We live in the Colorado Desert, part of the Sonoran Desert extending southeast from California to northern Mexico. The Colorado Desert is the lowest, hottest, most arid region of the Sonoran Desert. Wishing for snow is non-negotiable unless hell freezes over. By definition, a desert receives less than 6 inches of rain per year. The desert in Southern California barely receives 4 inches per year. 😳
So, taking liberties with Irving Berlin’s bestselling “White Christmas” song, please bear with my desert adaptation set to the tune of his iconic holiday classic:
I’m dreaming of some rain on Christmas,
So that flowers bloom and grow.
And later in the Spring,
The blossoms shall bring,
Colors delightful to show…
I’m dreaming of some rain on Christmas,
With every week that passes by.
May the mountains be snowy and white,
And melt down to make the desert bright.
And then… what to my wondering eyes did appear? A sudden rush of dark clouds, And 8 raindrops right here!
Ah, every raindrop has 15 minutes of fame, to paraphrase Andy Warhol… Not long after Jeff and I did our happy dance, the sky’s canvas brightened into a muted sunset.
Merry Christmas! Happy Holidays! Whatever you prefer… I realize I say Merry Christmas but I really mean Happy Solstice that we celebrate. Somehow this whole year had been a winter solstice hanging over our heads. But, for now, let’s be children again and look forward to bright surprises dropped down the chimney or brought by Hanukkah fairies or shared on Zoom calls with our families.
Jeff and I drive to Joshua Tree NP to watch the sunset and observe the “great conjunction” aka, the closest alignment of Jupiter and Saturn since July 16, 1623, a little more than a decade after Galileo first used a telescope to discover Jupiter’s 4 largest moons. Unfortunately, because of the planets’ position to the sun, this great conjunction was virtually impossible to see. So that takes us back to March 4, 1226, when Genghis Hahn was still roaming Asia, as the last time the planets were this close and as visible. (scientificamerican.com)
What makes this event even more special is the fact that is taking place on the Winter Solstice of 2020.
We enter the NP from the west entrance around 4:00 and are surprised that the rangers are just ushering all cars through. Jeff heads to Keys View overlooking the San Andreas Fault and Thousand Palms Oasis where we live right now. (We packed sushi, olives, cheese, a baguette, and nuts to eat when we arrive, but snacked on them on the drive up to the high desert.) Apparently lots of other people decided to choose this spot too.
We find a makeshift parking spot and ascend the walkway…
We hear a beautiful voice singing “Oh, Holy Night” and then “Ave Maria”…
So special and such a clear, angelic voice… Wow!
I start taking pictures of the setting sun…
And the Salton Sea…
And the moon…
A shared heavenly experience… And a shooting star! While Jeff was looking at Mars through his binoculars, I saw a shooting star approach the two planets, visible with the naked eye. A collective, “Ahhh” erupted…
That’s the Coachella Valley below and the lights are from Palm Springs. The road riding into the sunset is Interstate 10.
And here’s a view of Palm Desert and some of the other desert communities…
It gets darker…
And finally, it’s dark enough that I can capture the 2 planets with my iPhone… look closely…
The next rendezvous, according to scientificamerican.com, where Jupiter and Saturn are separated by just six arc minutes will arrive on March 15, 2080.
Following diagnosis day, Brian and I met with the Geneticist. The doctor was so loving, and even she’d some tears with us. He said there were reasons to be hopeful. There were clinical trials underway for Sanfilippo Syndrome Type A and Type B that he believed would improve both lifespan and, most important, quality of life. Life. More hugs, more laughs, more meals together, more playing chase, more “Ugga Mugga” Eskimo kisses, more hand holding, more snuggles. He gave us great hope that Oliver’s story isn’t written yet. His words carried me, gave me strength, filled me with hope. There was significant medical progress for his Sanfilippo Type.
I also remember all the brave parents in my new community who reached out and offered their support. I remember one parent saying, “The beginning is SO HARD.” I needed to hear that. That it doesn’t get progressively harder but instead, you’re hit by a truck, and then hold on for dear life over the rocky terrain. I remember seeing a beautiful mother with a photo of her and her friends. She was smiling. It encouraged me that one day, I’d smile again. I remember a dad Michael Dobbyn adding a 💪 emoji to all of his posts, and I needed every one of them. There was strength and even lightness that I so desperately needed.
