Natalie Marie Brobin (formerly Bonfig)

Major events like the pandemic, the murder of George Floyd in my home state of Minnesota and the breaching of the U.S. Capitol on January 6 have caused more stress than I was already facing. My heart raced and hurt similar to what a heart attack must feel like, my body’s current reaction to stressful events. My breath shortened, my brain processing slowed down and I couldn’t focus. As parents of children with medical conditions, we face a lot of daily stress. These stressful events I have mentioned often just make it harder for us to cope. What did I do to lessen the stress reactions? First, I turned off the news and stopped looking at my phone. What a relief! I do watch the news to stay informed, but there are times that it caused me more stress than it was worth being up-to-date on what was going on in the world. Second, I started focusing on my breath by inhaling in and out very slowly to the count of six. I started with my belly first and then the rest of my torso, like filling a glass with water. I did this for a few minutes until my heart rate slowed down. I also closed my eyes to focus on my breath. Next, I went to bed early for some quiet time and to continue my deep breathing. I do this on most nights to fall asleep, and tonight it was essential. The dark, quiet room was also very helpful. If it had been earlier in the day, I may have meditated or prayed. Being in a quiet room helped quiet my busy mind. I also tried being kind to myself by letting go of all negative feelings about the current event and telling myself I was OK. “I will be OK.” “I am OK.” “I am a good person.” “I can handle this, but I need a break.” “It’s OK to take a break from the negativity in the world.” “It’s OK to take breaks.” In other words, I was kind and gentle with myself. This is what I do when life feels even more out-of-control than it does daily. Take a break from the stress if you can. Breathe. Get some quiet time. Be kind to yourself. You can do this. Slow everything down.

February is Turner Syndrome Awareness Month. Here is our story. My daughter has Turner syndrome (TS) which is a non-inheritable genetic disorder that affects one out of 2000 females. Some of the symptoms include short stature, ear problems, auto-immune disorders, and heart defects. This is what Turner syndrome has meant for our family. 1996 My 6-week-old daughter is lying unconscious on a hospital bed. The single bed dwarfs her while wires and tubes are connected to many parts of her body. Medical equipment lines the wall behind her bed measuring her heart rate, oxygen levels, pulse, urine output and more. Alarms go off constantly while the nurse dedicated to her care turns them off. A large vertical bandage on her chest covers the new incision from her open-heart surgery. Her only other piece of clothing is a diaper. Her tiny body is swollen and hard to look at. I am sitting by her bed, grief-stricken and trying to hold myself together. Family members come to support me, but they are dazed and speechless. I end up consoling them. The hours by her bedside have taken their toll; I am exhausted from worry. Eight days post-surgery, my husband and I are headed home and terrified that she is going to die on us. Three years later, she is diagnosed with Turner syndrome and we find out her heart issues and her slow growth are related. The TS diagnosis answered the question of why she wasn’t growing but brought up so many more. We begin the journey of 12-plus specialists and endless doctor’s appointments. She begins a regimen of daily growth hormone shots for the next 13 years. Early on, all three kids get a treat during Nicole’s shot to keep them all involved. She gets used to the shots fairly quickly and by 9 years old, she is giving herself the shot. Diagnosis After Diagnosis My daughter seemed to have a new health concern every year: tubes, tonsillectomy, celiac disease, enlarged aorta, Crohn’s disease and more. Because her numerous ear infections could result in hearing loss, she had tubes put in three times over her childhood. She recovered quickly from her tube surgeries as well as her tonsillectomy. When she was diagnosed with celiac disease, it changed the way our entire family ate; it took months to learn what she could and could not eat. When she was diagnosed with an enlarged aorta at 9 years old, she was heartbroken when she had to quit gymnastics. We had to monitor her sports participation after that diagnosis. Her Crohn’s diagnosis brought new symptoms, medications and doctors. Early on, I found the Turner Syndrome Society of the United States (TSSUS), a patient advocacy organization. Between TSSUS and a Yahoo group email (now Facebook Groups), I found support and friends who understood the unique challenges of raising a daughter with TS. I became an advocate for TS serving on the Board of Directors of TSSUS. We also took family vacations to the TSSUS’s Annual Education Conference to places like Disney World, Seattle and North Carolina. They had activities for siblings and sessions for the girls and parents; I hoped it helped normalize TS in our lives. Turner syndrome, you took my healthy baby, my sense of security, my trust in doctors after the first cardiologist misdiagnosed her and so much more. The endless research and education, doctor’s appointments and constant worry took me away from my husband as well as all three kids. Turner syndrome, you gave me constant fear of what was next for my daughter, the daily stress of worrying that she could die of an aortic dissection, anxiety and more. I started taking anti-anxiety medications within a few weeks of her diagnosis and later sleeping pills to still my anxious mind. 2017 Twenty-one years later, the baby is now a young woman. The scene at the hospital is eerily similar to before, the tubes, the wires, and so much medical equipment. A vertical bandage covers her new open-heart surgery scar. Once they pull out the intubation tube, her scratchy voice asks if I am OK, which makes me cry. I am dazed and speechless. I soon realize she has taken on the role of reassuring and consoling her family. She goes home just four days after her open-heart surgery, and her recovery is amazing! She has never let her health problems keep her from achieving her dreams. Two years later, she has been accepted into medical school. Turner syndrome, I hate that you took my healthy baby, but I love the amazing young woman my daughter has become — a resilient, smart, beautiful daughter who is not only surviving but thriving in medical school.

