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Interview With Sue Matthews

Taylor at age 15[/caption] I’ve known Sue Matthews for many years. We both raised our kids in Edgemont, New York, and our oldest daughters were in the same grade. Life was good. Then, when Sue’s middle daughter Taylor was eleven years old, every mother’s nightmare became Sue’s reality: Taylor was diagnosed with cancer. Sue, along with her sister Andrea Cohane, recently wrote and published the book Paint Your Hair Blue. https://smile.amazon.com/Paint-Your-Hair-Blue-Celebration/dp/1683507274/ref=sr_1_1?ie=UTF8&qid=1548366214&sr=8-1&keywords=paint+your+hair+blue+sue+matthews This moving memoir chronicles the Matthews’ family journey and captures the spirit and “spunk” of an amazing young girl whose legacy to help others lives on in the work of her amazing mother.   Sue is the President of the Taylor Matthews Foundation, a nonprofit organization dedicated to raising awareness and funding pediatric cancer research. She is also an incredibly positive person who has learned from her daughter how to make the most of the moments we have. I interviewed Sue in her New York City apartment that overlooks Central Park. When I commented on the beauty of the view, Sue said that’s what sold her on the place. At night, she looks out the window and can see heaven. Please join me in this interview. While much of what we discussed was sad and difficult, our time together was also filled with much laughter and love.   Diane: Hi Sue! Sue: Hi Diane! How are you? It’s great to see you! Diane: Great to see you! This interview is the perfect excuse to see you. It’s been too long. But I’m also so grateful that you’ve agreed to do this interview because I think you are truly an amazing woman over 50 who has rediscovered herself. Would you agree? Sue: Absolutely!   Diane: So … I read your book Paint Your Hair Blue, all about your journey with you daughter Taylor. I knew some of the stuff just from knowing you and the situation, but I learned a lot more from reading—about the hoops … Sue: The hurdles. Diane: The hurdles a family goes through, even with the “best” care. And Sue, as tough as the journey was, you’ve written a book that is very funny in parts! Sue: Taylor’s personality is funny—a lot of spunk. Diane: That really shines through. When you read this book, you get to know Taylor, which is a real gift. Sue: It’s such a meaningful gift to me when people write to me through Facebook messenger or email and tell me that they got to know my daughter. It keeps Taylor alive for me. Diane: I just got the chills. Just hearing you say that. She is so alive in these pages.

Taylor was “a kid with cancer–not a cancer kid”

Sue: She is alive in the pages. She comes through. She always said she’s a kid with cancer—not a cancer kid. She wouldn’t let cancer define her. Although she was hospitalized so often, we did have a lot of fun. That was her personality. Diane: So … can you give us a timeline—from diagnosis, the hurdles, to her passing. Sue: Well, she was in school. I thought I was just taking her out of school for a short doctor visit. I even left her backpack there. Her pediatrician had diagnosed her with exercise-induced asthma, and I thought I was taking her to a pulmonologist for about an hour. They did a chest x-ray and they found approximately 100 metatheses. So, she didn’t go home. She didn’t go back to school, a place she adored. Diane: How old was she? Sue: She was eleven. On the day of diagnosis, she was being her usual pesty self, insisting on getting back to soccer practice at 4:00 and persistently asking me why I wouldn’t let her eat her lunch. I couldn’t because the doctors thought they were going to scan her that day. They didn’t.

“One of the keys to her living a great quality of life is that we didn’t show her our worry”

My husband and I were in total shock. Disbelief. Taylor took it incredibly well. We, of course, took it horribly, but one of the keys, I think, to her living a great quality of life is that we didn’t show her our worry. I would advise any parent of a child who has cancer not to show their worry. Kids always think mommy and daddy will make it better, and Taylor left all the worrying to us. My husband talked to her about her treatments. She agreed to all of them, but when one of them failed, she always said, “Daddy, what’s next.”   She had been given a short prognosis because the cancer had metastasized to her lungs, her adrenals and her femur. When you’re younger, cancer is usually more aggressive because your cells turn over more quickly. You also need higher doses of chemotherapy because your metabolism is quicker, which can hurt your organs. Even if you’re a survivor, your long-term survivorship is jeopardized.   When she was 12 years old, she had no immune system. You’re not allowed to eat anything fresh when you have no immune system. It sounds contradictory to living healthy but anything that grows close to the ground can have bacteria. With no immune system you are not allowed in public places so I decided it might be a good day to catch up on schoolwork. I went to the car to get her schoolbooks and I gave her a sleeve of Oreos. She tossed her books across the room and with this evil eye, said, “Really mommy? Are you kidding me?” I put the books back in the car and suddenly had this great idea: I’m going to teach her how to drive. What police officer is going to pull over a bald child? She actually drove for four years before she passed. Diane: So, you taught her to drive at 12?

