“Is She A Down Syndrome?”

Recently, my wife and I packed up the family for an afternoon of hiking and exploring in Helen, Ga. We could not have asked for a better day. The kids loved the hike, the weather was perfect and memories were made.   After our hike we had dinner in Helen and we walked around the quaint little mountain tourist town.

My children are Ty (8), Karis (5), Katie (5), and Joy (22 months).   Joy has Down Syndrome(DS).   To be real honest this last detail about Joy is mostly irrelevant in our family.

To us she is just Joy.

She is a great blessing to all of us and rarely does her genetic condition affect us. This is so true that most of the time I forget she even has DS.

On our trip I had forgotten…

I walked with my older children, held my wife’s hand, and pushed little Joy in her stroller.   As we ate ice cream and waited to get our balloon animals, a well meaning young lady looks at Joy and smiles and says to Charyl, “Aw, Is she a Down Syndrome?’’

It doesn’t take long to come back to the stinging reality that our little girl is different and when other people see her they notice Down syndrome and not Joy.

As we walked back to the car that afternoon I had some big old crocodile tears well up in my eyes. As a parent nothing hurts more than when you feel like others do not see the value in your children in the same way you do.

While the conversation was innocent and the young lady was kind, I could not help but feel pierced in the heart by her words, “Is she a Down syndrome?” To a person who does not have a child with special needs this question may seem completely innocent and appropriate but somewhere in the last 22 months I have become one of those overly sensitive parents. Please forgive me. This is not like me.   I am not a particularly emotional or sensitive man.   I rarely cry, in fact I see this as a flaw in my character that I do not feel things as deeply as others, but I have become very sensitive about Joy.   I almost cry as I type this…because I can’t help but desire for people to see Joy as I see Joy. I want them to see HER and not her “Syndrome.” I want others to value her as I value her!

So, NO! She is not “A Down Syndrome.”

She is JOY!

She is made and crafted in the image of God.

She is valuable.

She is beautiful.

She loves to follow her sisters.

She loves to give hugs.

She has a smile that lights up the world.

She has siblings that can’t wait to get home from school to play with her.

She claps and cheers for everyone.

She wakes up happy.

She likes to help her daddy cook.

She is very opinioned and will not eat her carrots no matter how you try to sneak them in.

She is resilient.

She brings hope.

She is her mama’s heart!

She is her daddy’s heart!

Every life God creates carries the stamp of divinity. If we will take the time to get to know people we will be shocked by the beauty we can find in each soul.

I did not ask for, nor did a want to have a child with Down syndrome.   It will always hurt my soul that Joy will struggle with simple things that typical children take for granted.

In spite of my desires God knew better than I did.

I am so thankful that God knows what is best for me when I don’t know how to ask. I am so thankful He brought JOY into my home.

God’ s greatest gifts are often disguised as presents we think we don’t want or don’t need.

When you see a family that has a child with special needs, if you desire to interact with them, ask the person’s name.   Every person is more than their disability.   Say an encouraging word. The family probably needs to hear it.   Find something good you see in the person with disabilities and complement their ability.   It may be as simple as saying, “You have a beautiful smile.” It may mean the world to that family. Be kind and considerate.

I Need Your Help With My Daughter With Special Needs

I have been a parent of a child with special needs for about 17 months now.   It has been a journey that started off as shocking. When our 4^th child was born, we found out she was born with Down Syndrome (DS). Through our belief that every human life is made from God, in the image of God, and knit together in the womb by God, we knew a blessing had been given to us—but it was still a shock. When our tears dried and the dust settled on our new normal, we started to get to know our new little gift, our Joy.   While Joy’s health has been good, there are many challenges she faces that typical children do not face. There is the constant worry that we are not doing everything we can to help her development.   These are worries and fears we face with all of our children, but they are amplified with Joy. My greatest worry is for her heart.   Not her physical heart (thank God it is doing great), but for her soul, her emotions.

To say Joy has been a delight to our lives would be a dramatic understatement. She is a little sunshine to everyone she comes in contact with. Her siblings cannot wait to wake up every morning and hug her. They constantly fight over who gets to play with Joy. God did not make a mistake…He never does. He always takes what is difficult and, given enough time, He turns it into something very beautiful.   It is never in our time, but always in His.

