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.

Death-iversaries: they're a thing

The past few weeks - indeed every January and early February - are some of the most difficult for our family. Just as we begin to recover from the holidays, we are hit with Colleen’s birthday and a few weeks later, the anniversary of her death. Her “death-iversary” is a significant but somber day that we want to recognize, but one that seems weird to “celebrate.” We don’t always know how to react, what to share, what to do. This annual marker coincides with cold weather and post-new year's pledges. We find ourselves with pent-up energy, organizing drawers and closets in a bit of a manic state. We literally can’t help it. Shane opens drawers and when they look messy, immediately needs to fix them, can’t look away. Jessica ordered a label maker and puts labels on everything to feel like things are in order. We get upset when members of our households don’t understand the “new system.” Our home organization compulsion takes over briefly, but it helps us to cope with the recurring sadness this time of year.

We don’t have many friends that we can commiserate with about the death of a sibling at a young age. We feel as though we are in uncharted territory. Are we supposed to be like, “hey can I leave work early to go to the nearest Irish pub because my sister died on this day?” Or “I’m having trouble focusing on anything other than the anniversary of my sister’s death, so I’m just gonna stay in bed, cool?” Or “I’m sorry your remodel is delayed, but I don’t actually care today because my sister died three years ago.” Or “I’d love to join happy hour but I have a conference call with my sisters because this is our sister’s death-iversary... it’s not weird, you’re weird!”  Yet we did begrudgingly get out of bed, we did go to work, we just sort of carried on, but everything felt off, every memory sharper. Maybe we should have just been honest and said those things in our heads, even if it would mean making others uncomfortable.

Death-iversaries are a strange, emotional day. This year, some time has gone by, but the pain is still here, leaving us unsure how to acknowledge the day. We are impressed with family and friends that continue to remember the day that Colleen died and reach out to us. How do they remember? We have a hard enough time with birthdays. These amazing super humans not only remembered a momentous day in our lives and thought to reach out to us, they actually did it with calls, texts, emails, flowers. We are in awe of them and hope that they share their secrets soon (maybe they could take over our birthday calendars, because we’re sure that they’re better at that, too).

We’re far from perfect, but if we were to copy their model-like behavior, we would reach out to friends on their difficult anniversary dates. Or maybe just whenever they are on our minds and we are thinking of them - even if it’s not a death-iversary - that, too, is really nice. We’ve heard people say that celebrating a deceased loved one’s birthday is a more positive date to acknowledge, and some friends did reach out on Colleen’s birthday, a date they may have already been tracking, as opposed to the date of her death. From our perspective, either one is a day that our minds are especially on Colleen, so either date is a good time to hear from friends.

We tried to come up with some things to say next time we remember to be a good friend. We probably can’t avoid our sarcastic humor, so we might say things like:

  • Today must be hard for you, but we could get cheese and drinks to make it feel better?
  • I’m always available if you want to talk about today or even if you need to swear and yell.
  • I’m sorry this day is crappy for you, but do you want bacon?
  • I’m here for you if you want to drink a bottle of wine.
  • We probably would NOT say that heaven gained an angel or that Colleen is looking down on us because that always makes us think that we want her with us instead of up there or wonder what she’s been saying behind our backs, like what's she saying? what did you hear?
  • Or if we decide to take a more tactful route, we’d say something simple, like “thinking of you” or “sending hugs.”
  • Or we might say something simple with a little humor. On Colleen’s birthday, one friend said, “Happy birthday to one hell of a big sister.” It summed up our sister perfectly and made us smile.
unnamed.jpg

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.

Help For Funeral Planning, Continued

Funeral planning, really? We know... We talk about the most uplifting topics, don’t we? But, as we've written about before, often it is hard to know what to say or do when your friend or family member is going through the difficult process of planning a funeral. What about when you're the one who needs to make all those stressful decisions?

Robyn Lewis summed it up perfectly- “It is often such a short space of time that you have to make many decisions, on everything from caskets and grave stones to hymns and flowers, especially when you don’t feel fully up to that level of responsibility.” She wrote an article for AK Lander to shed light on the stressful event of getting ready for a funeral. She asked for our opinions and added some of our thoughts, too. Reading her advice directed to the funeral plannees (can we coin that term?) may also give friends and family ideas for how they can provide support and help to those going through it. We can't expect them to do it all, even if they try to. 

We hope for comfort to funeral-plannees and super-friend-powers to those that aim to support them. Share how you have helped a friend during this difficult time in the comments section below. 

Grief Time Is Slow, Then Fast, and Maybe Irrelevant

Our sister died 2 years and 4 months ago. Sometimes this time that has passed seems incredibly slow with little progress. We still find ourselves grieving while on a run - our mind wanders to Colleen, we suddenly just really need to talk to her, the grief feels raw, and we are AGAIN crying while exercising. We’ve been known to cry on treadmills, we just didn’t think that crying while working out would still go on and on. We thought that phase was a thing of the past, but it still happens on occassion.