“I’m a rule breaker!”

Sue: At 12! I had a huge SUV. She was 5 feet tall. With her little head peering over the steering wheel, I told her just to drive down our street, which is a cul-de-sac. And she turned around in the cul-de-sac the first time, and the next time she drove fast and turned off onto a very busy street—Underhill Road. I was gripping my seat. I didn’t know if I should close my eyes or keep them open. She had a hard time turning our big car onto a busy street, but she did it. And she drove until she got her permit. Unfortunately, she passed in that six months before she could get her license. But she loved driving. And it was safe—the car was germ-free. It wasn’t until I wrote the book that I realized that she drove without insurance for 4 years! Diane: I remember reading about that in the book and being surprised that you let her drive, knowing your personality. It was a priceless little chunk. Sue: I gave her quality of life. I did some crazy things with Taylor. That’s my personality. Diane: I know you, Sue, as more traditional. Sue: You don’t know what went on in my house! I’m a rule breaker! Diane: I see that! I have to tell you, that was one thing that really impressed me while reading this book, that both you and your husband Bob were rule breakers. I don’t know if you were always like that or if Taylor’s diagnosis kind of pushed you in that direction because these were life and death rules. You just challenged everybody! Not disrespectfully, but just “I want the information and tell me and how and why.” While I was reading, I thought that there are so many parents who would be too afraid to challenge a doctor who was taking care of their child. Where did you find that courage?

“The reality is that childhood cancer treatments are devastatingly underfunded by the government”

Sue: I don’t know how I got the strength, but the day after she was diagnosed, we arrived at a premier cancer hospital in the city, and they said to us that maybe we should consider not treating her because her cancer was so far advanced. I don’t know how I got the power, but I said “F— You! You’ve got to be kidding me! My daughter was in school yesterday!” We soon learned that her treatment plan was 30-40 years old—the reality is that childhood cancer treatments are devastatingly underfunded by the government. But we also found, totally by trial and error, that not all doctors and not all hospitals are the same—they can, and do, suggest different treatments. So, when one hospital failed us, meaning the treatment failed, or we didn’t have confidence in the doctors—and there were various reasons we didn’t like the doctors—we went to the next hospital and the next hospital and the next doctor and the next scientist and the next researcher. That’s why she was in remission for two years. But whether it’s your child or it’s an adult under treatment, we often think that doctors are God. Diane: It’s inbred in our culture. Sue: It’s inbred in our culture. We’re afraid to question them. And they either like to be questioned and challenged or, like most doctors, do not like to be challenged.

“You sign because you want your daughter to get the chemo as fast as she can”

We went for a second opinion. We drove four hours to Boston, not realizing that we didn’t have to bring Taylor—just her scans. We found out when we got there that the hospital in NY had not sent the scans! So, it was a complete waste of a trip. The doctor in Boston called his colleague in NY. He asked why he was doing all these different chemo’s? Why didn’t he just do three in sequence and see which one was working?  The doctor in NY, who did not realize that he was on speakerphone, responded, “We can’t, she’s under study.” We were unaware. You sign all the pages they give you to sign. You sign because you want your daughter to get the chemo as fast as she can. You want her to get better. So, I guess we signed agreeing to put her in study which meant they couldn’t even change the order of her chemo. We were totally blindsided. Diane: Oh my God. So you changed doctors then, I’m guessing.

“When she relapsed, 3.5 years later, we would find out that she was misdiagnosed”

Sue: We stayed at that hospital for a little while, and they basically just gave up on her. They said, “continue treatment and let’s just see what happens.” Her immune system was ruined. We knew what their answer meant. Within 24 hours, through the referral of a friend, my husband saw a doctor at the only children’s hospital at the time. It was Christmas Eve and my husband called and said he was going to be late—he was talking to this doctor who was fabulous, who had so many options, so many treatment plans. And within two months, Taylor was in remission. The reason that Taylor went into remission—we didn’t know at the time—was that the new doctor went back to the pathology department at the original hospital. He looked at the cells under a microscope, and while he did not diagnose her with a different type of cancer, he categorized her with a different type, and treated her for that cancer. When she relapsed, 3.5 years later, we would find out that she was misdiagnosed. Diane: And these were from the top hospitals in NYC?

