How the Prayers for my Child with Down syndrome Have Changed

March 21st is World Down syndrome day (WDSD). (The date 3/21 is significant because those with Down syndrome have 3 copies of the 21st chromosome.) As another WDSD comes around, I can't help but reflect on how my perspective of Down syndrome has changed over the years, especially when it comes to my prayer life.

When my daughter was diagnosed with Down syndrome at birth, I was shocked. I didn't know it was possible for a 25 year old woman to give birth to a baby with Down syndrome. I never expected Down syndrome or a heart defect to be part of my baby's life.

The diagnosis of Down syndrome was portrayed in a negative light by the medical team in the hospital after Jaycee's birth. The doctor pointed out all the "flaws" on her body that indicated Down syndrome. I was told she would have challenges in motor skills, cognition, and her everyday life. The doctor told me I would be caring for her the rest of my life.

Down syndrome seemed overwhelming. The diagnosis was more than I could take. My thoughts regarding Down syndrome were all negative, and I could barely think of anything else. All of the negativity spilled over into my prayer life when it came to Jaycee.

Early on, I prayed for Jaycee to have a miracle. Specifically, I prayed for her to be healed of the effects typically seen from the extra chromosome. I made a list of the common problems with Down syndrome some of which included: Intellectual disability, low muscle tone, thyroid issues, slow metabolism, vision and hearing problems, and delayed development. I called each of them out in prayer and asked God to intervene miraculously.

I prayed and prayed. As the months went on, Jaycee had her first of two heart surgeries followed by oxygen use at home. She was struggling with feedings and motor development. I was getting discouraged. All the while I poured my heart out to God in prayer, it seemed like God had absolutely nothing to say about Jaycee's Down syndrome and her struggles.

One day as I prayed through the list of needs for Jaycee, I felt God ask me something.
"Are you praying these things for her or you?"
The question stopped me. I started praying for healing early on because I felt God would want her to live without issues based upon many stories of healing in the New Testament.

Jaycee gets a kiss from mom before a surgery. 

However, the question forced me to analyze my motives. Why was I really praying? Was I doing it from a place of love for her or was it something else? I came to the conclusion that I was praying for myself more than her. How much easier would things be if therapy wasn't needed, if specialty physicians weren't involved, if she understood like any other child, if her muscles were strong, if medical bills weren't in our lives, and if medicines weren't part of her daily life? These things would make both of our lives easier. Perhaps, I wasn't praying for Jaycee's sake, but my prayers were actually rooted in selfishness and fear of the future found in my own heart.

As I started to adjust my prayer life, God was still overall silent on the topic of Down syndrome. How did I need to pray for her? What was God's heart on this subject?

One day, several years into my parenting of Jaycee, I felt God speak again. As I was lamenting about some challenge related to Down syndrome, God whispered to my heart, "Down syndrome isn't that big of a deal."

What?! I started to tell God why it was a big deal. It was, after all, making Jaycee's development, education, and independence difficult. There were aspects of her life that were challenging for both of us.

It was then that I really found God's heart toward my daughter. God doesn't value life as we do. He doesn't care if someone is athletic, intelligent, artistic, poetic, or verbal. He isn't bothered when milestones aren't met as typically expected either.

Sure, you may think this is your belief system too, but I believe the system of the world is rooted in us far deeper than we may realize. We all want our kids to achieve "normal" things in life (educationally, in relationships, etc.). When it doesn't seem possible because of a diagnosis, it can be hard to face a reality much different from what we expect.

God looks deeper. He looks at our hearts and our spirits. He viewed Jaycee much differently than anyone. I'm sure God was pleased with her joyful and loving nature. God must have loved my child's spirit. I am sure that Jaycee's Down syndrome wasn't really impacting her in God's view. The trials on this earth from the extra chromosome were insignificant in the long run. Her heart was right, and that was most important.

When I got a new revelation of Down syndrome, my perception changed as well as my prayers. I embraced all parts of my daughter, accepted her limits in a healthy way, and prayed less selfishly. I didn't see her as a walking list of needs. I had more grace and patience for her difficulties and less frustrations. I asked God for more wisdom to help her through challenges rather than simply praying for them to end.