Now, on to what I need your help with.

I do not need money to help with Joy (although therapies and doctors visits are very pricey.).   I do not need you to take care of her (although, if you want to watch her and the other three I am never opposed to date night with my wife). I need you to love her.   No, I mean really love her like a person.

One thing my wife and I have learned through this journey is that people are people no matter their physical limitation or intellectual capacity.   What has been heartbreaking is the colossal ignorance of society in general. As I look at the speck in society’s eye let me first say that this has been a log in my own eye that Joy is helping remove.   While I have always tried to love people, my comfort level with those with special needs has been limited. Most people are uncomfortable when they are around someone with special needs. They do not know how to act; they do not know what to say. The great irony in this is that while typical people can be very judgmental, those with special needs are mostly loving and accepting.   There is no reason to feel weird other than the fear of the unknown.

2 things I need help with:

It seems the answer to the “problem” of children with DS is making sure that you get tested while you are pregnant and have time to get an abortion. This is harsh but it is just the reality. Depending on the studies you look at, between 80-90% of children with DS are killed in the womb. My soul trembles at the joy and hope that is being stolen from our dark world. What a horrible thing that families would exterminate their children because they are different.   I need your help. If you are tested and the test comes back that it is probable that your child has DS please allow that child to have life. If you cannot handle the stress, then allow your child to be put up for adoption. I have been told that there is a waiting list of families who specifically want to adopt children with DS. Choose life.

The second way I need your help is simple–this: please love Joy like a real person! I know this may sound odd but it is something that bothers my wife and I. People with DS are just people! They may move a little slower. They may not be able to do higher levels of math and some of them may talk funny (For some people, this has to do with their hearing and the size of their tongue.) THEY ARE JUST PEOPLE! They love, they laugh, they hurt, they cry, they have dreams, they have ambitions and they have feelings.   I see so many posts and articles on the internet by well meaning people (many times I am tagged in these or they are shared on my facebook wall) that frustrate me.   Let me give you an example of what I am talking about.   I have seen a number of young girls with DS that may be asked out to the prom by a popular boy in school. The boy makes a big deal about it and it goes viral and makes everyone feel good that the typical popular boy takes out the sweet little girl with DS.   It is heartwarming and makes that boy feel like he is really making a difference. But I don’t think of it that way. I am that little girl’s daddy!   That little girl is not a puppy or a party favor. That girl has real feelings and emotions that, to me, are way more important than someone having a “photo opportunity.” I come home to that little girl who may be crying on her pillow because the boy who took her to the prom never called her again. She doesn’t understand why he won’t take her out again.   He had a great night and everyone applauded him, but my little girl is left with the feelings of inadequacy and hurt because she knows she is different. She knows she has DS and a typical boy would never care for her in that way. I used to struggle with how much my daughter would know. Would she be high functioning?   Now I struggle with a different battle. I am afraid she will know too much. I am afraid she will be too ‘typical’ and still have DS. I am afraid that she will feel the sting of being a young teenage girl that stops getting asked to hang out with the girls who were her friends when they were little.   I am afraid that she will not understand why she might not be able to get her drivers license when her brother and sisters did. I am afraid these and a hundred other little things that most parents don’t have to think about. I will do my best to help her through it. I know she is strong. I know she will bring light everywhere she goes. But I wrote this just to bring a little perspective to those of you who may not have a child with DS.

I need your help.   I need you to treat Joy and other people like her, like a person. Take time to remember that she has the same feelings and desires that you do. Treat her as a fellow image bearer of God!   Just like every person that is typical is an original, so each person with DS is not like the next. Be careful to not make the assumption that all people with DS are the same. Thank you for your help.

Dear Richard Dawkins, YOU ARE WRONG

Richard Dawkins is a world-renowned atheist that is known for his polarizing stances on a number of issues. The latest shocking statement he made was in regard to women who find out they are pregnant with a child who may have Down syndrome (DS). I would not usually take the time to address something said by Richard Dawkins, but I feel that I must address this issue because his comments hold the power of life and death. He has a large audience and there are many who will agree with his statement.