“Mommy do not sue. It’s all negative energy, and I need you to be positive. I need you.”

Sue: The number 1 or 2 hospital in the United States had misdiagnosed her. Essentially, Taylor had been poisoned with the wrong chemo. We could have had a huge lawsuit. They would have settled privately. I would have given money to the foundation, but Taylor turned to me and said, “Mommy do not sue. It’s all negative energy, and I need you to be positive. I need you.” So, I honored her wishes. But some day, I will get an article in the op-ed section of the NY Times and tell what happened.

“I mean you’re trying to save your child’s life … You’ll make every sacrifice”

Diane: You did write about that in the book. Have you heard from any of the doctors or doctors’ lawyers? Sue:  Yes, all of them had positive feedback.  Diane: You guys lived on—I don’t know what—no sleep. Nothing? Sue: No sleep. But we just lived. It was ok. I mean you’re trying to save your child’s life—what’s more important than that—and we did what we could. You’ll make every sacrifice. Diane: And you did. Let’s talk about the foundation. Talk about the beginning of Tay-bandz and all those little fundraisers.

“’Taylor, the treatment plan is as old as we are.’ We were in our 40s at the time.”

Sue: Ok. We found out that her protocol—which is her treatment plan—was 30-40 years old (which is now 50 years—I advocate a lot on the Hill for pediatric cancer treatment and research). We tried to make a joke about it. We said, “Taylor, the treatment plan is as old as we are.” We were in our 40s at the time. She didn’t take that joke too lightly. And she said to me, “Mommy, I don’t understand why all these kids like me are suffering.” She always said, “If I could save the life of just one child, it would all be worth it.”

“We started a foundation that is completely dedicated to raising funds and awareness for pediatric cancer research”

With the help of friends and family, within 5 weeks of diagnosis, we started a foundation that is completely dedicated to raising funds and awareness for pediatric cancer research. And she named it Tay-bandz. Tay for Taylor and bandz because—we thought this was odd—she wanted to design headbands and she was bald. But that was fine. We thought it was going to be a thousand-dollar bake sale at school, but it turned out to be headbands, belts, key chains, bags, and we sold her pieces not only to our school district but to a lot of school districts in the county. One of Taylor’s friends moved to Switzerland, and she sold Tay-bandz in Switzerland! Diane: We used to sell them at skating competitions. At tables. Sue: That’s how it grew. All the little tables. Diane: All the little tables. And then you decided this was no longer mom and pop.

“One of the cancers that we funded research for, which had only a 5% survival rate, now has a 50% survival rate!”

Sue: Yes. We decided that this was no longer mom and pop. We do fundraisers and have an annual campaign drive, and up to this point, we’ve raised about $1.6 million. Diane: Amazing! Sue: And we have evidence from one hospital that one of the cancers that we funded research for, which had only a 5% survival rate, now has a 50% survival rate! Diane: That’s amazing. Amazing!

“What better can I do after losing a child to cancer than making the lives of other children better?”

Sue: At an other another hospital we are funding precision medicine which analyzes the actual child’s tumor or if it’s a blood cancer, analyzes their blood looking for DNA mutations. Then, doctors can target treatment to the child’s particular DNA mutation, if it can be identified. But honestly, what better can I do after losing a child to cancer than make the lives of other children better? I’m following Taylor’s legacy. I’m so fortunate that I have her legacy, that I am continuing the work that she wanted. It keeps me in touch with her, with other kids with cancer, helping to save lives. I mean, after losing a child to cancer at 16, it may seem crazy to say that I’m grateful. I’m not grateful for losing her but grateful for a lot of things she’s taught me. Sometime, in a different realm, I think that maybe she was my mother and I was her daughter because she taught me so much. Diane: I just got the chills. She did teach. She’s really amazing. Sue: She’s a force. Diane: A force. It’s interesting. She was very spunky, but you guys are pretty spunky too. Were you always?   Sue: You don’t think I was spunky, and Taylor definitely brought it out of me, but I was pretty spunky too—behind the scenes. We did crazy things. I would take the kids out of school for days—not in sequence—but days here and there, because if I was taking them to the zoo and they were spending the day with mommy, I thought maybe that would be more educational. We had so much fun. Those are the moments I treasure. We would never break the rules if it harmed anyone else.   Diane: Of course not! You mention Taylor as being fearless. But I see you, too, as fearless—maybe not fearless, but fear doesn’t seem to stop you.

