Telling Our Story: Is This OK?

There are many moments where we are hit with the overwhelming absence of our sister, Colleen. This summer was full of new experiences and big events but, still, the recurring pangs of her absence. It just keeps happening, you guys! In the past several months, we have cried in front of a large audience (more than once) and spoken our truth about our sister dying to strangers and friends alike.

We cried during our presentation about sibling caregivers, which we knew was a strong possibility but still took us by surprise. We thought that we could be like robots and simply share our reflections on caregiving, but when we talked about our sister and our experience as sibling caregivers, our feelings got the best of us and we did get choked up. Although we shed a few tears, we were able to keep speaking and we made it through our planned remarks.

More recently, we once again found ourselves in front of a large audience talking about our sister, Colleen, while giving a toast at our younger sister’s wedding. We wanted to acknowledge our oldest sister who was absent from this monumental family occasion. Although we had practiced the speech a few times, it was even more difficult to get the words out, perhaps because we were speaking in front of friends and family who shared our sense of loss.

new-girl-zooey-deschanel-ugly-crying.jpg

Although we can’t help but worry how we appeared during these events - like, was it really bad ugly crying or was it respectable? - we also have bigger questions about how to talk about and share our experience with others - like, will we be known as the girls that always cry about their sister and are sad? Yet, for the most part (we think?) when we opened up, our comments were well received. At the conference, an audience member told us to remember that it is our story and no one can change that or take it away. That remark has stuck with us. We realized that we can share our story even though it is sad because well, those are the facts. We can’t make up a different story, the story is what it is. And as our aunt told us after our wedding toast, we had to address the elephant in the room - Colleen - because she was on everyone’s minds.

Since these experiences, we have been learning to push aside the voice inside that questions whether we should be talking about it. Am I making others uncomfortable? Am I being overly dramatic if I do talk about it? Am I being weird when I don't talk about it?

These instances of showing emotion and being honest about what happened felt like such positive steps that lately we have been brave enough to talk about Colleen and our loss in everyday life! Regardless of the reaction we get, we have realized that it doesn’t help us in our grief to avoid the topic or try to cover it up, and why should we have to? It hasn’t gone off without a hitch, though... We often wonder, did I just drop a big bummer in the conversation? Was that ok?

Speak-the-Truth.png

On the day of our sister’s wedding, a wedding vendor who we had just met was asking about our family and we were explaining each of our “numbers” or birth order. She paused and said, “oh, well, who is the oldest? Was she unable to be here?” It felt like a punch to the gut. We also felt badly for her, who innocently wandered into this conversation. But without hesitation, we replied that our oldest sister died a few years ago. She was very kind about it and it didn’t end up feeling awkward. It was a freeing feeling to just be honest and not worry how it would sound or make others feel.

In the past few months, we have told coworkers and new friends about losing our sister for the first time. Sometimes the topic comes up when you’re getting to know someone, and questions about our family were more frequent with a family wedding this year. New friends or colleagues would ask: “So, there are FOUR girls in your family?” And we’d be forced to explain: “Well, actually, five, but our oldest sister died…” It was interesting to see that when we told the sad truth, some were very sensitive around the subject and others just passed over it, as if we said that our hamster had died. It is shocking and maddening when the latter happens - like, you have no further questions on the subject? Weird. And a few times, a new acquaintance or coworker was dealing with a loss and we had to navigate whether to bring up our experience or not - like, is it helpful to explain that we might know something about what they are going through (although we know that no two experiences in grief are the same), or does it just bring the attention back to ourselves?

We aren’t sure where these self-conscious feelings come from and have been trying to figure it out, likely a combination of others’ uncomfortable feelings surrounding death and grief and our own nerves. Do people make us feel like we shouldn’t tell the truth? Or are we nervous about showing emotion in front of other people? Are we supposed to just keep it to ourselves, like that was “the past”? Do we feel weird because others are so awkward? (probably yes) Are we still scarred by the grief police?

Of course there are situations where it may be best to keep to yourself, but we are trying to be more forthcoming. Maybe if we can show strength in speaking about our experience, it will make others more comfortable. We also don’t want to worry constantly about others and how THEY feel. We will probably still struggle at times to share our experience, and some may judge our grief, but it doesn’t change what happened. It is our story.

Our Relationship Status With Fall: It's Complicated

We have talked about how the fall season triggers our grief before. We still consider it a wonderful season, but moments of sadness and anger slip in. We feel two-faced in our relationship with fall. It’s great and terrible. Nothing makes us happier than walking into Trader Joe's and finding that the pumpkin Danish Kringle has arrived! We love fall weather, fall colors, fall decorations. But we also get angry thinking about how our sister got so sick during this beautiful time.

