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June's Mighty Month Challenge Is 'Boring' Self-Care

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When we talk about self-care, we often think of bubble baths and face masks — luxurious items that can make you feel relaxed and pampered. While taking the time to relax and treat yourself kindly is important, for those of us living with a chronic condition, mental illness or disability, the best self-care can be a bit more… boring.

“In clinical settings (i.e. working in mental health), self-care has always referred to the activities which you have to do day-to-day, including personal care such as washing, dressing and making food,” Hannah Daisy, a mental health occupational therapist and founder of #BoringSelfCare, told The Mighty. “Boring self-care is just a way of bringing back the true meaning of self-care.”

Like Daisy, who promotes wellbeing-based self-care through her series of #boringselfcare illustrations, this month’s My Mighty Month challenge focuses on not-so-luxurious self-care.

Starting June 1, we’re asking you to prioritize more basic everyday self-care activities. These tasks can include drinking enough water, making your bed, taking your prescriptions, eating a healthy meal and other activities that tend to get neglected when you feel less than yourself.

“When you experience chronic illness or mental health problems, every single task can be a chore and uses up energy,” Daisy, who lives with mental illness and endometriosis, said, adding:

People without disabilities or illness don’t have to think about how to manage the simple self-care activities, they just do it. They don’t have to spend time thinking ‘which activity can I do today, get dressed or make food?’ They don’t feel like they need to rest when after they have done something like doing the dishes or taking out the trash.

As part of this month’s challenge, pick some boring self-care tasks you’d like to accomplish on a daily, weekly and monthly basis. Daily tasks can be brushing your teeth and other personal hygiene items, taking medications and getting dressed. Weekly tasks might include going food shopping, doing your laundry or getting some exercise. Monthly tasks are items you just have to do once or a few times, such as make a doctor’s appointment or pay a bill. If you need more recommendations, check out Daisy’s Instagram for some #boringselfcare inspiration.

“[Boring self-care] is not really boring, it’s essential when you have a disability including mental health problems and neurodiversity,” Daisy explained. “I really want people to recognize the importance of doing these tasks, and that they are achievements, and that they are something kind you do for yourself.”

To help you keep track of your boring self-care tasks, we’ve created a chart for you to log your daily, weekly and monthly tasks. (You’ll need to print two copies of the chart to get you through all 30 days.) Here’s an example of what your chart might look like.

Boring Self-Care Chart

You can download a blank version of the chart here

While prioritizing and logging your self-care, it’s important to remember that missing a day or several doesn’t mean you have failed. Instead of beating yourself up, treat yourself with kindness. Like Daisy said, boring self-care is for people living with health conditions — sometimes our health gets in the way and it’s ok if you can’t get out of bed or meet your goals that day.

Want to make June a Mighty Month? Join us on Facebook at My Mighty Month, and don’t forget to tag any social media posts with #MyMightyMonth. You can also sign up for our weekly email, (select “Mighty Monthly Challenges” from the newsletter options), and we’ll send you weekly emails with boring self-care suggestions and reminders. Don’t need any reminders? That works too. Simply Download our Boring Self-Care Chart to keep track of your progress.

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Maryland Responds to Death of Man With Down Syndrome With Law Enforcement Plan

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The death of a young man with Down syndrome three years ago has resulted in a tangible change that will hopefully help protect future generations of people with disabilities in his state.

In January 2013, Robert Ethan Saylor, a 26-year-old with Down syndrome, went to see “Zero Dark Thirty” at a movie theater in Frederick, Maryland. After the movie, when Saylor refused to leave the theater because he wanted to watch it again, the theater called three off-duty Frederick County sheriff’s deputies to help remove him, The Washington Post reported. Despite warnings from Saylor’s aide that he did not like to be touched, an altercation occurred between the officers and Saylor, who ended up on the ground in handcuffs and in medical distress. A short time later, Saylor was pronounced dead at a local hospital. A grand jury investigation into the incident did not indict the officers involved.

Photo of Ethan Saylor
Ethan Saylor, courtesy of Patti Saylor

Three years later, part of Saylor’s legacy is a groundbreaking new approach to law enforcement training.