For that dad, when he got hit with the truck, he was told there were no clinical trials for his son’s Sanfilippo Type C. His son Connor is fighting for his life. As his dad says, “He’s just all love, it’s all he has in him.” Another Sanfilippo child running at the Speed of Love. And a parent running at the Speed of Love to save him. If you have it in your heart, please watch, please share his video:
On this day, the anniversary of his diagnosis, I wanted to share my thoughts with everyone who has shared our journey and supported us along the way. There are so many people to thank and if I listed all of you, I fear you might stop reading from the long list! So, I won’t do that. But what should I share? I have so many thoughts and reflections and emotions — there is no singular place to start.
This is a heavy duty day. I remember the crying phone call from Jen in my office— seconds before my very last moments of blissful normal life. The only words were: “Come home now.” The drive home, not knowing anything, but knowing it was bad, but hoping, begging, it was not that bad, strangely wanting the drive to be longer, delayed. I mean, how often I wish he had something that was not life-ending . . . those, those thoughts don’t leave.
But you can’t let them take over. And I don’t. And we don’t. You prune. You cut back. You weed. Of course, you make sure to never mulch or soil. A certain narrative, as they often do, oh the stories I have in my head seem countless, has bubbled up. It’s simple. It’s pure. And so, I just thought I would let you know about Oliver and his super strength because it’s an absolute privilege to spend every day with him, spend every struggle with him, spend funny moments with him . . . be his dad.
One of the most coveted phrases in the English language is the three-worded “I love you.” I prefer a fourth-word phrase that Oliver likes to tell friends and strangers: “This is my dad.” Oh, if you could only know because he’s beaming, and he’s pointing and not everyone can understand what he’s saying.
This is not a statistically proven fact because there is yet to be invented such an instrument that can measure it, but believe me, when there is, the results will tell you that Oliver runs at the Speed of Love. With that, I have no doubt.
He loves baths so much that if you don’t watch close, your kitchen ceiling will start leaking.
He loves movies so much that he shrieks at impossible decibels at his favorite parts.
He loves the outdoors so much that he will run outside . . . even if there is snow on the ground . . . even if he doesn’t have a jacket on . . . even if he doesn’t have shoes on . . . even if he doesn’t have socks on . . . even if it’s still dark . . . even if it’s 5:30 in the morning.
He loves people so much that he always says hello to anyone walking by and asks “what’s your name?” — always.
He loves his sister so much that the main way to tell her is in a HUGE tackling-hug. And he loves telling me ‘that’s my sister, be nice’ if I am trying to discipline Reagan.
He loves his family so much that he points to pictures around the house and says “that’s my family.” He smiles with pride. It’s infectious.
He loves school so much that he runs into the building, backpack bouncing, water bottle erupting, lunchbox jostling, him almost tripping, up the steps.
He loves life so much that to him there is nothing better than looking at one of his favorite books, in the sun, munching on a piece of pepperoni.
He loves people so much that he tells the nurses at Nationwide (Children’s Hospital) ‘thank you’ after they are finished with another one of his numerous blood draws or procedures; and this is after all the screaming. What a tough kid. What a brave boy. What a compassionate kid. My personal hero. I shall never have another.
He loves . . . he loves all of you, he loves being here, he loves being present, he loves being hugged, he loves giving hugs, he loves being where the action is, he lives trying to help, he lives saying “I love you” at the end of the day, and in the middle, and in the beginning and all of those many, many, many times in between. I will stop here. I am crying and I fear my list is getting long.
We need more people like Oliver in this world. Wouldn’t it be so healing and curing if we just said I love you more and accepted things for their good? It’s truly unconditional. It is not an easy love but it has sheer muscle and it breathes and it is relentless — oh dear God is it unstoppable.
Why then do these special people with Sanfilippo get such little time? Maybe all this active love actually breaks their heart. I think that it is not surprising that Oliver’s favorite color is Red.
I also think that it is wondrously fitting that his name is in fact, Oliver. Quite telling really. Rearrange the letters if you will. I see: I, Lover.
A year ago today was the worst day of my life. Oliver and I were simply going to an initial genetics appointment for what I thought was ‘ruling things out.’ I had no fear, no concerns going to this appointment. I answered endless questions about his history — when he started sitting up, walking, talking… his difficulties sleeping, his constant congestion, and eventually some of the regression we had seen. The doctor asked me to pull up photos of Oliver at different ages. I was happy to flash photos of his ear to ear grin at different ages. The doctor left the room and came back several times. Finally, he came back with a packet for me to take home and read. As I held it and listened, I heard “Sanfilippo” for the first time. I didn’t grasp what the missing enzyme… the accumulation of GAGs… the neurons dying…meant… I didn’t understand the magnitude, but I could tell by how slowly he spoke and his kindness in delivery that it was bad. I couldn’t form the words to ask, “Is this life-shortening?” When he left the room briefly again, I flipped through the packet, desperately searching for “Lifespan”. There it was…
“most children die in their late teens.”