FullSizeRender (10).jpg

And so now the old anger phase is flaring up again… knowing that our sister comes up in conversation less and less often, giving us fewer chances to talk about her and share memories… realizing that a new friend didn’t know us when our sister died when the awkward moment comes to talk about our family, not knowing how to answer a question about our siblings - do we say “I’m one of five girls”? Then do we explain? We worry no one wants to hear about such a “bummer” as someone once called it - our sister dying, a “bummer”.

The anger phase then leads to the “no one understands us” phase. If only they understood “The Compound” better they would get it. Should we show them all of the funny messages that we get from sisters on a daily basis so that they “get it”?

The anger phase comes again when watching fall TV and the return of old favorites that remind us of our sister and new shows that annoyed us - no, we haven’t gotten over it. And that leads us to revisit our swearing phase…..

We feel angry out of a sense of unfairness and a place of frustration. Like why did this have to happen? Why was our favorite season tainted by such heartache? And can’t we just talk to our sister already - it's been way too long, and only she has some of the answers. There are so many reminders of Colleen during the fall, too. College football, apple season, fall fashions, family birthdays and anniversaries. Some of the best parts of fall just aren’t the same without her.

Our grief is a cycle that comes and goes. There is no way of knowing when we will get through a phase or go back into one. In the meantime, maybe the pumpkin kringle will help.

The Struggle to Believe

We are happy to introduce this week's guest blogger and friend, Kate Bales, who shares her story of sibling loss. Like our family, Kate enjoyed a special and close bond with her sisters. She was the oldest of three girls and lost her youngest sister, Beth. Sadly, Beth was only 20 years old. Kate shares a touching story of coming to terms with such a significant loss and finding comfort in signs.  

It’s hard to believe my sister would have turned 35 this month. It’s also hard to believe that she has been gone for fourteen years. However, the hardest thing I have to believe is that my sister is not coming back.

I still remember small instances of my disbelief on the day I found out. I was in graduate school. At that time, my roommate was the youngest sibling of old family friends. She was a special friend to my sister, Beth, when they were little. My roommate’s mom had been battling cancer for a long time and I knew her end was near. So when I returned to the apartment from an errand and she greeted me at the door with tears, I didn’t understand why she told me to call my parents. I remember my heart sinking for her and thinking it was odd that she would want me to call my parents for them to tell me that her mother had passed away. I went back to my room and dialed my mom’s phone number. I could hear the hushed, urgency to my mom’s voice that she always uses when she has bad news. She told me they were in the car with my aunt and uncle who were driving them down to Milledgeville where my youngest sister, Beth, had been killed in a car accident. 

They were headed to the hospital to identify her body and even though she had just said Beth was dead, the mention of a hospital gave me hope. I asked if they still might be able to fix her.  I didn’t want to believe that she was really gone and not coming back. In the foggy aftermath I learned that Beth had been driving back to her college apartment after hanging out with friends when her car was t-boned by a driver who ran a red light.

For a while after her death, it was easy to pretend that she was still away at school. Even though I thought about her absence everyday, I didn’t have to feel it because I was used to being out on my own and away from my family. I think her instant death also made it easier to believe she was still around. I didn’t have the long days of agony and then hope and then agony that I imagine is felt by those who lose a loved one to sickness. My sister was here one day and gone the next. 

It wasn’t until the second Christmas without Beth that her absence really hit me like a kick in the gut. Christmas was a time that we were supposed to be together. I had prepared myself for the first Christmas but when the second came around I had let some of my guard down. I remember sitting in church with my parents and my middle sister, Ashley (I am the oldest of three girls). I noticed that we didn’t take up as much room in the pew. The visual reminder that we were now a family of four made me cry. 

It can be very tough to think about Beth. However, there are many times that I can think about my little sister and smile. Beth was a superstar! She was funny, dramatic, loud, and enormously loving. She was the only person I know that got a parking ticket while parked to pay for a parking ticket. She didn’t pause for a moment before going down to the local nursing home to take her sorority’s “adopted grandma” out on a date. She would throw the sweet lady’s walker in her car and whisk her off to get ice cream. She could talk to a stranger and wasn’t afraid to do what she loved. I admired and benefited from this quality in Beth. I often asked her for help in social situations. Once when I was feeling very shy about selling school, fundraising calendars, Beth took me out, knocked on doors and sold all my calendars!