After Saylor’s death, his sister Emma Saylor started a Change.org petition that earned nearly 380,000 signatures and got the attention of the Governor of Maryland at the time, Martin O’Malley. Through executive order, O’Malley established Maryland’s Commission for Effective Community Inclusion of Individuals With Intellectual and Development Disabilities. The Commission included both people who represented law enforcement and people who represented the disability community. They were charged with developing some recommendations for the state. The Ethan Saylor Alliance was then established to implement the commission’s recommendations for increased training for members of law enforcement and other public entities.

A few things make what’s happening in Maryland unique. First, no state has a consistent, uniform training program regarding individuals with developmental disabilities offered to officers statewide. Currently, many places have some requirements and guidelines for officers to get disability-sensitivity training, but they vary widely from county to county.

Emma and Ethan Saylor, courtesy of Patti Saylor
Emma and Ethan Saylor, courtesy of Patti Saylor

“We did a lot of research early on what other models are out there when it comes to training for law enforcement and first responders,” Sara Weir, the President of the National Down Syndrome Society (NDSS), told The Mighty. “No place has this comprehensive of a platform rolled out in a statewide effort.”

Something else that makes Maryland’s program unique is the emphasis self-advocates. The training is taught by people with disabilities who are being paid for their work.

The Ethan Saylor Alliance is recruiting, training and supporting individuals with intellectual and developmental disabilities who will then teach and run the trainings with police officers and first responders.

8c5c3162-cfbc-4a79-9225-3dc44e213aad “That portrays a powerful message to everyone about partnership and [equality] in all efforts,” Joanna Pierson, the Executive Director of The Arc of Fredrick County told The Mighty.

The trainings are much more comprehensive than what is offered in many other places, according to Teri Sparks, who works at the Maryland Disability Law Center and was on the Governor’s Commission and Co-Chairs the Saylor Steering Committee.

“This isn’t disability-sensitivity training; this is actually a training for officers on how to interact and respond to individuals with disabilities,” Sparks told The Mighty. “It goes several steps beyond disability-sensitivity training.”

The trainings start with a four-hour core curriculum developed with the help of, and taught by, self-advocates with disabilities. This training has been mandatory for all incoming police officers since January 2015 and is now also mandatory in-service training to veteran officers as well. By the end of 2017, an estimated 27,700 officers statewide will have been trained.

Patti Saylor, Ethan Saylor’s mother, told The Mighty that many officers she’s met throughout this process have had little, if any, knowledge or understanding of intellectual and developmental disabilities. Standardized trainings can give officers and first responders insight into the experiences of a person with disabilities.

“Accountability is important, but training is a part of that accountability,” Patti Saylor told The Mighty via email. “It’s important to meet law enforcement where they are at when demanding accountability… Standardizing training and building relationships between the law enforcement community and the disability community are paramount for safety and accountability.”

No piece of legislation mandated law enforcement undergo this training; the decision to implement the new training techniques was an agreement reached through cooperation between law enforcement, the government and the disability community.

Sparks says the Alliance has already been contacted by some other states interested in implementing this.

“It is our hope that this will be a template that other states will follow to ensure the safe community inclusion of individuals with intellectual and developmental disabilities,” Sparks told The Mighty.

NDSS is currently developing a tool kit and packet with some model legislation to facilitate other states following in Maryland’s example. The tool kit will be available this spring.

“We want to make this the very best state in terms of community inclusion,” Sara Weir told The Mighty. “We want to make Maryland the model state and push the legislation and recommendations from the commission to all 50 states.”

Ethan Saylor with a guitar
Ethan Saylor, courtesy of Patti Saylor

Patti Saylor is proud of what’s happening in Maryland — how it grew out of a grassroots effort, how it is an example of the power of a collective and relentless call for change. But, she says, it’s not time to celebrate. There is still a lot of work to be done to bring this kind of change to every state in the country. For now, she finds solace in how this change has become an important part of her son’s legacy.

“While our family continues to grieve the loss of him in our daily lives, we take comfort in knowing others can be spared heartache or worse because of these efforts,” she said.

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15 People Reveal the Most Shocking Thing Someone’s Said About Their Chronic Illness

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There’s one thing many people with chronic illnesses have in common: they hear a lot of unnecessary comments. From friends, from family, from coworkers, from doctors, from complete strangers. Sometimes these statements come out of misunderstanding or naivety; other times… well, we don’t know.