Photo Credit: https://whatsyourgrief.com/64-quotes-about-grief/

Photo Credit: https://whatsyourgrief.com/64-quotes-about-grief/

Yet, it can also feel that a lifetime has passed since Colleen was sick. It is sometimes hard to remember the time before that in detail, perhaps because so much stress and sadness intervened. Guest blogger Kate wrote about how the second year is really hard when you let your guard down and reality sets in. Unfortunately, she is very correct.

Recently, we went on a family vacation and it was wonderful to be together, but we couldn’t escape thinking about how Colleen was supposed to be there. Our family dynamics are a bit different now. She would have had strong opinions about the planned activities, lots to say about the families in matching T-shirts and babies dressed as princesses. We wonder if she would have ridden on the roller coasters even though she used to hate them, just to be brave for the children in the family. She would have kept us laughing and positive in the heat and crowds, and known exactly what to do about the family photos. We will never get used to her absence, but we didn’t expect to go on vacation and feel her loss so palpably.

There are days and moments that continue to be a struggle, especially when we want Colleen involved in all of the events of our lives. Birthdays are particularly tricky, maybe because they mark the passage of time. Whether it’s her birthday, our birthdays, her daughter’s birthday, our childrens’ birthdays, we just wish Colleen was here for them and other events. It feels strange that our lives continue, we get older, and we watch our children growing up when Colleen can't do any of that. Time marches on without her.

Perhaps time is irrelevant when talking about grief. Time is moving both slow and fast. Colleen’s death doesn’t feel that long ago, but it feels like decades since we have been able to be with her. Grief sneaks up on us, stops us in our tracks, and takes us right back in time. We didn't predict that we'd still feel this raw at this point. Somehow we keep going, even if we just need to cry while running and hyperventilate for a little while, then move on. Colleen was the strong one, and it’s hard to keep up the strength when she isn’t here. But we are becoming tougher, some days.

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.

How to Be a Helpful Friend to Caregivers and Grievers

Unfortunately, we have become all too familiar with the struggles of caregiving and grieving, and have been contacted several times for ideas about how to help a family member, friend, or colleague struggling with a variety of difficult situations - a new caregiving role, a terminal diagnosis, a death of a loved one. It feels like these tragedies are happening all too often, even to young adults. We don’t consider ourselves the experts, but we try our best to provide useful tips and ideas. 

First, know that simple actions of support and concern are often enough.  We have previously talked about comforting products and how to help a friend in grief  as well as related topics in other specific posts noted below. Here, we came up with additional ideas - that anyone can do - tailored to certain situations. We reflected upon our own experience, but also received great tips from family, friends, and experts - all listed below!

For those in a new caregiving role:

  • Consider how you might ease your friend's burden in other areas of life besides their new caregiving role: Do they have a pet you can walk or check in on? Can you drive their kids to after-school activities? As our Mom suggested, “Offer to do a specific errand- like pick up groceries, pick up kids, make an airport run-sent by text. No calls!"
  • An easy way is to help with meals. Perhaps a group can organize meals on a schedule or invite others to sign up via mealtrain. Or it can be as simple as baking some cookies and dropping them on the porch.
  • But it may be that you are not local and want to do something from afar. Simple ideas are a funny card from our favorite Emily McDowell, or one of her bravery pins, a small care package of their favorite things like coffee, chocolate, lotion.
  •  We heard from Feylyn Lewis, M.A., NCC; University of Birmingham, who is an expert in young adult caregiving and recalls the most important things that help her in caring for her mother:

  1. Grace. Someone giving me grace to be imperfect and to simply 'not be myself'.
  2. Realness. I appreciate when a friend is authentic, as that allows me to feel free to be authentic too. It's so freeing to live from a place of honesty.
  3. A perfectly timed encouraging word or Bible verse. Spoken with kind heart, the gentlest words can truly help transform my perspective.
  • Another nice idea is to send a journal for your friend to bring to appointments and to write down questions.
  • Stress relief gifts include: soothing lotion, aromatherapy, adult coloring books.
  • A new company, Wellthy, will provide you with a care coordinator. 
  • This post has ideas for helping with communication and organization, but here are a few highlights: Help to keep family and friends updated with a website such as Caring Bridge.  Or setup a shared calendar for appointments, visitors, and other important obligations such as a Google calendar.

