When the Doctor Says Down Syndrome

 "As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him." John 9:1-3
There are certain challenges that come with raising a special needs child. There are also incredible blessings. This is an honest, raw, hopeful read from one mother's perspective.

Life before Jackson

About 8 years ago my husband and I were in Walmart, and we passed a young couple with the cutest little girl in their cart. Her blonde pigtails bobbed as she looked up at me with her blue, almond shaped eyes. I could tell as soon as she looked at me that she had Down syndrome. 

The first thoughts that went through my head were, “Oh my goodness, she is so cute,” and then my mind went to, “I hope we don’t ever have a kid with Down syndrome."

My son, Jackson, was born probably 2 years after I saw that little girl. 

He was 3 months old when we found out he had Down syndrome, and it changed our world. (You can read a little bit more about that HERE.) 

I don’t think I would be making assumptions if I said that people have probably had the same thoughts I had 8 years ago when they see us with Jackson. 

I've seen people look at us with pity. 

I’ve seen people look at us as the wheels were turning in their heads, probably trying to figure out what I did wrong while I was pregnant that we had a child born with special needs. Wondering what sins we committed to be given a disabled child. 

I am sure that people asked themselves something similar to what Jesus’ disciples asked him, "who sinned, this child or his parents, that he was born with Down syndrome?”

Learning of Jackson’s Diagnosis- The Blame Game

When we found out about his diagnosis, I was scared, confused, and angry. I had no idea what life would look like. This was definitely not what we had imagined or planned.

The world doesn’t portray someone having a disability as some great, meaningful thing. 

Even Jesus’ disciples, his own students, assumed that the blind man’s parents, or even the blind man himself, did something to bring on his disability. 

So when you learn that your child has a life-changing diagnosis, it’s not odd to believe that it could have been you that brought this in your life, that it could possibly be your fault. 

Your mind tries retracing your steps trying to find the mistake or sin:

  • Was it that caffeinated latte? 
  • Did I eat too much sugar? 
  • I thought I only changed the cat’s litter box once. 
  • I microwaved my lunch meat. I pray. I go to church. I don't lie. 
  • I'm a good person. 
  • Did I not have enough faith? 
  • What did I do? 
  • What didn’t I do? 
  • Could I have prayed differently? 
  • Did I do this to my child? 
  • Who sinned, this child or myself, that s/he was born with ____________?"

What I struggled with most was thinking that it was because I wasn't good enough. That my child was being punished for my lack of faith. Maybe I didn't pray the right way. Maybe I didn't go to church enough. Maybe this was a result of my sins. This could have been my fault. 

My son would struggle his whole life because of me. Talk about feeling like you've failed your child, I felt it. 

My first mistake was viewing my son’s diagnosis as a punishment. If this was a punishment, what would that mean?

It would mean that this was all about me. That isn’t true.

It would mean that Down syndrome was a bad thing. That is also not true.

It would mean that God punishes us because of our sins. Which is definitely not true because Jesus took the punishment for our sins already. That price is already paid. (Romans 8:1)

So, why then? 

If there has ever been anything that I have struggled with it’s why Jackson had Down syndrome. 

There are a lot of things in life that go unanswered, but I really believe that Jesus answered this question for us. When His disciples asked him why the man was born blind Jesus replied, 

"Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” 

I could sit and think about it all day long and bring up more in depth and complicated questions and scenarios, but it would really be pointless. The absolute fact of the matter is God had important plans for him, plain and simple. So important that he intervened at the first splitting of his cells.

I love The Message translation of this verse. 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.” 

I think that this really encompasses a lot of the feelings that come with having a child with special needs. Asking why is the wrong question, and its only purpose is to look for someone to place the blame on, whether it’s yourself or God. 

It’s hard to grasp, but sometimes there just isn’t someone to blame because what’s happening isn’t wrong. Instead of trying to find someone to blame for what we felt has been done to us, like Jesus said, we should look for what God can do.

Life with Jackson- For God’s Glory

Now what I’ve been looking forward to the most: I’m going to tell you about my son.

Jackson is the light in a room. 

He literally draws people to him wherever he goes, like a moth to flame. When he walks in a room, you see him because he's smiling ear to ear. You hear him yelling and laughing with joy because, he might not know who you are, but he’s happy to see you. 

It’s almost impossible to be around him for 5 minutes and not smile at least once. 

Seriously, I dare you to try. 

He is a goofball. He loves to sing, dance, and make people laugh. His favorite food is French fries, and he really loves his daddy. He notices when you're sad, and he'll try to cheer you up. He loves babies. And very recently he's deathly afraid of flies (I'm really looking forward to when he's over that. Do you know how hard it is to avoid flies?). 

He’s an absolute joy to be around (I mean, most of the time. Let’s not kid ourselves…he’s still a 6 year old little boy. I won't tell you how many times I’ve watched Curious George Halloween in the last few months. And it’s July, guys).

You may have just read that and thought to yourself that I described any child, and I’ll give you that. A lot of kids love to sing and dance and act silly, but Jackson interacting with people is something you have to see yourself. 

The way he works a crowd is truly a thing to witness. 

If I let him loose in a full room, he will be drawn to certain people. He’ll be handing out hugs, up on laps, charming the pants off anyone that he encounters… and he means it. I truly think he just likes seeing people smile.