To remind those with chronic illnesses that they aren’t alone in receiving such negative and uninformed comments — and to prove to the rest of the world how much we still need awareness and education around these conditions —  The Mighty asked people with chronic illnesses to reveal the most shocking thing someone has said to them about their condition.

Here’s what they told us:

1. “My friend said this to me the other day: ‘I don’t think you’re really that sick. I feel like you put yourself into the position that you make yourself sick.'” — Terrah Short

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2. “When I was 12, the head of the hematology clinic, who I had never met before, was filling in for my hematologist. She proceeded to tell me there was nothing wrong with me and that it was all in my head. When I became upset about it, she told me, ‘If you ever want a job as a doctor, you’re going to need a thicker skin.’ She had read in my chart that I wanted to be a physician one day. It still shocks me five years later.” — Keira Baccei

3. “A doctor once wouldn’t treat me because I was ‘too young and too pretty to have real medical problems’ — ‘you should be out modeling instead of at the doctor’s.'” — Kelsey Simpson

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4. “A friend told me apple cider vinegar would cure my Ehlers-Danlos syndrome, dysautonomia and gastroparesis… but only if I used it in conjunction with ‘The Secret.’” — Kassady C. Oberacker

5. “‘So what’s really going on with you, because being sick this often isn’t normal.’ — my former boss. You mean I’m sick more than normal?! News to me! Must be some ’emotional’ problem instead.” — Graciela Helen

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6. “‘Well, just think, someone out there has it a lot worse than you!’” — Amanda Teachout

7. “Someone told me they’d ‘never use a mobility aid. No matter what.’ As if my having to use one was a choice.” — Stefanie Shea

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8. “That I couldn’t be disabled because I had children. It broke my heart. I was on public transport at the time and sitting in a disabled seat. It infuriates me that some people feel they have the right to put me down and question me because my illness is invisible.” — Joanne Shearer

9. “‘If you were really sick you wouldn’t look like you’re fine.’ Oh I’m sorry, am I supposed to look like crap because I feel like crap?” — Felicia Renee

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10. “*eye roll* ‘Why are you always sick?'” — Allison Bleick

11. “My coworker once told me, ‘You’ve just got to believe you are healthy and you will feel much better and won’t have all of these problems.’ This was in response to me letting him know I would miss work for a very important doctor’s appointment. I have type 1 diabetes which has no cure, along with multiple other chronic illnesses that greatly impact my daily life.” — Ashlyn Mills

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12. “The most recent doctor appointment after he reviewed test results: ‘Oh, my goodness! You really do have a reason to be in so much pain! Wow!'” — Kaye Pullen

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13. “While seeking a second opinion for brain surgery just last week, it was suggested that perhaps my symptoms were due to ‘my age and being hormonal and heading into menopause.’ Unbelievable.” — Adrian Faraci Wise

14. “‘You have a drink from time to time, you go out, you laugh, you smile — it can’t be that bad.'” — Kerri Blakeman

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15. “‘Do you think I am your husband’s type? I mean, I know you have chronic health issues and should something happen to you, I have always wanted to date him.’” — Zach Kucera

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And if you’re wondering what you should say, read a piece from Mighty contributor Elise Graham: To Friends and Family Who Aren’t Sure What to Say to Loved Ones With Chronic Illness

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21 Gifts Special Needs Moms *Really* Want for Valentine’s Day

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Sometimes the gifts we really want can’t be bought in a store.

The Mighty teamed up with A Very Special Needs Resource to find out what moms of children with special needs would really like to receive most this Valentine’s Day. Their responses have one common theme: love.

Here’s what they had to say:

1.I would love to be able to have a conversation with my daughter. To really know what she wants, how’s she’s feeling, her hopes and dreams.

2.To have someone tell me that if something were to ever happen to me they will always be there for my son. I wouldn’t need another gift ever.

3.I would love an evening away by myself!

4.I would love to see my daughter have friends. Friends to invite over, to go to their house. To laugh and be silly with, to take photos together.