Years ago, I was almost in panic mode after I heard the words "Down syndrome." I prayed so many prayers, but I never really asked God what He thought about Down syndrome. I wish I would have asked for that clarity immediately. It would have given me a sense of peace and purpose for both of our lives. Perhaps, I would have been able to see past the challenges and just see her. I wasted so much time focusing on the wrong things. Looking back, I'm embarrassed by those initial emotions, thoughts, and prayers regarding my child's diagnosis. I can be thankful that I have grown as a person and a mother.

In celebration of WDSD, I ask that each of you consider your viewpoint of those with Down syndrome, specifically when it comes to prayer. Do you see them as only someone in need of prayer? Can you look deeper and see the person that God sees?

Do You See the Value?

What's the first thing you see with my daughter?

Most adults notice right away she has Down syndrome when they look at her. Others may see that she wears glasses on her face or braces on her feet.

Most children notice within a few minutes of meeting her that she can't speak well. This, above anything else, is the thing that catches their attention and 'bothers' them the most.

Still, other children see a sweet friend.

If they look hard enough, adults may see a child who is loving and happy as they watch her hugging friends or kissing her brother.

Beyond that, what do you see?
Do you see a child with a future and hope?
Do you only see a child with needs and limitations?
Can you see her value?

I know what I see in my daughter.
I see her heart, and it's beautiful. She reflects the attitude of God more than anyone I know. She loves anyone right from the start without reservation. When she sees a child, she sees a friend even when they are uncomfortable with her. She's not ashamed to hug and kiss those she loves. She gives love without expecting anything in return.

I see a child who has worked hard to achieve many things in life. I see a child who has faced challenges, illnesses, and "bad" days better than I would have. I see a child who is driven. I see a child who has overcome.

I see a child who has benefited from programs, therapies, and schools that assist in making her life better, but that betterment of her life isn't what gives her value.

I see a child who has worth simply because she is herself.
She is a living and breathing human being. She has a soul and a mind. She has feelings, preferences, ideas, and dislikes. She has fears. She has things that make her laugh.

She loves the color green, her iPad, her cousins (especially Gabby), and her cat. She loves playing the tambourine while her brother plays guitar. She loves singing along to Skillet, Toby Mac, and the soundtrack to Beauty and the Beast. Her love of Beauty and the Beast is starting to teeter on a full blown obsession. She has a number of funny things that she does such as eating one food on her plate at a time before moving to the next food or making sure her glasses on her nightstand are perfectly parallel to her bed before she gets in it. She is amazing and funny, and I love her so much.

Where am I going with all this?

March 21st is World Down syndrome Day. The date 3/21 is a reference to the 3 copies of chromosome number 21 that individuals with Down syndrome have. Each year this date rolls around, I feel compelled to write a piece on this topic I am passionate about.

This year, I feel a bit tired. I am tired of living in a world where many people simply do not value people like my daughter. I don't know how to teach people to value her life. It seems like it is a fundamental thing, but it is not apparently.

I find that many people say they don't think life is all about getting the best education, having a high-income job, or starting a family, but it seems that these are the things that people use to judge a person's value in society in the end. There's so much more to life than those things. That's a very narrow perspective that some will surely not fit into.

Today, I ask you to look beyond what you may normally see. Look beyond the disabilities and see the abilities. Look beyond the shortcomings and see the unique aspects of a person's personality. See the love. See the human being. See what I see. See the value.

The Story of Down syndrome For Us

It’s just an extra 21st chromosome. One piece of genetic information that seemed at one time to define my daughter. Down syndrome was a huge and overwhelming diagnosis back in 2006 when Jaycee was born and diagnosed.

Time has passed, and my attitude has changed since her birth day. Down syndrome is just part of her story and ours. It is not THE story.

Here are 21 moments from the story of my family's life with Jaycee in honor of World Down syndrome Day.

1.      First ultrasound picture…It was a glimpse of my first-born with knowledge that a daughter was in our future.  

2.       Snuggles after delivery…Before we knew about Jaycee’s Down syndrome and AV canal, there were a few hours when my husband and I just marveled at our new baby without worry. We examined every finger and smiled at every movement and sound.

