I think of myself as an optimistic person. In general, I feel that attitude is one of our best personal tools and that to a great degree, we cannot control what happens to us, only how we respond to it. I feel like my “bright side” tendencies are sometimes annoyingly strong, and my muscles that force me to look towards Hope are quite durable.
This summer challenged all of that.
It was taken at the National JA Conference in Orlando, on Friday night. This was the family fun night – and for the first time ever, there was a lounge just for parents (with snacks, karaoke and a bar!)
Missing from this photo are two people: My friend Kate, who was actually busy that night volunteering with the Todd Peck Motor Team – a wonderful part of conference. The other person missing was my husband Dave – but only because my son Jack was participating in Junior Olympics for Water Polo in CA- and Dave stayed home to do that.
Otherwise, what you see are families that are close – that have set-up cookies and milk for Santa pre-dawn at Jingle Bell Runs, that have Walked to Cure Arthritis together, JA Family Camped together, texted together during hospital stays and infusions. In the back is Mark on the left and Adam on the right. In the front, Kat on the left, Gwen in the middle, and me on the right. Gwen and Adam and their daughter Saige shared a huge condo with my family at JA conference last year in Colorado. We shared a condo this year too. On Thursday night after the opening dinner – we went really late to Walmart to buy groceries (what an experience the Orlando Walmart is!!!!). We shopped so that all of our families could share breakfast each day, snacks, lunches – and we even got the makings for a taco night for Friday dinner. So, an hour before this photo – that’s where we were – eating tacos with all of our kids, drinking margaritas, laughing, and talking about how great it is to be around so many people who understand you. And then we were here. And it was marvelous….and so very happy and wonderful.
You hear all the time that life can change in an instant – and you’re supposed to use that knowledge to never take life for granted. To appreciate everything all the time (which is not possible….). In a way, anybody who would even read this has already had at least one of those life altering moments… because certainly, the diagnosis of a chronic illness for your child makes you appreciate was life was “before” in a way that you would never have been able to metabolize or truly understand “before”. And if you’re lucky, like me, you haven’t had too many of these lessons in real life – you haven’t had too many traumas or disasters or things that make you pine desperately for what life was a day ago….or a week ago… or a month ago. Long for it in a way that can stop any forward momentum you had in you.
On Saturday night- we gals headed down to Downtown Disney to enjoy dinner at the Rainforest Cafe. All girls on the town…. while Adam, who is somewhat renowned for creating a Tribe with JA Dads and leading sessions on how to cope (as a Dad) with this whole JA conundrum – Adam was having a Dad’s Open House – complete with Walmart pizzas, chips, veggies, dip, brewskies and other snacks.
We were laughing….drinking fruity, frothy things. The lights went down and all of the Rainforest animals started entertaining us. Food came. We shared fries and laughed and enjoyed. And then Saige’s phone rang. She handed it to her mom. And you know…sometimes you can just know by looking at somebody’s face. It was bad. I thought Gwen was going to climb over the top of the table. I flagged the server, Bring boxes…and the check….immediately please. What a dichotomy – us trying to force our way back through the vacationing throngs of happy people while getting horrifying snippets of details over the din of the crowd. Gwen’s oldest son – a surfing accident at home in CA, he made it out of the water and then fell – can’t feel his legs – intensive care. Us finding the car. Crawling, excruciatingly slow through Orlando traffic back to the hotel while Gwen made call after call to get more information – get people to go to the hospital immediately – because she was helpless, 3000 miles away from her son.
Back at the hotel, our room was solemn, all the dads having been sent away – the pizzas still in the fridge. Immediately, Kate, Kat and I were searching the internet for this strange thing they were being told – something called “Surfer Myelopathy”- extremely rare. Like JA – rare. Struck by lightning twice, they think. I think. We all think it – but don’t say it.
And our optimism, which has served us so well as JA parents, which has allowed us to coax our stiff and frightened kids into believing that this new med may work, that this PT will help them feel better, that if they can only make it through second period at school, they can probably make it through the whole day- that optimism kicks in. While Adam searches for flights to get Gwen home, and struggles over the decision of whether to go with her or whether Saige and he should stay so she can still have her 3 days at Universal that she has been planning all year with her JA sister/friend Delaney- we throw optimism over Gwen like a security blanket. It’s early. They will do tests. They may be wrong. He’s young (26) and strong – he will walk again. Hold on. You’ll be with him soon.
The next day – Gwen flew home. After the closing of conference, we stepped out to hug her goodbye – our group huddled like a three dimensional prayer. That photo above – plus Kate. And our kids.
The rest of us stayed in Orlando for a few days. My daughter had a great time at the Disney Park with our good friends the Lentini’s – who made her feel like family, and yet, managed to treat her like a princess. Saige and Delaney had three adventurous days at Universal Orlando. Mark, Kat, and their son Lucas and I all traveled over to Universal City Walk to enjoy a day with Adam and Kate (and a few moments with the girls when they could tear away from Harry Potter.)
Tuesday, July 28 was an incredible day – blue skies and white clouds changed to this intense storm. Just as we stepped in to a restaurant called Cow Fish – the wind picked up, and the rain pelted down. We sat on the second floor patio – the only people on the deck for a long time – watching the storm, having great food, laughing at our luck for getting under cover just in time. And even though Adam was incredibly somber, and could not stop worrying about Gwen, this too was a great day.After lunch, the rain had cleared, and we wandered through the stores checking out tchotchkies and Harry Potterabilia. We went through Margaritaville and checked out Jimmy Buffett’s plane.
Then we took the water taxi back to Adam and Kate’s hotel, where we hung out while Mark took Lucas to check out the pool. Mark actually taught Lucas to swim at Conference this year – so they were so eager to get some po0l time in until more lightning chased them back to us.
