It’s impossible for me to begin 2019 without looking back on 2018. Unlike some, I don’t feel overtly negative about 2018. I wasn’t one of the ones cheering “Later 2018! Don’t let the door smack ya on the way out!” on New Year’s Eve. The thing is, I don’t feel I have the luxury of wishing a “bad year” away. And, without judgment, I do feel it is a luxury to do so. For me, it is luxury to assume one will have an infinite number of years to go. Years with your spouse, your kids, your parents, your family, your closest friends, even though, deep in our hearts, we know that isn’t true. It’s far easier to put the blinders on, ignore that ugly truth, and march on as if this year matters more than all the years before and assume that there will be many more after. And in my life, in my particular circumstances, that’s not a luxury I allow myself anymore. For me, every day, week, month, or year, good or bad, is another one I get to spend with the man I adore more than anything in the world (I know, cheesy, but just hang on) and it’s impossible to understand the depth of meaning of that statement to me without an explanation of why this man, who makes me crazy, annoyed and frustrated can, in the next breath, completely astonish me and leave me paralyzed with adoration. That, my friends, is because there was a “before” in 2012 and again in 2018 and now we are living in the “after” (and planning to make the most of it!)
Let me backtrack for a bit, provide a little context . . . .
For the past three years, I’ve invested in a tool I love. A tool I’d praise from a mountaintop if I thought it would help you too. A tool I swear was the reason I finally left the firm, started a new business, moved us out of our home and threw off the docklines in 2016. A tool I believe is the secret to any successes I’ve realized in 2017 and 2018- my Passion Planner. (’m not saying it can or will work for everyone, it just works for me. So, whatever version of goal-setting, life-planning, coaching, vision-boarding works for you, I applaud you!) At the end of each year, the Passion Planner asks you to reflect on the entire year and answer some thoughtful questions, like “What advice would you give yourself at the beginning of the year?” “What were the biggest lessons you learned last year?” “Name three things you can improve on next year. What concrete actions can you take to work towards those improvements.” I approached these questions with focus, mindfulness and intention and as such, this exercise helped me remember what we lived through, regroup and refocus where I’ll spend my energy in 2019. And what I realized about 2018 was that there was a clear demarcation between the “before” and the “after.”
At the beginning of 2018, I had some big dreams for our family, things I wanted to do personally and professionally, places I wanted to go, things I wanted to accomplish. This was “before.” And in the “before” months of 2018 I was making great strides on those fronts. We traveled to Mexico (twice) and Costa Rica in the first three months of the year, I launched my website, was becoming educated on a new line of business, in addition to reorganizing our current corporation, functioning as Principal and General Counsel for our new corporation and working on our strategies for growth as a company. But then, on April 1, 2018 (Easter Sunday) Ryan suffered a soul-shaking vascular event. The actual event that forced him to the ER was an extremely painful dissection is his celiac artery and the initial medical plan/advice was to monitor but not intervene surgically. At the time, our primary vascular surgeon was in Africa doing good work and bringing her expertise to that continent. But the team agreed that monitoring was best, have another scan in a month and meet with Dr. H. at UC Davis upon her return. So, we went on with life the best we could, Ryan was still in pain, but it was manageable. Yet, we were still very shaken and unsure of what the future looked like. On May 14, Ryan and I met with Dr. H. and that was the pivot point, the point at which everything changed. First, the most recent scan showed that the dissection had grown to an aneurysm. Second, the meeting with Dr. H. had a completely different tone, everything in the air was tense, both in us and her. Her sympathetic and sad eyes, her tone, her demeanor and her words were a total about-face from the last 6 years of managing Ryan’s care with her. In the 6 years since Ryan’s definitive diagnosis of EDS Type IV while I was pregnant with F and the frighteningly near-death experience of Ryan’s splenic artery pseudo-aneurysm just 4 days after the birth of our second son, Dr. H. had always been our champion, our go-getter, assuring us that things were going well (given the circumstances) and we/she would be able to manage any changes in his situation, surgically or otherwise. But on May 14, she delivered grave news: that we had reached a new “phase” in Ryan’s care and that we needed to make some tough decisions and, if we hadn’t already, begin putting our affairs in order. It was a gut punch, to say the least. And we were faced with an emergent choice: A very risky surgery (the celiac artery is in a very tricky place and this particular aneurysm is very tricky to repair for lots of different reasons, even in the hands of our very capable surgeon) or risking a spontaneous and likely fatal rupture of the celiac artery and living with that risk every day. Dr. H. strongly recommended that if we chose the surgery, we do it within 2 weeks.