I still ask for Beth’s help. When I feel sad, anxious or fearful, I will talk to her. She may not be able to physically answer me but I look for comfort from her in songs that come on the radio, glimpses of butterflies, etc. An example of the comfort from butterflies came at my grandfather’s funeral. My grandfather was being buried at the same cemetery that Beth had been buried at years before. After his funeral service, I walked over to Beth’s grave sight. On my walk, two white butterflies fluttered close by. I had once heard a saying that butterflies are angels in disguise. Even though it is just a sweet saying, seeing those two butterflies brought me comfort. It felt as if Beth was telling me that she and my grandfather were still with me. So even if I have to believe that Beth is not coming back, I choose to believe that she is still near.

The Story of the Past Year

‘Tis the season once again - time to celebrate our Irish heritage! We are reminded of our St. Patrick’s Day post last year, when we launched this website. We shared one of our favorite quotes:

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing

We are proud to announce that we are celebrating our 1 year anniversary of this website and blog! Although it has been a time consuming and sometimes difficult road, it has been incredibly rewarding. We are impressed with the real writers of the world who do this regularly and our respect for them has only grown. Just when we had moments of thinking that we couldn’t keep this up, a great idea would strike us in the middle of the night and we felt inspired again. We thank you for the support and as always, we thank our role model and big sister, Colleen, for constantly motivating us to work harder and to make an impact on the world just as she did.

Below is a recap of the year in images and quotes.

keep-calm-and-be-sisters-114.jpg
"Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them." - Our Motivation Behind Losing a Puzzle Piece
"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?" - Simplify and Downsize: Surviving the Holidays Without the Same Cheer
grumpycatmeme.jpg
"#stoptalkingaboutyoursickcat #doyouwanttoaskaboutme #publiccryingismythingnow" - Sister Humor About Our Grief
Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

"After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings."- Maggie Gets It: A Place Like Home

We have learned a great deal, not just by examining our own feelings and searching for insight, but also from our fabulous guest bloggers. We heard a mother’s perspective on sibling caregivers, a patient talk about grief and how acceptance is the hardest stage, and various views on sibling loss from a Marine's family dealing with his sudden death and how music heals, from a sister accepting and reflecting on the whole sibling relationship, from a group of siblings who supported each other through loss, from a sibling dealing with an unexpected loss and realizing life will never be the same, and the lessons a sibling learned through death. We received advice on how to talk to children about serious illness, how to keep going through grief, how Colleen was essential in her friend’s life, and other topics such as ambiguous loss, survivorship, and architecture's role in caring for cancer patients. We are so grateful for their wisdom.

Check out some highlights of these guest posts through their beautiful images: (Click on the image to link back to the blog post.)

"[Colleen's sisters] were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving." - A Mother's View of Sibling Caregivers

It has been quite a journey and we can't thank you enough for your support. What we have gained from this website and the many touching stories is difficult to put into words. Every day we are reminded of Colleen and the pain of having to go on with life without her does not go away, but this website has given us purpose and for that, we are thankful.

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.

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.

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.

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.

Living with Acceptance

We have the next installment of our series from a wonderful family that lost a hero, a Special Operations Marine, and a brother, cousin and friend. We are proud to introduce Tyler, the brother of Captain Stanford H. Shaw III, who discusses sibling loss in a genuine way and allows us in on his experience of an acute loss, subsequent grief, and journey towards acceptance.

This is not a happy post. I just want to get that out of the way. Yes, despite the crushing loss of my brother, I am a genuinely happy person, but sometimes the oppressive weight of his absence brings me, metaphorically, to my knees. And that’s ok.

So that’s the perspective from which I write today—from down on the ground, gasping for breath; from my pulled-over car as the tears come so heavily that my windshield wiper eyelids can’t blink them away fast enough; from that broken person who sees the first post about “National Sibling Day,” and knows to avoid social media for 48 hours, because even after 24, Newsfeed will catch you up on everything you’ve missed, and it’s just too painful to see all your friends smiling next to their still-living siblings. And that’s ok.

Today I write, not for hope or encouragement, but for permission.  Permission to feel whatever you need to feel, without apologies of excuses. My name is Tyler. I’m 30 years old, I work in elementary special education, and for 29 years, I had an awesome older brother—a Special Operations Marine, Captain Stanford H Shaw III. To me, he was my big brother, Ford.  Ford died on March 10, 2015, when his helicopter went down in a night training mission.  He was killed alongside six fellow Marines and four Army National Guardsmen, in what was a highly publicized crash.

