Grieving Voices

Faith Wilcox | One Year to Live; Forever Without My Daughter

August 10, 2021 Victoria V | Faith Wilcox Episode 59
Grieving Voices
Faith Wilcox | One Year to Live; Forever Without My Daughter
Show Notes Transcript

On a day like many others, Faith had taken her daughter, Elizabeth, to a doctor’s appointment to investigate Elizabeth's knee pain.

What was thought to be an innocent visit to the doctor, who suspected the issue was nothing serious, quickly turned the family’s life upside down. After an X-ray and further testing, they learned Elizabeth had Stage IV osteosarcoma, a rare bone cancer.

They didn’t know it at the time, but Elizabeth had one year to live. The last three weeks of her life were on Hospice care. Faith would spend the next 10-12 years of her life grappling with the sorrow of losing her daughter before she felt like the grief had loosened its grip on her life.

The writing she had done while at Elizabeth’s bedside would later become a memoir. It’s about the story of a courageous and compassionate young woman and a grieving mother and family. Faith shares insights into things she learned at her daughter's bedside, the many stays in the hospital, tips to understanding and absorbing the medical jargon, and all that came after.

What would you do if you knew you had one year to live?

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Victoria Volk  00:00
Thank you for tuning in to another episode of grieving voices if you've been here before And if this is your first time Welcome. Thank you for being here. And Today my guest is faith Wilcox, and her 13 year old daughter Elizabeth was diagnosed with a rare bone cancer that took her life. faith journey from grief and despair to moments of comfort and peace taught her life affirming lessons, which she shares today through her writing. face. Faith is the author of Hope is a bright star, a mother's memoir of love, loss and learning to live again, which will be published in June 2021. Faith is also the author of facing into the wind, a mother's healing after the loss of her child, a book of poetry. A longtime resident of Massachusetts faith leads a journal writing program at Mass General Hospital for Children for patients and their families designed to give participants the opportunity to express themselves, alleviate stress, celebrate victories, and honor their grief. And today, I honor your grief by having you as a guest. So thank you for being here.

Faith Wilcox  01:10
Thank you very much for this opportunity.

Victoria Volk  01:13
So let's start share the story of Elizabeth with us.

Faith Wilcox  01:18
Of course, Elizabeth was a very happy, outgoing, often Silly child. And she was a star swimmer and the soccer player. And the summer of her seventh grade year, she started complaining of pains in her knees, and, and one knee and after a short period of time, we went to see the doctor, the first doctor did not think there was anything unusual going on. And then a few weeks later, we went to see a a orthopedic doctor who took an X ray. And then our world started tumbling in on us. I wish saved a call very soon thereafter. And we went into Mass General Hospital. And I didn't know that we were going to see an orthopedic oncologist. But when we entered the room, that was quite a big shock for me. But Elizabeth fortunately, didn't see the placard on the door that said oncologist, but we could see when we were in the room that we were in a very different kind of setting, because many people had prostheses or some apparent problem. So after three days of diagnoses and a small surgery, we found out that Elizabeth had osteo sarcoma, which is a very rare type of bone cancer, and it's a very aggressive type of bone cancer as well, because bone cells are growing in adolescence quite rapidly. So it's a terrible time to get the disease. Listen to this had nine months of chemotherapy and radiation treatments. It was a very, very rugged ordeal. She did extraordinarily well through the whole process. Of course, she did well in her spirits. But of course there were times that were so very hard, just very hard for her to lift her head off the pillow. But she always had an engaging smile. And that lifted my mood and lifted the mood of people under those around her who loved her. She had a great outpouring of support and love, which helps sustain us during these really difficult days. Despite all of the work that was done to help save her, Elizabeth cancer just kept on progressing. And she died in my arms one year after she was diagnosed. One thing that I really love to remember about Elizabeth is that about halfway through her treatments. When we were in the hospital, she would get in her wheelchair, wheeled herself down the hallway, go into rooms and speak with children who had no the arrived on the hospital floor. She would explain procedures to them in a way that they could understand. She took away a lot of their fear. She didn't have very much energy at this point. And for her to share her meager energy really to help others was quite extraordinary. And parents would come up to me and say, we had so much fear walking into here but seeing Elizabeth and hearing her explain what's going on has really helped alleviate a lot of our anxiety. We're really so very appreciative. And this is part of what Elizabeth was she was only 13. But really she started to blossom into a young woman in this process and her compassion for others really grew. And that's something that's one thing that I've learned through her is that understanding how much compassion can help people in their times of need.