I heaved big sobs and clung to my sweet boy. When the doctor came back in, Oliver held my crying face in his hands and looked at the doctor and said, “My mom needs a nap.” He said it over and over, showing love for others as he always, always has.
The doctor wanted to give Brian a chance to talk to him, so we set to meet again the next day. I waited in the lobby with Oliver for a blood draw that would eventually confirm that he had Sanfilippo Syndrome Type B. I texted Brian that we had an appointment the next day. When he texted me back, “Sure. How’s Oliver?” I couldn’t respond.
Oliver and I went home. It was a beautiful fall day and Oliver and our dog, Faelan, played in the backyard while I called Brian.
“Is it bad?”
I waited for Brian, as I watched my beautiful boy, so happy, so happy, so full of life, running, laughing, throwing the tennis ball around.
I don’t remember much more about that day, except holding Oliver and crying. Reading the packet through tears, everything matching up — even physically — the coarse hair, the thick eyebrows. I googled Sanfilippo and my screen filled with photos of children who looked just like my son. His Sanfilippo brothers and sisters who would journey together — through losing their ability to speak, losing their ability to walk, suffer pain and seizures until they join the Sanfilippo angels that have gone before them, gone too soon.
But here he is today, looking for his friends — enjoying today for what it is — a gift.
It’s the eve of the 1-year anniversary of Oliver’s diagnosis. Before we had a name for what Oliver was experiencing, we lived in a state of anguish and confusion.
Simply having one parent take two kids around the block proved too challenging most days. I remember telling a co-worker I couldn’t take both kids to the zoo by myself, and he said “What? You gotta work on that.” He didn’t mean anything by it, neither did loved ones saying we disciplined too much, too little, not the right way, or telling me that trick that worked that one time with Oliver.
I remember going to a kid’s birthday party with Oliver. When the kids went upstairs to play, I panicked having Oliver be out of my site in case he had a meltdown and hit another kid or destroyed a kid’s toys. I felt weird, though, inviting myself upstairs in their house. I stood awkwardly at the bottom of the stairs. And when he did have his impulsive meltdowns, I always quickly scooped him up and tried to get him away from where ever we were. I could often see the parent’s face saying, “What happened?” I couldn’t explain it. I also didn’t know the extent that my child was so much different from other kids. At that same birthday party, when I went upstairs, with inklings of Oliver starting to escalate, my first reaction when I saw the kid’s bedroom was amazement—there were toys?! How does the child not throw/break/eat them?! There was a GLASS vase?! GLASS?! GLASS?! That wouldn’t last 5 minutes in Oliver’s room…
And school, Brian always dreaded pick-up, as there were always the required incident reports he had to sign. Sometimes multiple in a day. I remember one time in particular, I was talking to the teacher as I dropped Oliver off, and he went right over and dumped a box of felt toys on an unassuming little girl playing by herself. His school was endlessly patient and loving, but I didn’t have any fixes for the problem. I felt like such a failure.
With the vast network of Nationwide Children’s, Brian and I attended regular behavioral therapy sessions, then moved to Mental Health services. I did an online Positive Parenting course; I plastered the walls with these visual charts to help Oliver identify his feelings and choose an action item to help him feel better. We did time out, we did time in, we did breathing. Shortly before diagnosis, I holed up one weekend with an armload of behavior books from the library. That weekend, I self-diagnosed Oliver with Oppositional Defiant Disorder and wallowed thinking how he could be so train his 4 years on Earth. I uttered more times than I can count, “What are we doing wrong? How are we such parenting failures?”
Yes, one year tomorrow, the confusion was replaced by grief. Deep, agonizing grief. However, this grief came with a community. We belonged. The confusion kept us in a state of “What are we doing wrong?”. The grief gave us names and faces of families who were celebrating the good moments, navigating the murky days, fighting with every fiber of their being for a cure, and selflessly sharing their experience to help others navigate this journey,
Receiving the clinical trial gene therapy treatment means follow up tests and visits to the hospital for Oliver.
Three really long days for Oliver this week. He was able to come home each evening and play and spend each night snuggled with us. He knows the hospital and let’s me know I missed the garage entrance. We have familiar faces there who know how to find Paw Patrol for him. And he’s charmed all the incredible nurses who know him from his blood draws. He says ‘thank you’ and ‘hello’ to the valets and doctors. And he still hates that bandage with the red dot, always refusing it and suggesting ‘maybe later’.
Our boy is tougher than nails and sweeter than pie!