Death: Life's Greatest Teacher

This week, we’re sharing the three greatest lessons April Koontz of Daughters Unite has learned from the sudden losses of her brother, cousin, and uncle. Daughters Unite is a social networking site dedicated to helping caregiving women. We are honored to share April’s positive insight on how her grief has taught her many important lessons, strengthening her as a person as well as her relationships.

On Aug. 14, 2010, my family’s world completely stopped. My 34-year-old brother was found dead by my parents of an unintentional overdose. Despite my dad’s heroic CPR efforts, he did not return to this world. That day, I sat in complete shock as I listened to the paramedics zip up the body bag and carry him down the stairs and out to the ambulance. I can still recall the sound six years later.

I don’t know about you, but I’m convinced that once you’ve stood with one foot here and one foot on the other side of life’s “thin veil,” life as you know it up to that point is forever gone. Yes, you still get up in the morning and brush your teeth and make dinner and mow the lawn and sit in traffic, but it’s not the same —  because you’re not the same. How can you be? Think about it. There’s nothing that engages every one of our senses simultaneously and as intensely as death, which, ironically, is what living life to the fullest is all about.

AprilFamilyPic.JPG

Since the death of my brother, we’ve lived through the sudden deaths of my cousin and uncle. That’s three sudden deaths over a span of five years. Yes, our family has suffered deeply. We’ve grieved and continue to grieve, and the grief has etched more lines on our faces and permanent scars on our hearts. We’ve experienced sleepless nights and painful days. There are songs we can’t bear to listen to anymore. There are TV shows — even comedies — too painful to watch and recipes too painful to make. Even though, and thankfully so, time dulls the sharpness of the sting, it never goes away completely. Every birthday and every holiday still hurt to some degree. Their absence is always apparent on some level.

The good news is that with the heart-wrenching pain comes heart-warming lessons that strengthen our relationships and stretch our character. For our family, here are the three greatest ones:

•    Stupid, petty arguments are stupid and petty. There is nothing worse than receiving a call that someone you are not speaking to for whatever reason has died. Death’s finality is harsh. If you’ve got bad blood with someone in your life — do your part to make amends. There’s no guarantee they’ll reciprocate, but do your part to ensure you don’t have regrets on your end. Note: I’m not suggesting there aren’t exceptions to this rule in cases such as abuse, neglect, addiction, etc. What I’m referring to is truly petty things like you not being invited to an event or someone made a snide comment about your outfit, or you don’t see eye to eye on politics. Our family is now very quick to apologize and clear the air. We keep the lines of communication and love open at all times.

•    Time is a commodity. Spend it wisely. Far too often we ignore our soul’s nudges to send a card or text, make a call, or drop by and see someone. We’re just too busy. We’ll get to it next week or month or year. Pay attention to the nudges and follow them. Many times the reason for the push can’t be seen by the naked eye, and more often than not a great surprise is waiting. Our family is now big on cards, meals, calls, texts, and supporting our friends and extended family. Life is short. Pay attention and love fiercely — especially when it’s not convenient.  

•    Be prepared to die. This one is probably the biggest lesson I have to offer. Being prepared to die is the greatest gift you can ever give your peeps. It removes the added stress of untangling the administrative nightmare that comes with a person’s death and allows them to be present to you, the celebration of your life, and their grief. They will be in a haze that can last for years after you’re gone. Having a plan in place will help them see through the haze a little more clearly. Most of us create a list for the person caring for our pets or watching our house while we’re on vacation, right? It’s the same concept. Schedule the time to get your affairs in order. You’ll be amazed at how alive you feel after completing it.

There’s nothing I’d love more than to smell my brother’s aftershave as he walks past me or laugh uproariously with my cousin at the kitchen table or hear my uncle’s not funny jokes again. There’s nothing I’d love more than to wipe away the grief my parents carry with them over losing their only son. Thankfully, most of the time, I’m at peace with this reality and truly grateful for the awakening their transitions have given me.

I once heard Jaclyn Smith recite a quote her assistant had written following the death of Farrah Fawcett:

“They’re everywhere, and they’re nowhere, but they’re there.”

Thank you, Jaclyn Smith’s assistant. I carry this with me every day.

Prevention, Awareness, and the Unpopular Cancers

February is National Cancer Prevention Month, which we learned from this American Cancer Society cancer awareness calendar. Looking at this calendar, we found it interesting to see what types of cancers merit their own awareness month. The most common types of cancers are breast, lung, and prostate, with reportedly 225,000 new cases of breast cancer expected in 2017. This perhaps best known cancer - breast cancer - has its time in the spotlight in October when everything from airline napkins to NFL uniforms turns pink. Some evidence has led to books and opinion pieces questioning whether all the awareness leads to any real change in fighting the disease. To be honest, we didn’t have many charitable thoughts about breast cancer awareness in the October when we learned that our sister was dying of a rare form of cancer.

Colleen was unlucky not only in that her type of cancer was very rare, but also in that she was a rare patient. She was young - in her mid-20s - when she was first diagnosed. Her cancer appeared as a neuroendrocrine tumor (NET), which more typically occurs in a middle-aged man. It was a difficult and complex cancer to learn about as there are about 40 types of NETs and they can behave differently and appear in various organs. It seemed impossible to have a clear and tested way of treating her. She was also a special patient because she was a physician herself. She studied her cancer, learning about its disease process, symptoms, drugs that slowed its growth, and responses to treatment. She was her own champion for her health.

We often felt frustrated that more was not known about her cancer and her options. It sometimes felt like there were more resources available to the famous cancers. Research tells us that there is a mismatch of funding among different types of cancer. To us it seemed unfair that not only did Colleen have an underfunded cancer in terms of research, she also lacked other types of support that may come from having a recognizable disease. We have heard a friend describe her cancer experience as wonderful, mentioning that she received an entire binder of resources for her cancer. Without recognition and more support, Colleen was never going to find a yoga class tailored to her specific cancer as our friend did. Upon studying the cancer awareness calendar, it turns out that there is, in fact, a Neuroendrocrine Tumor Day in November. Who knew?

But knowing that there was an awareness day for her cancer wouldn’t have changed much for us. We didn’t necessarily want a special colored ribbon unless it would have effected real change in Colleen’s outcome. The contrast of beating cancer versus dying of it is a big one. The awareness campaigns focus on those living with it or surviving and, obviously, they want to stay positive. Their goals are fundraising for research, support, and more awareness campaigning. Those who are losing their battle to the disease may feel left behind.

Why do we dedicate certain days and months to certain types of cancer and not others, anyways? There are so many kinds of cancer, and they all deserve our attention. We worry that the very rare ones will be left out, which doesn’t seem right. As this article in Chicago Health argues, “lesser-known cancers deserve equal attention so that people can be better informed about symptoms and new developments in diagnosis and treatments. And with more attention will hopefully come additional financial support necessary for research to improve survival rates.”

Focusing on cancer prevention this month, rather than awareness of a particular kind, seems much more inclusive and more productive. In fact, the American Institute for Cancer Research says that eating healthy, staying active and lean are all ways that you can avoid one third of cancers. But even the cancer prevention focus leaves out those who are currently fighting the disease.

Unfortunately, people continue to die of cancer at staggering numbers. We should focus on continuing to support all kinds of cancers and all patients - no matter their age, race, gender, or stage of disease. Whether you talk about awareness or prevention, the commonality is that cancer is a beast and it affects people in terrible ways. It may help just by being “aware” that the colored ribbons alone don’t make the pain and suffering go away.

Feb. 16, 2017 Caregiving and Grief News Roundup

February is National Cancer Prevention Month and we have come across many touching stories. These brothers are raising awareness by sharing their story - TODAY weekend anchor Craig Melvin’s brother faces stage 4 colon cancer at the young-age of 39. Unfortunately, doctors report a growing trend of early onset cases, so it is important to get screenings. 

Photo credit Keep Calm-o-matic http://www.keepcalm-o-matic.co.uk/

Photo credit Keep Calm-o-matic http://www.keepcalm-o-matic.co.uk/

We are well aware that we mention our favorite card maker, Emily McDowell, often, but we just love everything she does and says. Her book is now out, so go order it! She was featured on NPR  and shares her wisdom on providing sympathy. She says to not worry so much about saying the right thing, because that is impossible, but instead focus on just being there and listening. Instead of allowing someone to be angry or sad…. "there is this internal pressure to come with a silver lining… [but] that feels like your pain, which is very real, is being minimized.” We completely agree.

This powerful story from the Elephant Journal reminds us that honesty is important when someone is dying. 

Zach Sobiech who died of osteosarcoma is missed by his loving family and his sister, Grace, shares her college essay, inspired by him. She worries about remembering him, but now realizes that she carries a bit of him with her. Very touching essay.

http://www.childrenscancer.org/main/latest/he_will_never_let_me_forget/

http://www.childrenscancer.org/main/latest/he_will_never_let_me_forget/

Here are a few other links from around the web that we wanted to share.

Do you have an inspirational or helpful news story to share? We would love to hear from you!

Unbreakable Sibling Strength

This week, we are thrilled to share a story of sibling bonds providing strength through tragic loss. We are honored to have our cousins, the “Madison Moks" as our guests: Becky, Christy, Stephen, and Matthew Mokrohisky. We look to their family as an example of supportive siblings, strong family ties, and simply fantastic people. Their story illustrates how they experienced the loss of their dad differently but one thing remained the same – they had each other to turn to for support. Their bonds as siblings are unbreakable and incredibly resilient and we are so proud to share this.

We were a full house growing up in Madison, Wisconsin with our parents, four siblings and a very large dog. Becky is the oldest sibling, followed closely by Christy and a ten- year age gap to “the boys”, Stephen and Matt. While age separates us, mutual love, respect and support have strengthened and sustained our bond through the years.