For other grief related situations:

  • Dr. Gloria Horsley, a grief expert, bereaved parent and founder of Open to Hope along with her daughter Dr. Heidi Horsley, shares her wisdom and recommends her website www.opentohope.com. She states, "Lean on our hope until you find your own." Helpful things that were provided to Gloria after the death of her son were: 
  1. Sitting with us and reading a book while we ate our first meal
  2. Getting a dog
  3. Having my boss at the nursing school assign a friend to stay with me the first week back to work.
  • Do something in honor of the deceased. Run a race for them or donate to a cause that they supported.
  • Write down a funny memory of the deceased and send it to their family members.
  • April Koontz, a sibling griever, caregiver, and founder of Daughters Unite, remembers a kind gesture from a friend. "The day following my brother’s sudden death – I looked out my front door and saw my neighbor mowing my lawn. I broke down in tears. She knew how important it was for me to have my lawn looking good and took it upon herself to mow it without asking."
  • Drop off brownies and a six pack of beer. It doesn’t have to be a full course meal, just a way to show that you are thinking of the person. (Thanks, Mom)
  • Friend and guest blogger, Lindsay, opens up about what helped her after the loss of her sister: "With respect to people who were primarily my friends (i.e. not necessarily family friends or people who were also close to my parents or sister), asking how I was doing in particular and not just how things were going in general. I imagine this would be especially true in a caregiving situation, as it made me feel supported at a time when I sometimes felt like it was my job to support other people or to hold it together." She adds, "Picking up when I didn't want to talk about it and distracting me by talking about other things and treating me like a normal person." 

For various difficult times that are probably pertinent to both cases involving the stress of caregiving or grief:

  • One thing April would recommend is, "Respite. Just figure out when you can give an hour or more and call and make arrangements to do it. Don’t ask ‘what can I do?' or say, ‘call me if you need anything’."
  • If they have a sense of humor, send funny cards on a regular basis. Send cartoons.
  • Don’t unicorns make everyone feel better? There’s this gift idea.
  • They may not be sleeping well, so how about caffeine and a fun, new mug
  • If you are curious about how to talk to children about illness and grief, this post may be helpful  And this book which was recommended in that post, How to Help Children Through a Parent’s Serious Illness .
  • People don’t seem to make “mix tapes” anymore, but you could send them a playlist of soothing music or music that may help them cry and grieve. You could also send an iTunes gift card for them to download their own choice of entertainment.
  • Feylyn Lewis again shares sage advice for one simple thing that a friend can do: "Understand when asking how I'm doing, I may immediately respond 'Okay, just fine.' because I don't want to burden my friends with my heavy emotions. Don't be afraid to ask again, and/or help create a space where it's easier to share, i.e., going for a walk, sitting quietly, etc."
  • Our Resources page has some other ideas too.

What other useful or creative tips do you have? Let us know what you did that was helpful to a friend.

March 30, 2017 Caregiving and Grief News Roundup

In this Caregiving and Grief News Roundup, we share several touching personal stories we came across in the news recently that resonated with us, as well as a few positive stories from around the country.

First, this beautiful story in the Washington Post emphasizes the importance of simply being there with a loved one at the end of their life. We found ourselves nodding and tearing up reading, as Jennifer Palmieri writes: “Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters.”

This real and emotional story describes a cancer patient being disappointed in how she was treated as a person in the hospital. Sue Robbins makes what seems like a reasonable request: “Please treat me as well as you are treating my tumour."

Check out this short video from PBS News Hour's "Brief But Spectacular" series with one our favorites, Kelly Corrigan, best selling author and podcast host. She briefly talks of her own experience with breast cancer and learning that her dad was diagnosed with terminal cancer. We relate to her stating that she put her energy into writing.

Of course, one may expect to become a caregiver later in life, perhaps for elderly parents, but when caregiving comes in your 30s and 40s, it is unexpected and stressful. This NY Times article describes experiences from different “off time” caregivers who face the difficulties of juggling careers, child-rearing, and missing out on fun activities.

Daughters Unite shares the story of a “Millennial Caregiver”, Feylyn Lewis. They are a unique population in need of more awareness and support as their caregiving responsibilities affect their ability to attend college, become employed, and engage in peer relationships.

In a few other uplifting news stories from around the country:

  • In Ohio last week, the state legislature passed the Ohio Caregiving Act, which ensures hospital patients' designated family caregivers are offered instruction in providing needed care at home.
  • From Indianapolis comes a new app, Patch Health, designed to help multiple caregivers for a loved one coordinate care. Brilliant!
  • Earlier this month in Seattle, radio station KEXP teamed up with the Seattle Cancer Care Alliance Proton Therapy Center to present “Music Heals,” a day long program of stories and music with the power to lift our spirits and heal our souls in the face of cancer. We love this concept! We've featured music on our Resources page and stories from guests about the power of music to heal and a survivor’s playlist.

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.

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.

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.

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.