When life hands you lemons, make lemonade, they say. The number of times I have rolled my eyes at this saying, eyeballs deep in a major catastrophe, seem too many to count. The challenge seems too big in the moment to even imagine the other side of it. Yet, somehow, I have found myself pulling myself up each time and marching on, finding the light at the end of the tunnel.
As leaders, we have to. There is literally no other choice. It doesn’t make it any easier, but repetition does make it more familiar. However, last year, I found myself in a personal battle I had no roadmap for. We had noticed that my daughter had some issues from birth – all seemingly excused away by her medical professionals. Torticollis? Well, that was the positioning in utero. Helmet? That was the positioning as well. Hip dysplasia? Yup, also the positioning. Not passing her first hearing exam, but quickly passing the second try? Oh, that happens when babies are born by C-section. Balance issues? That’s the hip dysplasia and the brace she wore for two years. Speech delays? That’s because you speak multiple languages in the home.
We saw countless doctors, geneticists, neurologists and therapists, with no one giving us a solid answer. That was until the hearing loss. Then the world seemed to listen up. No-one in our family had hearing loss, and I knew something was dreadfully wrong. After we did a full exome test on her genes, we discovered she has an ultra-rare disease called alpha-mannosidosis, a progressive disorder that if left untreated can cause early death due to muscle, skeletal and cognitive problems. As a parent, you feel like your life is falling apart. How can this be happening to your beloved little girl?
Relentless research helped me discover that the best treatment to stop the disease’s progression was a bone marrow transplant. It would essentially teach my daughter’s brain to make the enzyme she was missing to break down sugars that were currently storing all over her body, causing all her defects. But a bone marrow transplant? This is a risky procedure that can cause death in certain kiddos. Doing nothing was wrong, and doing a bone marrow transplant didn’t feel right. And yet, I told myself, you have to feel the fear and do it anyway. We found a team in Minneapolis that we trusted and moved up north for seven months to undergo the procedure.
Your mind can go to very dark places watching a healthy kid get sick, watching their hair fall out, watching them bloat and lose weight all while knowing you were the one to make the choice to put them through it. But we also knew this was the best chance we could give her for a normal life. We weren’t around family or friends, we had to isolate due to her immune system being compromised. It was incredibly lonely and difficult.
Despite everything, I still had a business to run, even from the opposite end of the country and in the throes of a personal crisis. And then, more lemons: During this time, I had two senior people at my company leave – in fact, one left when I was in the middle of a 40-day stay in hospital with my sick daughter. My heart ached, my mind and body were exhausted, and now I had to deal with this as well. The storm was raining on my personal life and on my business. Yet, I found the strength to continue – on both fronts. I constantly reached down deep to remember other difficult times I had gone through. Yes, I told myself, there is a light at the end of the tunnel. And I would repeat that over and over, not only because I had to, but because as a leader, carrying on and seeing the light in the darkness is in my nature. As small-business leaders, we can often feel alone in a crisis. All decisions are our decisions, all the actions that need to be taken are on our shoulders to manage. Who looks at their CEO and says, hey, take a day off? We are not alone, of course; we have teams and confidants, family and friends. But in those moments, it certainly does feel like it is only ours to own.
When my working days were brutal and I would then have to walk into the hospital room and smile at my sick little baby, I am not going to lie, it was at times impossible to remember that little light calling me. But I went from moment to moment, and then minute to minute, then hour to hour, and then day to day. That’s what leaders do. And the light continually got brighter.
While I pray that no one reading this ever has to go through what I did last year, what I can say is that even if you do: there is another side.
As leaders, we need to know that tough times will come, whether it be those senior people who leave at inconvenient times, that consistent client who says “no” this year when you were relying on that income, or a personal tragedy that will turn your life upside down. These times will come, and they won’t stop coming. Why? This is life and life will dole you out all the beauty you want, but it will also remind you of that beauty with challenges and struggles that are thrown your way. I believe that it is through these challenges and struggles that we learn the most about ourselves and our capability to endure, grow and excel.
I have been back in Miami for five months now and I have seen miracles in my daughter. Her balance is better than it ever has been, her speech is improving day by day, the fog that was in her eyes has lifted and she currently sports a cute little pixie cut now that her hair is growing back. She inspires me each and every day. If she can go through chemo and keep on going, I can be that strong mama bear she needs so much. If she can move on from something so emotionally and physically taxing, I can show up and lead my company, no matter what the struggles are that day.
Despite all the despair of last year, I am certain I am better for it, and it has helped me be a better leader each day since.