Our mom, Sue, is the rock of our family. She was the first in her family to go to college, yet her career as a social worker took a back seat to her family. She is our shepherd, guiding us through ups and downs with her unconditional love and unbreakable spirit. Our dad, Steve, was a hardworking, passionate family man. He was a dedicated physician to his patients and the athletes he cared for, but his family was his first priority. We remember when he turned down the chance to attend the Super Bowl with the Chicago Bears as one of their team physicians because he wanted to watch the game at home with his family. Our lives centered on family. We came home early from sleep overs to go to mass as a family. We ate dinner at 8pm so we could eat as a family.

In April, 1991, with an established sports medicine practice and a growing family, our dad was diagnosed with metastatic lung cancer. He was 48 years old. The girls were in college and the boys were in middle school. The doctors gave him six months to live.

Christy’s Perspective

My sister and I were in college when our parents asked us to come home for the weekend. Something didn’t feel right but we convinced ourselves that our parents were being dramatic and just wanted us home for the weekend. The next day, as we stepped off the Badger Bus in Madison, Wisconsin our dad was waiting. He put his arm around us, pulled us in, and as we walked toward our family van he told us that he had cancer. Through tears, we could see our mother in the van window looking back at us. We were devastated. Our first thoughts and questions were of our brothers: Do the boys know? How are they? Where are they? We were a close family before but something happened that April day. We connected in an entirely new way and we developed a strength that sustained us through two years of cancer and the 25 years we have lived without our dad. Every year there are times when his loss seems unbearable. There have been graduations, weddings, the birth of grandchildren and family reunions, but it’s the everyday, unexpected moments when we miss him the most. In those times, we turn to each other. We often say nothing because all we need is to be present with someone who understands.

Becky’s Perspective

After two years of treatment our dad passed peacefully in his favorite place in our house: the sunroom that overlooked the backyard and his garden. He loved to watch the birds. We were all in such different places in our lives, so his death affected us in different ways. As the oldest, I felt a lot of guilt in the years following his death. I wasn’t able to be there to help my mom and be present in the boys’ lives. Also, I recognized how lucky I was to have known him the longest and have the most memories. I felt deep sadness for my brothers whose early memories were our dad being sick and undergoing chemotherapy and radiation. One of my most vivid and impactful memories after my dad’s death was of my youngest brother Matt coming to us, and asking what would happen to him if our mom died. Where would he go? Where would he live and who would take care of him? At that moment I recognized the deep connection we all have as siblings, no matter what the age difference. The four of us were all going through this loss together.

As the four of us have aged with families of our own, our sibling bond has grown and our relationships have deepened. We continue to make our siblings a priority for comfort in hard times and to tell stories as a way to preserve our dad’s memory for each other and our children. Three years ago, we celebrated the 20 th anniversary of our dad’s death. We were living in different places around the country at the time, but we connected throughout the day via email with some of our favorite stories and memories of his life. We have learned to manage the tears and heartache over the years by coming together.

Stephen’s Perspective

I was 13 and Matt was 10 when our dad told us he had terminal cancer. There are two very distinct periods in my life: the time before dad’s cancer and the time after. As young kids, Matt and I enjoyed playing sports, spending time with our friends and going on family adventures, particularly camping and fishing. When my dad told me he was going to die in a few months, in many ways the innocence of youth faded and I grew up pretty quick. Despite the harsh realities of our dad’s illness and our uncertain future, the two years that he was sick became a rallying cry for our family. We were determined to live every moment, and to experience joy, sadness, doubt and hope together. We religiously prepared his Ensure shakes in the hope that it would give him strength through his cancer treatments to engage us in one of his adventures – a picnic in the park after Sunday mass; building a pond in the back yard; fishing at Governor Nelson State Park; a few more runs down the ski hill; and one last road trip to the Ozarks. The ironic beauty of those two years is that in the midst of losing our parent, we grew closer to each other.

I remember our final moments with my dad as though it happened yesterday. My mom, Matt and I sat with him in the sunroom. We locked hands in an unbreakable chain of love, and prayed for calm and peace. I have always felt blessed that we had that time and those experiences, knowing they sustain us to this day. For us, quality of time exceeded quantity of time. I remember the days and years that followed. No one slowed down for us. Life just moved on and we relied on each other to learn and grow. I remember how much I relied on my big sisters – sometimes for support and understanding, and other times for guidance to steer me back on track when I lost my way. Only Becky could get away with calling my college dorm room to wake me early on a Saturday morning and light a fire under me about my upcoming exams that required my attention. Only Christy could relieve my panic at being unprepared for my exams and attempt a last minute revival. And, only Matt could teach his older brother a wise lesson I desperately needed to learn. Shortly after dad died, I had a misplaced sense of responsibility to play the part of “the man of the house” (whatever that meant). As he went to bed one night Matt gently reminded me “I don’t want you to be my dad. I just need you to be my brother.”

Matt’s Perspective

I was 12 when my dad died.  Today I am 36 years old.  I have a beautiful and loving wife, an amusingly adventurous two-year- old son, and a little baby girl who just arrived.  My life is blessed.  Still, it is surreal to reflect and realize that I have lived 2/3 of my life without my dad.  He may not be here to experience my life, but my life experiences him.  The ripples of his death are felt in all of the blessings I enjoy today. And, if I let myself, I can still see the world through those twelve- year-old eyes.  

My dad got sick when I was ten.  Early adolescence.  That time in your life when school and friends and puberty are supposed to consume your every thought.  Instead, I thought about death.  Death was all around me.  In a matter of 3 years, our family lost my father, two close family friends and my grandmother.  As an adolescent, I didn’t know a lot about life, but I was surprisingly familiar with death.  Don’t get me wrong.  I was still a kid who played and learned and had fun.  But when I went to a sleepover, I always feared what might happen when I was gone.   Every note I wrote for a birthday or a holiday felt like my last chance to tell someone I loved them.  Words had to be perfect.  Goodbye’s had to last.

Shortly after my dad died, my grandma also passed.  I remember her wake vividly.  Afterwards, my siblings and I were sitting together in a gathering room while my mom was finalizing arrangements for the next day’s funeral.  We were in that room… the four of us.  It was quiet.  I looked at my siblings and they looked tired.  They looked gutted.  And then, out of nowhere, I just blurted out, ‘What if Mom dies?  What happens to me?’  I can only imagine how sad that question must have seemed to my siblings, coming from their little brother.  I don’t know what I expected them to say in that moment.  Honestly, I can’t believe they could even muster a response.  But they all did.   My oldest sister Becky, in the midst of medical school, would quit everything and come home.   My sister Christy, just finishing college, would put her future on hold, and she would stay with me.  My brother, still a teenager himself, would somehow take care of me.  In that moment when I feared I could lose everything to death… my parents, my home, my city, my friends… somehow in that moment, my siblings helped me realize that nothing could tear apart my family.  We were strong, and tragedy only strengthened us.   For me, that was the moment that death stopped winning.  That was the moment that I started healing.

A Reflection on Colleen

Our family’s deep experience of loss resurfaced all over again when Colleen’s cancer recurred. We knew what it was like to lose our dad; but what was it like to lose a sibling? The Conway sisters, in the most loving way, reached out to all of their cousins telling us that Colleen’s chemotherapy was not successful and there were no more treatment options. We were devastated. For three months, we watched the Conway sisters do exactly what we did when our dad was sick. Every chance they got, they traveled home to be with Colleen. They were present to her; they cared for her; and they comforted her.

The Conways are a beautiful family with incredible energy; and they’re at their best when they’re all together. We have so many wonderful memories of our Conway cousins from family reunions and weddings. They were the first ones out for a round of twilight golf and the last ones to leave the dance floor at a reception. Their world changed two years ago. Yet, the love and support they showed Colleen and each other sustains them today.

We miss our cousin, Colleen. She was hilarious, a care-taker of everyone, a brilliant surgeon, a nurturing mother and a devoted sister. When Colleen was sick, she shared what life was like living with cancer when most of her colleagues and acquaintances didn’t know of her diagnosis. She said, “(My illness) makes me be nicer to people because I don’t know what they are struggling with.” So, we celebrate and honor our cousin Colleen, and are mindful of how we treat others because we don’t know what struggles they are facing.

Thank you, Shane and Jessica, for your blog each week and for giving us a crack at this. We’ve learned a lot in the process. First, it’s not a great idea to write a blog on grief when you’re at work. Blotchy eyes, red face, concerned coworkers. Time to go home. The most important lesson, though, is how meaningful it is to connect with a purpose, resurface feelings and dialogue about our experience. We learned things about each other’s grief process that we never knew. What a gift.

 

Being Supportive The Week Of A Funeral

We previously talked about how to help someone in grief, but wanted to address a particular time period in grief. A friend of ours recently asked for advice on how to be supportive to a family member during the week before a funeral. It got us thinking back to this hazy time and what could be helpful. We are glad that she asked so that we could offer a few specific and realistic suggestions. Actually, we have been working on this post for a while, but just realized that this posting date is the week of the second anniversary of our sister’s death.  We hope to focus on one positive, in that we do have some advice to share in order to help others in the unwanted position of planning a funeral.

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

When we think back to the week of our sister’s funeral, like many grievers, our recollection of events is a little blurry. We were sleep deprived, delirious humans who spent our days looking through pictures, thinking and writing about our sister while preparing her eulogy, helping plan a funeral mass by picking out songs and readings, and attempting to read and respond to messages from friends and family. To prepare for a funeral for our 39 year old sister was surreal and devastating.

But seriously, the list of tasks involved in planning a funeral is pretty ridiculous. Not to even mention, the hundreds of thank you notes that we wanted to send following the services to those who sent flowers, food, and donations. The only way we could manage the notes was to divide them up. And keep in mind, we were doing this work while wishing that we could just stay in bed and hide under the covers.

