Thursday, March 21, 2019

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?

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