3.       A doctor's announcement…After waiting 4 long hours during Jaycee’s open heart surgery, I was relieved to hear that the surgery went as planned and all was well with our infant.

4.       First wobbly steps…In a physical therapy session, Jaycee took her first little steps. All those hours in therapy sessions and hard work paid off!

5.       Walking for Down syndrome…Our family teamed up to raise money for our local Down syndrome group and participated in an awareness walk. It would be the first of many times Team Jaycee united.

6.       The Best Word Ever…Is there anything sweeter than hearing a squeaky voice say your name? Nope, there isn’t! "Mama" melted my heart.

7.       First school drop off…Taking Jaycee to pre-school as a little three-year-old resulted in tears from one of us. I’ll let you guess who.

8.       Jaycee becoming a big sister…During my pregnancy with my son, I explained to Jaycee that she was going to have a baby brother soon. Right after Elijah was born, Jaycee came into the hospital room to meet him. She signed “baby” as she peered into his bed while the nurse weighed and measured him. She instantly loved him!

9.       Self-feeding...After months of occupational therapy, hand-over-hand spoon feedings, and trials of many spoons, the day Jaycee fed herself with a spoon was cause for celebration. We could eat together as a family at the same time, and she could be more independent.

10.   Second first steps…After a long and serious stay in ICU when she was in first grade, Jaycee came home depending on a wheelchair. She could not climb steps. She could not even sit up unsupported. When her strength came back slowly and she started walking again all the time, it was a gift to watch. 

11.   Jaycee, the competitor…Jaycee loved participating in the softball throw at the track and field games for our state Special Olympics competition. She kept looking at those of us in her cheering section to make sure we were all paying attention.

12.   The 3 big words…”Love you, mama!” After weeks of breaking up this phrase into simple word approximations, Jaycee one day repeated it back. It sounded like “Uh oo, mama,” but it was the beginning of this beautiful exchange we could have.

13.   School dancer…After some bravery on my part, I signed Jaycee up to participate in the yearly school fundraiser cheer leading and dance group with her peers. Jaycee knew the moves and proved she could do amazing things if I didn’t limit her.

14.   Elsa and Anna…Jaycee was fortunate to receive a trip through Make-A-Wish, which meant she got the royal treatment at Orlando theme parks. She absolutely loved meeting the Frozen cast after a show; her joy was precious.

15.   A lifelong relationship…At a family get together, Jaycee marveled at her cousin dressed up as a deer. From then on, Jaycee fell in love with her cousin, who she referred to as “Deer” ever since.  

16.   A pep rally…Jaycee’s school held an energetic pep rally for the athletes participating in Special Olympics. Jaycee ran through the lines formed by smiling cheerleaders. Instead of bursting through the paper banner at the end of the cheerleaders, Jaycee crawled underneath it. It was such a funny moment!

17.   A friend party...When your elementary school daughter wants to have a birthday party with friends, you make it happen.

18.   A Baptism…After weeks of teaching and preparation, Jaycee went through the water baptism at church like any other child. She came up out of the water smiling, just like all of us who were surrounding her.

19.   My daughter on stage…During a pageant for girls with intellectual disabilities, I saw my little girl transform into a princess and enjoy being in the spotlight. Her abilities were celebrated, and she continues to show off her crown to visitors at our home.

20.   Water coaster Enthusiast…Water coasters exist and my daughter loves them. While I scream my head off wishing for the ride to come to the end, my daughter shows no fear and laughs all the way through.

21.   Home plate with Molina…When Jaycee won an opportunity to meet Yadier Molina during a Cardinal’s game through our Down syndrome Association, there were several seats filled with our friends and family cheering for her. Molina autographed her baseball right after she did.

Our life with Jaycee has set us on a path we did not anticipate. Then again, who could predict some of these moments we have had with Jaycee. Some of them have been extraordinary, a few have been challenging, and others have been gratefully mundane.

Time has shown us that there is a full and good life beyond diagnosis day. Happy World Down syndrome Day!