This post is going to be different from all the rest. Next week I’ll get back to the heart of this blog: celebrating the life of Julianna. Today, I have to share something that’s been on my mind.
In the next few weeks, our family’s story will be featured in People magazine.
The story is from our point of view, and it will (I hope) show how our love for Julianna and Alex drives everything we do while facing a difficult situation.
We share our personal (and sometimes painful) story for lots of reasons, but here’s the one I want to focus on today: we are really not that unique. There are thousands of families around the world who are caring for and loving a child with a terminal illness. We don’t often hear their stories, because it’s not easy to talk about what our lives are like.
So much good has come out of sharing our story, but we’ve also had some criticism. This is a risk you take when you share. I knew that from the beginning, but I was also naïve then. We are loving parents whose daughter has a terminal illness. Every decision we have made about her care has been with the help of medical experts and has been guided by Julianna. How could any of that be controversial?
I know better now. With this new article coming out, the debate about “can a 5 year old decide?” may be renewed. (For those who have difficulty reading beyond the headlines, note this: It’s really the adults who are making the medical decisions. Julianna guides us, but the decisions are ours.) Some will say that we are teaching Julianna that life is not worth fighting for. With this comes the implication that we don’t believe her life is worth fighting for.
I’m anticipating more of this noise, because it’s happened before. These types of comments have appeared on Facebook, other blogs, published articles, and even my Instagram feed.
Parents like us have had their hearts broken a thousand different ways. We have wounds that will never heal, and we have gone through a form of hell on earth. There should be no judgment – but there is. This is one of the reasons why I’ll keep sharing: I want the world to be a safer place for families like ours.
Here are three things I want people to know about what it’s like for parents who are caring for a terminally ill child:
- Assumptions create judgment.
Sometimes, the harshest judgment comes from those who think they know what we are up against. The truth is, even when people share the exact same medical condition, their experiences will not be identical. Sometimes it’s very similar, sometimes it’s wildly divergent. This is why medical care is individualized.
2) We make the best decisions we can with the information we have.
Like all parents, we don’t always know the “right” answer, but we have to do the best we can. The stakes are a lot higher for some of our decisions, and sometimes it feels like torture: If we do X, she may live longer, but Z may happen, and that would be worse. Is the risk of Z worth it? Could I live with myself knowing that Z could have been avoided? What if Z never happens and we’re too afraid to try X? We quintuple guess ourselves – over and over and over again. If you have not had to make these kinds of decisions, be thankful.
3) You want to know that someone else has survived this.
We knew that we weren’t alone, but we felt utterly alone. I desperately wished that I could find other parents who could show me the way. How do you continue to parent when you know you will outlive your child? How do you make these impossible decisions? Is there hope for us?
I didn’t find other parents like us until I began sharing our story publicly. And I wouldn’t have found them if they were not, in turn, willing to share theirs.
I still don’t know what made me send the “heaven” conversations to the Mighty last May– it was almost on a whim. I was clueless back then, and I’m grateful for that. If I had known then that it would generate criticism, I would have never submitted the story.
As they say, ignorance is bliss.