“My ability to compartmentalize things helped me tremendously”

Sue: I appeared to be more fearless than I was. One of the first things Taylor told me was, “Mommy don’t ever cry because this is not sad—I will get better.” She totally believed she would get better; we totally believed she would get better, but it’s so sad for any parent to see their child suffer brutally. If she were here today, she would say that she didn’t suffer, but for five years—except for the time she was in remission—she was in chemo, had 14 surgeries, radiation. I saw that. I saw her suffer tremendously, but that was the type of kid she was. She didn’t say she suffered. Scans were taken every three months. I learned to compartmentalize. For 2.5 months, I truly didn’t worry—and we got some bad scans. The two weeks before, I would freak out. Even when we got good news, it took a week for my body to calm down, but that’s what I did—went for another 2.5 months being fearless, pushing the buttons wherever I could and moving forward. If I had lived with that fear, it would have done none of us any good. My ability to compartmentalize things helped me tremendously. Diane: You said that you lived in the moment. And what you learned from Taylor was that you do have control. When the bigger picture is out of your control, you can still control your moments, your daily experiences.

“Of course she came back, filled with poison ivy—and thrilled about it!”

Sue: Once we figured that out, her whole quality of life changed. We worked around the medical system, and when we were advised not to do things, we took that into consideration and did them anyway—just to give her a fun life. About three or four months before she died, Taylor went on a camping trip through school. The doctors said absolutely no! But we talked to the teachers—this was in the days before cell phones—and they were willing to take the risk.  We advised Taylor not to do the aggressive sports—she had reduced lung capacity at that point. Of course she came back, filled with poison ivy—and thrilled about it! The other kids were miserable, but she was thrilled because she had the experience. She came back having done all the activities that the other kids did. She had the biggest smile when we met the bus. We had given her conditions before she went on the trip, and she didn’t listen to one of them! Diane: Didn’t you know she wasn’t going to listen? Sue: We absolutely knew she wouldn’t! Diane: So how has the foundation changed over the years?

“I do presentations to kids are various schools and empower them to follow their passions. They have the power of one. Taylor had the power of one”

  Sue: We moved to New York City, which gives me a lot more opportunities to connect with others, so that has created more donors. The book has doubled our donors. The proceeds from the book go to the foundation. The way we fundraise now is through our annual campaign, which is just finishing up. We did really well, despite tax changes. We only do fundraising events where the venue is free. I refuse to do a gala where you charge $500/person and $300 goes to the venue. Those are all hoopla—for nothing. We certainly want to raise awareness, but the money you raise from galas is really very little. To get the venues for free, our events are usually done on college campuses and high schools and run by the kids.   I do presentations to kids are various schools and empower them to follow their passions. They have the power of one. Taylor had the power of one. So, I do a lot of kids-driven events. Actually, my husband says that I should have been a guidance counselor. But I wouldn’t be good as a guidance counselor. I would break the rules for all the kids! Taylor’s friends did Tay-bandz sales; they asked that the gifts from their bar-mitzvahs to go to Tay-bandz, and then, as they got older, they did events on their college campuses. Now they are 27 years old and get corporate donations. Diane: Her friends? Sue: Her friends and friends of friends. My older daughter has a good friend in New Hampshire, and she just did a big fundraiser. That girl also ran a marathon for Tay-bandz. Diane: So, what does someone who wants to run a fundraiser do? Sue: They can talk to me! I am open for basically anything except an event that has high expenses. For example we do an annual a fundraiser at her high school where my expenses are approximately $2-3 thousand for t-shirts and our revenues are approximately $15,000. It’s a color run, where they spray nontoxic powder on the shirts as you run, and the kids come back looking like rainbows. So, you can come up with your own idea and come talk to me. I’m willing to work with you. Or you can do something we’ve already done.