The next day, my daughter and I flew home with Mark, Kathy and Lucas – sharing a shuttle to the airport, the same flights, and a goodbye hug on our home turf.
When Adam and Saige flew home on Thursday- they plunged immediately into the new reality that Gwen had been drowning in. Gwen’s son is given 4-7% chance of walking again. And now – so much must happen – immediately – to support his new needs. It was like 24/7 crisis – and there was not a second to spare for Hope or thoughts of what could make the future better, it was all about survival and trying to stay on top of it all – insurance, disability, doctors, physical therapy squeezing a few hours in at work. They had to find a place to live that would be accessible for him – with a first floor bedroom and shower – someplace that would allow pets. Someplace available immediately. They had to learn about meds, and catheters, special beds and shower chairs and wheelchairs- and how to physically care for a grown man that has absolutely no control of any of his body or body function from the waist down.
Even though this was not my journey – it was difficult. I love these people. They were hurting. There was very, very little I could do to improve their situation. Kate and I texted each other constantly, texted them constantly – we had Saige over for a few days so she could enjoy some dwindling summer time with my kids. I would catch myself living my life – and spend a moment caught between gratitude and guilt….and force myself to step one inch closer to gratitude.
Less than two weeks later – we had our Arthritis Foundation Thank You event for our Walk. Adam was there – looking like a shell…..but he was there. Mark and Kathy and Lucas lit up the room – and Mark had tears flowing as he quite poignantly and honestly described how the JA conference has changed everything for them. How, now he knows so much more – and will be more involved in being his son’s advocate – and in going to appointments and learning about the medications. After the event, we huddled together and Adam told us that they were close to finding a house. “Just let us know when you are ready to move,” Mark said, “and we’ll be there.” Mark would drop anything to help a friend- especially for one of his Tribe. Absolutely – confirmed my husband – We’ll be there. Moving boxes, lifting, fixing things – these are easy tasks to get behind. Clearly defined tasks with an expected outcome.
The following Monday, Adam called to let me know that they had found a place. Thirty-five miles inland – but with enough room and an accessible first floor bed and bath. As I got off the call, I almost texted Mark to let him know – Save this weekend! We’ll be moving Gwen and Adam! but I got sidetracked.
A couple of hours later – Adam called to tell me. Kat had just called him hysterical. Mark died. What???? Mark died. They had taken Lucas to his first day of school. Mark had not been feeling well. So after the drop off, where they met the teacher and Lucas’ new friends – and had what Lucas called on of the best days of his life! – they went to the doctor – who said that a stint and angioplasty were needed. They put Mark in an ambulance to take him to a hospital, Kat driving behind. He had a massive heart attack on the way. Mark died. Even directly in the hands of EMT’s with all the necessary equipment there, they could not save him. That’s what I told Kat. There is nothing more you could have done. God wanted him home. That’s what she told her 8 year old son….. That God needed an excellent carpenter, so he called Mark home.
It has been less than a month. Adam and Gwen are moved. Saige started her new school. So much of the unknown, which caused so much anxiety in those first weeks- is now clearer, though not any prettier. But so much is still raw….and painful. This kind of thing can break families apart. I want to wrap them together in silk and happiness and strength so they can endure – and get through – find the new normal and remember how to smile and laugh again.
It’s been less than a month. We took Kat to dinner for her birthday, to a sushi place she used to enjoy with Mark. Gwen fought traffic to drive down and join us. The servers know Mark and Kat – they brought sake bombs over in his honor. Lucas and my youngest bent their heads over a video game while we listened to stories about a man that we only had seen through one or two lenses… but obviously, there was so much more. We lifted our glasses and tried not to cry.
It’s been less than a month. Kat had a beautiful funeral service for Mark. She never shed a tear….because she knows that Lucas watches her all the time for cues. They do cry, at night, talking to Mark and missing him…. but that day, she nodded as people spoke about Mark from the altar and she comforted people as they shyly approached her after, silent or stuttering without proper words to give. I sat staring at Mark’s things being blessed – his Angels hat, his foam #1 finger, a photo of him running a marathon as a young man….his work boots….and cried….Adam and Saige next to me.
So much sorrow in such a small group of people. After so many years of optimism keeping me afloat, I feel I don’t have any to give them right now- but I don’t know anything else to offer. My auto-pilot is to look for the way out of the storm. Honestly, I think that they are all so deflated that they don’t want platitudes. Travelling back and forth through the stages of grief, anger one day, bargaining one day, denial. Adam trying desperately to live the things he coaches other dads to do, to walk the walk, to put his mask on first. Gwen, trying to take care of her kid – even though he’s a grown man and she barely tops 100 lbs – she still lifts him and shifts him… and he’s still her kid and she still has a husband and five other kids. Kat trying to keep things normal for Lucas, and alone in the car on the way to work – overcome by grief ninjas invited in by a song on the radio, she finally cries.
They don’t want my bright side right now…..which is good, because I’m having a hard time finding it at the moment. I just give my ear. My shoulder. Try to remember as I go through my days that are so normal…. nothing is normal for any of them. I try to focus on how blessed I am – try to get in extra hugs – extra talks with people I love – extra reflections on gratitude.
If I had to find something – I guess it’s this. At least we had each other – and we had each other because of JA. I’ve pondered the blessings on this reality before…. but if there is any silver lining to this summer of storms – it’s that….. I know Gwen, Adam, Saige – Kate and Delany – Kat and Lucas….and I had the privilege of knowing Mark. Despite these things, despite loss and change and pain – it is a wonderful life…..there still is Hope, and friendship, and camaraderie, there is comfort in this JA Family. – These Silver Linings of this stormy life.