Somehow, we did it but did we have to do all of those things? Probably not, but we were too tired to make reasonable decisions, which is why we did things like wander the mall looking for an outfit or extra tights for the children to wear to the funeral, but wishing that we were home on the couch with our family. You can learn from our mistakes and help your friends and family who are preparing for a funeral by following any of these tips:

  • Delegate jobs. The immediate family may not be capable of figuring out what they need in order to ask for help, so just offer specific help like, “Can I go to the mall and pick up any accessories or clothing for the ceremony?” Or, “Do you need a courier to drop things off at the funeral home?”
  • Entertain the children. Take them on an outing, let the kids get a much needed break and burn off some energy.
  • Offer to pick up arriving family at the airport or sponsor their transportation costs in a metro car service.
  • If you live far away, you may want to do something but can’t physically be there to help. Maybe a care package of fun distractions would be nice. Include things like magazines, funny books or other distractions, a comfy shirt to lounge in.
  • Organize dinners to be dropped off at the house - simple, comforting meals.
  • Send wine.
  • You can plan out tasks as a family or group to offer lots of rotating help.
  • You may feel like you wish you could do more, but just remember that your simple presence at memorial services, if you are able to attend, can be very comforting. When we looked out at the crowd of people who showed up to remember our sister, the sheer number of faces was amazing and heartwarming because we knew she had touched so many lives.

Jan. 26, 2017 Caregiving and Grief News Roundup

We were enthralled with this NY Times article- our children were ignored and things got messy while we read it start to finish. B.J. Miller is one inspirational man - a triple amputee who went on to become a physician focused on changing palliative care. His goal is to “de-pathologize death.” What is a good death? How do you judge it? What matters in the end? Such important questions, and we are so glad B.J. is asking them. 

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Another recent NY Times article asks "Who Will Care for the Caregivers?" and states that "we — as doctors, employers, friends and extended family — aren’t doing enough to help them." It covers so many points we agree with! Family caregivers aren't always included in decisions about patient care but are expected to perform complex medical tasks at home with little training.  And as we've said, policies that increase paid leave and provide flexible work schedules would help support family caregivers. 

Yes, yes, this is what we’ve been saying. Being a family caregiver is difficult. Can’t we make it easier? As this states, “Affordability for long-term care is surfacing as a clear and growing challenge for families.” Caregivers are gaining influence.

Anne Tumlinson of Daughterhood highlights one of our favorite topics: sibling caregivers, and we were lucky enough to be mentioned in the post. She shares tips for avoiding conflict and building better sibling relationships while caring for aging parents.

This beautiful and honest story from Zach Sobiech’s sister, Alli, is worth a read. We relate to her story of sibling loss, anxiety and grief, and efforts to help her child know his deceased uncle.

As we mentioned beforePrince Harry has spoken about grieving the death of his mother. People magazine recently featured his story about grief. He shares that he suppressed his emotions for a long time, but now is energized after finding a way to carry on his mother’s legacy through his charity work.

This radio show via KALW in San Francisco is part of a series covering end of life issues. Palliative care training is now offered in almost all medical school training, but unfortunately there is a shortage of doctors specializing in this. Dr. Jessica Zitter is interviewed, an ICU physician who specializes in palliative care, and talks about her personal practice “resisting the urge to do more” and asking her team to think about “how is this really going to help?”

 

High Flight

We are excited to shed more light on our favorite topic and share another perspective on sibling loss. We introduce a guest blogger and friend, Melissa Kroll, who lost her older brother tragically at age 19. She reveals how difficult it is to experience such a great loss at a young age, and how it affects the family dynamic, even 20+ years later.


It’s hard to know where to start with a story like this. It feels like it’s not my story to tell, but in reality, it is...

Losing a sibling is an odd thing to go through. It was catastrophic to our family in so many ways, and today - on the 21st anniversary of his death - I find myself grieving for his loss still, of course, but also for the loss of what could have been.

My older brother, David, died suddenly in a plane crash when he was 19, just five days before Christmas 1995. The instant that phone rang in the middle of the night, the trajectory of our lives, and my family’s relationships with each other, changed forever.

My mom was never quite the same after his death, and now that I am a mother myself, I cannot fault her for that. But I think what many people don’t realize is, when a sibling dies, that is not the only loss that you, as a surviving sibling, have to endure. You also lose your parents - at least temporarily. And when you are 16 and 12 (myself and my younger sister, Sara, respectively), that can be a hard pill to swallow. The people who are supposed to protect and comfort you suddenly aren’t able to do that, because they can’t see beyond their own grief. While I was on the downward slope of my “formative years,” if you will, (or adolescence), Sara was smack dab in the middle of hers. I don’t have to wonder how that affected her - while she is a wonderful, compassionate and hard-working woman, she has been plagued by anxiety and health issues for the last 10-15 years. Thankfully she is stronger than she thinks, and she’s overcome a lot. I, on the other hand, simply turned to those in my life who I could count on for that compassion and support -  my circle of friends, friend’s parents, boyfriends, teachers- basically anyone outside my immediate family.

I know our family is not solitary in our grief - bad things happen to good people everyday.  But the truth is, when a tragedy like this strikes, nothing is really ever the same. I can’t erase the image of my Dad crumbling to the floor after hanging up the phone, or my Mom running outside to the front lawn and screaming. I also can’t help but wonder, on an almost daily basis, what my family’s relationships would look like if he were still here. Would he and I be close? Would my children have older cousins to play with? Would my Mom be happier and more content? While it is true that we are still close as a family, it is also true that as a surviving sibling, I have often felt like my sister and I aren’t enough.

But as cliche as it sounds, life does goes on, and the best I can do is keep my brother’s memory alive by telling my children about their Uncle whom they will never get a chance to meet.

Celebrating a Hero Today

We would dance with her to celebrate if that is where the night led us....

We would dance with her to celebrate if that is where the night led us....

Birthdays are a big deal in our family. Growing up, we got to pick our favorite meal, enjoy cake and homemade birthday banners, and open presents. As adults, we continue to send each other cards and gifts to make the day extra special. It would be hard to let this week go by without acknowledging an important time of year and day dedicated to one exemplary woman. Our sister’s birthday is this week- today, in fact- and she deserves special attention. We celebrated this day for 39 years with her and we want to continue to celebrate her today even though she isn’t here. This year isn’t a milestone birthday, unlike last year which would have been her 40th birthday. As you can imagine, that was incredibly hard for many reasons. But this year allows us to reflect further on her birthday and more importantly, her. The word “hero” comes to mind.

There are many heroes and role models in life. We learned about a Special Operations Marine who was his brother’s real-life hero from our guest blog writer, Tyler. We also recently watched Michelle Obama's farewell speech, and were moved by her inspiring words : “Don’t be afraid...Be focused. Be determined. Be hopeful. Be empowered.” We have been thinking about the unsung, non-famous, everyday heroes. A hero is defined as a person who is admired for courage, outstanding achievements, or noble qualities. We were previously asked by Working Daughter about our heroines, and we were grateful to be asked this and to answer: 

“Our sister, Colleen, was our role model, because she was extremely hard working, made the most of her time, and managed to be good at almost everything. We still don’t know how she accomplished all that she did in her 39 years on this earth. In addition, our Mom is not only a Super Mom, she is also a Super Caregiver. She managed to watch her child decline and somehow kept it together while providing the best kind of love and support that only a mom can provide."

Until we watched our sister face the end of her life, we didn’t understand what a brave person was. To be told that your time is limited and a disease will take over your body and life, as you are just starting your adult life, is something that must be at the forefront of your mind every minute of every day. Yet Colleen had goals, ambitions, and people she cared about, and she was determined not to let cancer define her. She wasn’t given a choice, a different path to take, and she faced it in typical fashion - with grace, a fierce outlook, and a humorous attitude. She eventually had to accept defeat, yet she still managed to show courage in that acceptance, and we will never forget that. There are many people like her, facing their own uncertain future, battling illness, and we remind ourselves of that often. It is an incredible heartache, a pain that is unreal, but these everyday heroes pull themselves up and take it on, good or bad, each day.

Our sister fought cancer like the super human she was. She didn’t act afraid, but remained protective and concerned about OUR futures and OUR well being. Even in her most difficult times, she still mothered us and wanted us to be ok. She didn’t shut down, become enraged, or disengage from us. She came to a place of peace on her own - her own timeline, her own terms. And in her final stand, she yet again led by example. As Michelle Obama said, “Don’t be afraid.” Somehow she wasn’t. Colleen is our unwavering hero.

So on this day, we’d like to hear your stories. If you know Colleen, share a story or memory of her, or tell us about your hero. We want to celebrate all the unsung heroes today.

Our Recommended Book List for Grievers

Maybe it’s just us, but we keep seeing lists of books, such as Best Books of 2016, Bestsellers Lists, Books to Read in 2017, posts of what people learned in 2016, and their goals for future reading. We want to get in on this! As we look back on 2016, we realize that we learned many things and laughed often from reading. Below is our own unique list of books that have helped us in our healing. We have previously recommended some of these books in past blog posts and on our resources page but wanted to revisit a few and share some of our favorite parts and quotes. In no particular order…

It seems appropriate to start with this New York Times bestseller When Breath Becomes Air, which brought to the forefront the subject of death and dying and was groundbreaking in that it is from the perspective of the patient, or the person dying. Paul Kalanithi as both a physician and a patient contemplates, “What makes life worth living in the face of death?” At a young age, just like our sister, he was forced to face his own mortality. It is difficult for us to choose just a few favorite quotes, because surely we would be sued for copying the entire book. We previously discussed this book and others like it in our post "At Least America Is Reading About Death." Many can learn from his wise words and his insight into changing the medical field’s view of the dying and how to help them:

“Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough…..When there’s no place for the scalpel, words are the surgeon’s only tool.”

