Ashley Bernier

@ashley-bernier | contributor
Ashley Bernier lives in Ontario, Canada with her husband Dan and their three children: Hartley, Hudson and Sullivan. Hartley was born with intestinal failure. The Berniers love to send time together doing their favorite activities, which include camping, gardening, hiking, watching movies, playing board games..
Ashley Bernier

We Are the Parents of Medically Complex Kids Forgotten During COVID

We are the parents of the forgotten. Our kids have complex medical issues. We hook them up to IV pumps or feed them through tubes.  They use every ounce of energy they have just to get through the day and then at night we hook them up to technology- life support to sustain them for another day. They are brilliant, hilarious, mature kids who have been through much more in their short lives than most adults. Before the COVID-19 pandemic, our lives were already complex. We worked hard every day to keep them safe, learned how to be their full-time nurses, avoided people during cold and flu season, and tried to balance normal life with specialist appointments and hospital admissions. We worried about how the years of medical trauma they’ve endured will affect their mental health and what we can do to support them. We worried about their siblings too, and about how much they have had to sacrifice over the years. When COVID-19 hit, we sprung into action. We isolated in our homes, adapted to life on Zoom, and quickly learned how to order everything from medical supplies to groceries online. We rolled with the punches, including delayed medical procedures and med shortage after med shortage. We waited with bated breath every time the world would open back up. We watched people gather and live life normally while we remained isolated inside of our homes waiting for the next wave — or the next variant. Even though many of our children are vaccinated, we still isolate. We have no idea how COVID-19 would affect our kids, so we carry on. We only leave the house for fresh air or visits with our child’s medical team that cannot be done virtually. As we watch the world open up again — while hospitals are full of patients with COVID and new variants loom on the horizon — we are terrified. We are afraid that people have given up, admitted defeat, and forgotten about the most vulnerable people in our society. We watch people protest, refuse to be vaccinated or even wear masks, and we wonder if life will ever return to our version of normal ever again. We silently care for our children and cling to the hope that one day we will feel safe enough to emerge from our bubbles. To the other parents who are in shoes like ours, the parents of the forgotten — or so it seems. I see you. I know you are not OK and I share your worries. We can all sit together in the dark until the storm passes, and we can enjoy the sun and rainbows for a while before the rain comes once more.

Ashley Bernier

Intestinal Failure, Hirschsprung's Disease: What Parents Should Know

When the surgeon came out of the OR after having been in there with our newborn son for several hours, he told us the super rare disease he had said not to worry about was now our new reality. He had confirmed the intestinal failure diagnosis with biopsies mid-surgery and had just stepped out to give us the news before returning to finish the operation. I remember looking around at our immediate family. I remember watching them all pull out their smartphones and start to Google the name of that rare condition. We all wanted more — more information, more insight as to how this happened and most of all, how we could fix it. I wish when we had all Googled his condition we had found real life stories of families’ experiences with the disease instead of medical journals. I wish we would have found something that spoke to the emotional side of this disease — the anxiety and worry and awareness of the fragility of life — that my young son would soon have. I wish it would have told us he will have dozens of surgeries and procedures over his lifetime and that because he is so rare, many of these surgeries will be innovative and new for his medical team. I wish I would have seen articles about what it’s really like to be a full-time mom and nurse to a child with a rare chronic illness. I wish I would have seen photographs of happy children laughing and playing instead of the images in my mind of our beautiful sick baby with tubes and wires all over him. I wish I could have Googled how many friends and family members we would have pull away from us over the years as they grew weary of our son’s journey. I wish I could have Googled cases as rare as our son — so rare and complex that he will be affected severely by his disease for his entire life — instead of the cases we read about being “cured” after one or two surgeries and only a few weeks of treatment. I wish I could have Googled how difficult this journey would be, about the nights I would spend in tears searching for interventions and ways to help our son, about the worry I would have and the hope I had for him to live a happy, fulfilled life. I wish we could have found articles about the effects of chronic illness on siblings, and I wish we could have known how strong their bond would be — how protective his younger brothers would be of him and how they would be the absolute best of friends. I wish we could have found articles about the advocacy role we would have to take on, about the phone calls and letters we would write, about the barriers we would need to help break for our son as he grows. I wish I could have found articles about my broken heart and how it would slowly start to heal over time, that it would never ever get easier to watch my son in pain but that I would learn to cope and appreciate each milestone big and small. I wish I would have seen articles about how incredible, strong and brilliant my son would be despite all of these hurdles and challenges that he would have to face in his lifetime. I wish I would have been able to read about how lucky we were in so many ways because we were going to learn a lifetime of lessons from our son and his siblings and have a deeper love and appreciation for them than we could have ever dreamed. I wish I would have been able to find something that would have told me that we would be OK, that he would be ok… that in spite of the lifelong battle we were beginning to fight we would come through stronger, more resilient and more in love with each other and our children than I could have ever imagined. The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Ashley Bernier