Victoria Volk  05:03
That's beautiful. I think a lot about my own daughter, she's 14 now. And she's walking sunshine. very compassionate and thoughtful of others as well. And so my heart goes out to yours. Thank you, Elizabeth. And I do have a medical ish kind of background. And I am curious. Because actually, there's someone in my community too, and I'm not sure if it was the exact same cancer, but I know it was a rare bone cancer, but they're their child's was in the hip. Was in the hip?

Faith Wilcox  05:40
Yes, It can do that.

Victoria Volk  05:44
I'm curious. When it was, when she was diagnosed, had it already spread so much that that mutation wasn't even an option.

Faith Wilcox  05:56
They discussed amputation. But what happened is that Elizabeth, when she was diagnosed was already at stage four cancer. We didn't. I didn't know that for a little while the doctors would tell us information. Step by step, I think so that we weren't totally overwhelmed. I mean, we were overwhelmed, but that I know, they wanted us to keep holding on to hope and there was a chance that she could survive it. But it had already spread like to her to her femur and into her hips and into her sternum.

Victoria Volk  06:42
After her while you're going through this, I know from your information that you shared with me that you do have you have another daughter and so was she, like, how? How did you navigate that as a family that whole year?

Faith Wilcox  06:58
It was extraordinary, extraordinarily difficult. On top of all this, I actually separated from my husband then and went to live with my sister we were our marriage was quite fragile anyway. And I found that he was really not able to help us and provide the support that we needed through this very, very difficult time. So I was in the home with my sister and her husband and her children. So that was very supportive for my older daughter, Olivia. And Olivia and Elizabeth were best friends. They were only 18 months apart in age. Academically, they're only one year apart. So they went on a school bus together, they played and had recess at similar times. I had lunch at similar time. So they were by each other's side all the time. And it was absolutely devastating for Olivia to see Elizabeth grow weaker and weaker and thinner and thinner. And she did the best that she could, but it was so hard for her to because she was only 15 at the time. And she had started a new high school which was much bigger than her middle school. And I remember one day she came home and she looked really upset and she said Mom, kids are complaining that their hamburgers, overcooked mean, don't they understand that there's so many more things to worry about in life. And Alex, you know, really had been thrown in the deep end. And I did my best to support her. And fortunately my sister Susie did a tremendous amount as well to help support her. She was violets best bedside when she could be. But it was lisabeth spent a tremendous amount of time in the hospital as I did with overnights and again, it was supportive my sister, and I have one other sister as well. And family members that really helped Alyssa Olivia during this time. And it was very hard for me. I felt very torn. I felt that I wasn't being as present for Olivia as I could be. But it was so critical that I was present for Elizabeth in the hospital. So I I had to make some very, very hard decisions.

Victoria Volk  09:17
I can't imagine that's a lot of loss and change for a child for you. I mean, that's a lot at one time. How many years ago was this?

Faith Wilcox  09:32
Now, this was 20 years ago which and sometimes it does seem like that much time has gone by and other times I can just close my eyes and see Elizabeth and it doesn't feel at all It feels like maybe a few years have gone by not not two decades.

Victoria Volk  09:49
I can resonate with that. I think a lot of Grievers can, it's you know, it's yesterday was 34 years my dad passed and you know, it was a different This year for me, it was just, I've gone through an end of life. doula training recently and Oh, just conversations I'm having on the podcast about end of life or about just stories like yours like it this year felt a little different for me. And, and they always do, right. I mean, whether it's five years 15 or 25. It's, we evolve with our with our grief.

Faith Wilcox  10:27
We certainly do. And there are times that I'm still surprised, there'll be something, I'll see a friend of my daughter's or I very, in a very loving way got a card from one of her friends who had recently had a baby, but it it, I was thrilled for her. But I also felt so much lost because Elizabeth would have now been 33, and probably would have been at the point of being married and being a mother. And so that's just reminds me about how much laughs there is when, when a child dies.

