Special Needs

After the birth of my daughter Emma, I remember the moment I began to have some serious conversations with God about her condition. We had settled into the NICU hours after we had received the news that Emma had been born with Down Syndrome. My husband and I were in and out of shock, me dealing with the emotions and hormones of giving birth, and both us feeling like a rocket had launched us into a whole new world that we had no preparation for.

A few days into this new world, I was sitting next to Emma’s bassinet and my Bible was laid across my lap, I would read a few lines here and there and then look at Emma. The NICU was quiet with the exception of the monitors beeping. As I looked at my baby girl sleeping soundly and peacefully in her bassinet, the thought occurred to me,

“Should I pray and ask God to heal my child?”

My first thought was, “I don’t know.” We didn’t know during my pregnancy that Emma had Down Syndrome. When she was born it felt like every doctor on the planet invaded my hospital room. We had no real knowledge of Down Syndrome – what it was, it’s effects, etc. All we knew were our own stereotypes and misconceptions regarding it.

As the days wore on, I sought the Lord regarding His heart for our baby. My husband and I learned more about Down Syndrome as a whole, and Down Syndrome as it pertains specifically to Emma. We came to the same agreement – We are not going to pray for God to heal Emma of Down Syndrome.

Here are a few reasons why….

In order for God to heal, there has to be a sickness.

Down Syndrome, in itself, is not a disease – it is an extra copy of the 21^st chromosome. Scientists and doctors call it a chromosome abnormality, birth defect, or mongolism and that it causes a slanting of the eyes, small ears, and shortened height with a looseness of the joints.

I call it the reason why Emma has her beautiful blue almond-shaped eyes, her cute little stature; and thanks to her loose joints her body seems to melt into mine when we cuddle. To ask God to heal Emma would be to ask Him to change the very essence of who she is – the Emma I have come to know and love. On its own, if having Down Syndrome is the reason why Emma has these characteristics, I could never ask God to change her.

One of my favorite quotes is from the former University of Alabama head football coach Gene Stallings, whose son, Johnny, had Down Syndrome. He sums it up perfectly,

“If the good Lord asked if He could give me a perfectly normal child or Johnny, I’d pick Johnny every time, no doubt about it.” ~ Gene Stallings

Running in the Pentecostal/Charismatic circles that we do, on more than one occasion I have found myself in a situation where someone asks to lay hands on and pray for Emma. What I have learned is to always ask, why? While our family is appreciative of the ongoing support and love we have received from our spiritual family, I have learned that many people are just as misinformed about Down Syndrome as I was. These situations always open the door to inform people exactly what Emma needs prayer for, and usually a quick education on what Down Syndrome is, and is not.

Let’s take a moment and talk about ways that you can pray for individuals with Special Needs

I don’t want to gloss over the serious medical inclinations that can be present in children with Down Syndrome and many other children with serious Special Needs. Individuals with Down Syndrome are more likely to have heart defects, intestinal issues, visual and hearing impairments, thyroid problems and cancers like leukemia. These are medical issues that can happen to anyone and the degree to which they affect children with Down Syndrome varies – there is no poster child for Down Syndrome. What one family may encounter with DS, the next family will most likely have another unique experience. Most families are open about talking about the various medical issues their child with Down Syndrome faces and would welcome your prayers and support.

That being established, I do ask the Lord to continue to heal Emma of the various medical issues she has encountered. The two most noted issues for Emma specifically are her thyroid and her heart, both of which are being monitored. At this time she is off of her thyroid medication and her heart has been “healing itself” – words our cardiologist used at our last appointment. Yay God!

Made in His Image

As it turns out, Jesus had plenty to say about people with ‘disabilities’. The most noted is found in John 9:1-5 (MSG).

“Walking down the street, Jesus saw a man blind from birth. His disciples asked, ‘Rabbi, who sinned: this man or his parents, causing him to be born blind?’Jesus said, ‘You’re asking the wrong question. You’re looking for someone to blame. There is no such cause-effect here. Look instead for what God can do’.”

Some 2,000 years after this conversation, blind people can read, write, and live independent and productive lives. So what’s changed? God or the human systems we created for people who do not meet our definitions of perfection? Did God heal the blind man because He considered him to be defective and disabled? Or did He already see the man as effective and abled, and out of compassion Jesus healed the man so he could be free from the defective and disabled system we had placed him in?

Forty years ago it was common and expected for parents to place their Down Syndrome child in an institution. There they received little or no education, basically cared for and tolerated during their existence. There was no expectation for them to graduate from college, get married, live independently or have a career.

Thankfully, heroes before me started to keep their children with Down Syndrome home. They started celebrating them instead of tolerating them. They educated them, encouraged them and let them dream. Now it’s becoming more common to see people with Down Syndrome lead productive lives. They are getting married and going to school and college. They are entrepreneurs and athletes. They are leading productive and independent lives just like God always knew they could. He just needed us to set them free, to start asking the right questions, and for us to be looking for what He could do through them.

People with Down Syndrome seem to have a higher ability to see the good in everyone, to love unconditionally, and they generally have a 97% acceptance rate of who they are – sounds like a lot like Jesus if you ask me.