In Fly a Little Higher, Laura Sobiech brings us on her heart wrenching journey of her son’s battle against osteosarcoma which he unfortunately lost. We related to many parts of her book- the ups and downs of cancer, the scenes of her tight knit family dealing with such tragedy, the siblings' heartache, the awe of watching the patient face it all with such grace. When she talks of her children, she refers to them as “a team...and they worked best when together.”

Laura even allowed us to laugh a few times. One of those times was when she is talking about how people aren’t sure what to say and can’t imagine dying young. She says:

“I’d often fantasized about writing a tutorial entitled ‘What Not to Say.’ It would be very basic, just a couple of hard and fast rules:
1. If the sentence you are about to say starts with the phrase ‘have you’ or ‘should you’, don’t say it.
2. Unless you have had a child with the same disease and you’ve been through the exact same thing, don’t offer advice.
3. Don’t tell me about everyone you have ever known who has either battled cancer or died from cancer.
4. Don’t tell me to be grateful.”

This list should be printed and handed out to the masses. Thank you, Laura.

Not to give away too much of this novel, A Window Opens by Elisabeth Egan, some great advice and insight comes after a death in the family. She deals with the brutality of having to return to work and the real world:

“One by one, the guests left my mom’s house. They promised to check in soon and made us promise to let them know if there was anything they could do. News flash: nobody is going to give you an assignment. Just do something.”

And we laughed out loud when the main character returns to work and is asked by a coworker if she received the Edible Arrangement: “‘Yeah, definitely.’ Translation: ‘Actually, not so much. Pineapple impaled on a toothpick doesn’t make anybody feel better, ever.’”

Nora McInerny Purmort’s It’s Okay to Laugh: (Crying is Cool Too) was just what we needed - to laugh during our grief. We related to her sarcasm and felt like we could be friends. She struggled with a run of terrible things that happened to her in a short period of time and shares it all in a very real way. There are too many good parts so you really just need to read it, but we loved the chapter where she discusses her relationships with her siblings. Of course, it is funny, and we appreciated the little tidbits like how she describes herself as a “knockoff of her sister...but taller.” When her husband entered hospice, she talks about how her siblings helped her and were with her:

“She [Nora’s sister] was ...perpetually cleaning my kitchen, raising my child, and giving me healthy pours of white wine to anesthetize me at night."
Her brothers were present too and you can sense the type of unwavering sibling support that they provided.:
"When I went to bed, I heard him [Nora's brother] saying good night to Aaron [Nora's husband]. 'It's okay, buddy,' he told him, 'I'll take care of them. You did good. You did real good... We learn as we get older to appreciate the people we love for who they are, and for how they love us.”

In The Rainbow Comes and Goes, Anderson Cooper and his mother, Gloria Vanderbilt, publish their correspondence over the course of a year in which they discuss their lives and losses, including Anderson’s father and brother. They talk about grief and death honestly, and their fears and hopes, as when Anderson writes: “I haven’t told you this before, but I’ve always assumed I would die at fifty because that is how old Daddy was when he died.” We related to Anderson explaining that he never expected to lose his brother, instead expecting to have more time together:

“My greatest regret is not making more of an effort to be closer to Carter, not talking with him about feelings or experiences we may have shared. Perhaps it would have made a difference in what happened to him. I always imagined we would be closer as adults, once we had lives of our own. I thought there was plenty of time.”

Yet, ultimately, knowing that “the rainbow comes and goes” - a phrase from Wordsworth - is what Gloria tells Anderson that she finds so reassuring:

“In every life, you have moments of blinding beauty and happiness, and then you land in a dark cave and there is no color, no sky. Then the rainbow returns, sometimes only briefly, but it always does come back. You have to believe that it will, even in the darkest of times. That belief is what is really important.”

Preserving Memories: Hard Work But Necessary

It’s been almost 2 years since our sister Colleen died, and we still feel like we can hear what she would say if we could call her up to tell her some piece of news from our lives. But recently, in gathering some memories of her, at first we had a hard time coming up with stories and remembering specifics. The inability to bring up vivid memories induced panic. It’s only been 2 years, what will happen 5, 10 years from now? What if we have already forgotten or continue to forget funny stories from growing up or some piece of wisdom she gave us? We wanted to know more about how to preserve her memory. Our set of shared experiences is now closed. There is no chance to make new memories.

There seems to be some belief tied to the idea of “moving on” that it is natural and maybe a few feel that it is even necessary to forget the deceased somewhat. But most people continue to have some kind of relationship with the person they lost, and want to keep that person’s memory alive. Figuring out a new relationship with them can be empowering and lead to happiness. In our experience, the pressure to move on comes at the same time that the too short sympathy period ends, and when the condolences dry up, so do the stories that other people share with you about your loved one. Then it can feel like not only do you have “grief brain” - or the distracted, everyday forgetfulness that comes with grief - but your memories that include your loved one seem to be slipping away as well.  

We began searching for ideas and, initially, we came up with the obvious: talk about your loved one often and share stories with others. If you’re like us, memory gets fuzzier as we get older, and repetition helps us to remember stories. We also find that pictures help to recall details, so looking back through photo albums - hard copies or online - can restore memories. We ordered extra copies of a photo book we made for our sister and enjoy looking through it whenever we miss her. Another approach is to write down memories as they come up in a journal or create a memory jar of stories and pictures that you can pick out to view any time.  

In “Passed and Present”, author Allison Gilbert talks about the task of remembering as part of grief and reminds us that “[w]hen it comes to keeping the memory of our loved ones alive, that work is up to us.” She offers unique, concrete strategies for doing so. Some of our favorites among her suggestions include using social media to invite stories about your loved one, such as posting on Facebook on an anniversary and requesting others to comment with their memories, making a playlist of songs that remind you of your loved one, keeping their recipes with an anecdote about them, and making a memory game with family pictures that include deceased relatives to help your children remember them (we were excited to see Shutterfly offers these personalized games!)

{Shane} I have some pieces of jewelry and clothes of my sister’s that remind me of her whenever I see or wear them. I love getting compliments on them because it makes me think of her and what good sense of style she had, and sometimes I imagine telling her what so-and-so said about her fabulous necklace. I treasure gifts she gave me or my daughter. I also have a few things that I gave to her, which came back to me after she died. Some were nice gifts I gave to her as an adult, like a pretty gold tray, and others were gifts I gave to her when we were children that bring back funny memories to me whenever I see them, like the scrapbook of quotes and poems I made for her in high school. I loved making crafts as a kid and since Colleen was my cool, older sister, I often made them for her. She didn’t always want them, like the poor ugly teddy bear I sewed for her thirteenth birthday when she was too old for teddy bears. But she must have appreciated my efforts if it still exists to this day. I wish we could still talk and laugh about all my arts and crafts.

Recently, a fleece sweatshirt of hers that I loved to wear was ruined by my dog. I was so mad at myself for leaving it out, and at the dog for chewing a hole in it - really, what dog mistakes a sweatshirt for a chew toy? I realized then that some of the tangible objects I have that remind me of Colleen will inevitably get ruined or lost or maybe fall out of style and wind up in the back of my closet. That doesn’t mean I want to stop wearing them or using them now, but it does mean I need to think through making concerted efforts to preserve her memory on several fronts, with and without tangible things.

{Jessica} I often find myself holding and rubbing a necklace that Colleen gave me. Sometimes, I reflexively do it and other times when I am thinking of Colleen. I wear the necklace often because if I wear it, then I feel like she is with me. When she gave us all this necklace, she was very sick and knew that she was dying. Some of the thoughts of her bring me back to this time, to her looking so ill and frail and to a very painful time. I get frustrated that I can so easily bring myself back to those terrible memories, yet have to rack my brain to remember that time as children when Colleen snuck dessert into our shared bedroom after I had gotten in trouble and lost my treat. Perhaps it is easiest to remember the sad parts as they are my most recent memories, but I want my memory to only go to the happy times and to the image of Colleen as the beautiful, strong  sister that I miss. I like to look at pictures of her when she is having fun and remember all of those good times. My hope is that I can erase that sickly image of her.

It is hard work to think of old memories and I’d rather just be able to call my sister. I recently found myself having some very sad days when I wanted to call Colleen and get her advice on something but was unable to. I realized in those days that I will go through most of my adult life without her and would come across moments like this often. I decided to just talk to her and imagine what she would tell me and it helped me to move on. I continue to talk to my children about her because I don’t want them to grow up without feeling like they knew her. That is my big fear, that we will get too comfortable in going on without her. I want her to always be with us and on our minds.

Friends and family can help to preserve memories. It is always nice to hear others speak fondly of our sister and we are always looking for new stories and new ways to have her on our mind.  Share funny stories, send along pictures that you come across, or a note that you find. Consider asking specific questions about a deceased loved one to help spark memories. There are parts of their history that only you may know and that are worth sharing. We encourage everyone to be a part of preserving memories of those that have died. And if you have lost someone and want to do more to preserve your memory of them or maintain a connection with them, don’t be afraid to be proactive - whether that means making one of the memory projects mentioned here or simply talking more about your loved one and asking others to share memories with you.

Tell us in the comments section below - What do you do to preserve the memory of lost loved ones?

Simplify and Downsize: Surviving the Holidays Without the Same Cheer

Have you been bombarded with emails and commercials about deals and found yourself wondering if you need another wireless speaker because it is 70% off? As we head into the craze of the holidays - the gifting, the hemorrhaging of money, the overdoing and overeating of everything - we have decided to hit pause and try not to cave to all of the pressure this season. This will be our second Christmas without our dear sister Colleen and it is not something that gets easier. Last year, we left town and avoided much of the holiday chaos, focusing on being together as a family. We have yet to figure out our “new Christmas normal” without Colleen.

