Category Archives: Real Life

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.

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!)

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?

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.

Father’s Day Musings

Father’s Day is almost here. Our lives have been so crazy lately with David’s surgery and Matthias graduating Middle School, it’s easy to miss everything happening around us–especially a day like Father’s Day. But this time of year reminds me how grateful I am to be a dad and how grateful I am for my sons.

A few weeks back Matthias and I went on his school camping trip. I love getting out into nature with him and seeing him hang out with his friends. He seems to be growing and changing before my eyes lately. Honestly, sometimes I find myself freaking out that he only has four more years until he graduates. I think of the things I haven’t taught him yet, the things I neglected when he was younger, the things out ahead of him and feel like I could be such a better dad to him. Then I remember growing and learning is a life-long journey.

David has had a few bad colds and a hard time breathing this year, to the point I have worried about him many nights as I put him in his bed. Finding out he had a polyp in his nose the size of my index finger has explained so much. All these things remind me how inadequate I really am to keep my boys and my family from harm. No matter what steps I take to protect them, so much is out of my control. I have to admit the idea I can keep them healthy and safe is an illusion. And yet, I am grateful for those who surrounded our family and helped us help David get the surgery he needed.

People don’t really talk about this, but being a dad is vulnerable. Dads want to be strong for our kids and families. Dads work hard to provide for our families. Dads want to be role models and to teach our kids. We may not wear our hearts on our sleeves, but our love runs deep. Every dad, whether he drives a truck, works in an office, or stays home with the kids wants the best for his kids. And yet we all wonder if we’re up to the task. We worry the day will come when we can’t provide, can’t protect, can’t be there.

We want to be the super hero who can fly in and defeat our foes with lightning speed and the strength of steel. But we know we are flesh and blood. Our foes don’t use magic, or diabolical riddles, or elaborate scientific contraptions. Instead we fight to pay mortgages, pay for college and provide the best life we can for our families. Dads want the best for our kids.

In today’s world, being a dad takes courage. We have to withstand the pressures and fears we face. This Father’s Day honor and celebrate the dads you know who have shown their faithful love. Remember the dads who mentor and teach you. Let them know the difference they make.

 

Monday Musings

Last week was a busy week. It began and ended with David seeing specialists in LA. On Monday we went as a family to the pediatric orthopedist at UCLA to learn what’s going on with David’s scoliosis. The X-rays were shocking. His spine looks like a mlid today today, when only a few years ago it was straight. Apparently it’s classified as moderate, so we will wait and watch. Fortunately he’s not in any pain.  

Friday Lisa took David down again to Children’s Hospital LA to see the Ear, Nose, Throat doctor as he has developed a small growth in his sinuses called a polyp. We’ll be able to remove it with a simple surgery, but it means at least four more trips to LA for various doctor sign offs and tests beforehand.   

Saturday we took Matthias to see the new Avengers movie! I was thinking today, What do dads do who have daughters and no sons when movies like this come out? Do you play it cool and go with a friend who wants to see it, or do you just suck it up and admit, you’re a big kid who wants to go watch super hero movies? I love getting to share all these movies wit Matthias as he grows up. We’ve been able to see Star Wars premieres together, geek out over the Avengers and weep in frustration over Fantastic Four (why can’t they get that one right?).

I cook breakfast for our family every morning. Usually it’s our special protein rich pancakes, but sometimes I do bacon and eggs too. Our dog Louis always stands right behind my feet where I can’t feel him, but leaves me no where to go. I have tripped over that dog a hundred times if I’ve done it once! It’s our morning routine.

Fortunately, this week is a little less crazy than last week. I’m retooling my schedule and responsibilities to make more time to write, develop product and focus on my goals. Seems life is always clamoring to take over any time in the calendar. I didn’t get done everything I wanted to do last week, but I did get to be there for Lisa and the boys. As a husband and dad, I’m grateful for that.

Strong and Brave

We spent anxious hours awaiting your arrival. When you arrived, we rejoiced and cried. The doctors showed me your little hand. Your mom took you in her arms, “Hello David, I’m so happy to meet you,” as she smiled at you. You squeaked out your nearly imperceptible cry. Our hearts hurt. We were so happy to be a family of three with you in our lives.

When you came home, I held you and crept into your room to check on you often. Each time I entered your room, I prepared myself to find you were no longer with us. I prepared myself to be strong and brave for your mom. Each time I found you to be the strong and brave one. Lying in your crib peacefully sleeping, crying for food, or ready for snuggles. Four pounds, two ounces, you had no idea how you demonstrated the strength and resilience of a Navy Seal, surviving and thriving every day.

You didn’t walk until you were five. Then one day at church, you got up and quickly crossed from one side of the gym to the other. We could hardly keep track of you! You have never uttered a word, but you have learned to tell us what you need. You find those who are hurting in a crowd and show them comfort and love. You have looked in my eyes and asked why. You have told me you love me. You have penetrated my soul.

You had six surgeries by the time you were six years old. You have spent hours in waiting rooms, doctor offices, and hospitals. Each time, I swallow my fear to be brave for you, your mom, your brother. Each time, I fear losing you. Each time, you again prove you are the resilient one. You are a fighter, a survivor, someone who thrives.