Here is what Dawkins tweeted in relation to someone pregnant with a child with DS: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

I believe his comments to be ignorant and murderous. What we believe about life and death, animals and humans has everything to do with our worldview. Dawkins is an atheist who believes we all came from nothing. Therefore, in his view, animals and humans have the same value and any human who cannot further the human race should be discarded. To him, people with DS are simple genetic anomalies that are the result of random chance and should be killed before they have a chance to feel pain or cause difficulty in the lives of others.

The article continues, “But faced with a stream of dissenting comments, he wrote: “Apparently I’m a horrid monster for recommending what actually happens to the great majority of Down Syndrome foetuses. They are aborted.””

What bothers me most is not what Richard Dawkins said, in fact I would expect him to say that, I am bothered by the fact that most people who find out they are going to have a child with down syndrome do choose to abort their child. In some places the statistics are as high as a 90% abortion rate! 90%!!! That is genocide. This could very well be related to the fact that when most women prenatally test for Down syndrome and the results come back positive, what is explained to her is a list of all the things that will be wrong with her baby (when in fact, it’s a list of things that MIGHT be wrong, and many issues can be corrected with surgery and therapy). Obviously not in all cases, but as a whole in our mainstream medical community, abortion is very much encouraged with these mothers and they are led to believe that they are doing “what is best.”

Why abort the child? I think people abort their children for a few reasons:

They think it will be too hard to raise a child with special needs.
They think their child will have no quality of life.
They believe it will cost too much.
They think their child is a curse and will ruin their life.
They believe their child will be destined to a lifetime of ridicule.
They just don’t want to spend the rest of their life taking care of someone else with special needs.

I would like to remind everyone that the hardest things we do in life are the most rewarding. Those who make a great impact on the world are not those who say, “I want the easiest path” but those who decide to do what is right and best in spite of the personal cost to themselves.

Back to the issue at hand, Richard Dawkins and anyone who believes that people with Down syndrome are not as valuable to society as “typical” people are dead wrong. I would argue the opposite to be true. Perhaps people with Down syndrome are some of society’s most valuable members.

Most people assess value in terms of production. Value in the world is assessed in questions like: What can a person produce? Are they a great worker? Are they a great thinker? Are they strong? Are they beautiful? Are they talented?

I want to explore that there are other, perhaps greater, measures of value. What about things like faith, hope and love? Producers are important. Thinkers are important. Doctors, teachers, firemen, secretaries and 1000 other jobs are important. While all of these professions are vital, I have found that the greatest need that people have is to feel love, experience hope, and have faith in something.

The unique genetic makeup of people who possess DS seems to allow them to possess superhuman amounts of faith, hope, and love. Surely we cannot lump every person with DS into the same category, but I believe this generally to be true.

Every person I have ever met who has DS that I took the time to talk to has made me feel better. They made me feel accepted. I felt no judgment from them. The one thing I felt from every person with DS is love. To say people with this special and unique gift should not be given the chance at life because they may have some physical and intellectual challenges is ludicrous. Every single one of us has something wrong with us. There are no perfect people. Eugenics is a dangerous game that leads to the kind of atrocities that Hitler committed.

On a personal level, I have an amazing 8-month-old little girl named Joy who happens to have Down syndrome. When she was born I experienced the most painful and intense emotions of my life. Most of it could be boiled down to fear. I feared what most people perceive about people with Down syndrome. Before Joy, I would have thought that having a child with DS would be one of the worst things that could happen to a family. I WAS DEAD WRONG! Joy has been our family’s greatest gift.

Joy has her challenges. My wife and I are constantly concerned with her health and development. We want to give her the best chance in life that we can. I am telling you no lie when I tell you that she is pure JOY. She brings so much joy into the lives of everyone she touches. She has yet to meet someone she doesn’t like.

If you or someone you know is pregnant and have recently found out that you might possibly have a child who has Down syndrome, please, from the bottom of my heart, please give that child a chance at life. Do not let your fear nor the untrue societal stigma keep you from giving your child life. Talk to parents who have children with DS before you make a decision to kill your baby. I would be glad to talk with you about it.   

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.”

NOT US…NO REALLY NOT US.

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.