Not so long ago, I received an out-of-the-blue text from an old college friend asking if I was available for a phone call. Our lives had overlapped heavily during our post-secondary years, sharing classes, social circles, and living spaces. However, in the ten years since, our relationship existed primarily on social media. Still, she is the kind of person I am always happy to hear from.
Excited to connect, I shared my availability and inquired, “What’s the topic of discussion?”
“Down syndrome,” she responded.
Hastily, I typed back, “Ooo, I’m excited!”
What It's Like to Have a Sibling with Down Syndrome
As it turns out, a new family member with Down syndrome had just been born into my friend’s extended family. As is normal with the unexpected and unfamiliar, the diagnosis brought with it a full range of emotions and concerns.
This gal pal reached out to me because of my own personal experience. My youngest brother has Down syndrome, and she knows from all the time we spent together that Max is one of my favorite people in the world.
First Came Fear
When we were able to connect on the phone later that day, my friend confided, “The fact that you were able to say you were excited in response to the subject of Down syndrome brought me so much comfort.”
I was happy to hear that and completely sincere in my excitement.
However, the truth is that the news of my brother having Down syndrome was not something I was initially enthusiastic about. In fact, it was quite the opposite when he was born.
I was nine years old at the time, which was old enough to understand what “Down syndrome” meant, at least on a basic level. I knew his capabilities would be different from mine and my siblings, and I felt all the negative emotions when my dad shared the diagnosis with us.
Fear. Confusion. Anger. Bitterness. Resentment. Fury.
I remember vehemently asking God how He could let something like this happen to my family. I feared what it meant for the rest of my life, both personally and for the whole family unit. I was worried that Max was going to somehow hold us back and suck fun and flexibility out of our lives.
For the first time in my life, I was experiencing what it was like to be truly angry with God.
A Different Kind of Fear
But then, a different fear struck.
Like many babies with Down syndrome, Max was born premature with a myriad of health issues and spent a substantial amount of time in the NICU. The children’s hospital was about two hours from my hometown and my parents spent a good amount of time there with Max and away from us.
One night, my dad called. I do not remember the specifics of the conversation, but I remember the news was bad—so bad we were afraid Max might not make it through the night.
At that point, weeks after his birth and diagnosis, my siblings and I had not even met Max yet. The gravity of reality flipped a switch inside me. My fear of living with Max turned into a fear of living without him. I turned to God in prayer and begged him, “Please don’t let Max die.”
Then Came Growth
Max made it through that night, and the twenty-three years since. And all the things I was worried about as a nine-year-old ended up not being much of an issue. Things were certainly different, but that’s true regarding any new sibling that comes into the world. Max has not held any of us back at all. In reality, his life has been transformative and life-giving for the family. That’s not to say every year and season has gone unchallenged. Hardship is always present in everyone’s life. However, in the midst of every challenge we face with Max, there is also this magnetic joy that draws one into the present moment and detaches you from everything else.
Truth be told, I have no negative memories of growing up with a brother with Down syndrome (except for the one in which I watched his middle school classmate ignore him at the mall). Max brought so much joy into the lives of my siblings and myself that he was often the topic of conversation brought up among our peers, and he almost always accompanied us on our social outings. We simply loved being around him– and our friends did, too.
What I fear I am failing to express in this post is the immense level of happiness that Max brought into my life, and this happiness would not be present if he did not have this extra chromosome. I cannot pinpoint what exactly it is about Down syndrome that makes it so; however, thorough studies conducted by Harvard support this claim.
According to their research, 88% of siblings surveyed believe they are better off because of their sibling with Down syndrome, and 94% experience feelings of pride. Similar findings occur for parents, other family members, and the individuals themselves. Check out:
- Having a brother or sister with Down syndrome: perspectives from siblings
- Having a son or daughter with Down syndrome: perspectives from mothers and fathers
- Family perspectives about Down syndrome
- Self-perceptions from people with Down syndrome
What to Be Aware Of
Having lived within a community with many individuals with Down syndrome for over twenty years now, I have heard many stories and seen many comments and assertions online. Far too often, Down syndrome is presented as something to be feared, something that causes suffering, and something that lowers a family’s quality of life.
I can say, with confidence, experience, and research to back it up, that this is not the case.
Certainly, change is a part of the experience. Often there are some health issues at the start, as well as life-long learning hurdles. However, all of these can be overcome, and more importantly, there are far more important things of which a person should be aware when it comes to welcoming a family member with Down syndrome.
Ultimately: life is about to get better than you ever could have imagined.
My experience with Max as a brother transformed me in such a way that if I was ever to be told that I was expecting a child with Down syndrome, my initial reaction would be pure delight. It would then be followed with some human anxieties about the child’s health, medical bills, and the initial emotional welfare of my other children (because I’m not that holy yet). However, this time my prayer would not be, “God, how could you let this happen?”
Instead, it would simply be a heartfelt surge of trust and gratitude as the joy I feel even in this imaginary scenario leaves me speechless.
That’s just one of the countless ways having a brother with Down syndrome has changed my life.