5. I want less pity and more understanding of how beautiful and special my daughter is. I want people to know I am lucky to be her mom and that her being autistic is what makes her so beautiful. I want the world to know that autism is not a tragedy, and I feel so very lucky that it has touched my life. I want acceptance of neurological differences.”

2 balloons in the sky with caption 'I want less pity and more understanding of how beautiful and special my daughter is. I want people to know I am lucky to be her mom and that her being autistic is what makes her so beautiful. I want the world to know that autism is not a tragedy, and I feel so very lucky that it has touched my life. I want acceptance of neurological differences.'

6. “[For] my daughter to be headache-free.

7. I don’t need anything for Valentine’s Day. I have my sweetheart. No chocolate or flowers could ever be better than a big hug and kiss from my boy.

Boy on moms back kissing her with caption ' No chocolate or flowers could ever be better than a big hug and kiss from my boy.'

8.A nice long relaxing bath, candles, music and maybe a glass of wine… just some me time.”

Woman holding clock on head with caption 'Just some me time.'

9.I would love to know my son will be fine when I am gone.”

Heart on wood with caption 'I would love to know my son will be fine when I'm gone.'

10. A special evening for my daughter with special needs.”

11. Just to hear my son say,  ‘I love you, Mommy. Happy Valentine’s Day.’ Candy wouldn’t hurt either.”

Red heart pattern with caption 'Just to hear my son say, 'I love you, Mommy. Happy Valentine's Day.''

12. One thing I would love is to not have to inject my daughter every single day with her medication. I know that’s impossible, but it is my wish.”

13. I would love for my daughter to get into Chatter Matters camp. It’s for nonverbal kids with physical disabilities, and their families.

14. “To be able to have an in-depth conversation with my daughter so I can understand what’s going on in her little mind.

15. Twenty-four hours to myself. Just to be me.

16. “[For] my son to have a pain-free weekend.”

17. To not have to adult for a day.”

Woman laying back relaxing with caption 'To not have to adult for a day.'

18. To see my 3-month-old baby boy smile.

19. Just to walk into my daughter’s room and know she is still alive… [For my daughter to] not have a life expectancy.”

20. “I would love someone to come by to visit.”

21.For my son to be happy.”

Boy running through leaves with caption 'For my son to be happy.'

What would you like for Valentine’s Day? Let us know in the comments below.

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6 Things I Wish I’d Known About Recovering From Emotional Trauma

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As we pass our daughter’s November birthday, we also pass the anniversary of her near-death experience. The events which followed that experience overshadowed what was supposed to be a joyous time, leaving an everlasting mark on our lives. For the last three years, the holiday season has served as a time to reflect on all the events, good and bad, which have shaped me into the parent I am today.

With each year that passes my memory of some details fade. I suppose this is one gift of time fleeting away. However, one wish remains constant and intensifies with time. I wish someone would have talked to me about recovering from emotional trauma. I wish someone would have prepared me for what lied ahead. As our daughter moved through a complicated hospital stay filled with life support equipment, convoluted diagnoses and major surgery, I knew recovery was going to be a process. What I didn’t know is that her physical recovery was just one aspect of this new course our lives were on. What I didn’t know is that our progress was going to be painstakingly slow.

Just like anyone who’s been blindsided with an intense and life-altering event, it was going to take some time for my husband and me to recover. The initial ordeal was quick, intense and traumatic. My awareness and recollections of this disaster still, at times, leave me feeling alone. While this doesn’t really surprise me, the bombshell of experiencing an identity crisis was a shock. And one question still lingers: how much longer is this recovery process going to take?

1. I was caught off guard. Of course the events we experienced were an unexpected shock. There was no time for postpartum recovery, bonding or even a moment to truly experience being a new mother again. I was caught off guard by how unprepared I was, after spending months preparing for this birth. Although I knew there was nothing I could have done to prevent this from happening, I was unexpectedly hit by self-interrogating questions of what I could have done differently. I could have never anticipated the feeling of powerlessness and loss of control I felt. Although I was in an acutely fragile state, the element that took me by surprise was my strength. I unexpectedly found the relentless, strong-willed, determined and tenacious person whom I had tucked away only a few years prior. By rediscovering the very person, whom many had considered flawed, I tapped into an unshakable strength I never knew existed within myself.  