From May 14, 2018 on, we went dark, off the grid. We circled the wagons and drew the curtains on any life outside the four of us. I imagine that most people that face this kind of medical crisis would react the same. Life becomes primal, a matter of survival, everything feels precarious and anything not related to surviving is completely irrelevant and unimportant. The days are a fog and filled with hard conversations, research, emotional breakdowns, and finding strength. Strength to be there for your spouse, for your kids, and somehow for yourself. Finding strength to reach out to the dear friends who are the backbone of your support network as you go through this. Finding words. Words become hard. Speaking without the emotional break in your voice is nearly impossible. It feels like being dropped in a deep cave with no light except the tiny ray of light that streams in from the cave opening, and then trying to claw your way out to the surface bit by bit, trying to stay strong and positive for the kids–not letting them see your deeply-held fears, supporting your spouse and trying hard not to think about the worst case scenario, but knowing that thinking about it, talking about it, and trying to plan for it are absolutely necessary to getting out of the cave.
So many things happened between May 14 and June 4 when we found ourselves in the waiting room at Johns Hopkins Medical in Baltimore to meet with Dr. B, the preeminent expert in EDS IV in North America, the new “quarterback” of our medical team (which thankfully includes the best the United States has to offer at three separate, highly-regarded research universities.) In the fog of that time, the “after,” I remember the twice-weekly therapy sessions with our long-time MFT, formulating a plan for our family, the kids, ourselves. The numerous calls at all hours of the day and night with T talking about the unbearable, now plausible and unwelcome. Letting her hold me up so I could vulnerable, scared, needy, raw, and exposed with her, but strong and positive for my husband and boys. It’s impossible to convey how much I needed that—I needed someone I could be scared with, someone that I didn’t need to be strong for, someone I could talk about my fears with, someone to talk me off the ledge when I got too dark. I needed someone clear-headed, empathetic, wise, insightful and supportive who knows me, really knows me. She was, and always has been, that person for me. And thank god for her. Because when I look back at those months now, merely eight months in the rear-view mirror, I don’t know how I would have survived those days and weeks without her. She gave me her strength so I could get up every morning, be there for my husband and kids, laugh, hug, kiss and relish every moment and in quieter moments, think about what my next steps would be.
The last week of school, June 4-7 of 2018 was a whirlwind. The meeting with Dr. B at Johns Hopkins. Flying back from Baltimore with (sort of) good news, the best we could at least hope for in that moment. Celebrating the end of the school year with the kids. Making the best Father’s Day possible for my hubby. I remember ordering live lobsters from Maine so we could bring a bit of his Nova Scotian culture home to celebrate Father’s Day for him. The kids made homemade cards. There were tears of relief and gratitude for another Father’s Day together, thinly veiled to come across as joy in front of the boys.
But with that relief came more questions: Now what? What do we do? R had a pre-scheduled month off from work in July 2018. We had planned to sail Dakota down the California coast and spend time at Catalina Island. But now, shaken to our very core and not sure what we should do, where we should go, what was reasonable in this new world order we found ourselves in, we sat and wondered. Huddled on the couch, we asked ourselves – What do we do now? Sailing offshore felt out of the question. Travelling anywhere there wasn’t a top-notch vascular surgeon within miles was an impossibility. Turns out that’s a pretty limiting set of factors when you’re looking at the globe and figuring out where we can travel on a last-minute basis in the middle of summer as an airline employee family who flies on a stand-by basis. All we knew was that we needed to be together. To regroup as a family. To be with family. To reconnect with family. So, we started thinking about Canada–we wanted to reconnect with family there, to introduce the boys to their Grandpa Dixon (Ryan’s dad), who is buried in Northern Ontario, and we had family fighting their own medical battles in Nova Scotia and aging relatives we hadn’t seen in far too long. So, in the end, we decided at the last minute (quite literally days before our July 9th departure) to set off on an epic 3100-kilometer road-trip in Canada. We reasoned, there is top-level care available everywhere we would be, Ryan’s own relatives had previously managed their own EDS care there, and it was close enough to Baltimore that we could get there by plane or helicopter if needed. Elliott would turn 10 in August towards the end of our trip, and it has always been a dream of Ryan’s (and Elliott’s) to attend the same sleep-away hockey camp that Ryan went to as a kid. So, off we went! (More on our Canadian adventures HERE). After returning home in August, we felt reconnected, recalibrated and had a chance to regroup, make new memories, relive old ones, and assuage our passion for travel as a family.
And now? Well, the “After” is where we live now. It’ll always be where we live. And you know what? That’s ok. Actually, it’s better than ok, it’s our version of the best, because for me, the best is wherever he is, wherever we are together as a family. To be clear, 2018 brought us some very dark moments. But it also brought hope. And while hope isn’t my “strategy,” it is a place to start. For me, there’s no better place to start than a place of hope, unconditional and enduring love, and the knowledge that at the end of the day, we are living the best version of our lives that we can. This year Ryan is using the Passion Planner as well and together we are working on planning his retirement and taking Dakota back to Mexico, our happy place (aware of the risks but with plans in place, of course). We plan to bring travel back into our lives in 2019 (it’s been far too long since we’ve all been on a plane to a foreign destination together). And we want to make at least one our trips a service-based trip (provided our medical facilities conditions can be met wherever we go).
While we have a lot of goals and big dreams for 2019, I’m going to remind myself that it’s perfectly okay to DO less so we can BE more. #dolessbemore