Originally published in the Dallas Morning News, November 26, 2014
A Gift Beyond Any Conceivable Measure by Jon Dahlander
If I close my eyes, I can still see his face and imagine his smile. Thinking of his dimples or his sweet coos or one of his high-fives brings me a joy that I wish the entire world could experience.
Then, when I open my eyes, I am again faced with the devastating reality that he is gone. He is now a series of memories and photos in frames — so many of which are both beautiful and crushing at the same time.
Our sweet son Jared died this past August just shy of his 14th birthday of a kidney disease. He was — and still is — our angel, watching us, guiding us, smiling, laughing and placing every bit of our lives in perspective.
Jared was born with a genetic syndrome that medical experts were never able to identify. Not knowing what kind of cognitive ability he might ever have or even his life expectancy was like continually walking through the dark in an unfamiliar place. We never knew where we would wind up.
My wife and I did everything possible to maximize his potential — countless physical, occupational, speech, aqua- and hippo-therapy sessions. We traveled to Boston and Denver to track down genetics authorities to try to get a read on his syndrome. We flew back to Boston — twice — to have a hand surgery that we thought might help in his development.
Even just one year ago, Dr. Daniel Sucato and the dedicated staff at Texas Scottish Rite Hospital for Children performed life-changing scoliosis surgery that we believed would give Jared a new lease on life. Despite several long recovery periods, he smiled through it all, amazing us with his courage and resilience.
Despite our efforts, Jared was never able to walk or talk. He breathed through a trach and was fed through a feeding tube. He had both hearing and vision impairments. While every day with him was a challenge, the rewards of his life are treasures that we would not trade for anything. He was a gift beyond any conceivable measure. His smile could light up a room and when he held your hand you knew how much you were loved.
As we approach Thanksgiving, my wife, Heidi, and I are again reminded of the hundreds of heroes that our angel introduced us to during his life. We are also reminded that the community that supported Jared and us is something that rarely makes headlines — but should.
There are people who walk among us every day who quietly go about their work, helping and healing, supporting and giving. They not only did it for us; they do it for everyone who comes in their path, because that’s just what they do.
Heidi and I were both fortunate to have grown up in large families. Our upbringing was very similar. The Episcopal Church was a central part of our lives.
We met at our first jobs after college and started dating a year later. One of the things we always talked about — both before and after getting married — was building a family.
When we learned that Heidi was pregnant, we didn’t want to find out the baby’s gender in advance. With so few surprises left in this world, we would wait to find out in the delivery room. When people asked us if we wanted to have a boy or girl, we would just say that we only wanted a healthy child.
The surprise that we had in delivery wasn’t just that Jared was a boy, it was that he appeared to have some sort of genetic syndrome and that he would likely have medical issues throughout his life. What we had hoped would be one of the happiest days of our lives turned into one filled with tears and fear.
Once we held Jared, though, we realized that this was an angel who was going to need our love, support and protection from the world. I know all new parents feel this way, but we couldn’t help but feel, even then, like he was going to need much, much more.
Act of kindness
Jared’s first year was filled with hospitalizations and surgeries. We spent a lot of time at Medical City, so much so that we knew all of the doctors and nurses in the pediatric intensive care unit. I can still rattle off all of their names.
We stayed in the hospital so long that family and friends stopped coming to visit. They really didn’t know what to say any more and, of course, they needed to live their lives, too, away from a hospital. The days and nights all ran together, and Heidi and I had to just accept that this was our new normal.
On yet another endless day in the hospital, Heidi was visited by Cheryl Vandiver from the Night OWLS (Out With Loving Sitters) ministry at Highland Park United Methodist Church.
Cheryl had been a nurse at Children’s Medical Center for years before being asked by the Rev. Mark Craig to create a ministry to support the parents of special needs children. Craig had witnessed far too often the effect that caring for a medically fragile child could have on families.
We knew absolutely no one at that church. How they found us is still one of life’s great mysteries.
Cheryl explained that, when Jared got healthy enough to get out of the hospital, the Night OWLS volunteers, who include skilled nurses, would take care of him at no charge on a Friday night to allow Heidi and me a night to get out and be a couple again.
The idea of this act of kindness seemed too good to be true. Jared’s care and support was all-consuming, and the stress we were under was often unbearable.
About a month after what was likely Jared’s sixth hospitalization and fifth surgery during the first year of his life, we decided to see if we could actually leave Jared behind at Highland Park UMC. That first Friday, we went to a restaurant almost within walking distance and seemed to stay only about 45 minutes. It was difficult to relax with him out of our sight.
Through time, we started to become more comfortable with the idea that this was a very special group of volunteers who wanted nothing more than for us to have time together or with friends. For 12 years, the kindness of the Night OWLS family of volunteers saved us. Just having one night a month to ourselves was so important for our emotional well-being.
No one believes me when I say this, but it’s true: Without this ministry, it is doubtful that we would have had the courage or strength to consider having additional children.
Through Jared, we learned about faith and grace.
Today, we are blessed to have Ava Faith, now 9, and Chloe Grace, who is 4. And yes, they are thankfully healthy.
I wear a necklace every day that was given to me by the rector at our church, the late Father Jay Hobbs. On it is a medallion of St. Christopher, the patron saint of travel. Legend has it that St. Christopher carried a child through intrepid waters to reach the other side of a river, later to learn that he had been carrying Jesus.
