Tag Archives: David

Whatever the Future Holds

“Did you ever think you’d be carrying your 18 year old on your back?” Lisa asked me this weekend. I didn’t. With David 18 going on 19 this summer we have been facing many experiences and questions I never really considered. We filed a conservatorship for David this year empowering us to make legal decisions on his behalf. In the process we were asked our transition plan for his future care.

Now that Matthias is finishing his junior year of high school, it brings to life how our little boys are no longer little. In Matthias’s case it’s more obvious, with driving lessons and discussions about college. With David, still physically little, still requiring so much care, still facing severe medical risks from time to time, it’s easy to think of him as our little boy. He still likes cuddles and silly childlike play. But the truth is, the day is coming when we will have to rethink his adult care.

Our approach to raising David has always been to help him realize his potential, to let him show us who he is and what he can do, and to do our best not to limit him. We have traveled the world with him, hiked with him, gone on adventures big and small. We encourage his love for music he shares with me. We encourage his love of exploration and getting out. We laugh with him and his amazing sense of humor.

To be honest, I don’t know what the future holds. I’m still a dad trying to grasp the questions rather than having all the answers. In the meantime, no I never thought I’d be hiking with my 18 year old on my back, but whatever the future holds I want my son to have the richest fullest life he can have. Whatever I can do to that end, I will.

David’s Journey

Last Friday was the one year anniversary of David’s spinal fusion and the day the world shut down. It’s hard to put into words what we experienced during the night when he coded and we almost lost him. As fate would have it, he was scheduled for a minor procedure down Santa’s Barbara on Friday. Once the procedure was over, he had bronchial spasms post-Covid mixed with the anesthesia causing his oxygen levels to drop. It was another stressful day with Lisa on lock in at the hospitals and me at home meeting with Matthias’s teachers and getting him back and forth from school, while feeling helpless with David.

These episodes are more common in our lives than they should be. Honestly it’s more stressful and scary than I probably let on. I do so much to be strong for my son and my family, but in these moments I feel so helpless against these forces.

Recognizing the hard realities of David’s genetic syndrome (Cornelia de Lange) and how close we’ve come to losing him, I try to be present with him whenever I can and to be grateful for every day I get with him.

David and Lisa came home from the hospital on Saturday while I was out with a friend. After a strange turn of events lead to his 24 hour stay in the hospital, I was eager to get home to see them and be re-united.

Unfortunately, as I was driving home I saw a couple texts messages coming through and missed a call from Lisa. David’s breathing had turned rapid again and she felt they needed to return to the hospital in Santa Barbara. So, even though they had been home for a respite of a couple hours, they trekked off again before I had a chance to see them.

We FaceTimed—David in his Posey Bed (a gift to parents and kids alike in hospitals!) while I got to talk with him. He was looking at me and really connecting with me over the call. I was happy to see him smiling and happy this morning. It does my heart good.

As a dad, I always want to protect and mentor my kids. It’s important to me to be there and be strong for my boys. With Covid rules around the hospital right now, only one person is allowed in the room, so there’s no way for me to be with David. I feel cut off from him and Lisa and so helpless to do anything for them.

Meanwhile in our divide and conquer strategy, I was there with Matthias—talking with teachers, driving him to school and back and generally trying to hold down the fort of our home and businesses.

5 days later, David and Lisa came home! It had been a long few days of tests, breathing treatments, antibiotics, FaceTime with doctors and worry.

A strange phenomenon happens in hospitals after a couple of days. Somehow the reason you’re there gets lost and a new diagnosis for a new problem emerges. In this case we went from a minor oral procedure to recommending a G-tube in the time David was hospitalized. Knowing eating is one of David’s biggest joys and he has not even one time got pneumonia from aspirating in his food, we chose to skip the G-tube in favor of more information. We’ll check in with his regular doctors when there’s no emergency.

When you have a child with special needs, no one knows your child better than you. Just because someone went to medical school doesn’t mean you have to do what they say—especially in the moment. You can always take a beat, go home and get a second opinion. And, you have to balance preserving life at all costs with living real and full life.

We’re thankful once again for those of you following our family’s journey and for praying for us and for David. Most of all, I’m thankful to God for bringing my son home again and for being together as a family.

CdLS

Changing Diapers Matters

CdLSI recently told Lisa, “Changing David’s diapers might be the most significant thing you do in a day.” Think about that for moment. A husband telling his wife that changing diapers might be the most significant thing she does with her time? It’s no wonder she recently helped me realize my burro-like personality! (read the story) To give this comment greater context, in case you don’t know about my wife Lisa Leonard, she is a well known and beloved blogger (my friends joke that I am “Mr. Lisa Leonard”), we run a company together—she does all the creative stuff that people actually like while I do the office stuff, she is a fantastic listener to whom people can pour out their hearts, she is a conference speaker, she’s been on TV and more. And I, the husband tell her the most significant thing she does is change diapers.

A little more context. David is ten. We’ve been changing his diapers for ten years. (When I say we, she does about 90% of it compared to my 10%.) I won’t compare how many diapers we’ve changed to others—everyone’s circumstances are different. Still, it’s about the most mundane, tiring thing we do in a week. If diaper days were over, we would throw a party. And I say to her, “Changing David’s diapers might be the most significant thing you do in a day.”

Here’s the thing. We look forward to the resurrection and the day when God will set the world to rights. I think on that day our son, free from Cornelia de Lange Syndrome, ten fingers and ten toes will look at his mom and say “Mom, thank you for taking care of me when I couldn’t take care of myself.” It is an act of sacrifice. It is an act that is for David. It is an act that dignifies his humanity. It is an act of love.  While there are so many people Lisa touches in a day through her blog and our business, as significant as those encounters are, there is a qualitative difference.

And, while this is true of a mom helping her son with specials needs, it actually illustrates a bigger point. In a society driven by a search for significance, often measured by how large our influence is, or how big an income we have, or how high we attain on the success ladder, perhaps we need to rethink how we measure significance. It may just be that the most routine, dirty, unenviable tasks you and I do in a day are the very things in which we are making the largest difference in the world. It’s not sexy, it’s not glamorous, but it may just be true.

Makes me think I need to change more diapers! What do you do that’s routine, or unenviable that might just be more significant than you think?

“That Sucks” Best. Words. Ever.

David at Birth 07/04/2002

David at Birth 07/04/2002

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?