“How do you do it all? I can’t imagine what it must be like to have a child with special needs.” People say things like this to Lisa and I a lot. Having a child with special needs—our son David has Cornelia de Lange Syndrome—has taught me a lot about myself and the world. The truth is, I “do it” through a fair amount of complaining. I’m a complainer.
I used to think that when Lisa tells me not to complain, she’s just being Pollyanna about the world. I grew up with a British mom, around British adopted family, and have always loved spending time with my British relatives. One of our favorite pastimes is what my cousin calls “moaning.” Actually, he says it’s the British pastime—like baseball in the U.S. This is one reason I feel like I’m with my people when I visit England.
Most of my friends (when I say ‘most’ you should read ‘all,’ I just say ‘most’ because that sounds more credible—you’re not supposed to use allness statements) have confronted me about my complaining. I remember as a freshman at Biola University going across the street to play Frisbee golf. I was hot, stressed out and annoyed. I guess I didn’t keep it to myself because my buddies taunted me singing “I have joy, joy, joy, joy down in my heart!” It did not make me feel joy.
There was also the youth leader when I was in high school. It was day 4 of my first Mexico mission trip. He was always upbeat and encouraging—I liked that about him. One day I was going on about how tired I was and I didn’t think it was fair that another team got showers and we didn’t. He just looked at me and said, “Steve, can you just STOP complaining for five minutes!?” (I think that was the first time someone called me out for complaining.)
Then there was my college girlfriend I wanted to marry. She broke up with me because I complain too much. She spent one miserable Fourth of July with me and my family and that was it. “Those fireworks were awful.” “Those people don’t know what they’re doing.” “And there were so many people.” It was bad enough to hear me do it, but hearing that I’m from a family of complainers made her see the problem was systemic. That was that.
None of that was enough for me though. All that happened years before the Sting concert I attended with my wife Lisa, her sister and my brother-in-law. From my perspective we were too far back from the stage (I’ve “seen” Sting in concert, but he was the size of an ant. They realistically could have put any guy on the stage and just played his CD’s.), the seating was uncomfortable, the food was no good, and I got to such a bad place I couldn’t pull myself out of it.
“Why can’t you just make the best of it and have fun?” Lisa asked.
“That’s totally bogus! You know it sucks. Why can’t you just say so?” I replied.
“Why do you have to be so miserable and ruin it for everyone else?” She asked again.
“What do you want me to do? LIE?! When something sucks, you say it. That’s part of it.” I said.
It’s fair to say I didn’t make myself popular as a brother-in-law that night. Or as a husband. No one was very happy with me and I just went away smugly justified that I was the only one who could see we got ripped off. I still didn’t get it.
Here’s the thing. No one likes a complainer. Not even the complainer himself. As I think about the years Lisa has put up with me and my complaining, I can’t believe she’s still married to me.
It’s funny, but this is one area of my life the Lord has confronted over the years through having a child with Cornelia de Lange Syndrome. David has CdLS. It’s not going away. It sucks. There are times, days even, when I feel ripped off. When I feel he’s been ripped off. When I feel Matthias has been ripped off. When I feel like Lisa has been robbed. Sometimes I feel like I’m going to lose it if I hear David scream any longer with GI issues. But CdLS isn’t going away. It’s not the way it’s supposed to be, but it’s the way it is. The only thing we can do in the midst of it is do our best to dignify and love David. We have to soak up his precious smile, his rolling belly laugh when he gets silly. We have to celebrate seeing him intentionally dribble a soccer ball while holding my hand. We rejoice at things like bowel movements because it means everything’s working and he’ll have a better day.
These moments point to the brokenness of the world. There’s a lot to complain about. God made the world one way, but we’ve made it another. (I always puzzle at people puzzling at “How could a loving God let bad things happen?” As if God screws up the world instead of us!) But God is redeeming and restoring the world through his son. One day, we’ll be able to listen to concerts close to the performer. The food will be great. One day the fireworks will be fantastic and we’ll have great seats for that too. One day David won’t have CdLS and his tummy won’t hurt anymore. We’ll talk with our son in a way we can’t now.
If that’s the story we live in, why not make the best of it now?
WOW. You said it so well. I love reading your blog.
Thanks Laura! I really appreciate your encouragement.
You gave me tears Steve. That’s beautifully honest. Some of us (me) like to complain about stuff far less unjust as having a child with CdLS and feel justified in doing so. In the end, it IS a mind set, or a heart-set really. Fill your heart with joy and you’ll find less and less to complain about.
Thank you for bringing me into perspective my friend…sometimes you just need a punch back to reality 🙂
I love that Sheyna, “sometimes you just need a punch back to reality.” That’s a great way to say it! Thanks for sharing!
So good. So true. Thanks for being honest and sharing your heart. I love you.