Tyler's dear brother, Ford

Tyler's dear brother, Ford

We heard the news on the internet, but names were being withheld. My mother called every person she could, trying to find out if Ford was on that helicopter. I went to work, because I couldn’t sit around and worry. Worry changes nothing and besides, I had students who depend on me. Take care of those you lead. Complete the mission, right? I told my coworkers I needed to have my phone on that day. My mother called at 10am to tell me it was confirmed that Ford was on the helicopter, but it hadn’t been located (it crashed in water). It was officially still a “search and rescue.”

All my cousins, aunts, uncles, etc, were at my house. I stayed at work because…what else was I going to do? Sit, wait, worry?  My students have behavior disabilities.  I can solve their problems. My problem had no solution. 

Everyone was hopeful they would find seven Marines treading water. Not me. I’ve always been a pragmatist. The second it was confirmed that Ford was on-board I started mourning my brother. People told me to hope. I wanted to strangle them.  Don’t. TELL.  Me.  How. To. FEEL!

At noon, my mother called again. “The Marines are here. You’re a designated next of kin. They have to inform you in person that Ford is missing. You can come here, or they’ll come see you at work.” Well, that was out of the question. Tell me in front of my kindergarteners and first graders that my brother was likely just killed? Absolutely not. Shield them from the desperation and anguish of death. Protect their innocence. They come first. I left work.

That was the last time I was a whole person.

They told me Ford was missing. Eventually, they left. My extended family smothered us with messages of hope. I remember saying, “We have to start accepting the fact that Ford isn’t coming home. My brother is dead.” “Don’t say that!  He’s a strong swimmer. If anyone has a chance of surviving, he does,” someone countermanded. I deadpanned, “We need to stop clinging to a false hope.  I’m mourning my brother.” I quickly learned that some people have a really big problem if you don’t mourn the way they expect you to. To hell with them.

The Marines returned at 1am to deliver the confirmation that Ford was killed. By this time, his fiancé, also a Marine, had arrived from North Carolina where two weeks before, she had moved in with Ford for the first time in their 10-year relationship, as they were finally stationed together. We all knew he was dead, but hearing official word gave us the right to start properly mourning. Everyone else could back off with their damnable false hope. That’s when I started learning about myself.

I am an extremely social person. Truly extroverted. I draw my energy from crowds.  I’m “on” as long as there are two or more people in the room. I pack every day with work and social obligations. It’s trite to say that a rolling stone gathers no moss, but I’m rubbed smooth by constant rolling. If my plans are canceled, I’ve replaced them with new ones before texting, “No worries.” I know what I’m doing every day of the month, and I book my next get-together or catch-up six to eight weeks out. I have always been this way, and my friends and acquaintances are constantly in awe of how much I’m able to pack into non-work hours.

Then my brother died. I wanted everyone OUT. The irony of this, of course, is that my house immediately became Central Command. Family kept pouring in; friends from everywhere came out of the woodwork; military personnel constantly in and out with sensitive information; family members sometimes had to be told, “You need to leave.  This is a private meeting.”  Neighbors with food; family with food; coworkers with food. Gift cards, fruit baskets, flower arrangements, delivery men, news vans (the WORST). For the next ten days, as we fought to recover Ford’s remains and arrange services, my house was a drop-kicked hornets nest, and all I wanted to do was stand up and scream, “GET OUT! GET THE F*** OUT OF MY HOUSE! GO!  LEAVE!  TAKE YOUR S*** AND GO! NOW!!!” I wanted every well-intentioned but overbearing relation out. I was shocked at myself—the only people I wanted around were three Marines who knew Ford best, and his fiancé. They were the only comfort, these three Marines whom I hardly knew, and my supposed-to-be sister-in-law.

The beautiful Shaw Family

The beautiful Shaw Family

Of course, what I needed didn’t matter. Everyone else had his or her own needs, and each person’s needs were paramount. I confided in my mother, how I couldn’t  stand the constant crowd, and she wisely stated what I knew but couldn’t verbalize: “I know. But they need to be here. For themselves.”  Well forget what I need. I’m just his brother. I only just lost the one person on the planet that’s known me through every childhood experience that shaped the man I’ve become. The one person I could always rely on to know who I am, and to be there for my entire life, as we started our own families. I only lost half of myself, but please, everyone, tell me how I can entertain you, instead of crafting a eulogy for the brother I will never have again. I finished that eulogy the morning of his wake, when my parents and his fiancé drove to Delaware under police escort, to bring Ford home. I had to miss that. Because I was just his brother.  And everyone else had needs.

