Through this blog, I have had the unique opportunity to be connected to many, many families who have lost a child. Some to DIPG, others to different diseases or circumstances. I have benefitted greatly from the advice and wisdom of those who have walked this sometimes lonely, scary path before me. Recently, I have received several emails from people who have loved ones newly diagnosed with DIPG asking for my opinions on dealing with its harsh realities. I actually feel woefully unqualified to answer these queries. Though we have journeyed the DIPG road, I can’t say that what we did or didn’t do was right. I know that sometimes when we talk about not treating Stella, it can sound like a judgment against the families who did decide to treat, but far from it. The only true advice I have is to just keep going. But I thought that, in case it’s helpful to anyone who comes after, I would write a general letter to DIPG families telling them some of the things that I’ve learned so far. So…here goes:
July 27, 2013
I’m so sorry to have to write this letter to you. I’m sorry because I know that your heart is broken, smashed into a million pieces that cut your soul and that it hurts even to breathe. I’m sorry that your child got this dreaded disease. They say it’s “rare”, but that word means nothing when you are one of the ones touched by it. DIPG stands for “Diffuse Intrinsic Pontine Glioma”, but to us it just means your child is going to die. I’m just so sorry. The pain is unbearable, isn’t it? And I know that you may be clinging to hope that maybe your child will make it, and I don’t think that’s a bad thing at all. I know you are probably scouring the Internet late into the night, googling things like “DIPG survivors” and trolling message boards looking for some story with a happy ending. That’s okay. But the truth is, I don’t think you’re going to find what you’re looking for because what you really want is for someone to tell you that there’s been a horrible mistake. That it was someone else’s MRI that got mixed up with your child’s. You want to believe there was a misdiagnosis, and it really just is something minor that will pass. DIPG sounds too horrible to be true. “Why us? Why my child?” is chorusing through your brain. There is no answer to this. There is no reason.
I think that the most important thing to remember is that every parent’s journey is different, and every child’s needs are individual. Do not be afraid to do what you feel is best. When your child is first born and you have parenting needs or questions, we are encouraged to look up to the experts. There are countless books, articles, websites, friends and family members who are happy to give their advice on feeding, potty training, conflict resolution, discipline, etc. However, when you find out that your child is going to die there is a marked lack of “how to” instructions provided. All you are met with is deafening silence. That is because there is no how to. It is too horrific a reality to contemplate for most people. But this is your reality, and it was my reality. And there’s no use mincing words. It’s awful.
I find it difficult to give advice because everyone’s journey is so different. But I am happy to share some of the things I learned, and hope that maybe there is something here that can be of a little help, or the tiniest bit of comfort as you navigate this journey.
Take care of yourself. Some people call this the “airplane rule”. You know how when you’re flying, before securing an oxygen mask on someone younger or frailer than you, you need to put yours on first because you’re no good to anyone if you faint. It’s the same in this case. You need to eat and sleep and take care of yourself as much as possible. It’s hard to do. Part of you might want to suffer because you know your child is suffering and it doesn’t seem fair. Part of you might just forget or be distracted because you’re too busy trying to just get through the day. Part of you might want to die along with your child. It’s unrealistic to expect to feel “well” all of the time, but you also need to keep up your strength as much as possible. This is a marathon of physical, mental and emotional pain. Pace yourself. Look after yourself. It’s basic but of the utmost importance. Sleep, eat, breathe.
Prioritize. The next advice I would give is to not let the small things in life distract you. As horrific as the impending death of your child is, you have notice of it. You can cut out anything that is not completely necessary and should be free of guilt about it. Anyone who doesn’t understand cannot be part of your world right now. This means if going to your sister’s wedding means being away from your child for a night and you don’t want to, or can’t bear to do it, don’t go. If the annual camp reunion is coming up and you think people will be mad at you if you don’t go, they’ll get over it. Don’t get me wrong, it also means that if you feel up to it and want a break, you should be able to do what you want and need. But never feel as though you’re being forced into anything against your will. Go and do only the things you really and truly want to.