When we’re in a store, we have had people just walk up to us to look at him and hold his hand, not really saying much except how cute he is. It’s like all they need is to be near him for a few seconds. 

It never fails that everywhere we go, at least one person is drawn to him, and they always walk away smiling. I know it sounds like a mom talking about her son and how special he is. I’m definitely not trying to claim he has any supernatural or angelic gifts, but he is an extraordinary kid. I think anyone that’s ever met him could tell you the same thing. 

I've said it many times to my friends, if God told me today that he'd take Down syndrome away right now, I'd tell Him no. 

My son has been my son from the time he was conceived, and that includes Down syndrome. God made him the way he was supposed to be because he has a purpose in life. He is who he is, so the works of God can be displayed through him. 

When we first found out, I won’t lie and say it didn’t feel like we were grieving the child we thought we were having. 

For months we made all these plans for what our “normal” son would do as he grew up… and within a few seconds it’s like it was ripped out of our hands. 

Down syndrome was never NOT part of the plan. 

God knew before Jackson was even conceived that he would have Down syndrome. 

He’s always been the same child we loved. The same child we loved when we found out we were having him. The same child we met in the hospital. The same child we learned had Down syndrome. 

There’s never been a point in time where he was anyone different. 

And we love him just the same now as we ever did. No, I take that back. Probably more. 

Did I mention how charming he is?

A mother’s reality of Down syndrome

I’m going to take a second and say some things that make most people uncomfortable... 

  • My son will never be president.
  • He'll never be a lawyer or a famous brain surgeon.
  • He will never cure cancer or be a rocket scientist.
  • He will never have children, and
  • it’s extremely possible that he will never even live alone.

I have said that to people before, and I always get the same sweet, well-meaning response of, “Oh, you never know what he can accomplish.” 

And I usually follow up with a, “No, I do know. There are some things he just will not do.”  

That’s almost always met with a look of pity for Jackson because his mother doesn’t believe in him. But listen, I have pictures of his chromosomes, and the fact is he has Down syndrome. 

I’m not going to pretend that he doesn’t. I’m not holding out my hopes that he’s going to become the next Ben Carson, changing and saving lives because he’s an extremely gifted surgeon. 

I do believe in Jackson with all of my heart.  

I will be rooting for him every single step of the way doing anything and everything I can to help him, but physically and mentally Down syndrome will limit the things he is able to do. 

What it doesn’t limit is his heart and the way that he interacts with and affects other people. If anything, it enhances those abilities.

The other fact I know is that he will do just as much good, accomplish just as much and change just as many lives as if he were to do any of those other things. Maybe even more. 

I am 110% positive that he will change lives, hearts, and perceptions. I have already seen him do it. (You can read about it HERE.) He changed his family. He’s changed our friends. He has changed our perceptions of disabilities. 

He’s opened our hearts. He’s made us more considerate, empathetic people who watch what they do and say and care how those things will affect others. He’s helped us realize that just because someone or thing is different doesn’t mean it’s wrong or defective. He has increased our faith in God. 

He’s shown us that just because some plans aren’t what we had in mind doesn’t mean they’re bad. 

Jackson may never do things that seem like huge accomplishments on paper from a worldly point of view, but I believe with every ounce of my heart that from a heavenly standpoint he will have achievements and successes that we could probably never even begin to fathom. And that is something that makes me more proud than a degree from Harvard, a mansion, or a Nobel Peace Prize. 

I fully believe that Jackson’s purpose in life was to have the works of God displayed in him, just like Jesus said.

Learning love through disability

If you’re reading this right now and you have a child nearby with any type of disability, and you’re struggling with the why’s, the hard days, the things that may or may not ever happen, and a plethora of other hard things that come with having a child with special needs, I don’t want to claim to have any concrete, definitive answers on why things happen, but please remember this: 

Jesus’ own disciples thought what the world tells us was true--a disability is a defect caused by a wrong and should be addressed, removed, and disregarded. But Jesus tells us it’s the opposite… "this happened so that the works of God might be displayed in him.”

We can’t trust the world or its views and perceptions. 

Sometimes we can’t even trust our own, but we CAN trust Jesus. God's ways are not our ways.

Just because something isn’t recognized as desirable, normal, or easy doesn’t mean it has no meaning or purpose. It might just mean that it has more. 

Don’t let the world tell you what’s good, right, or normal. It’ll lead you wrong every time.  

There are certain challenges that come with raising a special needs child. There are also incredible blessings. This is an honest, raw, hopeful read from one mother's perspective.
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Neely Beattie

Neely is a wife, stay-at-home mom, and photographer in Southwest Missouri. She loves Jesus, laughing, sarcasm, flannel shirts, a hot cup of coffee and a good book. Neely is drawn to the quirky, weird, and random things in life and can find something funny in almost any situation. With a bachelors degree in graphic design, she has found another way to funnel her love for creating: using bible journaling to share God's message. What began as a personal commitment to soak up God's word by using art, has now become a way to encourage and uplift others. When Neely isn't doing any of the above things, she can usually be found binge watching shows on Netflix or texting her sister-in-law funny pictures she found on the Internet.