Last Saturday, I did something I never imagined I’d have to do in a million years: I spoke at my 7-month-old nephew’s funeral.
For those who regularly read my column, you may remember back in March I wrote about Ryland’s diagnosis of a rare autoimmune disease called Wiskott Aldrich Syndrome. He required chemotherapy and a bone marrow transplant, which he received from his sister, Brooklynn, on May 1 at UCSF Benioff Children’s Hospital.
The procedure was a huge success, and “grafting” occurred within nine days. One of the doctors told our family it was the fastest grafting he’d seen in his career as a transplant surgeon.
We were elated.
The doctors tending to Ry told my brother that the outlook for his son was so good that he would likely be headed home in two to three weeks.
We were ecstatic.
And then our world came crashing down. Not quite two weeks after the successful bone marrow transplant, Ryland came down with an infection doctors thought was some form of fungal pneumonia. He fought like a champion, and the ICU staff worked non-stop for days, trying to keep him alive long enough for the medications and antibiotics to kick in and begin to work their magic.
As I was getting ready for work the morning of May 16, I received a phone call telling me that my nephew’s organs were beginning to fail, and if I wanted to see him, I’d better get up to Benioff.
So I did.
On the drive, I still had hope that Ry Ry was going to pull through. There was never a doubt in my mind that he would someday grow up and thank his sister Brooklynn for saving his life. But when I met my family in the ICU and watched through the window of Ryland’s room as, at times, 15 doctors and nurses worked on him, my hope quickly faded.
Hours later, the staff finally said what we were all dreading, but at that point, knew in our hearts: There was nothing more they could do. They allowed all family present into his room to talk to him, touch him, kiss him. We surrounded his bed, holding hands – my brother holding one of Ry’s little hands in his, my sister-in-law on the opposite side, holding the other hand, and everyone else connected between – and prayed and sobbed.
At about 3 p.m. May 16, our little warrior decided he was tired, and could fight no longer.
As I walked out of his room, into the main area of the children’s intensive care unit, numerous staff members stood around crying quietly. These were the stoic doctors and nurses who were with Ryland through the chemo, the transplant; the same folks who were nearly as joyous about Ry’s quick and promising recovery as we were. And I realized that this was not just “our” loss, but all of theirs, too.
That Ry’s death affected so many became more apparent at his June 1 funeral service, where every pew was filled and those standing flowed outside the funeral home in the community of Clearlake, where my brother is a police sergeant. The procession to the cemetery, led by two police cars with lights flashing, was the longest I’ve ever seen. Others commented the same: That cars with headlights on and orange “funeral” signs on the windows seemed to go on forever.
It was heartbreaking.
And breathtaking.
As I stood up and spoke in front of the hundreds of people who attended, I had to pause a few times to wipe my eyes and catch my breath. Not only because of the emotions I was feeling at the loss of Ryland, but because I was looking out at a sea of people who felt the loss and who love my nephew too.
That memory will help as my family grieves and begins to get back to our normal lives – though we’ll never be “normal” again. Just knowing that my nephew’s little hands reached out and grabbed so many hearts – as painful as it is, it’s also comforting to know that he touched so many during his short life.
Time, of course, will slowly ease our anguish. And though scars will always remain, we can be assured that Ry Ry, our little guy, will never be forgotten.
For information about Wiskott Aldrich Syndrome, visit www.wiskott.org.
Andrea Joseph is the Features and Business editor for the Gilroy Dispatch, Morgan Hill Times and Hollister Free Lance. Reach her at
aj*****@sv**********.com
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