Our holiday cheer is a little different now, it comes with some tears and fewer gifts. Our tears arrive at different times and for different reasons. Maybe it’s that we don’t have the great gift ideas that Colleen always had. Maybe it’s that we feel disorganized without her. Maybe it’s that she always picked out a special present for her godchild, but we won’t have the joy of seeing it this year. Maybe it’s when we are pulling together recent family pictures for a gift and she’s not in them. Maybe it’s worrying that they will play the Christmas hymn “Go Tell It on the Mountain” at church and we will lose it because Colleen always jokingly belted that one out. After you have seen your sister get through her “last Christmas”, all of the stuff that we buy and receive just doesn’t seem to matter.

Many find it difficult to navigate the holidays after a loved one has died. As we learned from this recent article, there is no “right way” to survive the holidays. As suggested, time and being honest about your feelings can help. There is an underlying grief that recurs with the holidays and it is exhausting to pretend to be full of holiday cheer. We no longer feel the need to bake 10 kinds of cookies, but we still struggle with the outside pressure to have a perfectly decorated house and the appropriate amount of presents. Don’t get us wrong, we do like gifting and still call our Mom “Santa,” but we are doing less of it all - less baking, less gifting, less wrapping, less cooking. Instead, we want to spend time putting together thoughtful gift ideas and writing down memories.

Our focus this season is on simplifying and downsizing Christmas. This may be our best idea yet! And we are not alone. Check out this blog post that guides us to a simpler Christmas, sharing multiple links about how to become more minimalist: The Helpful Guide to Simple Christmas Links

We are hopeful that we can commit to this trend and that it will reduce stress and allow time to acknowledge our grief. Our happiness comes from our loved ones, not all of the things, and we want to remember that each year.

In many ways, losing our sister helped us find more meaning in family and appreciating life - and isn’t that a big part of the holiday spirit? So for that, we are grateful. Although we wish we hadn’t gone through all of this pain to get here, it has helped us realize what is important to us: keeping things simple so that we can enjoy the holiday season and enjoy each other.

After Caregiving: Getting Back on Your Feet

This week, we are pleased to present a guest post from the Association for Long Term Care Planning (ALTCP). The ALTCP is a long term care insurance agency that provides free long term care information, resources, and planning expert advice for seniors and adults. The burden of the caregiver does not stop once the actual care ceases. For many, the after caregiving stage presents a new breed of struggles to face. Recognizing this difficulty, ALTCP.org shares a post that discusses these issues in hopes of assisting those who face the question: “What do I do now?”

Nothing can be more devastating than losing a loved one, whether it be your sibling, parent, child, or partner.  And no one will be ready for that to happen.

For many, the long stretch of battling a disease might seem like preparation for what is about to come. But when it actually does, we feel both prepared and unprepared for it. And when it actually does happen, you find ourselves wishing for more time to do certain things with them and we end up listing the things we had forgotten to say. There is never going to be enough time to let the thought of a loved one dying sink into our system. And that is just the way life works.

Caregiving is not an easy task, but it can be a rewarding one. At present, there are 43.5 million people providing unpaid caregiver in the United States. Out of this number, 24% are millennials age between 18 and 34. It is such a common instinct that once anyone close with family finds out that a loved one is ill and that he or she needs help, the immediate reaction would be to jump on a plane or get in the car and just be there.   

The actual care is tough, and it will test the bonds of family. So many caregivers go through what many call Caregiver Stress. We put ourselves out there emotionally, financially, physically, mentally. The responsibilities of balancing a job, your wellbeing, and the care that your family needs can even seem downright impossible at times. And for many, this new life lasts for years.

In spite of all the late nights and stress, we will never trade it for anything because they need it. And we need it, too. But what happens when it all ends? How do we and our families get back on our feet after that comes to an end?

It’s all about pacing

Grieving is a natural and personal process. There is no time limit, and there is no guidebook on how to go about grieving. While many choose to surround themselves with groups of people and the city buzz, others cope better by taking a step back to rediscover themselves. Bear in mind that you are allowed to grieve in your own way. Your grief is entirely your own, and you should not have to feel guilty for it.

Some people try to jump back into their old routines because it brings back a sense of ‘old’ normal. It might feel off at first as you have had a different normal in the last years. But this way, it can help you get back on your feet.

Some choose to travel. Nothing enlightens the spirit more than new experiences, sights, and different cultures. They get in touch with their selves through these new experiences. After all, we sometimes need to take a step back from everything else and just enjoy the world for all that it can offer. 

Family above all

Once we lose a family member, it truly feels like a puzzle piece has been taken away from a complete set. So we ought to turn to those who are in the same situation and who completely understand: our families. 

Talking about your grief with each other immensely helps. Not many people see how cathartic it is to express their emotions, no matter how difficult it may seem. It can become a form of release, and it can even help a struggling family member come to terms with the new reality.

Reconnect with yourself. Even when you feel like you don’t want to.

Often, when we become caregivers, we end up sacrificing so much. Old activities take the back seat, and some individuals end up putting work on hold. Understandably, we needed to dedicate so much of our time to our loved ones. And for years, that became the top priority.

As we get back to how it was before, try resuming hobbies that you enjoy. Join or re-join a group or a class that allows you to relearn a hobby. Or you can even try starting a new hobby!

A great one to start (or restart) is exercising. Being physically active has proven to improve people’s mood and lessen depression. People who exercise are naturally more positive, so who wouldn’t want that natural high?

Find a way to help other people in the same situation.

One of the rewarding things in life is having the ability to help other people. The situation may be difficult and challenging and the last thing we probably want at the moment may be to relive the whole event (albeit as an outsider this time). But if you feel like you have wisdom to share or an extra pair of hands to offer, then do so.

Volunteer and help others who are in the same situation you were before. Point them in the right direction when it comes to tools and resources or encourage the importance of long term care planning in families. It does not have to be something big, just make the extra effort. Sometimes, even listening to them and spending the afternoon is enough.

After all, we had other family members and loved ones with us, but some might not be as lucky as we were. 

Essential

The timing of this important guest is perfect as we look forward to Thanksgiving and reflect about what we are grateful for. We are thrilled to introduce our very special family friend, Ellen St. Germain, as a guest blogger. We have known Ellen and her fabulous family for our entire lives and they are basically part of our extended family. We are blessed to have them in our lives and our sister, Colleen, was very thankful for this wonderful friendship. They have provided us tremendous support and comfort after Colleen’s death. This week, Ellen, talks about the unique bond that she and Colleen shared and how Colleen continues to be part of her life.

Little did I know how essential Colleen was in my life, until this past year.  Colleen and I knew each other before we were born – little twinkles in the sky – as our Dads went to medical school together.  Colleen and I are both the oldest children – Colleen with her four sisters, and I have two sisters and one brother.  We grew up together living long distance from one another, as “pen pals” back when “snail mail” was the normal mode of communication, and taking our annual ski trips with the nine kids and four parents.  Those ski trips to places like Vail, Steamboat Springs and Crested Butte are some of the most fun memories of my childhood.  I idolized Colleen.  I could not wait to have a ski vacation and get to be with her for a week.  I thought she was just perfect in every way – so academically smart, so athletically coordinated, so beautiful, such a great sister and daughter, and the list goes on.  Colleen could do no wrong in my eyes.  I always aspired to be just like her.  There was so much that I could learn from her on how to be a better person.  The November before Colleen died, she wrote to me about how hard it is to explain our relationship “to say we are just friends seems so simple and trite.”  That is just it, hard to explain.  

Drawn by Ellen in 1985

Drawn by Ellen in 1985

Colleen and I both went to the University of Notre Dame for undergrad (Go Irish!!).  I loved having her so close, and got to spend many holidays like Thanksgiving and Easter back with her family in Michigan.  Our senior year, there were many times when I crashed at her apartment after a night out.  Colleen always went out of her way to do kind things while we were in college together – like make cookies or meet up for meals or organize get-togethers when our parents were in town.  Colleen always put other people first, she made everyone feel special and unique.  That was just her nature.  It was a great four years where I grew even closer to her, since we were physically in the same location at a time before social media was king.  When we graduated, she gave me the poem below.  “With every goodbye you learn” – I am not really sure that at that time, I would understand what that could mean to me.     

Right after Colleen passed away in February of 2015, my sister noticed that my youngest son had something on his eye ball.  Fast forward to this year, and three eye surgeries later under the care of an excellent cornea specialist – praise God and praise Colleen that everything is proceeding normally.  Who would have thought that part of my daily life is now in one of Colleen’s greatest talents – that of a cornea specialist??  I think of Colleen every single day – multiple times a day, when I am putting eye medicine in my youngest son’s eye.  I have found myself standing in Target trying to figure out which Artificial Tears to buy for him, because they all have different ingredients, with tears streaming down my face because I can’t call Colleen on the phone to ask her what to buy.  I find myself talking out loud to Colleen asking her if we need to get another doctor’s opinion, or if we are doing the right thing in his medical care.  Each night, we pray to St. Lucy (patron saint of eyes) and St. Colleen.  There is absolutely no doubt that she is guiding us through this process.  I know that Colleen is helping us to make the best decisions for the next steps in his medical plan, I can “feel” her.  Colleen was a medical doctor, but she was also a Mom!!  I can hear her saying “I am right here, you are not alone.”

Colleen was my first close friend to pass away at a young age.  At the time it happened, I don’t think I really fully processed what was going on and simply suppressed my emotions (minus the funeral mass, where I turned into a sobbing, shaking mess).  Denial seemed the easiest route at the time.  But God has an interesting way of intercepting our lives, to provide us guidance as we take it one step at a time, and this past year, the journey on my son’s eye has really helped me to face my emotions.  As I pray to Colleen so often, she helps me put perspective into the priorities in life – ordered by our Catholic faith, our family and our friends.  I am very thankful that her sisters have started this blog as a resource for our age group.  They have continued Colleen’s mission in being essential to many people’s lives.  I look forward to reading each post and find myself nodding along in things I wish I had known to have been a better friend during the process.  It can be awkward for this age group to try and navigate through the end of life process.  This is not the natural order of how things are supposed to happen.  Yet as I have learned, Colleen remains essential in my life – whether she is here on Earth or up in heaven.  I tell my youngest son how lucky he is to have his own very special guardian angel.  Love you, and thank you, Colleen.

