Yesterday was the first day of summer at home with my girls. Up to this point I've been a stay-at-home father with responsibilities for a young child and this summer promised to be different. My girls are now 10, almost 11 and 7. They are responsible and fun-loving, don't fight too much and are generally a joy to be around.
In February of this year, I lost my son to a brain tumor. He was four. My decision to stay at home before he was even conceived was a conscientious reaction of my wife and me to the upstart career family we'd become. She was finishing her residency on her way to becoming a physician and I was in the midst of the generalized function of middle management, learning a lot at a company I loved and had joined during its infancy. We prioritized family, partly due to our priorities and partly out of self preservation. Working long hours and raising small children was taking its toll and was unsustainable.
My son was born in July following my first year of being a stay-at-home-dad. This was baptism by fire. Growing up, I was not given examples of how to be at home with an infant. My wife gave me a two month crash course which was ended abruptly by her leave policy from work. It was good time, but too short.
What was to follow became increasingly stressful for me. I became strung out, with little sleep, no idea what to do with an infant, and making first time parent mistakes that I regretted for years. But I knew my son in a way that few fathers did. And it became one of the best decisions I've ever made. It put me in a position to maximize his short life and the privilege of giving him what he needed to be happy.
Our lives revolved around him and the treatment he required for the 16 months following his diagnosis. Up to that point, he'd been a needy baby, grumpy and an unlikely sleeper. He was a beautiful boy. A wonderful addition, rounding out our family in a way I've come to miss deeply. As a couple, my wife and I had begun to see the proverbial light at the end of the tunnel. We could have conversations while the kids were awake and be conscious after they were asleep. Occasionally we'd get a weekend where we weren't up at 6am. But then came cancer.
We were plunged into an entirely different lifestyle, friends, environment, needs, everything. The focus of all our activities and energy became entirely directed at our son's treatments. They went as well as could be expected. Our extended family and network of friends and community came to our aid and support for a duration which in retrospect was lengthy, but acquired a cadence of normalcy.
Relapse came suddenly, but not without foresight. We'd seen the signs and knew the odds we faced. Our cautious optimism gave way to resigned realization. We would return to a family of four soon. The gift we had in our son would be short-lived; precious, but brief.
Intensity and quality are bedfellows and the time we had with him near the end of his life was their hallmark. We lived with purpose each minute, knowing that at the same time the following year, he would be absent. We visited family, enjoyed a trip to Disney, had our holidays, family birthdays, and enjoyed some unseasonably warm weather. Sleep eventually began to overtake him and he died days later in a bed we kept for him in our living room. Our entire family surrounded him and we held him and touched him, smiled at him and loved him as he left us. These were sad, sad days. The world spun with uncertainty and desperate grief.
As the school year ended this year, after several months adjusting to life without him, I planned for an enjoyable and fun filled summer for my girls. My hope was to keep myself sane, reward their patience over the past years during their brother's illness and to give them a sense that they can enjoy their lives through small things done well. We will read books, write about our days, practice instruments and music, do our chores and do it all together.