Victoria Volk  11:06
What were the ways that others I know you mentioned your sister, and how she supported you, and we're there for you. And what were there surprising things that came out of this experience that you learned about grief and about yourself?

Faith Wilcox  11:24
I learned that, well, grief can surprise you. There are times that can be so much harsher. And there are times that you can start to feel a little bit better. And I learned some ways to find comfort and peace. And for me those ways were walking in the woods, with my dog or with my new husband, walking by the seashore. Spending time in nature I find extremely soothing. I also do a tremendous amount of writing. And I found that if I can express myself through my writing, even things that I never really wanted to say out loud, the process of putting them down on paper opened up my mind and in many ways sort of released my anxieties that I had. And I could also write about my hopes and my dreams. But it was a bit certainly was a process. And now I know that grief will stay with me. But it is no longer disabling. I can live my life. Now I remember Elizabeth with great joy and great love. And I can go out and I can give to others in the ways that I do in my in my daily life. So I found that grief changes you. It makes you more compassionate. And it makes you more aware of the world and others who are in need.

Victoria Volk  12:52
I agree. I think when you experience the depth of sorrow, and your loss is your loss, the most important loss is your loss. Right? That's I don't care what the loss is. It's always going to be painful for the person that experiences it. And so that can be our greatest teacher or it can be our greatest debilitate her. And I know there's no there is no timeline degree if there isn't an I speak about this a lot when it comes to grief recovery. Time heals all wounds, you know, that phrase that everybody knows, is a myth. And but I'm curious in the time that it's been since that that loss and that you all the change that happened? How long did it take you to pick up the pieces where you really truly felt? Like, no, I really am okay, this time, like I really do. I got this now.

Faith Wilcox  13:56
It took a long time, I would say more than 10 years. It's hard to say exactly. But I would say probably somewhere between the 12th. And maybe the 13th year, I started to be able to interact with more confidence with people. It wasn't that my confidence was lagging. It's just that sometimes people would bring up Elizabeth or they'd bring up something and I would feel I would either feel hurt or I would feel like I was about to cry. And I didn't want to do that and so many different situations, especially if someone didn't know Elizabeth and didn't know her life. So it really took me quite a while until I build up ways as I said that I knew that I could find some comfort and peace. I also had a lot of therapy along the way. And the therapy helped me tremendously. And I learned you know, I wasn't alone in my grief and I learned that of other people. who had lost children or lost a loved one, and spoke with them. And I sometimes would speak with other people more as a, actually I was more as a listener, and they were speaking to me of their grief of losing their child. And I realized at that point that I'd come a long way because I could listen to them, empathize with them, and not have the same pangs that I did earlier. So it definitely took me more than a decade

Victoria Volk  15:31
In grief recovery too and I have to say this, because for anybody listening, it's never too soon. And it's never too late to address our grief. And I walked a woman through a loss she had only three months ago. And so when I think about my grief, 30 plus years out, and it was only like two years ago, that I really addressed mine, I'm thinking, gosh, over 30 years, or 30 years of my life. Hmm. I feel like if only, if only, and there was things that I tried in between and you know, but nothing worked for me, like grief recovery did. So had I said to you, within a year or two years, this will work for you. Do you think you would have been ready at one to two years? Or do you think you would have been open to that?

Faith Wilcox  16:30
I don't think I would have had the confidence to say that, that some something's going to work, something's going to make me better. I always held on to some hope. But it was. Yes, if someone had come to me one to two years out, I would have said, you know, thank you for trying, but I don't think it's going to work with me.

Victoria Volk  16:52
So let's unpack that a little bit. Because I really think that this will be helpful, not only for me to learn how to speak about grief recovery, but also for listeners, because I can't imagine that pain of losing a child. First of all, I can't I don't even know what that's like, and I'm not going to pretend like I know what that's like, Is it because you feel like the depth of your pain, like just nothing can possibly just pull me out of this? Do you think that's what it is?

Faith Wilcox  17:22
That's a good way of saying the depth of my pain, it felt that. Like, a few limbs were taken off of me. It's amazing to know, but there's no word for a woman who's lost a child or for a parent who's lost a child. We have widow and we have widower, but it's almost as though there's no way to sum things up into one word. And really, our children are, are braided into us, we can't pulling that out. It's like pulling two sides of a braid at the same time. It's very, very, very hard to do. So I think I was living my pain and literally having a lot of physical pain at the same time, too. I understand now that that how much pain I was in emotional pain and physical pain can go hand in hand. I didn't understand it at the time. But I think that's primarily why I couldn't I couldn't don't think I could have managed early on.

