My big brother has Down Syndrome. That’s Down Syndrome, not Downs Syndrome.
Jim is 21 months older than me. He’s 48 years old now. (Go ahead, do the math. I know you’re going to anyway.)
I was oblivious to the fact that he was “different” until I entered kindergarten. I learned a new word on the bus. I had no idea what it meant, but I’d heard how the older kids were using it and, as kids will do, I chose to practice it on my big brother while we played Tiddly Winks on the den floor.
“You’re a reee-tard.”
Mom had bionic ears.
I have a vivid memory of Mom sweeping me up and into the bathroom where she sat me on the counter and asked me what I knew.
“I know NOTHING!” (Jim and I were avid fans of Hogan’s Heroes reruns. This time, read it with the accent.)
I remember Mom telling me the ways Jim looked different and learned differently. I had never noticed. He was simply my brother.
I never used that word again.
[Tweet “Mom said Jim had #DownSyndrome. I hadn’t noticed. He was simply my brother. #parentingspecialneeds”]
I have stories I could tell that might fill a book. Stories about how Jim had a tendency to fixate on something – a thought – a critter – who knows what – and wander. Stories about how that tendency could strike fear in the hearts of a farm family like ours or turn an entire campground (or two) into an uproar.
Those will have to wait for another day – another post – as I’m not here to tell you stories about Jim today. Instead, I want to tell you what I’ve learned by having him as my big brother.
Lesson #1 ~ I’ve learned to love fiercely with few expectations, because Jim loves like that.
My family lives nearly 3 hours away from my siblings and parents; and we have three teenagers and busy lives. I’m undone as I write this and think of how infrequently I make a point to call Jim just to hear about his recent bowling score or to get a rundown on the MN Vikings, about whom I think he knows everything there is to know! Regardless of my inattention and shortcomings, Jim prays for me and my family every. single. day.
Me: “I’m sorry I haven’t called you, buddy.”
Jim: “Oh, that’s okay. I love you anyway.”
He is over the moon when we get around to calling him and insists that we pass the phone around to everyone in our family. Then he proceeds to say the exact same thing to each of us – and no one minds a bit. We hang up the phone happier and more humble than we were before we called him. We have no expectations from him. He has none for us. We simply love.
Lesson #2 ~ I’ve learned to assume the best about others.
Listen, I do not know anyone who has been a bigger fan, for as many years, as Jim is of the Minnesota Vikings. With “his” team and his people, he truly only focuses on the best about them. Even when the Vikings have a miserable season, Jim will still cheer with absolute certainty that his team can still make it to the Super Bowl. (This is no time for wisecracks about the Vikings. For Jim’s sake, show some respect, people!) The thing is, Jim is that way about everyone. I don’t believe I’ve ever known him to be suspicious of someone, let alone critical or judgmental. It is simply his nature to assume the best about others, whether they’ve done anything to earn that level of confidence or not.
Lesson #3 ~ I’ve learned that God specializes in good looks in all His people.
When Jim and I were about Jr. High age and our younger brother Dave was in elementary school, we went to McDonalds for dinner one night. Our family was sitting at a table eating our meal. We weren’t being loud or doing anything to draw attention to ourselves. Nevertheless, a woman at the table next to us was openly staring at Jim. It didn’t take long before the rest of the family was uncomfortably aware of the situation. We exchanged glances and may have mouthed, “Unbelievable!” or “How RUDE!” Jim continued to eat his burger and fries, seemingly unaware. Seemingly.
I recall that we were not done eating yet, when Jim – saying nothing – sat up a little taller, pulled his neck back slightly, then thrust it forward and opened his eyes really wide (picture bug-eyed) and STARED that woman DOWN! We absolutely lost it! Then we did make a scene – laughing, cheering, and high-fiving Jim. In seconds, the only thing left of the woman was a thin trail of smoke she left as the McDonald’s door hit her in the rear-end on the way out.
Here’s the point. We are ALL made in God’s image. Period. Jim too. That means he’s perfect just the way he is. Unlike the rest of us who are quick to make self-deprecating comments, I’ve never heard him complain about the size of his nose, slant of his eyes, little ears, or the deep crease across the palm of his hands. I’ve never heard him say anything about his appearance other than to give a confident nod in the mirror followed by a smart, “I look gooood” especially when he’s primping for church or a Vikings’ game. Yes, he does look good. He looks like my brother.
