If I could I would have you over for tea and give you a big hug. Like the rest of the world, during the past six months, I have seen your beautiful son in the news. Unlike the rest of the world, I didn’t jump into the heated ethical debates and outrage. It wasn’t because I didn’t care; it was because I cared too much.
I knew what you wanted. I felt your heart. You see, four and a half years ago, I easily could have been in your shoes. I could have been, but I wasn’t. Instead, four and a half years ago, after fourteen months of fighting for our son, who was born with a progressive neuromuscular disorder, I held my baby in my arms, surrounded by family at home, and we removed life support.
My son John Paul’s condition (Spinal Muscular Atrophy) was very similar to Charlie's condition (Mitochondrial Depletion Syndrome). Both conditions are autosomal recessive disorders, genetic mutations that are progressive, affecting all the muscles in the body. Like Charlie, soon after birth John Paul could not breathe or eat on his own. He had a radiant smile, but toward the end he lost his ability to even do that. Like Charlie, many doctors thought we were playing God by having our son on a ventilator. Many believed a life without movement wasn't worth our pain and sacrifice. But we knew, as you did, they were wrong. Luckily, in our case, the law didn't stand in our way and we found doctors who helped us take John Paul home and care for him as best we could, for as long as we could.
The purpose of this letter, though, is not to compare stories. It is not to unite in arms against the doctors who didn’t fight the way we would have wanted, or to rally against a flawed legal system. As tempting as it is to brood on the injustice of Charlie's situation, and the callousness toward this fragile human life, Charlie's passing is a time to celebrate the power of goodness that can reverberate through the world, even through the most helpless of messengers or the most trying of times.
In the weeks, months, and years since my son died, I have been tempted to harp on what could have happened and what should have happened. We could spend our lives pointing fingers and being consumed with anger or regret, but we would be doing our sons a disservice. That is not what we want their legacy to be.
I have heard, countless times, people say, “There is no greater pain than that of a parent who loses a child.” Honestly, I have never found that to be very helpful. Nor have I found it to be universally true. While I can’t dismiss the stress, the tears, and the heartache I experienced watching my son progressively lose strength—and I would be lying if I told you I didn’t miss him every day—I can honestly tell you that having a child with a terminal illness is the best thing that ever happened to me. I know that sounds shocking, especially for women who have never been in our shoes, but hear me out.
For starters, the day I became the mother of John Paul, my relationship with my husband was transformed. While I wouldn’t say our marriage was in trouble before he was born, our experience of caring for and losing our son deepened our relationship in a way that few things could. I would compare it to soldiers who have enlisted and are training together and then find themselves in battle side by side. At the end of the war, they are bonded like brothers. Some say that the sacrifices of parenting can destroy a marriage, but our experience proved otherwise. If we let them, those bitter days on the battle field—whether we are fighting for our child's life or our sanity—can create a sense of unity that is unshakable. I know I have my son to thank for that. If you let him, Charlie can be that inseparable bond in your marriage, too.
My experience with John Paul also affected my relationships with my other children. Those agonizing days closely witnessing my son's disease take hold of his body was a study in gratitude. Every day he had movement and was in my care was miracle. Today, John Paul is a constant reminder to stop and not only be grateful, but also to enjoy this time I have with them, with anyone, really. Charlie, like my son, is a reminder of how quickly our time passes. Even though some days may seem to crawl.
Connie, like you will, I faced one of life’s greatest challenges and—with a ton of help—survived. Now, I find, I don’t have much if anything to fear. You will die. I will die. Everyone we know will die and we can decide to let it crush us, or be richer for having dared to love. We can be witnesses to this kind of fearless love, thanks to the brief, but powerful lives of our sons.
At one point you were quoted saying that Charlie had done more good in his 11 months than many would in a lifetime. I’ve lost count of the times I’ve said the same for my John Paul. The truth is, Charlie’s not done yet. Just as you were his advocate when he was alive, you will continue to tell his story your entire life.
Remember, Charlie's legacy of generosity has caused ripple effects. Like you, I was the recipient of incredible generosity during the time we had John Paul. It will take the rest of my life to express gratitude for all of the support we were given, not only by family and friends but also by total strangers. Charlie, like John Paul, inspired goodness and selfless love from people all over the world. That is their greatest power—that their memory can live on to remind us there's always good to be found.
Be patient with yourself. It took a long time for me to get to the point of really appreciating the sacrifices we made, and my son made, before I could reap the benefits. Do not be afraid of healing. No matter how well you heal, Charlie is an integral part of who you are now. It may take a while to feel anything at all, and then there will be tears, and then little by little you will find yourself smiling through the tears and saying you’d do it all over again because loving is always worthwhile.
The world may seem a hostile place right now, if it had no place for Charlie. But don't listen to the angry noise. Charlie found his place; he lived his life's work as a witness to love. I promise you I will do my part to celebrate his legacy.
And, if you are ever Stateside, I’ll be ready to put the kettle on.
Photo Credit: Vine and Light