2. I needed time for reflection. Once we arrived back home, I found myself feeling lousy. I was filled with an awful level of confusion. I was met with an unforeseen feeling of emotional numbness and felt spiritually disjointed. I quietly experienced flashbacks and uncomfortable moments of emotions flooding my mind. I didn’t expect to experience these things with such intensity. Had I known that what I was going through was normal and productive, would I have fought it so hard? By allowing myself ample time to reflect, I stumbled upon acceptance. I never predicted that by allowing myself to look back on our experiences I would one day make sense of everything and finally feel comfortable enough to stop asking the question, “Why?”

3. I had to allow myself to grieve. This life-altering event was abounding in negative experiences. But someone hit the delete button on some good moments and milestones I would’ve otherwise experienced had this not happened. This was a lot to digest, and I never realized how much time I would need to grieve. There wasn’t one person around who was ever going to give me permission to be an emotional mess. I didn’t immediately catch on to the fact that it was OK to feel and experience my emotions; the depression, fear, distress and outrage. It was only when I felt the intense longing to hear someone tell me it was OK to fall apart that I finally give myself permission to do so. It was then that I accepted my emotions and began to move through the pain of loss. It was also then that I understood this was simply another step toward finding my new normal. Although this process has, at times, presented itself as unwanted change, in its reveal it’s been a transformation in the way I understand and exist in the world. I was unaware that three years later I would still long for my postpartum time back, would still be yearning to have another chance at bonding with my infant. Despite these feelings, I’ve found new meaning in my present and future. 

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4. I would see how other people cope with crisis. I wish I could have anticipated the challenges during the first year after her surgery. As the complexity of our daughter’s care grew, so did the list of expectations of loved ones. During a time when we were struggling to hold ourselves together emotionally, pressure to meet the needs of family set in. A certain level of awkwardness existed when I needed to talk about our daughter’s complexity of care. The few people I chose to talk to offered only blank stares and emotional vacancy.  I instantly felt others’ need for me to repress and disassociate myself from the trauma. I quickly recognized this wasn’t personal but simply how some cope with crisis, and I wasn’t judging. While these coping mechanisms might be appropriate for them, they were unsuitable for me. I could have never predicted the courage it would take to turn down a preferred way of coping and wrestle this experience in my own way, even if it meant being considered an outsider and being rejected. Fair-weathers came and went and, as fate would have it, many others arrived to indulge with gentleness, compassion and grace. I’ve enjoyed many of our oldest friends rising to the occasion and providing some of the greatest support. I’ve grown to accept this as an opportunity to create new relationships with others who’ve had similar experiences.

5. I needed to take one step at a time. Sometimes I wonder how so much time has passed and how little headway I’ve made in this process, but then I look at where I was two years ago. I wish someone would have told me the first year was about survival. I wish I would have had a flowchart exhibiting step one as: “Finding Safety and Security.” I didn’t realize at the onset, but our lives were unexpectedly undergoing a drastic restructure. Everything that was once familiar to me swiftly required reevaluation and readjusting. Jobs, family, friends, routine, money, how I saw myself — like it or not, I was getting a total overhaul. I’ve come to realize this overhaul is leading me to finding a new meaning in this life. This reformation has changed me. I’ve become a better wife and mother as result of this journey. I’ve been granted a new and better understanding of who I am.  

6. I would socially reconnect when I was ready.  We arrived home exhausted– mentally, emotionally and physically enervated. I felt a craving to make up for lost time with my child who was barricaded behind a bedrail for two months. I needed to spend time looking at her fingers and toes, smelling her scent, lying with her on my bare skin. I had to devote time to establishing a new normal. I had no choice but to acknowledge and accept my need to experience the transition period I was immersed in before I could begin to truly reconnect with others. It might have taken almost three years, but when the time was right, I didn’t feel coerced or manipulated. It felt good to enjoy time with the people who have supported me.

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How I Live in a World Without

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I’m living without a complete family, without answers and without the future I imagined. My son, who was the light of my world, and my dad, who was the rock I could depend on, both passed away without me knowing why.

