14 years ago, my daughter Robin was, out of the blue, diagnosed with end-stage heart failure, specifically dilated cardiomyopathy . She was 8 years old, and we’d had no warning she was even sick. To make a fairly short story even shorter, we took her to see a cardiologist, who said, after her exam, (and I will never forget these words) “I’ve never seen a heart this sick walk in off the street.” A whirl-wind few months later, in and out of hospitals, and with a few close calls, we had her fairly stable and at home to wait for a transplantable heart. We had to keep her quarantined to keep her infection-free. I had been a home-dad for the previous 13 years, and continued as such, taking on the new role of, essentially, doing what I could to keep her alive. She had to stay home from school, so we set up a very rudimentary home-school, with great assistance from our local elementary school.
It was on February 16, 2000, that we got “The Call,” from the amazing Children’s Hospital in Boston telling us they had a heart, and we had to hustle on down. An agonizing day later, she was in her recovery bed (they said it had been one of their fastest transplants), struggling to wake up, and very angry with the breathing tube. She was out of the hospital and home in 7 days, one of the fastest recoveries they had seen. At that time, we had been well informed that a heart transplant is not a cure, but the substitution of a bad condition for a better one. She’d need constant medical attention, and be on immune suppressing drugs the rest of her life. (Oddly, she and I take the same medication, Cellcept .)
I have to give a HUGE shout out to the family of the little girl who died that day, who had the astonishing clarity of mind in the midst of an unimaginable tragedy to donate everything of their daughter Tara that they could, thus saving or changing not only my Robin’s life, but those of several other people. Please visit the The Tara Bean Foundation set up by her mother to learn more. (And please carry an organ donor card in your wallet!) We are eternally grateful for the gift of life they gave us.
Way back then, we hardly dared to hope that she would survive to graduate from high school. Fast-forward (seems REALLY fast to me) to last Saturday, when she graduated from Keene State College .She is a bright, smart young lady who has taught me a great deal over the years about the purpose of life. I tell people that, through all she has been through, she’s been a sparkle.
I guess my point here is that I have learned – and continue to learn – a great deal from Robin, my wife and son , siblings, parents, in-laws, extended family, friends, and people I have never met, about hope, perseverance, tolerance, flexibility, finding joy in the face of adversity, the astonishing power of prayer, and that miracles happen every day. Any time I am feeling that the weight of my own situation might be more than I can carry, I don’t have to look far to find plenty of people who are actively helping to carry parts of that weight, and plenty of others who carry far more than I ever will. God, or Allah, or The Great Spirit, or whatever you call That Which Is Greater Than Us, never gives us more than we can bear.