We nearly lost you between Christmas and New Years of 2015. Suddenly hit with pneumonia, O2 levels well below critical. Your mom’s instincts saved your life. 24 hours after arriving at the ER in Cambridge, you were up, feisty and ready to get moving again. Not until then could we allow ourselves to grasp how close we came to losing you that night. Your mom and I wept out of joy and unreleased fear. We welcomed 2016 with greater joy in the mundane reality the four of us would board the plane together back to the U.S..

Your recent pneumonia again had us worried. For a week I entered your room multiple times a night, reliving those early and anxious days when you came home from the hospital. I don’t know how many times in 15 years I have entered your room, my heart beating fast, braced to find you gone—ready to be brave for your mom and brother. I’m the dad, it’s my job to be strong for our family. Again and again, you show you are the brave and strong one. You refuse to give in. You have too much love and joy to offer the world. You are made in the image of God and you reflect Him to the world everyday as you create music with your keyboard and as you relate to others with your hugs and smile and laugh.

We have celebrated every milestone of your life. Every birthday we take note. Every school transition marking another achievement in your small and remarkable life. I couldn’t imagine this day when you were born. Today you turn 15. David, you are one of my heroes. You show the strength of a grown man. You show the courage of a warrior. You are strong and brave. Today I celebrate you my dear son.

Who is strong and brave in your life?

Brothers

The other night at dinner, Matthias stared down at this food, his eyes going back forth thoughtfully. He looked up, eyes full and moist,

“I want to talk about having David as my brother. (I love you David and this isn’t about you and I don’t mean to be rude.) I’ve experienced a lot of loss. I don’t have a sibling rivalry. I can’t hang out with David like a typical brother.”

Lisa and I exchanged looks. Matthias has spent countless hours in doctor offices. He’s endured the frustration of a brother who knocks over his toys and gets in his space without being able to retaliate. He’s spent hours alone in the same room as his brother, when other brothers would be paying catch or wrestling.

“I’ve learned a lot from David and am probably more sensitive to other people as a result. I’m thankful for that. But it feels really unfair. It’s hitting me that I’m probably never to going to meet David’s wife. I’m not going to meet his kids. (No offense David.) He’s probably not ever going to get married or have kids.”

As he says these words it takes me back to Torrance Memorial Hospital where the boys were born. I can see David, his seven fingers, his little body. I hear his faint newborn cry. I see the doctor in front of Lisa and I:

“We have run tests and reviewed your son’s condition. We believe he has Cornelia de Lange Syndrome. With this syndrome he will never walk, talk, have children or lead a normal life. I am very sorry.”

Today Matthias is receiving the same news. He’s always known, but never truly understood until now.

He turns to me, “We’re never going to be able to go out and grab a beer together.”

He looks at Lisa, “Mom, you get together with your sisters for your birthday. You guys get to go to Santa Barbara or San Francisco for the weekend. I’ll never have that with David.”

The moisture in his eyes and the early teenage angst in his face intensify. He looks between us, his parents. I want to explain. I want to tell him it’s OK. My heart beats and aches in my chest. I hate hearing the mature pain in my young son’s soul. I hate the painful tension in his eyes.

We say nothing. We wait.

“I feel really sad about that. It’s hitting me lately. I’m angry at God that He didn’t change this for David. He just let it happen.”

I know the feelings Matthias is sharing. I felt them when David was born. I feel them when David gets sick. When David races into the room where I’m playing my guitar and begins to bang out a couple notes on his keyboard. I know he want to play Beatles songs with me. I feel loss and anger he cannot pursue his innate love of music with me. It’s dishonest for me to say I don’t relate in my heart.

“I feel sad too Son. I feel angry at God at times too,” I admit. “I can relate to your sense of loss. I want to meet David’s wife and kids too. I see how you have a brother, but don’t experience all the brother things—wrestling, looking out for each other, playing games together. I feel privileged you are sharing your thoughts and feelings with us.”

But this is not the full story.

“I think God feels sad and angry about Cornelia de Lange Syndrome too. We live in a broken world. God did not want the world to be like this. And you’re right, He has allowed it to be this way. But that’s not the full story. He’s also pursuing His creation to redeem and restore it to the way it’s supposed to be. I’ll be honest with you Son, I don’t understand it all either. I feel the tension—if He’s going to fix the world, why does He allow the world to be like this. I could give you a lot of impressive theological answers, but the truth is, I don’t know. I just take comfort knowing this is not the world God wants and one day it will be different. One day David won’t have Cornelia de Lange Syndrome. We will be free of the pain of loss. Until then, we live in the tension.” Sometimes an unbearable tension.

We all live in this tension. You may care for an aging parent. You may be fighting a life-threatening disease like cancer yourself. You may have lost a loved one. A hard marriage, an unfulfilling job, financial trouble. We all know the pain and loss of a broken world. We live everyday with joy and pain side by side. We all know this is not the way it’s supposed to be. I take comfort though it breaks our hearts today, one day it will be different. And sometimes, like Matthias, we just need to tell someone who will listen. We need to be able to share our fear, our sadness, our anger knowing it’s doesn’t make us less, but makes us human. Knowing God stands with us in the tension. Knowing God understands the pain.

Are you living with a sometimes unbearable tension?