 Victoria Volk  18:32
No, that's fair enough. I mean, I'm, it's like the suffering is overwhelming. And as I've been talking about recently about suffering, it's I had an interview not that long ago, and I was talking about suffering and what I shared was your suffering anyway. What if you can suffer and put one foot in front of the other? And I feel like that's maybe the best message I can give others right now who feel like they're in this. Like, they're just white knuckling hope and feel like just nothing. Nothing can take any of that pain away.

Faith Wilcox  19:27
They do like that concept that you're in pain anyway. So why not? Why not try? Why not put one foot try to put one foot in front of the other? In a way you could say you don't have anything to lose. Because you If anything, even if you got a whisper of relief, it would be a big help.

Victoria Volk  19:48
Right? Yeah, I wish I would have known you back then.

Faith Wilcox  19:56
Yeah, that would have been special too.

Victoria Volk  19:59
You know grief recovery has been around for over 40 years. Can you believe that? I can't believe that like it's, but it's only recently in the last I suppose, six, seven years maybe that it's kind of online and it's gaining gaining more traction. Because before that was pretty much just word of mouth. But I just think of all the Grievers out there who, like you, just just not that you didn't have hope, because you did, and your daughter taught you that right to never lose hope. And if we don't have hope, what do we have? So I hope and move your feet. Right?

Faith Wilcox  20:42
That's a good, that's a good visualization for me.

Victoria Volk  20:49
So share with us, if you will about the writing, because you're writing just for your own therapeutic. Write for just for yourself, and then it kind of then evolved into a book or?

Faith Wilcox  21:03
Yes, that's exactly what happened. I started writing by my daughter's bedside. She you know, you spend a tremendous amount of time in the hospital, and some time my daughter would be sleeping, or sometime it would be nighttime. Or sometimes our days and nights were so confused, I would write by day I write by night. And I felt that it helped me enormously express things that I kept bottled up inside, there are some things I just didn't want to say aloud. But I could express them in writing. And I really found that I could write about many of my fears, I could write about my anxieties, I could write about how I was feeling or coping, I could write about how Elizabeth was feeling or coping, I could write about the positive things that came out the friendships that we had the family that supported us tremendously, the medical community, which was enormously strong and supportive, and very, very knowledgeable. And what happened over time, is I also wrote about the process that we're going through, because there's so many medical terms, there's so much information that you don't understand at the time. And even if you can write it down, just write down the name of the illness or write down the name of the procedures, then you can go back at a different time and say to your doctor, Okay, I understand that this is about to happen. But I don't really understand why or I don't really understand what this procedure entails. So just writing it down can help you kind of organize in your thoughts, rather than just be this flood of information. Your your brain can't sort out that much information that quickly. It's just impossible, especially in medicine, which is can be sort of like a foreign language. So it helped me ultimately it helped me process what Elizabeth went through, and understand it better. And in time, I would be able to remember through my writings, the good days, the good moments, and it helped me to remember them as I went back and I read them again. And as I started rereading my journals, I said to myself, there is a story here, there is a story of a loving, and brave young person who contributed so much to the world. And there's a story of a mother standing by her child and doing the best that she can, given the circumstances that she's in. And there is a story of grieving, and there's a story of healing. And I thought, if I put my, if I put a memoir together, I hope that one day it'll help people who are in this process of grieving and give them hope for healing.

Victoria Volk  24:03
About that, and I will actually put the information in the show notes for the book. So let me ask you this, because I recently, as I mentioned, just went through an end of life. doula training, which is a person who sits with someone guides them in hospice care, like helps is kind of the advocate and the bridge between the hospice care team and the patient and the family. And so was hospice. Never a topic of conversation. That's me being curious again.

