Give Voice to Hard Things

Yesterday was an exhausting day. We’ve been doing checkups with David’s doctors at UCLA since he aspirated under anesthesia in March. Ever since they keep pushing a G-tube and keep telling us how we’re putting his life at risk. Yesterday the doctor recommended palliative care and said we may even need to discuss hospice! To be clear—David is NOT dying. He’s doing great!

In 19 years of doctor visits, it still blows my mind how fragmented their recommendations are sometimes. It’s like the old saying, “When all you have is a hammer, everything becomes a nail.” When all you have is 7 minutes for patients (recommended time for a doctor to be in a room with a patient!), a specialty, and the last doctor’s notes, it doesn’t leave much room for a holistic picture. It doesn’t leave time to consider the impact of words on families.

I don’t think most people realize the burdens parents of special needs children bear. Every night I wonder if it’s the last time I’ll put David to bed. Every cough and sneeze threatens to become the pneumonia that will finally take him. On the other side of the equation, there are questions of how to care for an adult with around-the-clock needs over the next 5, 10, 20, or more years. There are the daily considerations of which activities your child can participate in and how that impacts every member of the family.

I don’t have any deep conclusions here. I’m grateful for the overall amazing care David gets and the many people who love him and our family well. This is just a heavy week. Sometimes it’s best to give voice to hard things.

Thoughts on Dad Guilt

Father and son relationships are sometimes challenging, often complex, and always special. As both a son and a father, I have experienced the range of how good and hard this relationship can be.

It hit me recently that we only have one year left before Matthias heads off to college. I’ve watched him over 17 1/2 years grow into a thoughtful, creative, and integrous man. I find myself reviewing all the things I want to teach him, evaluating the state of our relationship, and looking for ways to build memories together.

We hear so much about mom guilt, but dad guilt is real, if less talked about. We need to try our best to invest in our kids, knowing we can’t live up to even our own expectations. But we have to keep up the effort even when (especially when) it’s tough.

Celebrating David’s Birthday

19 years ago—seriously, 19 years ago! We welcomed our amazing David into the world. The 4th of July 2002 brought pain and joy I had never felt before.

At Lisa’s 38 week check-up we learned our precious baby was measuring only 32 weeks. The news set in motion the most anxiety ridden 48 hours of our lives. A high-tech ultrasound revealed nothing.

Eager for information I asked the doctor, “what does his size mean?” She looked at me blankly, “What do you mean? It could mean anything. He may be undernourished, he may just be small, he may have a genetic syndrome.” Confused I pressed for more, “What kind of genetic syndrome? What issues would he have?” She coldly replied, “It could be anything from no issues to death, I just don’t know.”

David wasn’t even born yet and already the life we envisioned was crumbling around us. Anxiously coaching Lisa as she was induced so could meet our son, I feared the unknown. I had to be brave for my wife and for my son.

David at Birth 07/04/2002

On July 4, 2002, David arrived—quiet, a full head of hair looking like a rock star, small, only two fingers on his left hand. That July 4 my heart was broken. My heart was full. I was gutted and I was happy and proud. David’s sweet little face revealed he had no idea what everyone was so worried about. He was content and happy. Our precious son was born. I became a dad.

Through David, the Lord showed me our value is inherent—unconnected to what we do. Every one of us is made in God’s image—precious, valuable, and loved. I see it so clearly in David, no matter how hard I find it to believe about myself. David lives life in the present. Sad when he’s sad. Happy and giddy when he’s happy. He’s an adventurer, a musician, a jokester, and a lover of people. I’m thankful for my amazing son and the last 19 years as his dad.

My Family – My World

I love little stolen moments when Lisa and I can get time with one of our boys. I used to undervalue how important my family is to me. As a man so much of my identity gets caught up in my career. I’m thankful, through a lot of therapy, God’s love, hard work on my marriage, and good friends, I’ve regained the perspective that no one in the world is as important as Lisa, David, and Matthias.

This little mischievous smile on David’s face cracks me up! He doesn’t talk, but he’s got a lot going on in there! Dads, remember how much you mean to your kids. They need your encouragement, instruction, and love. Families, Dads need the same from you—even when they don’t express it well.

This Sunday is Father’s day. So spend time celebrating all the fun, challenging, and important parts of being a dad with the people most important to you.

And if you need a gift that sends Dad a message, check out the shop (we have a huge sale going on!)

Practice Won’t Be Perfect

“Only perfect practice makes perfect.” But if only perfect practice makes perfect, only the perfect could ever practice and no one could ever learn anything new.