Life With a Medically Complex Child With Intestinal Failure

When my son Hartley was first diagnosed at 3 days old, I simply couldn’t believe this was happening. To be honest, I still have moments when I wonder why and how this could have happened to my sweet boy. The doctors explained how critically ill he was and how rare he was, and I had never been so scared in my entire life. I thought we were going to lose him. It was so difficult to get pregnant in the first place, and I really felt like he was all I had ever hoped for. Flash-forward almost seven years, and Hartley is a vibrant, hilarious, brilliant little boy who has been through more than many adults have in their entire lives. He has had more surgeries than I can count, hospital admissions, blood tests, ultrasounds, X-rays and has been part of several studies. When he was first diagnosed, I never would have imagined being where we are today. I never would have believed that we could survive — that he could survive all that he has. But in many ways, life is just as difficult as those first few scary days. Ashley’s son, Hartley. There is so much worry that comes with his illness. A simple cold or flu can be life-threatening and at the very least make him lose weight and strength and set him back a few weeks every time. He has to fight every day to survive, gain weight and grow. He has to endure painful procedures daily and miss more days of school than he attends. My husband and I have to take on the school board, speciality pharmacy and hospital every day. We are constantly advocating for Hartley and his medical needs. The average person has no idea what it takes just to get Hartley physically ready to attend two hours of school, or packed up and ready to spend the day at the hospital for various appointments and tests. Most days he is exhausted before we even leave the house. Despite everything, and even though most days it feels like we are running a never-ending marathon, Hartley is so worth it. He is our daily reminder of why we keep advocating and trying to bring awareness to intestinal failure. He is our strength and our hero. So to parents going through this, please remember it’s all worth it. You can push through. When you feel like your heart cannot possibly take watching your child in pain again, just look at that beautiful face and remind yourself why it’s all so worth it. I would give anything to have Hartley be happy, healthy, safe and with me forever. The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Ashley Bernier

What to Know About Our Holidays as a Special Needs Family

Before I had children, I absolutely loved the holiday season. It was simply my most favorite time of the year. I loved everything about it: holiday baking, planning parties and family dinners and searching until you find the perfect gift for the special people in your lives. Since having children, and more specifically my oldest son who has intestinal failure, while I still love December, my whole perspective about the holidays has changed. These are the top five things I wish we could tell our loved ones about our experience during the holiday season: 1. Family get-togethers are important. For our son, Hartley, seeing family and spending time together over a good meal is one of his absolute most favorite things. Hartley doesn’t get to spend a ton of time with friends and family, especially during cold and flu season because he is immunocompromised. So to our family and friends who get their flu shots and who make an effort to see us when and only when they are healthy, we can’t thank you enough. 2. We feel guilty for having to say no to holiday get-togethers. While we are trying to enjoy the holiday season, we also have to be restrictive with Hartley, and sometimes we feel guilty for having to say no. Sometimes two events happening two days in a row will just knock Hartley down so much that we have to say no to one of them — or both. We often feel like we are letting people down when we can’t commit to every function or have to tell people we can’t see them until cold and flu season is over. But ultimately, we have to do what is best for our son. 3. We totally spoil our kids during the holiday season. Because our kids spend a lot of the year living in and out of the hospital, waiting in waiting rooms at specialist appointments and waiting at home for medical supply deliveries, we spoil them rotten at Christmas. I love nothing more than the five of us being snuggled up together in our warm PJs, watching holiday movies and then waking up on Christmas day and watching our three kids’ eyes light up with delight as they open up the gifts that we have carefully and thoughtfully chosen for each of them. The truth is that they have to be so grown up and mature and patient most of the year that I love watching them be kids at Christmas time. I love that they believe in the magic of Santa Claus and can escape their sometimes harsh reality if only for a few days in December. 4. We try our best to stay out of the hospital in December. We do whatever we can to keep the kids safe over the holidays because we really prefer celebrating at home instead of a small, stuffy hospital room. We appreciate seeing our family and friends, but when you show up to an event and your child is sick or you are feeling under the weather, we are crushed. I can’t even count the number of events we have had to leave early because someone shows up sick. It’s just not fair. You might have to miss out on one event because you are sick, but for Hartley it could mean a hospital admission, months of recovery or worse. 5. We’re so lucky to have such amazing and supportive relatives. Our kids are incredibly fortunate. We are so lucky to have two sets of wonderful grandparents and aunts and uncles who make this time of year magical for our kids and for my husband and I, too. You are the most amazing people, and we are so lucky to have you in our lives — not just in December but all year round. You support us, comfort us and you always have our backs. The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Ashley Bernier

