The “Joy” of Different

1390683_10152119819638447_74444056_n

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.

Advertisements

19 thoughts on “The “Joy” of Different

  1. Beautifully written. You’ve captured so many emotions that we felt. Wen NIcholas was diagnosed at 3 and a half with aspergers syndrome, I thought ‘well God, this wasn’t my plan. I am not comfortable with special needs children. My best friend in college, yeah she’d be great with this, but not me.’ I walked around in a fog for a few weeks and then realized I better pull myself together and figure out how to help him. But God took us through that and to the adoption of two more special needs children. when they were diagnosed they were still foster children but they were ‘MINE’. I was so angry with their mother for using drugs and drinking and causing them to have fetal alcohol syndrome. Something to preventable and yet my kids will deal with it for the rest of their lives. But God got us through that array of emotions and they bring us such great joy. Every milestone they reach is a cause of celebration! I had a dr tell me that Nick would never ride a bike by himself and I thought ‘well if he wants to bad enough, he will.’ yep, he did it, later than most kids, but he did it! So don’t let anyone set limits on what your sweet Joy can and will do.

    I know my kids have different diagnosis than Joy but so many emotions are the same, so many of the therapies, etc. we have spent hours upon hours with therapists but as Charyl will know from being a nurse, early intervention is so key.

    It will change your family, for the better. It will affect your older children, but I pray it’s the same way it has affected mine. They are more kind and gentle with kids who might have a disability. they are more comfortable around special needs individuals than I was at their ages. They will stand up for kids who are being picked on and Kenzie even has tried to help some special needs children in gym class when others were picking on him.

    I know that you and Charyl are going to be awesome parents to sweet Joy. Praying for God’s blessing on your family.

    1. Just another aspect about individuality.

      a man considered the most intelligent person of the twentieth century, Albert Eienstein, made the comment many years ago: Every person in the world is a GENIUS of something and all WE have to do is discover what it is. Note that he did not exempt even the most “Special Needs” individuals while also not only indicating those in contact with those special needs but indeed their ENTIRE WORLD.

  2. Rick, you nor Charyl know me, but I have been one of Charlotte’s friends for many years. My husband and I have a “special needs” son who will be 38 in February. I didn’t realize anything was “different” about him until he was about 2 1/2. Then…I didn’t want to acknowledge it. I was told at our local school for special needs children that he would never read, that it would “frustrate” him to try to learn. Victory Christian Academy in Sneads opened in 1986, and since we attended church there we wanted all three of our children to attend. They started the next year and within the first nine weeks, our son was reading and hasn’t stopped since. As a mother, I worried, cried and questioned…”why, what will he be able to do, etc.” Well, he graduated, has a full-time job at Lowes which he has had now for nine years and he loves the Lord Jesus with all his heart, and is not ashamed to tell people about Jesus and ask “are you saved?” I thank God for giving him to us and I remember a poem one of my pastor’s wives gave me when he was about three entitled “Heaven’s Very Special Child”. Gods gives these children to special parents because not all parents could handle it. I consider it a privilege being his mother and what I would say to you and Charyl is don’t “fret” over Joy’s future…God has it in control and all we have to do is trust Him. If I had done this early on, it would have saved me a lot of worry, tears and doubts about what He can do.
    Prayers for you and your sweet family!!

  3. Every member of my family has worked with physically and mentally challenged children. We worked at Sunland Training Center, where challenged children were sent if they could not live at home or were not wanted. I would just like to tell you there is no more loving children than those that have downs. We were and still are blessed to work with some of these wonderful children. My parents are deceased, but both retired from here and my sister is still there after 32 years. I worked there for several years, but followed my husband when he was sent overseas with the military..I have also owned children’s clothing boutiques for years, and had the pleasure of having many customers who had children with downs. I was so happy to see them come to shop. The sweet children had a smile on there face when they graced our door and also when they left. They would just hug and love all of our workers, We would all have smiles on our faces long after our little customers left. God knows where to place these special children, your honesty about your fear, and shock, just shows that you are going to be loving, caring, parents of little Joy. We pray she will bring you , Charyl, and the three sisters as many happy hours as our special downs friends have brought our family!! God Bless you all…..He already has!!