“We have a policy that we will not have any of our money going to administrative costs”

Diane: Is this full time for you? Sue: It’s full time for me during parts of the year, like when we’re running our annual campaign. It’s not full-time at other parts of the year; the summer is slow although we’re planning events for the fall. Also, a big part of my job is working with the doctors and the scientists to decide where our money is going. We have a policy that we will not have any of our money going to administrative costs, such as cleaning the lab, things of that nature. Actually, government grants allow 80% to go to administrative costs, leaving only 20% to the actual research. Diane: Really? Wow! Sue: Absolutely crazy! That’s our one condition. To decide where our grants are given we work with doctors around the country that I’ve known since Taylor was sick, and they give us advice. Diane: They give you advice about where to spend the money?

“Believe it or not, to sequence a child’s DNA (to find their particular mutation) costs $5-7 thousand. That’s it, and it could very well save their lives”

Sue: Yes. And we have a particular affiliation to Children’s Hospital of Columbia University Medical Center because it serves an underprivileged population. A lot of kids who are on Medicare can’t pay for their treatments, and that’s the hospital where we’re doing precision medicine. Believe it or not, to sequence a child’s DNA (to find their particular mutation) costs $5-7 thousand. That’s it, and it could very well save their lives. So, I say to donors, who are $5-10 thousand donors, you may have saved one to two kids’ lives—you’ve truly have saved lives. Diane: I was going to ask you about this. While I was reading the book, I and said wow—you did so much—but what do people do who do not have education or resources. Are they just pushed aside?

“Everywhere we went, and Taylor was treated in so many hospitals in the U.S. and in England and Germany, we always helped other parents. We told them to keep pushing buttons and that 2nd and 3rd opinions are often free”

Sue: Well, they have to go to a hospital that does not only take private insurance. The premier hospital that I spoke about that treated Taylor will only take certain types of insurance. One time I met a dad—this was in November—and he was starting a new job in January, which would give him the insurance that the hospital took, but his daughter needed a transplant and couldn’t wait until January. The hospital turned him down. So, you have to go to a hospital that is willing to treat you no matter what the cost. There are many foundations that are set up to help parents and siblings get help. We were fortunate enough to be able to hire a full-time babysitter. Other parents weren’t. There are many parents with a sick child in a wheelchair and a baby in their arms. When Taylor was receiving chemo in the clinic area where 20 patients were being treated at the same time in a big open room, sometimes kids were alone even though they weren’t allowed to be. Their parents had no choice—they had other kids. Taylor would be vomiting, sick as a dog, and she would tell me to go to help another kid across the room because that kid was all alone.   Everywhere we went, and Taylor was treated in so many hospitals in the U.S. and in England and Germany, we always helped other parents. We told them to keep pushing buttons and that 2nd and 3rd opinions are often free. There’s a premier hospital in Houston, Texas that has a foundation to make travel either free or provide discounted rates. That hospital serves people from all over the world. They go there for treatment plans. We would go every eight weeks or so, with our scans, for treatment plans. Taylor’s doctors in NY were willing to follow that treatment plan, so we could live at home.   But once Taylor had to go to Texas for a month for radiation, so we had to live in Texas for a month. She went ballistic—when she had to leave her boyfriend, we literally had to rip them apart. That was one of the hardest things—watching your daughter not have her quality of life. The day we got there, Taylor went in and talked to the radiologist herself. She made it so she had radiation early on Fridays—at 7 a.m.—and late on Mondays, so she only had to sleep in Texas four days of the week and had the other days in NY. When she counted out the number of days that she would need radiation, she suddenly started crying. Her last day of radiation was on November 1, her 16th birthday. She wanted to get her driver’s permit that day and have a Sweet 16. She also wanted to be home for Halloween—her favorite holiday. She asked the doctor, “What can I do?” He said, “You will be very sick and very tired, but for two days, I’ll give you radiation twice.” So as soon as she finished radiation on October 31, we left. She vomited on her way out of the hospital, and we ran to our flight. Taylor made it home and to school for Halloween. Diane: Amazing. How does it feel to tell these stories?

“And when I got to the sadder moments in the book, and started to cry, I would stop. It was as if I could feel Taylor pinch me and say, “Mommy, I don’t want you to cry. I want you to write this book to help people.”