Ford’s services were incredible. The 500-something people who attended, the community that lined the streets, the Marines, the friends, the family—I will never forget the tragic beauty of it all. But then I had to return to my life.

I returned to work, and my students were so happy to see me after more than a week of being away. Their parents had told them what happened, despite my wanting to shield them from such tragedy. One particularly dear-to-my-heart kindergartener gave me a picture he drew of a small, green man. Saint Patrick’s Day had passed while I was gone, so I asked, “Aw!  Is that the leprechaun that visited while I was away?” “No,” he explained, “That’s your brother, the soldier.  Do you miss him?” The lump in my throat was impossible to speak around, so I just nodded and mouthed, “Yes,” before burying my face in the closet to “find some supplies.”

That was the only time I cried that day. In the year and a half since, I have felt guilty every day because, while I still put 100% of my heart into my students and their continued success, 100% of my shriveled, withered, dying heart can only fill a bucket. It used to fill oceans. I love my job, my coworkers, and my students. I don’t think any of them see a difference, but I feel it. The crushing weight of emptiness has reduced the sun of my heart to the glimmer of a firefly, but I will continue to shine as bright as a firefly can, until I burn out.

This “not-being-enough-ness” is far worse personally, than professionally. Ask any surviving sibling what it feels like on Mother’s Day. Ford and I were two halves of a whole.  Now I’m just a half. With the exception of Ford’s birthday and death day, Mother’s and Father’s Day are now two of the worst days of the year. It is an excruciating pain to hug your mother on a day that celebrates her, and know you alone are not enough. To see in her eyes that she feels like half a mother—because half of her identity as such is gone—and to know that you will never be enough (because how could you be?), but you can’t fault her for feeling that way so you just have to love, knowing your love is inadequate, is to know the burden of a surviving sibling.

Father’s Day is no better.  Thanksgiving? Drink. Easter? Drink. Christmas?  Forget it.  Decorating the tree with all the homemade picture ornaments from when he was in preschool? Chip a chunk off my frozen heart to chill your drink. Hang a stocking that will remain empty? My heart just sank the Titanic. Holidays are always the worst after a death because they’re filled with memory and absence. I would bet anyone reading this already knows that. Holidays are about traditions, the past, and memory. That’s hard, but what about the future? What about all the lost possibilities?  What about all the things that will never be?

Ford was engaged, and after a decade with his awesome fiancé, there were definitely going to be nieces and/or nephews in my future. I’m a gay man, and while adoption and/or surrogacy are options, having a child is going to be extremely difficult for me. I love children, and I’m pretty sure I would have been an awesome uncle. For years, I sort of saw myself as the best uncle my brother’s kids could ask for, and that would be enough for me—I wouldn’t need children of my own, because I would be there for his. That’s off the table now. My parents want grandchildren, and I’m their only hope for that, now. A hope that, as I steamroll into my thirties, I realize may never become a reality. I’m single, and with one four-month exception, I’ve been single for 30 years. I will not have children without a husband. I want to provide my children with the kind of home and family that has been so integral to my identity.

Let’s say I do get married. Ford is my best man. So…I don’t have a best man. Do I leave a space where he should stand? Do I put a picture there? Do I forget it completely and fill his space with someone else? No one can ever fill Ford’s space. My husband will never know Ford. My past and future will never share the present. My life will forever be disconnected. How do we, as surviving siblings, bear this impossible weight?

Finally, as I look towards the future, I can’t help but think about my parents. Some day, hopefully decades from now, they will pass away, too. I will make every decision about their services alone. I will settle their estate alone. I will weep at their graves alone.  In this world, I will be alone. Yes, that is only one of endless possibilities, but it is the one I dread above all else—to be the last one standing from my nuclear family. To know that when my flame gutters out, our line is ended.

This is not a happy post. This post is about living with the weight of existence. Since Ford died, I have said, “Yes,” to everything.  I have pushed myself to new limits—I fear less, risk more. I live harder, knowing that life may not be kind, but I will push that despair away as long as possible, because in spite of everything, there is joy to be found in this world, and I will never stop looking for it. He wouldn’t want me to.

Ford’s life ended too soon, but I am here, and I will live for us both. When I see him again, I’ll have some amazing stories to tell, but in the meantime, I will live, truly and fully. I will live.

Captain H. Stanford Shaw, III

Captain H. Stanford Shaw, III