  4. I love you guys so much. When I saw your status announcing that your bundle of Joy has Down’s syndrome, my heart selfishly broke for the two of you. Then, a few seconds later, I thought about the irony of the name God gave to you and mrs. Charyl. It will be hard, at times, raising a child with this disorder, but she will bring you so much joy and happiness.
    I, too, am someone who is not particularly comfortable around people with special needs. It’s not that I don’t have compassion or I don’t consider them as human beings, but I am just not sure how to act or what to say. I understand how you feel about that, but I think that you and mrs. Charyl are the perfect candidates for what Joy needs. She will teach you so much and she will bring a whole new lifestyle to your house. I am very excited to see the blessings you have in your future. Joy is definitely a blessing in disguise. 🙂

  5. First of all, CONGRATULATIONS! Welcome to Holland! Neither of you know me. We share a mutual friend & she posted this on her fb wall. I am 37. I have 3 perfectly beautiful children. Chancey, he is 16. Troy, he is 4 (will be 5 in 3 weeks). Mackenna, she is 20 months. Troy has Down syndrome & a CHD. We found out before I was even in my 2nd trimester that he had DS & a few weeks later we learned that he had a CHD that is common in kids with DS. I went through the “grieving & accepting” phase that y’all are going through, I just got to do it before my son arrived. I just had a heart to heart with God & I basically told Him that if He trusted me with this precious soul, that I would be the best mother in the world to him. I know that I am highly favored to have the distinct honor of being Troy’s mother. Since he was born, he has changed lives, touched hearts, fought to stay on this earth, won a Cute Kids contest, been on the big screen in Times Square, made the front page of a magazine, but most of all, he has loved & been loved.
    I, too, thought, my poor child…he will be ridiculed & made fun of. People will stare & treat him differently. But that is not true. Well, not exactly. He does get treated differently, but in a good way. He spreads live & happiness every where we go. We receive compliments about him each & every time we are out in public.
    Troy has had 3 heart surgeries (all before age 2), yet he walked at 26 1/2 months. He is very verbal. He began talking in phrases at 2 1/2 & sentences by 3 1/2. He is very intelligent, yet stubborn. He likes the same things most kids his age do. He knows shapes, colors, numbers, the alphabet (he can’t recite it, yet, but he knows which letters are which), his name, his age, etc.
    I know, I am going on & on. I just want to give you all a glimmer of hope…something I wish I had.
    Feel free to contact me or if you have a Facebook, you can friend me. I will help you in any way I can. Again, welcome to Holland. You WILL find it is beautiful here!! God bless you.

  6. Thanks for being so frank and honest with yourself and all of us… We have a good friend, who went back to school for Pedagogy specializing in Special Gifts ed, soon after giving birth to her ” Joy “. She promised her baby, she was going to get educated to make sure “Joy” would rise above and beyond any expectation! And so she did, and conquered exactly what she set out to do! Many years later, I’m pleased to tell you that ” Joy” grew up to become a DDS and has her own office where she’s loved and respected as anyone else! The Lord is on your side Pr Rick and Charyl! He is not a man that he should lie, nor a son of man that he should repent! His promise is to be with you all the days of your lives! ” Fear not…!” Count on our prayers!!! Lots of love!

  7. I knew Charyl when she was a very little girl in Sneads, Florida. She most certainly probably doesn’t remember me. We are praying for your precious family and asking God to give you a peace that passes all understanding in this storm that you are experiencing. Merry Christmas to you and your bundle of “Joy”!!!

  8. I have a grandson who has special needs. He turned 19 on December 12th. He is a senior at Leon High School. A neurologist once told my daughter Stephanie & husband Chris he would never amount to anything but God had His own plans for my Zachary. He has Autism but he is high autistic. I remember when he was born Stephanie & Chris were very upset. Here they had just had their first child & the pediatrician came & told them he had very serious physical problems at the time. There were holes in his heart, an abnormal aortic valve in the heart. And he had one of his eyes that wasn’t able to fully open all the way. Later on they found out about the autism. But with time the holes filled in. And he’s had surgery at Shands to correct the lid problem with his eye. A year & a half ago he had the valve replaced at Shands & is doing beautifully. He is loved by everyone who comes in contact with him. He was on the Leon HS Homecoming Court this year. He was voted Homecoming Gent by the cheerleaders. The king & queen are voted on by the student body but this honor is as I said is exclusively voted by the cheerleaders. The football players vote for the girl having the same honor. Zach plays sports & has represented Special Olympics playing soccer & softball. Every year he goes down to Orlando & plays soccer & his team brings home the gold metal. The first of this year he went to New Jersey representing Florida & brought home the Silver Metal. Also just recently Zach went down to Orlando & gave the welcoming speech to various Special Olympic athletes from all over the world. Zach is the most loving young man. Everyone who is around Zach can’t help but love him. Zach loves music. He’s has been in the Men’s Chorus since he’s been at Leon HS. This year he also sings in another group that both men & women are a part of. One thing I’m sure of God has a plan for Zach. What the future holds we have to wait & see. But again God will guide him. He knows the Lord. Every year he & his brother Kyle have come to our VBS at my church. Just as Joy is a special gift to your family. Zach has been a special gift to our family. We will keep you & your family in our prayers. We know that Joy was put in your family for a special reason. She is going to receive such love from the two of you & your other children. She’ll thrive. Sending my love.

