Two Camps

In conversation with a dear friend lately about being an SMA family, she remarked that we as a group tend to be divided into two camps: those who chose the palliative route and those who chose a more aggressive treatment route. I hadn't really thought of it much, to tell you the truth. I've made no secret here that I have deliberately avoided the "SMA culture" and whether that is good or bad I make no judgment. It just is where I'm at right now, and if it needs to change, I trust God to move in my heart.

Making the decision on the best care for your child and your family is an incredibly difficult one. I believe we were encouraged to consider the palliative route, but I also believe that was out of experience and much consideration of the alternatives. If we had chosen a more aggressive route, we would have had support for that as well. I believe the medical team we worked with had a great respect for the decision. If you asked me a year or two ago if I would have liked to consult with families before we made our decisions who had experience from each alternative, I would have said yes. Now I'm not so sure.

My observations over the years when I have come across similar situations with different outcomes is that those who have chosen a more aggressive treatment route believe they are fighting for their children and have often already decided that those who chose palliative care gave up on their children. That they were selfish, not wanting to care for a high-needs child, or put their families through difficulty. That it was easier to let their children die. As if they had no more relationship with their child than the family pet.

On the other hand, if we are being honest, how often have we who chose palliative care for our children wondered if those who have pursued a more aggressive, round-the-clock treatment for their children had taken everyone's best interests at heart. The demands of caring for a fragile, terminally ill child can take a heavy toll on those in the family who are not prepared for the long haul.

Before you stop reading and start writing me a scathing response, hear me out. Neither judgment is fair. Why do we even have these two camps? Why is there not the respect for each family's individual decision made in the context of so many things you will never be able to fully know? Friends, those of you who are selflessly caring for your beautiful children with SMA around the clock, I applaud you. You knew what the right path was for your child and you took it, knowing that it would not be easy. Companions, those of you who gave your children with SMA as much love as they could take while still here on this earth and then bravely let them go when it was their time, I applaud you. You knew what the right path was for your child and you took it, knowing that it would not be easy.

I felt condemned for a long time, by myself and others, when I would hear of children with SMA living long past the average, but with great cost and sacrifice. Did I give up too soon? Was I selfish? I had to let that go and come to peace with the decisions we made and the care we provided, or it would have eaten me up like a cancer. I believe with my whole heart that we did the right thing for our children, just as you believe you are doing the right thing for your children. We can't make a judgment on which camp is right. God's will for each family is going to be different. But we could start supporting each other and work together toward the common goal of finding a cure for this horrible disease.