Canceling Plans as a Special Needs Parent

Before becoming a stay-at-home mom to my three boys, I was a social worker. I worked with families who had children with various special needs, and I would always hear them speak about how they lost friends and family members after the birth of their child. I never understood how you could lose support after the birth of a medically complex child. Now I know. My husband and I always joke we have become bad friends. But the truth is, we have. When you have a child who is complex, your whole world shifts, and you aren’t the same person you once were. The thought of losing your child makes you want to spend 100 percent of your time with them. My husband and I never seem to want a break. If we go out to dinner and a movie, it’s with our three kids in tow. It’s not a curse or a duty; it’s what we truly want. Plus, we both think our kids are amazing human beings, and we really do love spending time with them. It’s difficult to maintain relationships when you’re always canceling plans. We have friends we want to spend time with — and family members, too — but it doesn’t always get to actually happen. Our son, Hartley, is sick — a lot — and it’s unpredictable. Some days he will wake up looking wonderful and end up in the hospital in a serious state that same afternoon. Some days he just feels blah and really isn’t up to having visitors come over, but that can be difficult to explain. We hibernate. All winter long it seems like we have little contact with the outside world. Flu season is a scary time for us, and we really do stay inside and keep to ourselves. We have few visitors and usually spend the season trying to keep everyone healthy and avoiding cabin fever. We talk about our kids a lot. Not everyone wants to hear all about the latest medical procedure Hartley had. But that is what’s happening in our lives, and sometimes it’s the topic that is on our minds the most. Our life revolves around medical appointments, OR dates, clinic visits, weekly medical supply deliveries and special hospital events. Sometimes we just want to spend the day at home and let the kids play or relax or just decompress from a busy week. When people ask how Hartley is doing, we often don’t know what to say. Usually we try not to get into too much detail and just give a simple answer that we think will make the topic go away. We don’t want people to feel sad for us because while it’s totally unfair and horrible to watch your child suffer, this illness has also shaped who Hartley is as a person and who we are as a family. Being a parent to a medically complex child means we are in our own little world. Sometimes we forget there’ s life outside of our home. Thank you to our friends and family for being patient with us and for trying to bring us out of the bubble once in a while. To the parents of a child with complex medical needs who might feel like they’re bad friend, be honest and up front with your friends and family. Help them understand (as much as possible) about why you might be late or have to cancel plans. Surround yourself with supportive people and be kind to yourself. Sometimes balance isn’t possible. Sometimes you have to cancel for the third time in a row, and that’s OK. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Ashley Bernier

When My 6-Year-Old Shared What It's Like to Be Medically Complex

I’m not sure if this list would change depending on the day or how he was feeling, but my son Hartley (who has intestinal failure) saw me writing a piece for The Mighty and decided he wanted to write one, too. I suggested a list of 10 things that describe how he feels being medically complex. He liked that idea. This is what he dictated to me. What it’s like to be 6 and medically complex: 1. Sometimes I’m sad, bored and lonely. 2. I wish I could go to school all of the time. 3. Sometimes the things that people need to do to keep me safe also make me scared. 4. I’m just like any other kid. 5. I am afraid of germs and getting sick. 6. I love my friends and family. 7. Pretending I am a superhero makes me feel strong. 8. Life at the hospital is both fun and scary. 9. I really love my two brothers. 10. I love my life. As his mom, I felt mixed emotions hearing him speak those words. Part of me was really sad — sad he has such big, grown-up, scary feelings at such a young age. Part of me was proud — I was so happy to hear how many of the things on that list were positive. You always hope your children love their lives, feel fulfilled and feel good about themselves. When you have a child with medical issues that prevent them from doing things like any other kid, you worry about their perception of life. Most of the things Hartley listed were no surprise to me. But number three really got me. My husband and I have to do so many invasive things to keep Hartley thriving and healthy. We hook him up to IV pumps, change ostomy bags and perform weekly sterile procedures. We make food choices for him and have to limit his oral fluid intake — even on blistering hot summer days. All of these things keep him safe, but none of them are fun. When Hartley is at the hospital, his medical team have to do things to keep him safe that are also invasive and scary. As adults who’ve been doing these things to him for six years, we sometimes forget that it’s sometimes difficult, frightening and painful for Hartley to live through over and over again. One of my biggest fears has always been that he’ll remember all the terrible things, the painful procedures, and that he’ll forget all the happy moments of his childhood. And then I hear him list sweet number 10. Four little words that mean so much to me. Four little words that make my heart happy and the tears flow. He loves his life. Despite everything he has to overcome on a daily basis — despite feeling lonely, scared, wishing he could go to school every day and just feel good — he still loves his life. He makes me grateful for every moment, good and bad. I hope he knows how inspiring he is and how he keeps me going. It is such a privilege to be Mom to him and his brothers.