When Father Hobbs gave me the necklace about a year after Jared was born, he explained that he felt that both Heidi and I were on a journey ourselves and that we had been given a job by God to safely carry this child to another place. While he said he didn’t know where that other place would be, his hope for us was that, along the way, the reason for the journey with Jared would reveal itself.
It did, in ways too numerous to count. At every step, Jared introduced us to one incredible person after another. Jared’s teachers and aides in Dallas ISD schools were beyond belief in their love, kindness and care for him.
Keesha Graves is just one example. Keesha had no intention of becoming a special ed teacher until she met Jared. She only took a job as a special ed teacher’s aide to gain classroom experience while she finished her degree. She eventually followed Jared to three schools.
Her experience as Jared’s aide and working with other kids in his class changed her her life. Keesha eventually earned her degree, became a special ed teacher and now chairs the special ed department at Cabell Elementary in Dallas ISD.
Jared loved Keesha so much that all we ever had to do to get a smile and giggle out of him was to say her name.
Jared’s overnight nurses became part of our family and inspired us even more. Mariana Mbah, who moved here from Cameroon in West Africa in 1982 with nothing more than a suitcase, would study each night while Jared was sleeping so that she could eventually own her own home health care agency. We used to joke around with her that she was going to be a CEO someday.
It’s not a joke anymore. Mariana now employs several nurses who take care of 40 elderly patients each week. Mariana proves that, with hard work and perseverance, anyone can achieve the American dream. We would have never met her without Jared.
“Jon, wake up! Something is wrong with Jared. I’ve had to put him on oxygen because he’s de-satting,” meaning his oxygen saturation levels were dropping.
It was Father’s Day this year, and Heidi had been doing her very best to honor my annual request for one, just one, uninterrupted, guilt-free nap. After an hour, she couldn’t wait any longer. His oxygen levels were dipping too low for comfort.
Jared’s issues with his lungs were numerous over the years. I lost track of how many days and nights we spent in the hospital with various bouts of pneumonia. When he was home, he had two different kinds of breathing treatments every day throughout his life.
We had grown used to these issues, and Jared always managed to bounce back. Because of that, we weren’t overly concerned. Bothered, yes — because it meant that we would once again need to find places for our daughters to go while he was in the hospital, but we were used to that.
As we took him to Medical City Childrens for what seemed like the 200th time, I had resigned myself to thinking that he would probably be there for maybe a week. If only we could have been so lucky.
Yes, his oxygen levels were low when we arrived in the emergency room, but his blood pressure was elevated, which was an important clue for the ER doctor on duty. A blood test further indicated that his kidneys were failing. We couldn’t get our heads around that. For a guy who had endured 20 surgeries and countless hospitalizations, none of which were related to his kidneys, renal failure came completely out of the blue.
Various issues put off a biopsy of Jared’s kidneys until Wednesday, then we had to wait a couple of excruciating days to get the results. When Heidi and I were told that the nephrologist wanted to meet with both of us on Friday afternoon, we knew the news wasn’t likely to be good. Even then, because of Jared’s resiliency in the past and our eternal optimism, we just expected that whatever he had would be fixable and that Jared would be back home in a matter of weeks.
When the time for our meeting finally arrived, the doctors could not have been more honest and direct. Jared was suffering from a progressive but painless kidney disease called “collapsing FSGS.”
For most other patients, dialysis might be a short-term option prior to an eventual kidney replacement. Not for Jared. Previous surgeries on his abdomen had left behind too much scar tissue for dialysis to be a reasonable option, and the disease, because of its aggressive nature, would likely attack any new kidney.
There was not going to be a good ending. It was now only a matter of time before this disease would eventually take his life.
During Jared’s last few weeks in the hospital, nearly 100 people came to visit. Because the kidney disease was painless, Jared was able to smile often for those who had helped both him and us on our journey.
Our church, the Episcopal Church of the Good Shepherd, surprised us by having a crew of people get together to make dozens of origami cranes, symbolizing compassion, love and courage, that were hung from the ceiling in Jared’s room at Medical City. The cranes added color and love at a time when all of us needed it most.
Jared’s funeral was attended by more than 650 people and is believed to be the largest funeral service in our church’s 55-year history. All of our heroes were there: Night OWLS volunteers, doctors, nurses, teachers, aides, friends and family. It is a day we recall with both great joy and tremendous sadness.
Our angel was called home.
We printed up bookmarks to give to those in attendance because we wanted to share the most important lessons that, in addition to faith and grace, Jared taught us over the years:
Every day is another gift from God
Love those around you unconditionally
Smile as much as you can
Keep things in perspective
Jared was indeed a gift, and we are only beginning to realize that there is so much power in his story. He may have never said a word, but he taught us more than anyone can ever imagine.
As we make our way through difficult moments, we are reminded how blessed we have been to live in a place with so much medical expertise, commitment and, more than anything, love.
We also know that the many people who helped us on our journey continue their work, without fanfare, supporting families like ours when they need it most. To them, we can never say “thank you” enough.
Jon Dahlander is executive director of news and information for Dallas ISD. He can be reached at email@example.com.