Take as many photos and videos as possible. This is a bit tricky for a few reasons. First of all, if your child is getting sicker and sicker, you may not want visual reminders of this time in your life later on. But then again, you might. Secondly, I find that sometimes when we are so busy trying to focus on capturing moments and memories on film, we forget to stay present to the moment and miss the enjoyment because we are seeing it through a lens, away from the actual events. That said; remember that unlike most other parents, you are going to have only a finite amount of videos and photos to sift through of your child for the rest of your life. Whatever you have once they die is all you’re going to get and on those days when you want to remember the exact curve of the curl on your daughter’s forehead, it’s nice to have a photo of it. I took pictures of my daughter’s toes, chipped nail polish and all. Of her face from every single angle, close enough that I could see the pores on her skin. We took as many videos as we could of her speaking so that later, when our memories start to fade as they are sure to do, we can remember the sound of her laughter bouncing off the walls, and the way she said “Ma-ama” to me, as though there was an extra syllable in it. Take videos of yourself reading a book to your child, of you eating breakfast as a family. Of the normal, regular times because they are what you will miss the most.
Accept help. As human beings, we are programmed to say, “No, I’m fine, we’re okay, really”. You are not okay. You are not fine. People don’t know what to do to make you feel better. They want to help, let them. If they want to cook you enough lasagna to feed your family for a month, break out the Tupperware and freeze it for later. If they want to donate $500 so you can buy a new bike for your child, give your kid the Canadian Tire flyer. If they offer to take your dog for a month so you can focus on your family, pack Fido’s bag, and send him off. If a stranger offers you their cottage free of charge for a week so you can make some family memories, buy a lifejacket and drive north. Never feel obligated to do anything or accept anything, but don’t close your mind off to it either. You are in a horrific situation. If it helps you and makes someone feel helpful in the process, it’s a win-win. You need help. You should not have to worry about doing the laundry, filling the car with gas, sending out birthday cards on time or organizing the local rummage sale. This is an extreme situation, give yourself permission to do what you need to do when you need to do it and eliminate the guilt.
Stay true to yourself, your child and your own family’s convictions and priorities. You will be getting lots of advice and suggestions from well meaning people. Religious sentiments, medical suggestions such as homeopathic alternatives, conflicting research reports and too much information to wade through. It is easy to become overwhelmed. My suggestion would be to go with your gut. There is no right or wrong when it comes to the death of your child. As long as you are secure that you are doing what feels right, and what is giving you and your family the best chance at a high quality of life for as long as possible, you are doing what you need to do.
Don’t be afraid to enjoy this time. Your child is going to die. It’s a horrific reality. And I’m sure there will be days when you don’t want the time with your child to end, and other times when it’s so hard you just wish it were all over. As crazy and counter-intuitive as it may sound, try to find the joyous moments that come between all the tears and heartache. Remember, your child is dying, but they are not dead. They are alive, LIVING. Depending on how progression goes, there are still so many things that can be enjoyed. My daughter loved nothing more than to dance. When she lost her ability to walk, she danced with her head and torso. When she could no longer sit up, she danced with her one good arm. When she couldn’t move anything anymore, she danced with her eyes and her smile. These are some of the best days in your life, because your child is still here. Still able to be held, to be loved, to stand up and be counted. Many of the best moments in life— in everyone’s life— are sometimes the ones we might not notice otherwise. The laughter that occurs as we tickle our child just before bed. The off-key rendition of “itsy bitsy spider” as we get ready for a bath. The softness of a flower against your skin. These moments are almost never celebrated, there are rarely photos of them, but they are among the most precious and important in your life and I encourage you to look for them actively, and enjoy them.
Love openly. The world has betrayed you in the worst possible way. But don’t close your mind and your heart to the possibilities and life around you. Don’t be afraid to love, I think it’s what our children would want, and one of the greatest lessons they can teach us. Love without borders, without reservations, without anger or bitterness. Love because on the worst days of this journey, it is the only thing that will keep you from giving up. Love is your oxygen, breathe it in.
I’m sorry to have to write this letter to you. I’m sorry I know bits and pieces of how you feel. I’m sorry that you will have to learn some very hard lessons on your own. But I hope that you know that a bond neither one of us wanted, but that may just help in the darkest of days, connects us forever.
With tears and understanding,
“The light of a distant star continues to reach the Earth, long after the star itself is gone”
Stella Joy Bruner-Methven
April 18, 2009-October 22, 2012