Sue: It feels so good. Makes her feel so alive. People ask me how I could have written this book. When I remember all the happy times, all the fun, the crazy things we did—it makes me laugh. It wouldn’t have made me laugh a few years ago. I couldn’t see any memory as positive. I actually stayed in bed for two years after she passed. And when I got to the sadder moments in the book, and started to cry, I would stop. It was as if I could feel Taylor pinch me and say, “Mommy, I don’t want you to cry. I want you to write this book to help people.” Even when I think of the sad moments now, I can feel her presence. She sends us signs—I very much believe in signs—she sends us some intense ones. Diane: Like what? Sue: Well, we just had one yesterday. A dear friend of mine who helped take care of the other kids when Taylor was sick had a visitation from Taylor. She saw Taylor in a blue hoodie (her favorite color). When she asked Taylor, “Where are you?” Taylor said in her pissed off voice, “Here!” I call it a visitation not a dream because they exchanged words. My other daughters were present, I was present, and she was holding my husband’s hand. She comes in hard core ways.

“Taylor’s sitting right next to you, Diane. She’s happy that you’re helping her.”

There are symbols: 111 and 222. She was born on 11-1 and died on 2-22. Those numbers appear everywhere. This is a story in the book. Six weeks after Taylor died, my younger daughter was being confirmed. It was impossible to go back to the church where we had just had the funeral, but we had to for my other children. This was before Evites. We went to a store that I never frequent; I just wanted to get an invitation—not see anybody—and my older daughter suddenly started screaming: “Mommy! Mommy! Mommy!” I turned around and there was a sample birth announcement that said, “Our angel”–not daughter—but angel, “was born on 2-22.” Taylor died on 2-22. And the angel had the same exact name—Taylor Anne—spelled the same way. The announcement also said that the angel was 9 lbs. 11 oz! Taylor had a premonition the day before 9/11. She always lived partly on the other side—now she’s totally on the other side—and she had this crazy premonition. She kept me up the whole night crying that something terrible was going to happen. I didn’t know where this was coming from. No one was sick. I told Taylor to just go to sleep, that nothing bad was going to happen, but she couldn’t. She came home from school the next day and said, “Didn’t I tell you?” After she passed, I looked on her computer, and her last report for school was an investigation about 9/11. She comes through powerfully. You have to be open to seeing the signs, though. They’re there, sitting right next to you. Taylor’s sitting right next to you, Diane. She’s happy that you’re helping her. Diane: It’s my honor. And you know—this may sound weird to you because I didn’t really know Taylor—but I feel her. Here right now. I have the chills, and whenever I get the chills, I know. Sue: Because you’re helping her, and she’s loving that—I truly believe that she sees everything that we do.

“I’m going to be 59, and I can’t wait until I’m 60!”

Diane: So how old are you, Sue? Sue: 58! Diane: 58. Woohoo! Sue: Woohoo! 59 this year. Diane: What about the 50s? Not so bad, huh? Sue: Not so bad! I’m loving it! Diane: So, tell me. Has there been a rediscovery? When did you move to the City? Sue: Seven years ago. I was 51. Putting the death of daughter aside because obviously it’s had a tremendous impact on my life. If I were a woman just talking about my 50s, it’s a great time. Your kids, if you have kids, are usually going off to college. It’s your time. You reinvent yourself. People say it can be a difficult time because your kids are not around, but don’t take it that way! I lost part of my identity. My kids were the most important things to me. Almost 100% of my identity revolved around my kids. I had to take my identity back.

“Age doesn’t mean anything to me in numbers. What it means to me is a greater ability to see things from different perspectives, a greater quality of life.”

I’m going to be 59, and I can’t wait until I’m 60. Numbers don’t mean anything if you feel well. You realize that so many things don’t matter. I realized because of Taylor and because of my 50s that you only really need about five good friends. You don’t need to have a huge group of friends—just a few. You no longer feel awkward pushing some people away. You no longer have to talk to mothers because of play dates. No longer have to be nice to people you don’t want to be nice to. Diane: It’s liberating. Sue: It’s totally liberating! But I’ve also learned never, ever go to bed angry. Age gives you freedom and wisdom. It sounds cliché, but it’s true. It’s like taking the chains off. Diane: So, what’s next?

“It’s time to follow your dreams!”