Faith Wilcox  24:38
Hospice was a topic of conversation. And my daughter resisted it for a little while we had she had finished her treatments. We very sadly knew what was ahead of us. And Elizabeth at maybe three weeks before she died, said sort of whispered to me that She was ready for hospice care. So hospice workers would come to our house about two times a week. And they would make sure that her pain medications were adequate. And they'd talk to her and make sure she's comfortable. But it really was at the very end of her life, the very last day that hospice was enormously helpful. They would quietly come and go out of her room. And they just they're calm presence was very, very helpful to us. And toward the end of their life, they gave her mom, they gave her oral morphine. Because her, her breathing was just slowing down enormously. So hospice was very helpful to us.

Victoria Volk  25:50
Did she ever speak have conversations with people that had passed before family members or anything? Again? This is me being curious.

Faith Wilcox  26:00
Do you mean did she connect with someone who had already died?

Victoria Volk  26:03
Yeah, like in her would talk about anything like she did.

Faith Wilcox  26:08
One day she said to me, Mommy, I saw George. And George was a friend who was our age who died in his early 50s. And George and his wife, were unable to have children and say, they didn't literally adopt, but they almost adopted my two daughters, because they just adore them. And we had many, many happy days, having lunches together or going swimming together or hiking together with George and his wife. And when she said, Mommy, I saw George, I was floored. Really, really floored.

Victoria Volk  26:45
Was that your first ever experience with something like that?

Faith Wilcox  26:48
Yes, it was.

Victoria Volk  26:51
Did. I'm curious too. Did that bring you comfort?

Faith Wilcox  26:55
It did. It did. I thought. And George had a tremendous sense of humor. So I thought, well, if someone can, can bring her gently to the next place, who would be a wonderful person.

Victoria Volk  27:09
Just yesterday, March 31 episode came out on my podcast, and it was with Dr. Chris Kerr, who has been researching end of life experiences. And phenomenal episode, if you have not listened to it, it will. But it talks he talks a lot about the medicalization of end of life. And just in talking with him, and through the end of life, death doula training I had, it's really changed my perspective on end of life and how it can be truly a beautiful, life affirming experience that can bring you much closer to your loved one than you thought was possible. Yeah, so I just wanted to share that episode with you if you haven't listened. What would you like to screen to the world? In the past or recently in wish people knew about your grief?

Faith Wilcox  28:15
That grief goes on for a long time. And that there are days especially early on that people would get, I could tell uncomfortable being around me. And I would want to say to them, it depended if a how well I knew them. Just talk to me. Talk to me about Elizabeth. Talk to me about Olivia. Don't pretend she didn't exist. Don't pretend that we just didn't go through this huge ordeal. Because talking about Elizabeth would bring her back to me. And we could remember Yes, difficult times. We could also remember that happier times. Like let's say when someone's daughter was in third grade with my daughter and they used to play or have overnights remember her Don't, don't get so awkward around me that you can't speak of her.

Victoria Volk  29:09
It's almost like that indifference. And the silence is even more painful than saying the wrong thing. Made exactly you know. And like you said, Let this be a lesson to you listening. anyone listening. just acknowledge the person share a memory of them if you don't know what to say, share your favorite memory of that person or what they brought to your life right when that have been just brought you so much peace just to know how she touched each person that you talk to right? 

Faith Wilcox  29:46
Absolutely. Because then not only do you go back in time and remember much happier times, you know that your child is living on through memories and someone who she touched in her life. And that's, that's a blessing.

Victoria Volk  30:05
I want to share this too because this brought to light something I touched on before in different episodes, but I think it's important to bring up again and that as a supporter of a griever or someone who like a acquaintance or a friend that you know, you meet on the street who you know, lost somebody close to them, like a child, in your case, follow the lead of the griever right? So if you're sharing a story, reciprocate that if the person if the griever like yourself if you're feeling like you know, it's not like you got to look at body language to I think, you know, if you're, if you're kind of closed off and you're not, like opening up or not really talkative Well, maybe it's maybe it's not, you know, because I think people get afraid then to upset you as a griever. He like they're afraid to upset you. And so, but I think it's just follow the lead of the graver. And I don't know that any graver would be upset about a happy memory? You know, I don't know.  