The truth is we all start bad at anything worth doing. Learning guitar has taught me it takes time to teach my fingers and my brain to form the correct chords with the correct strumming to play a song. Learning is hard and rewarding.

I created and wear the Valor Ring because it takes determination and valor to take the initial step and sign up for the journey. Whether you’re learning to play guitar, taking on a home project, prepping for a promotion at work, taking steps to improve your relationships or more, perfection is usually the enemy of progress. But we can all practice, even if imperfectly.

Whole World – Cornelia de Lange Syndrome Awareness

Eighteen and a half years ago Lisa and I felt the world crack under our feet when the doctor told us our precious son, whom we’d been eagerly awaiting to meet for the first time, showed signs of a having a genetic disorder.

“It could be anything from no issues to death, I just don’t know.” David wasn’t even born yet and already the life we envisioned as crumbling around us. 

The next days were anxiety filled as Lisa was induced and we prepared for our little guy’s birth come what may. 

On July 4, 2002 David arrived—quiet, a full head of hair looking like a rock star, small, only two fingers on his left hand. The doctors whisked him to a tiny exam table set up in the room, conferred and called me over, pointing out various atypical features from head to toe. They wrapped and handed him to me to take to Lisa, the awaiting, brand new momma. I wanted to fix him, to hide the obvious, to wake up and find I was holding our healthy baby in my arms. 

I gently handed David to Lisa immediately pointing out his little hand and a couple small features. My mom was a nurse, so I learned young to face hard things like this head on no matter how I felt. Lisa took David’s little hand in hers, stroking it gently, “Hi David, I’m your mom. I love you.” 

The next day a doctor came to us in the NICU and told us, “your son has a severe genetic disorder called Cornelia de Lange Syndrome. He likely won’t walk or talk. I’m very sorry. I will bring you some information.” We didn’t see that doctor again.  

CdLS occurs in approximately 1 in 10,000 live births. CdLS is not a “one size fits all” condition. A person may have from a few to many traits of the syndrome including: Low birth weight, head and overall size;Developmental Delays; Gastrointestinal issues; Behavioral Issues; Particular Facial Features; Limb Differences; and more. 

As we celebrate Cornelia de Lange Awareness Day today, David has shown himself to be a fighter. For all the challenges and medical issues, he has faced over the tears, he faces it with courage and determination. David loves to laugh and loves music. He’s sensitive to others and seems to always know who needs a hug in the room. 

Our family’s life looks different than I imagined when Lisa and got married. But the last 18 years have been full of love, resilience, fun. We have learned a lot about ourselves, life and God. And the world feels more whole because David is in it.

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.

You Can’t Make Old Friends

The men in this photo have been my closest friends for over 30 years. I don’t have brothers but it’s these men, and the one painfully missing, with whom I have had the closest thing I’ll ever know to brotherhood.

Losing our dear brother Leo a year ago, the pandemic, our trials with David’s health and more have taught me close relationships are one of the things that matter most in life. True, full and rich life includes real friendships and open family connection.

Like the song says, “You can’t make old friends.” Not only have these men been my friends for 30 years, we’re blessed to have married women who have grown together as friends for 20 years. In the past year I’ve realized how much I need my friends in my life—people who know the real me and who are honest with each other.

In a couple years time, together with these men, we will take the motorcycle trip of a lifetime. We will celebrate friendship, freedom and life. I am grateful for these men. Who are you celebrating in your life?

Valor

I love looking down and seeing my Valor Wide Ring while I practice my guitar. I wanted to design a ring with some heft to its appearance without straight lines. It’s a simple ring but the longer I wear it the more it takes on the marks of my daily life—from motorcycle riding to working out to handling my music gear.

I made it as a reminder that the mountains we climb in our lives—facing fears, taking risks, or engaging in personal growth—take determination and valor just to take the first step of the journey, let alone to press on once we’ve begun.

The best part about jewelry is that it takes the journey with us. Through obstacles and successes, our designs take on the memories. My Valor Wide Ring reminds me of all the times I took the first step towards something new and the courage it took to put myself out there. I need the reminder every time I begin to doubt myself.

When I started practicing guitar, I felt like I was beginning a long journey up a mountain. But with each practice session, I found the trail to the peak became less steep and more enjoyable. Now when I play, I feel like I’m on top of the mountain.

But I didn’t stop at this one peak, I kept trying to hit new heights. I put myself out there even more by performing in front of family and friends, and sometimes even strangers. I found that, while it requires me to be brave each time, performing music in front of others helps me grow.

That’s the true purpose of my ring. The first step of the journey takes determination and valor, and once we’ve finally climbed the mountain, we realize we haven’t reached the end, but have begun a journey that will carry on through our lives.

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.