Down Syndrome, From Gut Punch To Gratitude

Have you ever been hit really hard in the stomach?   It is a terrible mixture of pain and the lack of ability to breathe.   This is what it felt like the first time I got a good look at my fourth child when she was born.

My wife had a great delivery and I was the proud father with the camera recording.   Our new baby girl cried and the nurses quickly whisked her over to clean her off.  That’s when I saw her face the first time, that is when I felt the gut punch.  Immediately I knew in my heart that my new daughter was different.  With her little swollen face and her protruding tongue it was clear to me that she had Down syndrome.  I knew the second gut punch would be coming in just a few seconds.  The second gut punch would hurt worse than the first.  It would come when they brought my new baby back to my wife.  My wife is a nurse and I knew that right away she would see what I was seeing.

She held our sweet baby and looked at her and I saw her reaction as she felt the gut punch as well.   She said with a quiver in her voice,  “It looks like she has Downs.”  That day, over 4 years ago is still very vivid in my mind.  It was a hard day.

There are some scenarios that happen to other people but you never think they will happen to you…

And then they do.

We were now parents of a little girl named Joy who had Down syndrome.  The initial shock passed quickly and we realized that Joy was a gift from God perfectly knit together in her mother’s womb.  She was no accident.   God gave us a little treasure that would change our future and the future of our family and extended family.

Fast forward to present day.

Our little Joy is such a bright light in this world.   I look forward to her hugs and excitement every morning.  She has made us all more caring, accepting and generally happier.

She touches lives all over the world with her smile and charisma.   She is funny, happy, determined, opinionated and oh so caring.

To be real honest Down syndrome is not something we think about that much in our family.  Joy is just part of our lives.  She is just like all of our other children.  Some things take her longer to learn but every milestone she hits is a mighty accomplishment that our family celebrates.

The day that Joy was born I shed a lot of tears for the loss of the child I thought I was getting.  I cried because there were so many unknowns about the future.  I still have tears come to my eyes on a regular basis but it is for different reasons.  I have tears of Joy in my eyes.  I have such gratitude and thankfulness to God that he would entrust my family with such a precious gift.  I have tears that well up when I think about just how much love and value Joy adds to so many lives.  Who am I that God would entrust with one of His most precious treasures?

Our family wants to help the world understand that Down syndrome is not a sentence to a life of misery but a sentence to a life of love.   We want to spread awareness of the great abilities of the precious people in this world who happen to have Down syndrome.

If you have read this far then you must care about Joy and about children like her.  Today is World Down Syndrome day and I want to tell you about one little boy who has Down syndrome named Justin that you can help.

Justin is an awesome little guy who lives in an orphanage in China.  He doesn’t have a family to love him.   He does have a family that wants him.   Some very dear friends of mine are doing all they can to adopt Justin and bring him home.  They need help to do this.   International adoption is very expensive and they are trying to raise the resources to bring Justin home.   Would you consider, on this special day making a real difference in the life of one little boy who has Down syndrome.   If you can give to help with this adoption it would mean the world to this family and to Justin.  Here is the link to the Go Fund Me Page.

https://www.gofundme.com/7fvje8-we-are-adopting

Also if you could share this blog and help raise awareness for this need it would be greatly appreciated.Screen Shot 2018-03-21 at 9.00.23 AM.png

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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 4th 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.

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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. IMG_1762IMG_5161  IMG_3069

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