of little Joy, I don’t know what the future holds.  I don’t ever want to hold her back.   I want her to be all that God created her to be.  I don’t know what that will be yet.  But I do know God has already shown me that He doesn’t measure success the way I do.   Success for Joy may be simple things that are easy for other kids.   God is already teaching me the value of finding worth in Joy in who she is and not what she can do…although I know she will do much.

Processing Grief and Fear

I am not a very emotional person.  In fact, in the 8 years I have been married to my wife she claims she has never seen me cry.  I do not count this as a badge of honor, but almost as a source of shame.   People cry because they are touched deeply and they care.  Believe it or not I have prayed in the past few years that God would give me sincere tears for those who hurt that I may weep with those who weep.   Yesterday I wept with Charyl.  We held each other and sobbed together.  I have never been one for a “cleansing cry” but I think it was good for me to release a lot of emotion.   I am sure we will have many days in the future that we will do this again.  Why did I cry?  I cried cause I was disappointed.   I cried because I felt disappointment in my disappointment.  I cried at the revelation of the wickedness of my own heart.  I cried because I have fear of the future.  I fear that everyone will look at my little girl differently.  I cry because of ridicule she will face.  I cry because I think of things like the prom and marriage and realize she will likely not experience these things.

I have to be honest it hurt and hurts.

A New Ministry

How do you respond to us and how do you help us?

Don’t treat us, or Joy as if we have leprosy – We have not changed and our family has not changed other than the fact that we have added a great new dimension to our family.  My wife and I never saw ourselves as having a specific ministry to special needs people.   That has all changed.  We know God will make our hearts desire to stand up for those who cannot stand for themselves.

The Providence of God in the Birth of our Special Little Girl.

We named Joy long before we knew she would be a little girl with Downs.  The name Joy could not be more fitting.  My wife is a registered nurse who is uniquely capable of helping a little girl like ours.  Joy was born into a family with three super loving older siblings.  Joy is a preacher’s daughter and will have much support from her faith family.  Charyl and I are not good candidates to have a Down Syndrome child.   Charyl is 30 and neither of us have a family history of Down Syndrome.  We have three healthy older children who do not have any genetic disorders.  We believe God specially knit Joy together for us and for those she will impact.

The Sunday before the birth of Joy I preached a message on the subject of Joy.  Here were two of the points of the message I preached on Joy:  1) Joy and Jesus are inseparable.  2) Joy is greater than any of your circumstances.

To sum everything up we have a new daughter named Joy who has what I like to call special abilities that we are deeply excited to welcome into our family.   We are thrilled to learn all that she has to teach us.  Thank you God for considering us worthy of the gift of this little girl.