 

Nov. 10, 2016 Caregiving and Grief News Roundup

November is National Family Caregivers Month! There is even an official proclamation from President Obama. We are reminded of our prior post, A Caregivers "To Don't" List, and hope you are finding time to relax. Let us know how you are celebrating or if you are thinking of a special caregiver this month. We are always celebrating siblings! Other great organizations are also recognizing this special month, such as WorkingDaughter.com and National Alliance for Caregiving.

This new business “Wellthy” is brilliant and just received $2 million in seed funding. Families are actually assigned a coordinator who helps with various overwhelming tasks such as dealing with insurance claims, refilling prescriptions, and arranging specialist appointments. We love what Lindsay Jurist-Rosner, founder of Wellthy, says at the end of this article: “Starting a business is hard work,” she says. “But after the experience my family and I have had, starting a company is nothing.”

This article offers an interesting perspective and plenty of facts and links to information about caregiving costs and need for more support.

Read about the honest conversation featured on a Cosmopolitan.com podcast that includes one of our favorite authors, Nora McInerny Pumort (“It’s Ok to Laugh (Crying Is Cool Too)”), and the CEO of a helpful website featuring stories of loss, Rebecca Soffer (ModernLoss.com), who discuss loss and how to help yourself or a friend.

As we’ve already said, we love Emily McDowell’s greeting cards and appreciate her humor and sincerity. And it is perfect that she has written a book - "There is No Good Card for This: What to Say and Do When Life Is Scary, Awful, and Unfair to People You Love" - with empathy expert, Dr. Krowe. We can’t wait for this book to be available in January, but for now we wanted you to get as excited as we are about it.

The Guardian shares insights from readers about what death and grief means to them.

This article describes a recent stand-up set by comedian Patton Oswalt, who opened up about his grief over the sudden death of his wife with humor and honesty.

Loss, Tragedy, and the Power of Healing

We are excited to share the last installment of a series from a family who dealt with tragic loss. We heard from Amanda and Tyler who shared their perspective on grieving the death of their beloved Ford, a Captain in the United States Marine Corps. This week, we are happy to introduce a guest blogger and friend, Kathryn Tappen, who shares her emotional story of losing several pieces of her puzzle and how she survived such difficult times in her life. We are grateful for this family’s insight into grief and their touching and wise words.

2014 was a year I wanted to forget. After five years of marriage, my husband chose to move on with his life without me. Throughout this difficult time, I relied on the strength of my parents, my sister, and my closest relatives and friends.

I had never experienced pain on that level ever before in my life. Anyone who has ever gone through a divorce knows the debilitating pain, the shame, the embarrassment, the overwhelming feeling of failure, and ultimately, the feeling of death.

I had lost the one person in my life who was supposed to be with me until death do we part, the person who knew me better at times than I knew myself. My best friend.

I had lost a piece to my puzzle.

One of the hardest phone calls I had to make was to my Uncle Tom right before a big family wedding in August 2014 to tell him that my husband wouldn’t be at the wedding, and I had to tell him why. I had kept everything so private and quiet up until I knew that the marriage was over, mostly because I was so ashamed and felt like everyone would view me as a failure. My Uncle Tom, my Dad’s brother, is like a second father to me. From a young age, he treated me as the daughter he never had. I always wanted to make him proud,I followed in his footsteps at Rutgers University, where he was a Hall of Fame football player and standout athlete, and where I carried on the Tappen tradition by competing as a Scarlet Knight in track and field.

That phone call was the first time in my life I had ever heard my big and strong Uncle Tom’s voice quiver. And yet, at the same time, I felt empowered by his words. Uncle Tom had also gone through a divorce at a young age. I guess along with everything else, we had that in common too. He shared valuable words of insight, knowledge, wisdom, and experience with me that I will never forget. I knew I could depend on Uncle Tom to help get me through this difficult time.

Five months later, on January 1, 2015, I lost my dear Uncle Tom to cancer.

Another puzzle piece, lost.

At this same time, my career was taking off. I had to smile triumphantly in the public eye, and yet I was dealing with so much personal heartache and pain behind closed doors. I wondered how I was supposed to get through each day.

A few weeks after Uncle Tom’s death, my cousin Ford, my Mom’s sister’s son and also a Marine, called me. Ford is like a brother to me. We grew up just miles from one another in New Jersey, and spent every waking moment together as kids. We would have cousin sleepovers, family barbeques, holidays, and everything else in between together. Those who aren’t close to their extended family may not understand, but in my family, these cousins are my siblings. I remember sitting on my balcony at the Marriott hotel in Charleston, South Carolina talking to Ford for the better part of almost two hours.

Ford, being from my Mom’s side of the family, called me that day to talk about the loss of Uncle Tom. While he only met Uncle Tom a few times, he had so much respect for him as a fellow Marine, and knew how close we all were to him. The conversation then went to my struggle with the loss of my marriage. Ford always has a way of being the rock in your life. He said something I’ll never forget: “Kathryn, on a scale of 1-to-10, you’re a 12. And anybody who is going to try to be with you in the future is going to have to get approval from me first, because no one is good enough to be with you.” At the time, I needed that. I felt so much better knowing that Ford had my back. We had the best conversation of our lives that day. We shared things with each other that no one else knew. We made plans to see one another later in March at my parent’s house in South Carolina.

Less than two months after our phone conversation, on March 10, 2015, Ford was killed. The Black Hawk helicopter operated by four members of the Louisiana National Guard and carrying Ford and six of his teammates in the Marine Corps Special Ops Command (MARSOC) forces crashed off the coast of the Florida Panhandle during a training mission. Three tours of active duty overseas, and Ford was gone on our own American soil. Ford was Captain of the elite MARSOC and a proud Naval Academy graduate. Basically, Ford was a bad ass American hero with three tours of duty in Iraq and Afghanistan as well as a Bronze Medal Recipient. But to me, he was my Ford, my cousin who gave the biggest hugs, had the loudest laugh in the room, the best sense of humor, and the guy who was going to protect me like a brother.

A third piece of the puzzle, lost.

I could write for days and pen thousands of words on how my life following Ford’s tragic death has changed. I’ll never be the same. No one in my family every will. The vivid images ingrained in my mind of burying an American Hero is tragic, ceremonious, regal, devastating, and beautiful, all at the same time. It pains me that so many families, like ours, have to bear this heavy cross.

I think about Ford’s parents and his brother every single day. I don’t know how my Auntie Mo, Uncle Wo, and cousin Tyler possibly get through a moment in time. But we are a resilient, strong family, and we continue to power along.

I have always been strong with my Faith and rely on prayer and God’s strength to help me through difficult times. At age 35, I can confidently say I’ve maxed out my calling minutes to the man upstairs!

Just last week, it was a beautiful warm, Spring day. I drove to the cemetery where Ford is laid to rest. I lay down on the grass above where he is buried, and cried. I talked to him for a long time. The birds were singing, the sky was crystal clear. I wanted to be close to him. I always do.

Anyone who has experienced great loss or tragedy in his or her life has undoubtedly asked “Why? Why did this happen to me? What did I do to deserve this?”

I did the same.

Until I realized the power and strength of healing.

Life goes on.

There was a good stretch of two years of my life that was absolutely horrendous. However, I’ve come out on the other side of pain, tragedy, and heartache. I have learned so much more about myself, what my mind and spirit are capable of handling, and how resilient and strong I am.

I have also learned that leaning on the people around me is imperative. I have learned so much more about my parents, my sister, my family, and my dear friends through this tragic time. Opening up about the many great losses in my life and the obstacles and challenges I have faced, has brought me closer to people around me, whether they are confidants of mine, or complete strangers who hear my story for the first time.

I will never forget the sad, tragic, and overwhelming events of the past two years of my life.

However, they will not define me. Life, and I, must go on. Ford, for one, wouldn’t have it any other way. He would be so mad at me if I didn’t laugh the way I used to, smile my big smile, and carry on his great hugs with every new person I meet. Uncle Tom, would be so disappointed in me if I sat and sulked, if I thought, “I can’t, or I won’t” even just once. Unfortunately, we all lose a piece, or pieces of our puzzle. Life, changes in an instant. I look for the signs from God every single day to make sure I realize how precious life is. I never want to lose that perspective.

Our E-interview via WorkingDaughter.com

We were honored to be interviewed by Working Daughter and wanted to share it with you. It was published on their website in April 2016. Working Daughter, which is listed on our Resources page, is a fabulous website that provides resources and support for women who are balancing their career and caregiving. We highly recommend checking it out. Below is the interview:

 What one thing do you wish you had more time for? Relaxation. This was especially true when we were in the role of caregiving before our oldest sister passed away. But the need for more relaxation continues in grief, and is always needed for working moms. It isn’t simply finding time or feeling like we deserve to relax. Whenever we do find time, those moments to ourselves are often filled with sadness. We found it impossible to shut off our brains, to prevent our minds from perseverating on the “to do’s” or contemplating a future without our oldest sister. Instead of relaxing, we were grieving in anticipation of, and later in the wake of, our sister’s death.

With what do you wish you had more help? As caregivers, we wished for more professional coordination of care and guidance during transitions between phases of care or medical treatment and palliative care. We felt to be on our own during what we call the “grey zone”, when our sister wasn’t receiving active treatment but prior to being enrolled in hospice. It was unclear who was in charge of managing symptoms or determining next steps. We just wanted to focus on spending quality time together but, instead, we were often distracted by questioning whether she should continue certain treatments or medications, wondering about the best nutrition plan, and facing decisions about when to start hospice without clear guidelines from medical professionals.