Sue: What’s next? I don’t know, but I’m not worried about it! I’ll be turning 60 soon—all I know is I don’t want a big party! Age doesn’t mean anything to me in numbers. What it means to me is a greater ability to see things from different perspectives, a greater quality of life. And … hopefully, I’ll be a grandmother! Not so soon. Diane: I’ll make sure that Corey and Ryan read this then. Sue: It’s time to follow your dreams! People get upset with menopause and hormonal changes—it’s not a disease. It’s the natural order of life. Go with the flow. I have hot flashes, so I put a tiny fan next to my bed that I turn on and off at night. And go right back to sleep.

There are negative things that happen in everyone’s life. Try and put them in a bucket and send them down the river.”

Diane: How are you sleeping these days? Sue: Really well, but I take meds. Exercise, meditation and meds! And looking at everything in life from the positive side. I am so grateful that I have two beautiful daughters. I have a great husband. The divorce rate is 70-80% when you lose a child, so I am very fortunate to remain married. And I have a lot of good friends and family. My sister, whom I wrote the book with, is my soul mate. She lives in NC, so I don’t see her much of the time, but she promises me—she’s 10 years younger—that when we retire, we will live near each other. You look at life differently. There are negative things that happen in everyone’s life. Try and put them in a bucket and send them down the river. You realize in your 50s that you don’t have to put up with toxic situations. Diane: It’s so true. So true. It’s a gift. Sue: It’s a gift but you have to see it as a gift and realize it. Diane: Well, this has been a gift to me. It’s been wonderful. And I want to thank you so much. Sue: I love you Diane. Diane: I love you too, Sue.     If you want to learn more about Sue’s journey with spunky Taylor, I recommend getting a hold of the book. All proceeds from the sale of the Paint Your Hair Blue will go the Taylor Matthews Foundation to raise awareness and   funding for pediatric cancer research. You can also make a donation at www.taylormatthewsfoundation.org or reach Sue at taybandz@gmail.com to discuss an idea for a fundraiser.  

Remember—make those moments count!

 

See you next Friday!

Diane

Diane Gottlieb                ]]>

27 Comments

  1. Patrick Eliseo on April 8, 2019 at 6:07 pm

    Hello! I’m at work surfing around your blog from my new iphone 4! Just wanted to say I love reading through your blog and look forward to all your posts! Keep up the fantastic work!

    • Diane Gottlieb on April 8, 2019 at 6:16 pm

      Thank you, Patrick, and welcome aboard!

  2. Nancy on January 28, 2019 at 6:37 pm

    Everyone’s worst nightmare. Losing a child. Awestruck at how Sue allowed herself to grieve ( the 2 years in bed struck me) but used that energy to help so many children and their families. Her love and admiration for Taylor is palpable. Thank you for all the research you have funded in Taylor’s honor.

    • Sue Matthews on January 29, 2019 at 12:29 am

      Hi Nancy,
      Thank you for writing and for saying my love and admiration for Taylor is palpable.
      I wake up every morning and hold unto the love affair I had with my daughter.
      Warm regards,
      Sue

  3. Dorothy on January 28, 2019 at 5:32 am

    Grace under fire, life lessons of undying eternal 💕 love! Thank You Sue and Taylor for reminding me to break some rules.

    • Sue Matthews on January 29, 2019 at 12:32 am

      Hi Dorothy,
      My love for my daughter continues and grows every day.. just in a different way.
      Im laughing thinking about Taylor laughing at your comment on breaking the rules….. Go for it!
      Have fun and live life on your terms!
      Sue

  4. Lisa Kane Green on January 27, 2019 at 12:03 am

    Dear Diane, thank you for bringing Taylor’s and Sue’s story to our attention. Sue, you are a remarkable woman. Instead of aimlessly projecting your anger and disappointment with the medical profession, you created The Talyor Matthews Foundation that will serve as a legacy for Taylor and will shine on forever. Warm regards, Lisa

    • Diane Gottlieb on January 27, 2019 at 12:06 am

      Thank you, Lisa, for your comment. Sue is remarkable and Taylor and her legacy will shine on forever!

    • Sue Matthews on January 27, 2019 at 1:24 pm

      Hi Lisa, Thank you for your very kind words. My daughter was a remarkable person. I live my life the way she would want me too! Saying Taylor will shine on forever touches my heart.
      Warm regards,
      Sue

  5. Gail on January 26, 2019 at 7:21 pm

    This was such a powerful piece.
    Sue, you are truly an inspiration.
    Thank you for sharing!