Ashley Bernier

What I Wish Loved Ones Knew About Life With a Child With Special Needs

You see our social media posts, or you visit with us and our three incredible children and comment about our strength, our family unity, our love for our children — but there is so much you’re missing. We try to show you our real life, the good and the bad, but the reality is that there’s so much we don’t share because, truthfully, sometimes our real life is too much to handle. Here are the top 10 things I wish we could tell our friends and family: 1. We are lonely. Our oldest son, Hartley, was born with intestinal failure. His medical complexities are rare, and there aren’t many families living a similar life. It’s difficult when we’re unable to fit in with other parents. It’s heartbreaking at times when there’s no one to vent to who will 100 percent “get it.” 2. Even when we’re home from the hospital, Hartley isn’t “all better.” Because our son’s illness will never go away, we have to accept that this is his life — our life. We bounce from crisis to crisis, and he does have frequent hospital admissions when things get rough. But the truth is, he’s never really better. When we’re sent home from the hospital, it’s because the immediate danger has passed. But we’re just in the trenches at home, managing his illness the best we can — until we inevitably can’t again and seek treatment from our medical team and end up back in the hospital. We provide Hart’s care ourselves; we don’t use home-care nursing for fear of infection or human error. Hartley is hooked up daily to 16 to 24 hours of IV fluid. He needs this to survive. It keeps his body hydrated, his kidneys and brain happy, and it helps him grow. The constant care can be exhausting, but it’s so worth it to keep him thriving. 3. We need you. We may look like we have things under control — and we do for the most part — but we still need you. We need our parents, our families, our friends. Everyone has something going on in their lives, and we know people get tired of checking in on us… especially after six long years of Hartley being sick. But we need you. We need your simple texts, emails and phone calls. They keep us going and make us feel like we’re not alone, even if only for a moment. We so appreciate the people who take time to check in regularly. 4. We worry about the worst-case scenario more than you think. We’re constantly trying to fill our children up with love and fun experiences. We want them to have happy memories (not just painful ones involving traumatic medical emergencies and hospital visits), and we never know how much time we have with our son. Most parents worry about something horrible happening to their children, but when you’re constantly trying to keep your child alive, that horrible thought is in the back of your mind every minute of every day. 5. We worry about Hartley’s siblings all the time. Deciding to have another child after our early experiences with Hart was terrifying. We always wanted a big family, and we never wanted Hart to feel like we didn’t have more children because of him. We took a leap of faith and had two more children, and we can’t imagine life without either of them. They complete the family, bring balance and laughter and are a huge support for their big brother — but we worry about them… a lot. We worry about whether they get enough attention, feel enough love and get enough of our time. We try to focus on them as much as we can, giving each of them alone time with us doing the things they love. We worry about traumatic memories of scary emergencies and them watching from the comfort of their grandmother’s arms as their parents drive away with Hartley in an ambulance. We hope having a medically complex brother helps shape them into compassionate, caring adults who cherish every day they’re given. We are so incredibly proud of how flexible they are, how loving they are and how understanding they are — even at their young ages. 6. A cold is never “just a cold” for Hartley. Cold and flu season is the most anxiety-provoking season of the year for us. We worry daily about his safety and what might happen if he were to get sick. Two years ago, we almost lost him when he contracted the flu. He lost almost two years’ worth of weight gain (gaining weight for Hartley is incredibly difficult), and the dehydration was so bad that we couldn’t manage it with his regular IV fluid, and it started to temporarily affect his brain function. 7. We feel incredibly lucky. We’ve come so close to losing Hartley (more than once) that we feel incredibly blessed and lucky to have him and our other two beautiful boys, Hudson and Sullivan. We try to enjoy every moment with them and not sweat the small stuff. We feel honored to be their parents. 8. We grieve everyday “stuff.” We’re often sad about things that come naturally to other families, milestones that are often taken for granted — like going to school, playdates, going on vacations, eating birthday cake, leaving the house in the winter… things that seem silly, but once you can’t do them with your children, you miss them and even long for them at times. 9. We break down daily. You don’t see us snuggled up on the couch crying together once the boys are in bed. While we’re always honest with the boys, we try to keep things as positive as we can and not let them know how serious things are at times, or how scared we are. We rely on each other. My husband is my best friend, and I really couldn’t imagine doing this with anyone else. He has seen me at my worst (many times) and is still there to comfort me and help me pick up the pieces. We try to debrief daily and end our day with a comforting hug or cuddle — full of love and ready to recharge for the next day. 10. We love our life. It’s easy to feel down and get overwhelmed by the enormity of Hartley’s medical needs and what it takes to keep him alive — but we really do love our life. We have the most hilarious, adorable, strong little boys, and every day we feel so thankful to call them ours. They fill our home with joy and laughter. We learn every day from them and wish we could slow time down just a little bit because we love having a full house. The Mighty is asking the following: What’s one thing you wish you could tell loved ones about your experience with disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.