Where do you find support? From our husbands, parents, sisters, and brother-­in-­law. We are a tight family unit and there are a lot of us, so it’s always good to be together, fun and entertaining, and we are constantly in touch by phone, text, and email. We also have extended family and best friends that have gotten us through a difficult year. Right now, we are finding support from hearing others’ stories about caregiving and grieving.

If you knew then, what you know now… …we would stop trying to hold it all together in front of our sister. Sometimes the closest we felt was when we cried together. …we would take more people up on offers to help but with very clear jobs or requests. ...we would ask for help and support louder and more often from medical professionals and hospice workers. ...we wouldn’t stress about or avoid discussing the big questions or future planning that had to get done. ...we would realize that it’s ok to not feel like the best mother right now or to not feel like going to every social engagement.

What would you like to see employers do more of to help caregivers? First, we believe that the federal Family Medical Leave Act (FMLA) should be expanded to sibling caregivers. Currently, the FMLA defines family member as a parent, spouse, son or daughter, and excludes siblings unless they have a de facto parent­-child relationship. Second, employers could offer understanding and more flexibility where possible. Young caregivers can be at a disadvantage, in particular, because they may still be in school or just starting out in their careers and not have much clout with which to demand flexible schedules or deadlines. Increased awareness about the challenges of caregiving and the variety of the types and ages of caregivers would go a long way towards accommodating their different needs.

What would you like to see medical professionals do more of to support caregivers? There seems to be increasing research and focus on caregiver stress, which is helpful, but not always a corresponding increase in training for family caregivers. We would like to see medical professionals ask “who are your people?”, keeping in mind it may not be the traditional caregivers like parents or children, and then assess their capabilities and tailor training and support accordingly. By asking this, they would focus on the WHO, communicate with those caregiver(s), address their needs, and hopefully make the caregiver stress less of a burden.

Who are your heroines? Our sister, Colleen, was our role model, because she was extremely hard working, made the most of her time, and managed to be good at almost everything. We still don’t know how she accomplished all that she did in her 39 years on this earth. In addition, our Mom is not only a Super Mom, she is also a Super Caregiver. She managed to watch her child decline and somehow kept it together while providing the best kind of love and support that only a mom can provide. There are countless other female figures we love and admire, but we’d love to grab a drink with Michelle Obama, Oprah, and Ellen Degeneres.

What do you admire in/about other caregivers? We admire caregivers that are well rested, cheery, appear showered, and manage to be somewhat fashionable. We could not figure out how to sleep and we would love to have the power to follow the “take care of yourself” advice. Our sleep deprivation led us to only want to wear leggings and start thinking that face wipes were considered a shower. All joking aside, we admire caregivers’ strength to keep going each and every day.

What is your motto? #stoptalkingaboutyoursickcat To explain, we are just beginning to learn about Twitter, but find it hilarious to speak in hashtags. We refer to this one often and it has become a motto. People would compare things like their sick cat to our experience and it was sometimes funny, but also maddening. We learned to turn these comments into humor and it definitely helped us in our “anger phase” of grief.

Caregiving: a blessing or a burden? Blessing. We barely survived but would not have traded the experience for anything. It has made us more empathetic and, hopefully, better sisters and friends. We can relate more deeply to others’ grief or difficult times and want to help them through it.

Caretakers and Patients: Coping with Mesothelioma as a Young Adult

We are happy to introduce our guest blogger, Nicole Godfrey, from Mesothelioma Guide. She draws our attention to a rare form of cancer, mesothelioma, helping us understand what it is, that young adults are affected, and the challenges of caring for a young patient. Nicole is a writer and a community outreach team member at Mesothelioma Guide. When she isn’t working, she enjoys reading graphic novels and writing fiction. She also is an avid theme park enthusiast.

Mesothelioma is a rare but serious type of cancer. It usually occurs in the lining around the lungs or abdomen. When a confirmed diagnosis occurs, life changes not only for the patient, but it changes for their friends and loved ones as well.

Young people can often go overlooked in the mesothelioma community because mesothelioma usually occurs in people over 60. However, young adults are still affected. Some young adults find themselves filling the role of caretaker for a family member with mesothelioma. Other young adults find themselves unexpectedly diagnosed with mesothelioma.

The Cause of Mesothelioma

Mesothelioma is caused by exposure to asbestos. Asbestos fibers can float in the air as dust. When they are breathed in or swallowed, they can damage cells and eventually cause tumors to form. Asbestos is a mineral that was used in many products because it is extremely durable and a good heat conductor.

Most people were exposed occupationally, such as factory workers, shipbuilders, military veterans or insulation manufacturers. Unknowingly, many family members of people with asbestos related jobs, were also exposed to asbestos through secondary exposure. Often workers came home and still had asbestos fibers and dust on their clothing. Family members could breathe in asbestos through contact with the worker’s clothes.

Unexpected Diagnosis

The only way a person can get mesothelioma is by being exposed to asbestos. Mesothelioma takes about 20 to 50 years to develop after exposure to asbestos. This latency period can cause diagnosis to come unexpectedly, especially for younger patients who were exposed to asbestos as children without knowing.

In the United States there are approximately 2,000 to 3,000 cases of mesothelioma diagnosed each year. When a person is diagnosed, it often takes both them and their loved ones by surprise.

Due to its rarity, many doctors don’t have experience with diagnosing and treating mesothelioma. Under many circumstances, patients are misdiagnosed. They can be diagnosed as having a cold, the flu, or pneumonia. Patients are even sometimes diagnosed as having other types of cancer.

Some common mesothelioma symptoms are

  • Chest pain
  • Difficulty breathing
  • Dry cough
  • Weight loss  

When a person is officially diagnosed, sometimes it is too late and their treatment options are limited. This gives many individuals less time to cope and understand what is happening, before they lose their loved one.

Being Diagnosed Young

The average age of someone being diagnosed with mesothelioma is over the age of 60. However, there are cases where someone can be diagnosed in their 20s or 30s.

Jodi Page and Alexis Kidd are two survivors who are featured on Mesothelioma Guide’s website. They both were diagnosed at an uncommonly young age.

Jodi was diagnosed with malignant pleural mesothelioma when she was only 26 years old. She was given 19 months to live. With her family caring for her, including her dad, aunt, and sister, she beat the odds and is now a 16-year survivor.  

Alexis was diagnosed with peritoneal mesothelioma when she was 37 years old. She was given 6 months to live. With her husband supporting her, she is now a 10-year survivor.

 

By seeking mesothelioma specialists, treatments, and having support and care from loved ones, many patients are beating the odds of their original prognosis.

Having Support

A recent study revealed that the average age for a caregiver is 49.2 years old. However, 48% of caregivers in the United States are between the ages of 18 and 49.

A mesothelioma caregiver might feel like they are overwhelmed with many new responsibilities, such as feeding and bathing their loved one. They also may struggle with becoming their loved one’s healthcare or financial advocate.

In times of uncertainty patients need a strong support system. Mesothelioma caregivers also need support to get them through times where they feel like their world is being turned upside down.

It is always important for both mesothelioma patients and caregivers to know that they are not alone. There are mesothelioma support groups that both patients and their loved ones can get involved in. These groups can be found in their local community, online, or even by phone.

If you or someone close to you has been diagnosed with mesothelioma, you may find yourself having a lot of questions. For help seeking your answers, you can always contact Mesothelioma Guide.

Resources:

https://www.mesotheliomaguide.com/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449485/

http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf

https://www.caregiver.org/caregiver-statistics-demographics

http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/asbestos

 

Communication and Organization Tips for Caregivers

Caregiving can be tiring and stressful. Young adult caregivers like us may be simultaneously trying to juggle the normal chaos of feeding/bathing/dressing/driving/disciplining their children, staying up to date on school activities, cleaning and maintaining their houses,  showing up and participating in their careers, and keeping up their marriages….oh, while also caring for someone who is injured or seriously ill. We were thrown into this world and with it came many challenges as we helped our sister who was dying of cancer.

We have already talked about the “to don’ts”, our recommended entertainment to help you laugh, products that may give you comfort or save you time, and thoughts on home organization as a coping mechanism. This week, we wanted to share a few things that helped us in our communication and organization of our caregiving efforts. How did we keep it all straight? We didn’t….but we sure tried.

  • Email or an easy form to communicate updates.  We found email to be a quick and easy way to send updates to each other (our sisters, the in-and-out-of-town caregivers). We shared updates about how our sister was physically doing, her newest symptoms, thoughts on what we needed to do differently, lists of items to purchase, and recipe ideas as well as venting and expressing our sadness, stress, and even anger. If you have a few people engaged in the caregiving process, it may be helpful to setup an email list or a way to communicate. We know some people utilize the website “CaringBridge” to keep family members informed. We chose to delegate the task to one of us to write email updates to friends and family.
  • Delegate. If you are the primary caregiver, but you need more low sodium chicken broth, or another humidifier, or a new bean bag chair (or that’s just us?), put someone else in charge of getting those things. Your family members can do things from afar. Amazon Prime - hello! We were constantly ordering things when we couldn’t be at home and loved feeling useful. Or, send someone else to the grocery store for you if you can trust them to follow a specific list. And as noted above, we occasionally delegated the job of “family communicator” or “medical team liaison.”
  • Create a shared calendar. We used “Google calendar” to keep track of our travel plans and to know that we had sisters arriving to help out on the home front. It’s also nice to see the calendar and know that someone was on the way to provide relief to the main caregivers at home. You may also have many friends wanting to visit and you can keep track of visitors here so as to not overschedule yourselves. Apparently, as this article outlines, there are lots of shared calendar apps in addition to Google calendar.
  • Share a document with questions for the medical or hospice teams. We used “Google docs” to share a document with a long list of questions in preparation for meeting with Colleen’s hospice team and it was nice to all contribute, write down what we were worried about, and see what others wanted to know. Having your thoughts and questions organized going into a meeting or appointment can help make you feel more in control and get more out of it.
  • Keep a journal of medications and symptoms. We made a chart and wrote down the time and dose of medications, symptoms, and other tasks so that everyone present could see what any other caretaker had done. Here are several types of charts that are free to print. This made it easier to keep track of everything when others were out of the room or our minds were occupied by other thoughts and emotions. It also helped when speaking to medical and hospice workers that we were able to reference times, doses, and patterns.
  • Set aside day time for important conversations. We were often tempted to discuss plans, hold family meetings, and have other necessary conversations in the evenings after dinner, but we learned that we were usually the most tired and run down from the day at that time. Plus it could be difficult to fall asleep after having these discussions right before bedtime. We tried to implement a rule that there was “no talking” (i.e., no serious talks) after 9 PM, and to save the planning and decision-making for daylight hours whenever possible.