    • Sue Matthews on January 27, 2019 at 1:27 pm

      Hi Gail, Thank you for your very kind comment.
      You have inspired me.
      Warm regards,
      Sue

  6. Karen Solomon on January 26, 2019 at 6:24 pm

    I was deeply touched by this interview in a myriad of ways – as a mother, as a mother of a developmentally disabled adult son, and as former teacher of children with cancer. I never cease to be moved by the creativity and resourcefulness of families touched by cancer and other challenges. My heartfelt thanks to Sue for sharing Taylor with us, and to you, Diane, for sharing this treasure.

    • Diane Gottlieb on January 26, 2019 at 9:56 pm

      Thank you Karen, for your unique perspective, and for your own work with children like Taylor and families like the Matthews. Taylor and Sue’s work are treasures. It has been my great privilege to share their story.

    • Sue Matthews on January 27, 2019 at 1:31 pm

      Dear Karen, Thank you for teaching kids with cancer. I found most, including my daughter, were anxious to keep up with their studies. You have made such a positive difference to many.
      I will send Taylor your way to help with your son.
      With prayers,
      Sue

  7. Susan Matthews on January 26, 2019 at 6:20 pm

    Thank you Rachel!
    Keep on living life and embracing love!

  8. Nicola Mendenhall on January 26, 2019 at 5:49 pm

    This interview was longer than I usually like to read but it was so inspiring that I kept reading which I think is a tribute to both Sue and Taylor and your ability to write. There is so much in here to ponder. The medical system. Mistakes. How money we give to causes is used. How Taylor’s spirit continues. How breaking rules is at times necessary. Those are the things I remember off the top of my head! What a great story. I feel privileged to have it in my mind and heart. Thank you!

    • Diane Gottlieb on January 26, 2019 at 9:54 pm

      Nicky, I’m glad you stuck with it! There is so much here to ponder! Taylor’s spirit continues for sure. I totally agree that it is a privilege to learn about Taylor and the work that her experience has inspired.

    • Sue Matthews on January 27, 2019 at 1:20 pm

      Hi Nicola, Thank you for your reading. I hope the article empowered and inspired you!
      Your comments are so poignant. Taylor is now in your heart and mind.
      Sue

  9. Shlomit Fuhrer on January 26, 2019 at 3:03 pm

    Hi,

    I’ve been thinking about the article and I just wanted to add, Sue, that you broke the “small” rules because you follow the two biggest: live fully and love. I think on some level we all want to do that but can’t necessarily see it clearly. You really have made it clear for me.

  10. Shlomit Fuhrer on January 26, 2019 at 2:20 am

    Hi,

    I am not usually at a loss for words, but this interview leaves me in awe of both Taylor and Sue. Sue, both you and Taylor are so wise and inspiring in your dedication to living fully and joyfully. I say “are” instead of “were” because it’s clear that Taylor’s spirit is still a shining presence. I will buy the book and probably urge my friends to read it too. Thank you so much.

    • Diane Gottlieb on January 26, 2019 at 2:25 am

      Thanks, Shlomit, for your comment. You express so well what we all are thinking.

    • Sue Matthews on January 26, 2019 at 6:17 pm

      Thank you Shlomit for your very kind words. I love that you wrote that Taylor’s spirit is still shining!
      It is and your comment just made my day because I can feel her right next to me right now.
      Thank you!

  11. Steven on January 26, 2019 at 2:08 am

    What a powerful piece. Taylor was a remarkable person and she was fortunate to have such caring and supportive parents. The fact that Sue did not become bitter but instead used the pain as a force to help others through the foundation is a testament to Taylor’s legacy. Thank you for sharing.

    • Diane Gottlieb on January 26, 2019 at 2:11 am

      Thanks for your comment, Steven. Sue is an incredibly strong woman and Taylor was a remarkable young lady. She continues to inspire all who learn about her and her courage.

    • Sue Matthews on January 27, 2019 at 1:15 pm

      Hi Steven, That you for your very thoughtful and kind comments.
      Taylor was never a victim and lived life to the fullest ( I know sounds cliche) but she really did.
      She taught me so many lessons in her short years….. I follow in her footsteps.
      Thank you!
      Sue

  12. Rachel on January 25, 2019 at 11:43 pm

    What a moving interview! Sue’s amazing!

    • Diane Gottlieb on January 26, 2019 at 1:35 am

      Yes, she is Rachel! Absolutely!

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