Living without a complete family. I thought my family was complete when my son was born two and half years ago. Two daughters and a little boy, but then that little boy died and my family was torn apart. We pulled together, rebuilt and pushed forward. It didn’t mean the pain was gone or that we were over it because no one ever gets over the loss of a child, but we managed to start living again. We prayed about our future and felt God was leading us to move closer to family. Then, four short months of living near my parents, my dad died. The results: I have two gaping holes where my son and father should be. Their absence is felt in everything, not only in my heart but in my every day life. Emotionally, the pain is incredible, sometimes debilitating, often relentless and always present. I look around the dinner table and both my son and dad are missing. Family dinners aren’t the same and never will be again. Two empty seats remain. I don’t get to see my son stuff his face full of turkey this Thanksgiving or open Christmas gifts this year. I will never see him graduate kindergarten, high school or college. My dad will never see my 5-month-old daughter turn one or see my oldest daughter get baptized. He will never get to retire and start traveling again with my mom. I feel robbed of the time we should have had with both of them. People ask how I’m doing and because it’s easier, I’ve learned to automatically say, “I’m doing OK.” Then they ask how my mom is doing, and it’s even more difficult because how do I answer for someone else when I can’t even answer for myself? There’s no true “OK” when someone dies suddenly and out of sequence. I’ve had this happen not once but twice and within a year and half of each other. Both healthy, just having check-ups weeks before: my son at 8 months, 26 days old, and my dad at 57, passed away for no known reason, leaving us with only questions.

Living without answers. I think not knowing how or why makes their deaths even more complicated. I was naïve before, believing life and death, were made up in black and white and that answers were always at the end of a medical examination or doctor’s diagnosis. But now as I live without, in a world void of many of the answers I so desperately wish I had, I realize life is really made up in a world of infinite shades of grey and often there are no answers. SIDS, by its very definition, is the ruling when a baby dies for no known reason. My dad died the same way, but there isn’t even a name for what happened to him. I know this, but making peace with it is the most difficult thing I’ve ever done. My grief counselor told me it was going to take twice as long as others to get through the bargaining part of grief because accepting the fact I will never know what happened to them compounds the process. Often, I’m flooded with questions and replays of the days when they died. I’ve tried to deal with it on my own, by pushing the questions away or distracting myself by staying busy, but I’ve come to realize the only way I can survive this viscous cycle of questioning what happened is by giving the questions to God, day by day, sometimes minute by minute. Faith is the only thing that combats fear, and when I’m overwhelmed by the fear manifested by the losses in my life, my faith is what sustains me. We must choose not to give into our fear. Fear can have two meanings: Forget Everything And Run or Face Everything And Rise. I want to rise up and change my future for the better, not despite my losses, but in honor of them.

Living without the future I imagined. I thought I knew where I was going, where my trajectory for life was taking me. I was one month away from being a self-publishing novelist and realizing a lifelong dream. I had three wonderful children, a good husband, a supportive family and a strong relationship with God. Life was what I imagined for myself. With one sentence from a doctor, “We tried everything we could, but we just couldn’t bring him back,” my future was shattered. How was I supposed to live in a world without my son, let alone plan a future without him? I found myself drifting aimlessly around, going through the motions of what was required of me but not really living. I definitely wasn’t looking towards the future because it looked bleak and empty. But ever-so-slowly, without me even noticing, the days got a little easier, I started to find myself thinking about living in a world with a new future, different from the one I imagined. It prepared me for when my dad died because I’d adjusted with the changes happening around me and I’d learned it’s possible to have an alternate future other than what you expected. “Second choice” doesn’t mean “second best.” Sometimes, it just means “different.” I believe God often uses our deepest pain as the launching pad for our greatest calling. I find myself in a place where I can help others in ways I never knew possible, and my family is much stronger than we were before.

Living without will profoundly alter a person; how it alters that person is up to them. Living without has taught me not to judge people because we really don’t know what others are going through. Everyone has a story just below the surface, from the coffee barista to the office assistant, and each of our stories, change us in different ways. My story has shaped me into a kinder, more compassionate person who doesn’t take anything for granted. As the holidays approach and I live in a season without, I’m consciously making a choice to turn outward: to give to the needy, support those who are in pain and help anyone struggling with loss. 

jennabrandt

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