Some of these tips may seem like, “duh, of course,” but you’d be surprised at how easily you become overwhelmed and can’t think or make any more decisions. Hopefully these are simple tasks that will help you in your caregiving journey.

Presidential Candidates on Caregiving

Obviously, there are a lot of serious issues facing our nation this election season. As we head into the heat of the Presidential race, we thought it would interesting to look at what the candidates are saying about one issue that is important to us - family caregiving. Turns out, it’s a not a hot topic for them.

You may be thinking- there are more pressing issues such as national security at the forefront of the discussions, so why do we care about this issue? As we’ve stated before, family caregiving may affect all of us at some point, making it a topic of importance for employers and politicians. According to the AARP Executive Summary of Caregiving, there are about 43.5 million unpaid caregivers in America and the majority (85%) provide care to a family member. They report emotional and financial strain. Among the employed caregivers (not self-employed), only about half report flexible work hours or paid sick days to help with their caregiving responsibilities. Many caregivers are overwhelmed and some have to leave work in order to care for a family member. The burden of caregiving can be tremendous to the person involved, but can eventually affect the workforce. Politicians can help by adding more resources and tax breaks to help them in their time of crisis. We wanted to learn more about where the candidates stand, so we did some digging and found a few articles to help us.

Although there is a growing need, with an increasing gap in the ratio of potential family caregivers for our aging population, this Washington Post article from a year ago found that most presidential candidates in the primary season were silent on the topic, with the exception of Hillary Clinton who has called for more support for family caregivers.

More recently, in the first few minutes of the debate between Hillary Clinton and Donald Trump on September 26, as the debate transcript shows, Clinton stated: "I want us to do more to support people who are struggling to balance family and work. I’ve heard from so many of you about the difficult choices you face and the stresses that you’re under. So let’s have paid family leave, earned sick days. Let’s be sure we have affordable child care and debt-free college.” While not exactly focused on family caregivers, at least she recognizes the struggle. Trump mentioned child care once but did not address the topic.

On September 13, the National Academies of Sciences, Engineering and Medicine released a report, Families Caring for an Aging America, that outlines challenges family caregivers currently face and makes recommendations for is needed in the future. As summarized by Next Avenue in this Forbes article, the report calls on the next president’s administration to “take steps to address the health, economic and social issues facing family caregivers of older Americans.” It also urges the federal government to create a National Family Caregiver Strategy recognizing the vital role family caregivers play in the health of older Americans.

As another Forbes article explains, Hillary Clinton has more detailed plans that would affect family caregivers: “Clinton said she would work to increase Social Security benefits for people who take time off from paying jobs for family caregiving duties. She also advocates a new tax break for individuals caring for aging parents or grandparents (though not spouses). In addition, Clinton favors greatly increasing the amount the federal government spends on its Lifespan Respite Care program, which provides money to states to give family caregivers a temporary break.” These plans are indeed listed at the bottom of this page from her campaign website. 

There has been recent focus and discussion of paid family leave policies by both candidates, which is related but not quite the same as addressing the needs of family caregivers. Clinton’s plan is to provide up to 12 weeks of paid family and medical leave to care for a new child or a seriously ill family member, with at least two-thirds of current wages funded by tax reforms. The definition of “family member” is not clear, but is unlikely to include siblings, similar to existing law under the Family Medical Leave Act (FMLA). Trump’s proposal is even more restrictive with just six weeks of paid leave for mothers only and newborn child care only using existing unemployment insurance programs when employers do not provide the benefit. This article fact checks candidate’s statements on these topics, and summarizes their family leave proposals in the following chart.

http://cdn.factcheck.org/UploadedFiles/2016/09/family_leave_policies_chart1.png

http://cdn.factcheck.org/UploadedFiles/2016/09/family_leave_policies_chart1.png

Although it has not been a focus this election season so far, we are hopeful that the current conversation about paid family leave policies can be expanded to consider the broader needs of family caregivers, including paid leave and flexible work arrangements as well as other types of support and training. We also believe that the definition of family caregiver should be expanded to include siblings and others who provide unpaid care to family and friends. Otherwise, unfortunately, even if improved policies for paid leave or other support are implemented for the "typical caregiver", there are many of us that will be left in the same position and excluded from coverage under FMLA or similar laws. Two more presidential debates are coming up on October 9 and October 19, so we'll be watching to see if the candidates share any more details about their plans to support family caregivers.

Grief Triggers: Reminders Come with the Fall

As we approach the fall, a season that we love as we reminisce about the fabulous Michigan maple tree colors and the incredible apples, the season has also been tainted by the most difficult fall of all - the October when we learned that Colleen’s cancer had progressed significantly and she had run out of treatment options. Devastating, unreal, sad, heart breaking are all words that come to mind. We think of fall as the best season with unbeatable food, perfect weather, tailgating and football, beautiful foliage and mums, but it’s now accompanied by a feeling of unease.

{Jessica} I haven’t yet found a way to shake that earth shattering phone call from my mind - the one where Colleen called me to say in a shaky voice that her MRI scan was so bad that her doctors didn’t recommend further treatment. Ironically, I was in my favorite city of Boston with some of my best friends, looking forward to grand plans at my alma mater to relive our college football days. The months of planning leading up to the festivities quickly became insignificant as I listened to Colleen while sitting on a bench along Commonwealth Avenue, one of my best friends beside me with a concerned look on her face. I felt like time had stopped, the bustling city quiet, my mind blank and unable to process what this meant. What jolts me now is how she had the courage to call each of us sisters to tell us in her own way, in her own words about her painful news.

Heading into this fall, I have thought of Colleen as I constantly do, but can’t help comparing us. I am 38 as she was when she made that fateful phone call. I keep thinking of Colleen at this age and how different our lives are. She was actively treating her cancer and enrolled in a clinical trial, faced with an uncertain future, yet trying to live her life and plan ahead. I can barely comprehend what her daily thoughts were like, let alone understand what it physically feels like to take a chemotherapy agent while working and taking care of a young daughter. When I would ask her how she was feeling, she likely downplayed how exhausted and sick she felt. My summer was quite different than hers at this age as my biggest dilemma some days was what pool to go to. As I contemplated this recently, I had to make a pact to quit complaining about the children’s picky eating, cut my whining about the annoyingly congested aisles in the school supplies area at Target, and stop negative comments about the chores that didn’t get done over the weekend. I reminded myself that I am lucky to only have these minor problems to face.

{Shane} As the weather starts turning colder, the sun starts setting earlier, and even some leaves are already falling, I’m reminded of how disconcertingly beautiful the fall weather and colors were in Michigan during that grueling October. We gathered together as a family to figure out what to do next and how best to support Colleen, but we were devastated, in shock, and hardly able to grasp the reality of the situation. I remember looking out at my parent’s yard and feeling almost offended by how brightly colored and pretty the leaves looked. I spent a lot of time in Michigan that fall and winter, and the weather quickly got colder and snowier and started to match our reality. I had so much anxiety that season, not only trying to be as helpful as possible and not miss any opportunities to “be there” in the right way, but also simply juggling logistics of travel and lugging my infant daughter with me across the country. She inevitably came down with a cold on every single trip. For one month, I enrolled her in a local daycare at my niece’s school so I could help with school drop offs and get my baby out of everyone’s hair. Each fall brings reminders of one of the most difficult times of my life.

This fall, I’m looking forward to the future with a new baby on the way. It’s wonderful and exciting, but also confusing and sad that Colleen isn’t here and he won’t know her as a fabulous aunt, and that I get to grow my family and plan to watch my children grow up. My life is moving on, and it surprises me sometimes.

We have learned that grief can come in waves and can be triggered by moments in time. Grief triggers are a normal part of the grieving process, and as this article advises, simply being prepared for the possibility can be a helpful way to cope. This season gives us flashbacks to our stressful time as a family, but also reminds us of the happy parts of the season that Colleen loved. It brings up a mix of emotions - good and bad - and we are finding ways to go on.

This fall, we are committing to being thankful for our health and for the privilege of being able to plan a future. Sometimes it is unbearable to think that our sister did not have it this easy. Colleen’s last fall season was full of heartache, disappointment, anxiety, and sadness. Although the chaos of school starting and the many activities in the fall can bring on resentment about being busy, we are reminded this year that it is a gift to be able to attend all of these fun events and enjoy the beauty that fall provides. We (including ourselves) take for granted what it is like to look forward to our children’s upcoming school years, go back to school shopping, run around to kid’s soccer games and birthday parties, or simply organize a fun night out with friends.

So this fall, we are trying to remember to be grateful for having a future and to embrace the many ups and downs of grief. We are constantly learning about our grief and as this Open to Hope article states, the upsurges of grief can come out of nowhere like a bolt, ambush you, and take you by surprise. As we get to know our grief better, we also recognize that Colleen would not want us to be sad during this fantastic season. She would want us to make the most of it, watch some football, drink a pumpkin flavored coffee or beer, and maybe even tackle homemade applesauce this year.