Over the past month, I have spoken to seven families who have dealt with the horror of Diffuse Intrinsic Pontine Glioma, or DIPG. As painful as it is to hear about their loss and heartbreak, it has also been wonderful to hear about their children. These parents have such admiration, love, and fondness both for the children they have lost and the siblings that survive.
My heart goes out to all of them.
What I didn’t expect when I started this journey was the judgement and isolation these families would tell me they experienced upon learning their child had DIPG. It didn’t (and still doesn’t) make sense to me.
How is it that families stricken by this nightmare are ostracized and judged by their own relatives and communities?
While I couldn’t possibly address all of the nuances at the root of this problem, there are a handful of common issues I believe contribute.
It’s Not About Attention, it’s About Awareness
I had a conversation with someone who shared with me that he was bothered by the level of attention some children with terminal cancer receive.
“A lot of children have cancer,” he had said. “Why is so much attention given to a few?”
The comment felt like a slap in the face. First of all, what does it matter if one or two children receive the majority of the attention? I can’t speak for all kids with cancer, but when it comes to kids with DIPG, it’s an all-for-one and one-for-all mentality.
Attention given to one child with DIPG is much-needed awareness given to the disease as a whole. Aside from a select few (saintly) people, the government hasn’t paid attention to the disease, the medical community hasn’t paid attention to the disease, and the research community hasn’t paid attention to the disease.
So when one or two children capture an audience, you’ll be damn sure jealousy isn’t even on the radar of others within the DIPG community. What actually happens is rejoicing because awareness is finally being spread.
It’s NOT ABOUT LUXURY
The entire point of giving special attention to these kids is that they are going through hell. Hell. Many of these children are diagnosed once they start to show symptoms and can’t walk within a week. That’s how fast this disease takes over.
One parent whose daughter is still fighting this demon shared last night that someone said, “I bet you guys have gotten to do a lot of fun things as a result of (DIPG).”
The comment floored me.
Their daughter — a healthy, vivacious, strong-willed girl with her life ahead of her — was diagnosed six months ago. She has since had two brain surgeries, can’t walk, has double vision, can’t use one side of her body, and lives each day with her family not knowing if it will be her last. Fairly certain the last word that should be used to describe that ordeal is “fun.”
Trips to Disney, visits from professional athletes, time spent in a suite at a sporting event, toys, games, and money, are all attempts to squeeze a precious smile out of this little girl who has dealt with more over the past six months than the majority of us will ever have to deal with in our lifetime.
Think before you speak.
It’s Not Always Comfortable
Once you learn of a child who has been diagnosed with DIPG, it’s uncomfortable. You don’t know what to say, how to say it, when to say it, whether you should say anything at all. I get it. I really do. The last thing you want to do is make an idiot of yourself right?
Well, I’m here to give you permission to make an idiot out of yourself in the name of love, kindness, and compassion. If you put your foot in your mouth, so be it. At least the recipient of your attempt will know you care.
All of the families I have spoken to reported that they immediately felt alone and isolated upon receiving the DIPG diagnosis. They had no idea who to turn to and felt like the world was moving on without them and their precious baby. It is so sad that they are made to feel that way in a moment when they need people most.
Yes, there are some who don’t want to talk to anyone and need time to digest the devastating news they’ve just been handed. That’s understandable, too, but it doesn’t mean you can’t make an effort.
Suggestions of what to say:
- “What can I do for you?”
- “What do you need?”
- “How can I help?”
- “I’m here when you need me – I’ll check in next week.”
Don’t second guess reaching out. You may feel guilty because you have your own healthy children, but you shouldn’t. Don’t let something like that stand in the way of being a shoulder for someone to cry on.
It’s Not Something You Get Over
One mom told me that, upon posting weekly memories about her daughter who had passed away, someone expressed discomfort and suggested that “enough time had passed” that she should start moving on. Another mom told me that someone in her family had mentioned she should “be over” her son’s death and “get a real job” after six months had passed.
Yet another shared that she knew of many members of the DIPG community who suffered the loss of their child and were subsequently forgotten by the medical community, so to speak. No more check-ins, no more care, no more wondering how they are doing. It’s like their child never existed.
Why am I telling you this? Because the death of a child isn’t something anyone “gets over.” Have I experienced the death of a child? No. But I recognize that getting over a child isn’t something you fix. You don’t go to a counselor so you can move on from that kind of loss, you go so you can cope. It’s something that becomes a part of you.
I have one friend who lost her 16-month-old daughter almost 30 years ago. The ache of that loss has never gone away. I often look at my own baby girl – now 13 months – and think about how it would feel to suddenly lose her without warning. The pain and agony that would accompany that is overwhelming.
There would be no “getting over” it. No one gets over it. Don’t try to tell someone they should get over it. Instead, share your memories of their child, ask them for theirs, tell them you’re thinking about them. Don’t try to fix them with exactly the right comment or expect them to spew sunshine and rainbows for your benefit.
Their heart hurts and it will always hurt. Be understanding and compassionate instead of judgmental and isolating and our world will be a much better place.