  9. The moment Jenna and George shared the news of the birth of baby Joy, all I could think was, wow!!! At this special season….as we celebrate the birth of Christ….how special is it that God chose your family for Joy…..in so many ways, a perfect child…free of hatred and prejudice and full of love and happiness. God has blessed you….but more importantly…He has blessed Joy.

    Love and prayers…..Kay Bowles

  10. Rick, what a beautiful summary of all the last week has held for you, Charyl and the kids. God is going to do wonderful things through this precious little girl.

  11. God has given you that special child because he knows you can handle it! She will surprise you by all the things she will do. My children went to school with a child with the same special gift. They loved her and looked at her to be just as a normal as they are. She was on their 9th homecoming court and even had a date for the dance after. God bless and enjoy your special gift!!

  12. Mark and I share in the joy of the birth of you precious daughter Joy. She is a gift from God. We to had a name picked out for our firstborn daughter months in advance of our delivery. Her name is Grace. We also noticed differences in Grace shortly after her birth. I am telling you this not to compare our daughters but to share in your thought process as you think about the future of your daughter. Mark and I were told that our Grace was born with Turner’s Syndrome. She was six weeks old when the phone call came in with that news. We couldn’t breath, our worlds stopped, the questions , how , why , not us. God is bigger then us and knew what He was doing, sometimes I forget that I admit it. We decided at that time that she is a gift from God and we would raise her as we had done with our son. ” normal.” God does not give us more then we can handle. Everything that we knew and found out about her syndrome scared us beyond measure. Let me fast forward to 2013. God is great ! Our Grace is 12 years old and is flourishing in middle school. A strait A student with nothing stopping her. She has a heart of gold and loves life. I say this because I remember the fear I felt for her years ago and what could possibly go wrong in her life. She continues to bless us and God continues to affirm his great grace he has on our family. There’s something in that name. You have Joy and she will be a blessing and a special addition to your life. We are praying for your precious family.
    Mark and Jackie Riley.

  13. One of my favorites! Congratulations on your bundle of Joy!
    WELCOME TO HOLLAND

    by Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it,to imagine how it would feel. It’s like this……

    When you’re going to have a baby,it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation,the day finally arrives. You pack your bags and off you go. Several hours later,the plane lands. The stewardess comes in and says,”Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible,disgusting,filthy place,full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy,less flashy than Italy. But after you’ve been there for a while and you catch your breath,you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life,you will say “Yes,that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never,ever,ever,ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy,you may never be free to enjoy the very special,the very lovely things … about Holland.

  14. Thank you for sharing from your heart the hurt and the blessing. I do not know you and your family but I love you all and are praying for you for God’s rich blessings He has in store for your future. Not the same situation but my husband and I and our son’s siblings lived a trying lifestyle but God blesssed in ways we would have never known and He receives all the glory and praise. Love your precious family, Linda

  15. As a mom with a child with special abilities (love that!) I have discovered that God gave me such a special gift. He revealed to me that all the things i love about my child would not exist if he didnt have.his special abilities.

  16. Rick and family, what a precious, heart touching blog that you have written about your beautiful new daughter Joy, your honesty, faith, strength will be the building blocks for your adorable little girl. I will lift you all up in prayer, may God continue to bless you and your family, I agree with your statement about the name of Joy, she will be your blessing forever. Merian

  17. Beautiful post, Rick. My wife and I had a really similar start into the world of DS. Just regarding what you said about Joy probably not going to prom or getting married: She’s going to make you eat your words 😉

    I just thought I’d pass on the links to a few books I wish we’d been given early on:

    http://www.amazon.com/What-Want-You-To-Know/dp/0615757871/ref=sr_1_1?ie=UTF8&qid=1387862376&sr=8-1&keywords=what+i+want+you+to+know

    http://www.amazon.com/Gifts-Mothers-Reflect-Children-Syndrome/dp/1890627852/ref=pd_sim_b_3

    http://www.amazon.com/Crossing-Tahoe-A-Swimmers-Dream/dp/B003CT6IQQ/ref=sr_1_2?ie=UTF8&qid=1387863373&sr=8-2&keywords=karen+gaffney

    Have a lovely Christmas. With you, Joy is obviously where she is meant to be.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s