Families are very strong
Families are unbelievably strong. I can tell people that they will get through this. I’ve unfortunately seen a lot of people who’ve had bad outcomes, who’ve had children with bad outcomes, and I can tell them that the family will get through it. They are strong and they will get through. They will be forever changed, but they will make it through.
My bereaved families tell me five, ten, fifteen, and twenty years later is that the pain never goes away. The pain is always there but the experience changes. It’s different with each passing year but it remains equally strong, sad, and beautiful at the same time. The hardest time is not the time around the funeral but the time afterwards. There are going to be lots of hard times in the future.
For caretakers, it’s important to know that you are a major part of people’s lives and you always will be. We send a note to everybody who’s lost a patient at a year for them to hear about them so they can be in touch with the family.
Halcombe Grier MD, Pediatric Oncologist
Waves
You’re never prepared for the biggest wave. You can prepare for the holidays and embrace yourself. The things that set you off the most are the unexpected. Time and time again, I guess the other thing is, and I think parents are really afraid to speak of these, but I think you can do a whole book on just this, I continuously hear parents say “I really miss the signs, I miss those signs.” And when you ask them what they are, they really smack of that child, they’re sort of out of the blue, and I think they’re really helpful and I think they depend on them. I had a mother today say that “I hope they always come because I really miss them and they’re going away.”
Most times it’s a sense of something that just happened or a song that just reminded them or something that just simply smacks of their child. Those things I listen carefully to because they mean a lot to parents. Whether I give credence to them or not is irrelevant. It really doesn’t matter because it’s all about how they believe and think. For them, they’re very meaningful. I guess I encourage that openness to whatever they may receive.
Lisa Pixley RN, Nurse
Learning lessons about joy
The one year anniversary of a patient who holds a very special place in my heart is coming up. I knew her for about 10 years. I think every time I take care of a child or a young adult who eventually dies, there is a learning opportunity that can always be improved upon and I think it is important to integrate those lessons.
What stands out in my mind about this one patient is this persistence of her joy of living and hopefulness and humor throughout her life and end of life course that underscored for me how valuable those qualities are both for the patient, for the entire family, and for the care team who are involved in taking care of her. To uncover the greatest degree of meaning that is possible in the life of a person even if this life is shortened.
Joanne Wolfe MD, Palliative and Advanced Care Team
A part of you
Think of it as something that is a part of you just as their birth and their life is a part of you, that this now is a part of who you are and you accept it as that even the pieces that you don’t really like, it’s still a part of your history, your story, who you are, and who you will be. There’s sort of this past, present, and future wrapped up in that. If you accept that for what it is, I think there’s less disconnect within yourself.
Lisa Pixley RN, Nurse
Trust your gut
I continuously tell parents:
“You will know when that feels right then, that’s what you’ll do, and if you don’t feel like you need to move or clean out that child’s closet or room, then you’re not gonna. It will feel wrong if you do it beforehand. Sit with it and you will know. When you feel like you have the energy and the motivation and you feel it’s the right thing to do, you will do it. Trust your gut.”
I think that’s the best advice I can give them because for the most part, they trust their gut when they’re raising the child almost from conception, so why would you not trust it now.
Lisa Pixley RN, Nurse
Quiet support
I think it is in our nature as human beings to have a tendency to say that “it will be ok.” But you cannot say that here in this situation. We have to find out what the family’s hopes are now and just sit, and support even in silence and let the family know that we care so much about you and the child and we are not going anywhere. We will see you through this. We will come along this experience with you and we will be there in any way that we can to support you because we know parents are not looking at us to say it is ok.
Beth Donegan, Child Life Specialist
Keep their memories
There are so many things. Not being afraid to talk about the child. Not being afraid to acknowledge the loss of what might have been if the child had lived. Be keepers of the memory.
Cynthia Levin RN, Center for Families
Heavy luggage
I think it’s not about “moving on,” it’s really about “living with” because you’re forced to. It’s sort of like luggage that’s really heavy, you don’t let it down at the airport. You’re holding on to it all the time. It doesn’t get less heavy. It doesn’t go away. You don’t let it go. It’s sort of that your muscles get a little bit stronger and you’re a little bit straighter walking when you carry it. I find that’s the difference. If you think of it as something that is a part of you just as their birth and their life is a part of you, that this now is a part of who you are and you accept it as that even the pieces that you don’t really like, it’s still a part of your history, your story, who you are, and who you will be. There’s sort of this past, present, and future wrapped up in that. If you accept that for what it is, I think there’s less disconnect within yourself.
Lisa Pixley RN, Nurse
Change and transformation
I have particularly learned from families preparing for their child’s death, and also from families after their child’s death that these experiences change and transform their lives. So as devastating as it is that they’ve lost a child, most families and members in a family go on to do powerful and meaningful things, and that you can see the thread of the things that they’re doing that tie back to their daughter or son who died.
The possibility of growth and transformation is there and it’s partly there because of the suffering, that in having your values and the way you construct meaning in your life challenged, that part of what people do is that they learn to reconstruct meaning, and they learn to find the goodness despite the pain and the suffering. Jumper Sanko is a health psychologist, and she talks about that as spiritual courage, the ability to say “Yes, there’s been difficulty and pain, but within that difficulty and pain, I’ve learned this.” Or “I’ve grown this way.” Or “I’ve been able to start a foundation or touch other lives.” So watching families over the years, I’ve seen that tremendous growth and transformation happen, both before a child has died, as well as after, as they’re working through their grieving process.
Laura Basili PhD, Clinical Psychologist
Every child makes a huge difference
What I have gained in doing this work is hard to even describe because it is so rich, it’s how beloved children generally are within families no matter what their talents or their unique qualities are. There is no role to judge what is better or worse, but you know you love what you get. Every child seems to make a huge difference and have a great impact in the lives of their family members and their communities. Again, no matter what their unique qualities are. The contributions these children have had on their families and society suggests to me that they are so incredibly valuable.
Joanne Wolfe MD, Palliative and Advanced Care Team