Faith Wilcox  31:14
No, I can't imagine that. I think I think everyone would be happy to remember to remember something in their past. And as I say, remember how your child touch someone's life, 

Victoria Volk  31:24
Or to learn of a certain event or a certain thing that they said or a specific, like something specific that you wouldn't know otherwise? You know? Yeah, I just think sometimes we just fear just keeps us so closed off to connecting with, with ourselves and with gravers that, you know, we meet or Grievers that we know or what have you. So what brings you the most joy these days?

Faith Wilcox  31:59
What brings me the most joy is being with family in my new marriage. I also have grandchildren, and they bring me a tremendous amount of joy. I love I love being with children. I love watching their silly antics. I love watching how they grow, and they learn and they've learned about life and see their bonds growing with their family and their friends. And how they sometimes start to step out into the world. And then come come back and and ask for advice. So I, my grandchildren bring me huge amount of happiness. And I also love to spend time with my daughter, Olivia, I love to walk in the woods, or walk by the sea. Just spend time in nature is very, very comforting and reassuring to me, I also love to garden, read and write.

Victoria Volk  32:59
That's beautiful. Find What brings you joy, right? do more of that.

Faith Wilcox  33:04
Absolutely.

Victoria Volk  33:06
Is there anything else you would like to share?

Faith Wilcox  33:11
I think to be gentle with yourself. There are times that you could say to yourself, Oh, come on. Now I've got to be able to be ready to go out to dinner with friends. Or maybe I want to go to an event. Go watch a baseball game. Or sometimes you have an invitation and you think, okay, maybe now I'm ready. And then you hesitate and don't go, it's fine. Just be very gentle with yourself. If you're not feeling up to accepting an invitation, it's fine. Do what works well for you don't push yourself into any situation that feels potentially uncomfortable. And your friends will understand. They will they might take them a little while to begin to understand but they will. And you can have good conversations with them about it. And through opening up the conversations they will they will begin to glean a little bit about what it's like to suffer as I was suffering. And then once you feel a little more confident do that stepping out into the world. And no, no, ultimately it's going to be okay is going to be very different than what you imagined. But life is good. And there are many ways that you can find joy in this world.

Victoria Volk  34:36
Yes, I believe that too. And you made a very good point in that you kind of coach people how to be with you. You know you kind of have to you might have to be the one as a graver to open up that dialogue in that conversation and to share what you need and to share how others can support you. I will add As a supporter of a graver, don't stop asking, right? Don't stop asking, Hey, do you want to go catch a movie? Just don't stop asking. Even if it's no 20 times. Maybe it's the 21st time. You feel like you know what? Yeah, let's go. But let's just go Yeah, let's just go I got this. Let's go today, or go for a walk and you don't have to talk. Right? Or you can just have someone walk with you.

Faith Wilcox  35:30
Yeah, absolutely. Just have someone be by your side. 

Victoria Volk  35:35
Yeah, we overcomplicate stuff a lot. 

Faith Wilcox  35:39
That's true. 

Victoria Volk  35:40
Yeah. Thank you so much for sharing your story. Is there anything else?

Faith Wilcox  35:47
No, I think I think I've shared what I was hoping to share. And I just, I thank you for this opportunity. And what people who are grieving to really hold on to hope is in time. And with counseling and with help, it will be okay.

Victoria Volk  36:03
Yes, with community we don't, we don't heal on an island by ourselves. And oftentimes, that's what grief makes us feel like and that's why my, the artwork for my podcast is me with a megaphone on an island, right? Because that's how we feel when we're deep in grief. It's like, no one's listening to me. And I feel alone and isolated. And that's what we do. That's what happens. Because, you know, we don't know what we need, necessarily all the time. And other people are afraid to make us feel worse, or they do say the wrong thing. And that makes us feel worse, or you know, so it's such a difficult thing to navigate. And that's why I started this podcast to bring people on, who have been there, done that, and bring hope, because without it, what do we got, you know, so thank you for sharing your story. 

Faith Wilcox  37:00
Of course. Thank you so much for this opportunity.

Victoria Volk  37:03
Where can people find you if they like to reach out to you? 

Faith Wilcox  37:07
Sure, you can find me at faithwilcoxnarratives.com. I have a website there, I have a way to contact me or otherwise just simply at my email at faithwilcoxnarratives.com.

Victoria Volk  37:24
Alright, and I will put that information in the show notes. And remember, when you unleash your heart, you unleash your life. Much love.