July 4th 2002 was one of the best and darkest days of my life. After months of eager anticipation, days of anxiety and hours of fear, Lisa and I welcomed our son David into the world.
Lisa went in for her 36 week pregnancy check up (I almost didn’t go as they had become so routine) and the doctor told us she was measuring small–for 31 weeks! Thus began the whirlwind.
Over the next couple days we sought answers, saw more doctors, were told his small size “could mean anything” by the ultrasound doc at the hospital. I asked what she meant. Her reply? “It could be nothing. He could have a genetic disorder. It could be fatal.” Confusion and panic set in as we checked Lisa into the hospital to induce labor and play the waiting game.
In these anxious hours dear friends began to encourage us that it would all be OK. People tried to cheer us up and take our minds off of things. “I have a feeling it’ll turn out alright.” “Don’t worry, we had a scare with our first pregnancy too.” “Doctors make a big deal out things. I’m sure it will be fine.” To this day I am thankful for those people who were in the thick of it with us. Some of their words gave us false hope and even hurt for a time afterward. But, Lisa and I felt loved by our church family and close friends. They sat with us on the phone and brought Lisa El Burrito Jr. in the hospital when she wasn’t supposed to get it.
I remember cheering Lisa on as she endured labor. Both of us afraid of what lay ahead.
“Push baby! We’re going to meet our son!” I called out to her while wondering inside if our baby would come out dead or alive.
I encouraged her, “You can do it Honey! Just a little more and we get to meet our beautiful son!” All the while thinking, You have to do this Lisa! Just a little more and we learn if our son is beautiful, dead or alive.
Finally, on the afternoon of that 4th of July (Lisa favorite holiday coincidentally), little David burst forth at a whopping 4lbs 2 oz., seven fingers, ten toes notably missing the crying sounds we had heard from down the hall every few hours as new lives emerged into the world.
24 hours later we learned David’s diagnosis. Cornelia de Lange Syndrome. We had shuffled quickly back to Lisa’s room leaving our son in the N.I.C.U. while we poured out our hearts in grief, when a knock came on the door. For some unknown reason I opened the door to find Rick, one of our church elders, standing there. I didn’t know what to say, but he quickly realized he happened upon us at a bad moment and excused himself.
As I began to shut the door I realized I needed to share our awful news with someone and chased after him down the hospital hallway. “Hey Rick. They just told us a couple minutes ago that David has a genetic disorder called Cornelia de Lange Syndrome.” And the next moment is burned into my memory. Rick’s face dropped. He staggered backward until his body found the wall behind him. He looked me in the eyes, compassion on his face and said “That sucks. Steve I’m so sorry.”
Now, I know you’re not supposed to say “sucks.” I know stories like this are supposed to have some moment of profound wisdom and a turning point where everything turns out alright in the end. But this is real life. Those words have been a balm to my soul from that day until this one. Rick’s words gave me freedom to see that Cornelia de Lange Syndrome ought not to be in the world. It’s a sign that something is gravely and pervasively wrong in the world. Rick gave me freedom to hurt and weep and and question God and eventually to pick up the pieces again and move forward.
I’ve walked through many hard moments with a great number of people since those days. I’ve sat at bedsides of dying and dead loved ones as a pastor. I’ve cried with friends enduring divorce. I’ve been in the hospital with people in crisis and more. I can’t remember all my words today. I know my own temptation toward platitudes. I know my instinct to try and make it OK. Still, the best words anyone has ever said to me came at the darkest moment. “That sucks.” Best. Words. Ever.
What words has someone shared with you that spoke to your heart in a time of hurt or crisis?
Steve, Thanks for being so honest about the pain of that event. I agree, that sucks. One of the things that has been helping me during my current battle with cancer is a book. Beautiful Battlefields by Bo Stern. I talk about it in a post I wrote called Everything (http://paulblais.blogspot.com/2013/04/everything.html).
Steve, I am enjoying your posts. Thanks for writing.
Ok – I LOVE this. I’m the mom of a kid with a disability and these were the exact words I wrote to a friend of mine who was having a scary pregnancy. It’s so un-churchy and no one else would say it but still recalls it as being so healing. Just like you said, it gives permission for messy pain.
Thanks for sharing this.
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Yes! Someone said this to me after my first miscarriage, and I was so thankful that someone would acknowledge that it did indeed suck without trying to make it better. But I still find myself nervous about saying it to “churchy” people even though it’s what I’d want to hear!
Thanks for your comment and your willingness to share about your miscarriage Mandi. I agree, I have hesitated to say it at times even though it meant so much to me. I try to remember that my friend’s response was genuine and he didn’t try to filter his words. He just grieved with me. I feel like that often frees me to engage.
I have a friend who went through a similar life experience that I am currently traveling through. She is someone who seems to has it all together, the type of woman that is admired and trusted and respected. She told me that when she was in my situation she cried everyday. Like the words that you hold onto,’that sucks’ , I hold on to those. It helps me to know I am not any more overwhelmed by my situation than she was and some days that makes all the difference.
Hmm… crazy. This is the exact story I tell people about meeting my dear (and at the time) new friend. My son developed Stevens-Johnson Syndrome from Tylenol and spent 5.5 weeks in a coma on life support in the burn unit when he was 7. It was beyond devastating and we almost lost him. Since then he has had over 100 eye surgeries, just to name a few. It changed our world, it rocked our world and we even lost friends who just couldn’t understand our “new” life. Upon meeting and telling my friend about the whole situation, she just looked up at me and said “that sucks.” It too gave me the freedom to feel exactly that… For so long, people just couldn’t understand what we’d been through (and continue to), but the day she said that just sort of changed the way I was able to relate to her, to myself and others. It really was a memorable and freeing moment to hear those words. I always thought I was the only parent in the world who found such comfort in “that sucks”.
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