Lesson #4 ~ I’ve learned that TIME is a gift.
Every time I see or talk to Jim he asks when he can come to my house. He doesn’t seem to count all the times we come home to Mom and Dad’s and he comes out to stay or see us. Nope, he only cares about coming to our house. He doesn’t necessarily want to do special things, he just wants time with us. When we can arrange for him to get off of work (he’s busy too!) and we are all around, we make a point to clear our calendars, so we can BE here with him. It’s a gift – to him – and to us.
Jim has early onset Alzheimers. It’s apparently quite common in people who have Down Syndrome. Time has different meaning now. He may not remember what we had for breakfast, but he remembers when we’ve taken the opportunity to slow down and spend time with him. Who doesn’t? Now is not forever. Cherish now.
Lesson #5 ~ I’ve learned to live the motto: He ain’t heavy, he’s my brother.
I can’t imagine our family without Jim. In fact, I’ve often been heard to say that I don’t know how a family is complete without a child with special needs. It’s all I have known. There are things we did differently than other families, but more things that we did exactly the same. If my parents modified things in order to accommodate Jim, we didn’t usually notice. It was what it was.
I had a mug that I was given by my grandparents after they visited Boys’ Town in Omaha, Nebraska. Boys’ Town’s brand is, “He ain’t heavy, Father … he’s m’ brother.” I have no idea what happened to that little mug, but I’ve never forgotten the motto. I claimed it as soon as I heard it.
Having a brother with Down Syndrome wasn’t ever a burden – it’s never felt like a “weight too heavy to carry,” nor is it a burden today. (I believe I can say that today because of the grace and wisdom with which my parents handled having a child with special needs and how they parented all of us.That, too, is for another post.)
Was it hard? Sometimes. Yes. (My front tooth is partially fake, because I defended Jim on the school bus once and the bully I may or may not have hit was bigger than I was and later she hit harder on the playground, resulting in a less-than-graceful face plant on the asphalt and a broken front tooth. Mine. )
I think I learned something incredibly special about carrying the load for others, not from Jim, but because of Jim. You see, we haven’t carried Jim on our own all of these years. Our arms have been lovingly held up by the strong arms of the Almighty. Jim belongs to Him, and when He chose the Hibma family to bless with Jim, He committed to bear us up with His strength, upon which we’ve come to depend. That experience allows us to bear the burdens of other brothers and sisters-in-Christ whom God has given us to love and carry – and in return to be loved and carried ourselves.
I may have earned 2 bachelor degrees and 2 master’s degrees, but some of the most important lessons I’ve learned weren’t gained by reading a book or writing a paper. They weren’t taught by scholars with numerous ostentatious letters behind their name. My teacher was my brother. He’s simply “Jim.”
[Tweet “I’ve learned to live the motto: He ain’t heavy, he’s my brother. #DownSyndrome #LifeLessons”]
(I memorized the following poem when I was in high school Declam [speech competitions]. It’s not exactly PC for today, but consider that it was written in 1981. All’s grace, right?)
HEAVEN’S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It’s time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he’ll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won’t adapt,
And he’ll be known as handicapped.
So let’s be careful where he’s sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they’re asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they’ll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN’S VERY SPECIAL CHILD.
by Edna Massionilla December 1981
The Optimist- newsletter for PROUD Parents Regional Outreach for Understanding Down’s Inc.
This is a beautiful tribute to your brother and your parents, Vicki, I remember when you first told me about Jim. Your eyes lit up with love and pride. You are blessed to have each other. Thank you for reminding us all that different makes life richer.
Thanks for making sure I read this Vicki – I am, well, you know….you said it all so well. Tears in my eyes…lovely, well written, truthful, from the heart, from reality and first-hand experience. I always say that Jenna and people with Down syndrome, or with special needs came to teach more than they came to learn. I am sorry to hear about Jim’s Alzheimer. It is very common as you mentioned with people with Down syndrome. Thank you for sharing your stories and bringing truth and encouragement to many.
Vicki, what an awesome post! Jim is such a great guy! I have lots of memories of him in high school! We used to have a lot of fun with him and Bruce! Sorry to hear about his early on stages of Alzheimer’s. A very special tribute to a very special family!