I hope that is Lisa Leonard and not another Lisa.
Thanks for sharing. A lot of us can relate. Chosing joy.
Wow. I have been called many times a Pollyanna I think because I try to choose happiness and joy. Thank you for sharing this!!!
We need Pollyannas in the world–don’t give in to us cynics Melody!
from one complainer to another, thanks for sharing your story. we all have choices. choosing to make the best of what we have is a very powerful and humbling choice.
Good to know I’m not the only one! Thank you for sharing with us.
I had to write this sentence in my journal: (I always puzzle at people puzzling at “How could a loving God let bad things happen?” As if God screws up the world instead of us!)
Very profound!
Well I for one feel a little disappointed–I can’t remember ever having heard you complain! 🙂 Some good thoughts here for sure. Miss you guys!
I went through a Keith Green phase in my 20’s, anytime life sucks which is a lot when you have a special need kid I always think of the song Joy in the Journey. Last night I was feeling blue and just simmering in how thankless parenthood is. But the truth is that I didn’t have the kids to be apprecIated or thanked, I was called to it by God to shepherd these little creatures on their journey and really most of the time I feel like it is more about what I’m learning as a person and not them
Wow! I am a huge Lisa Leonard fan and always love her heartfelt and honest posts, especially the motherhood posts. Now, I am a Steve fan! That was so great to read! “Outsiders” always think that things are perfect when really, perfection doesn’t exist. The kind of bloggers I admire most are the ones who can write as eloquently as you just did and convey such emotion in their publications. The kind of people I admire most are those who “keep it real”. Life sucks sometimes and other times it is the most amazing and beautiful journey ever. So, complain sometimes if ya want. And other times embrace it and accept it and smile and move along.
Dropping in today for the first time. FringeGirl put me on your trail. Thanks for the good word, bro. I’m going now to sign up for regular updates. I’m sure I’ll be back commenting soon. Thanks for this.
Awesome Michael! Thanked for coming by–I look forward to “meeting” again!
Good stuff, Steve. Keep ’em coming.
I a going to smile everyday and be thankful for what I am blessed with. I am going to pray for a life closer to God and pray for your family : )
Maybe it’s my British blood, but I can certainly be a complainer too (and our youngest seems to have inherited the trait as well).
When Dean and I were first dating he got tired of being regaled with my woes. When I started in with what was wrong with my day, he’d ask, “What’s good about it?” I hated that question! I felt perfectly justified in detailing what was wrong. The question didn’t go away, so I started thinking ahead to something “good” that I could say in response. Eventually the “what’s good about it” came more naturally (I’ve even been accused of being an optimist!). I still have to check my tendency to complain, but it is a good exercise to find the “what’s good about it” alongside.
Funny how God pairs us with the people we need to help us overcome our weaknesses! You two are a great team.
What a lovely story. My son had Deuchenne Muscular Dystropy and passed away at Christmas 2002. People used to say my life was so hard- 24 hour care, practically no sleep for years, living in the hospital for months at a time etc but I also had a job which kept me sane working with children with special needs. I would say to people ‘how come you think it’s my life that’s hard? I’m not the one suffering’. It was a joy to be with my son, his dry sense of humour, his ability to look at the good in life, he did not moan or complain even when he was dying. I am a little harder now when people moan they have a cold or a sore throat I think ‘is that all you have to complain about’ we have no idea how lucky we are. Yes I would give up everything I have to spend one more day with my son but that is selfish he is probably muc better where he is now. And that is the core of the matter we are selfish as a race, we are always hard done by, we always expect and want more, be happy with what you have not what you have not, my answer to anyone who said my life was so hard and I deserved better was always ‘there is always someone else who’s life is harder just look around’.
Cheryl, Thank you for your thoughtful comment. I’m sorry for your loss of your son. It touches a nerve for me. I know what you mean about not being the one suffering. So many times, Lisa and I feel as though we would like to be the ones in pain instead of David. We want to take it from him. Instead, as parents, we have to helplessly watch them fight their battles. I love that you highlight your son’s sense of humour too–David loves to laugh and adds so much fun and delight to our family. It makes me long for the day “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”
And you didn’t even mention “road construction persecution” when you were convinced Cal Trans followed your mailing address and ripped up roads wherever you lived! You have come a long way, my friend. Thanks for your honesty!
Hi Stephen (and family). I came across your blog today and wanted to stop by and say “hi”. I’ve recently started my own blog about life with Hannah – our scrumptious daughter, age 4 – who also has CdLS. You’re SO right, CdLS sucks…but we’re very blessed to have her in our life. Loved the mention of us Brits having a good moan….so true! Looking forward to reading your future posts. Best wishes to you all. Anne (mykidlovesbroccoli.wordpress.com)