The ocean can heal. It’s true. I am living proof. On a sunny day, the ocean surface sparkles like diamonds almost blinding me. Happy sounds fill the beach, children laughing, waves crashing on the shore, and birds crying as they compete for leftover snacks. I wiggle my toes through the soft sand and feel the warm sun on my face. When I am near the beach, I can smell and taste the salty air. Ah, serenity. I moved close to the ocean in southern California in the midst of a divorce. Some days I walk on the beach and other days, I literally plop my chair down in the surf and breathe. The sound of the waves soothes my aching soul. I usually bring a book, but I mostly watch the waves or close my eyes to listen better. The sounds calm me and I can feel myself healing. Difficult thoughts will arise, but while I am near the water, those thoughts are easily put aside. My usual negative self-talk is drowned out by the sounds and sights of beach life. It is similar to what meditation does for me; I have learned to push my bleak thoughts away. I leave the beach feeling rested and calm. After years of caring for my children, including my daughter with health issues, it is transformative. What is it about the beach that is so magical? I believe it’s because all five senses are alive. 1) Hear the waves. 2) Smell the tangy air. 3) See the ocean blue. 4) Feel the sand. 5) Taste the salty air. There are also similar moments while using one of our senses such as looking at mountains, hearing the rain on a metal roof, smelling a fragrant flower, petting a kitty, or tasting a decadent chocolate cake. What is it about those moments that bring so much joy? The key is it brings us into the present moment. And when life is hard and full of worry because your child is sick, being in the moment keeps us from future tripping. I spent too much of my time worrying about the next diagnosis or surgery to enjoy many such moments along the way. Those positive sensations also can pull you out of a negative mindset. Although we have “stopped and smelled the roses” randomly in our lives, using our senses more mindfully can help us enjoy the small and big positive moments in our lives. Using our senses is also a grounding practice for anxiety, flashbacks, and unwanted memories that medical parents face almost every day. Grounding brings us back to the moment and the room we’re in when our thoughts spin out of control. I found it impossible to stop those thoughts and when I would verbalize them, my ex-husband coined it my “black-hat death spiral.” I didn’t do enough grounding while I was in the thick of raising my kids, especially my daughter with all her health issues. It is now necessary for my survival. It’s OK if the ocean works one day and something else later. I have always loved beautiful views without understanding how powerful they can be to my psyche. Do what works for you. Find something that pulls you out of your busy life and your mind for a moment or two. What calms your soul using your senses? What everyday sights, sounds, tastes, smells, and feels calm you? The morning smell of your coffee? Seeing the sun rays come into your home? Hearing your favorite song on the radio? The taste of a decadent dessert? Or touching a smooth, cool surface? Have you found your ocean?

The ocean can heal. It’s true. I am living proof. On a sunny day, the ocean surface sparkles like diamonds almost blinding me. Happy sounds fill the beach, children laughing, waves crashing on the shore, and birds crying as they compete for leftover snacks. I wiggle my toes through the soft sand and feel the warm sun on my face. When I am near the beach, I can smell and taste the salty air. Ah, serenity. I moved close to the ocean in southern California in the midst of a divorce. Some days I walk on the beach and other days, I literally plop my chair down in the surf and breathe. The sound of the waves soothes my aching soul. I usually bring a book, but I mostly watch the waves or close my eyes to listen better. The sounds calm me and I can feel myself healing. Difficult thoughts will arise, but while I am near the water, those thoughts are easily put aside. My usual negative self-talk is drowned out by the sounds and sights of beach life. It is similar to what meditation does for me; I have learned to push my bleak thoughts away. I leave the beach feeling rested and calm. After years of caring for my children, including my daughter with health issues, it is transformative. What is it about the beach that is so magical? I believe it’s because all five senses are alive. 1) Hear the waves. 2) Smell the tangy air. 3) See the ocean blue. 4) Feel the sand. 5) Taste the salty air. There are also similar moments while using one of our senses such as looking at mountains, hearing the rain on a metal roof, smelling a fragrant flower, petting a kitty, or tasting a decadent chocolate cake. What is it about those moments that bring so much joy? The key is it brings us into the present moment. And when life is hard and full of worry because your child is sick, being in the moment keeps us from future tripping. I spent too much of my time worrying about the next diagnosis or surgery to enjoy many such moments along the way. Those positive sensations also can pull you out of a negative mindset. Although we have “stopped and smelled the roses” randomly in our lives, using our senses more mindfully can help us enjoy the small and big positive moments in our lives. Using our senses is also a grounding practice for anxiety, flashbacks, and unwanted memories that medical parents face almost every day. Grounding brings us back to the moment and the room we’re in when our thoughts spin out of control. I found it impossible to stop those thoughts and when I would verbalize them, my ex-husband coined it my “black-hat death spiral.” I didn’t do enough grounding while I was in the thick of raising my kids, especially my daughter with all her health issues. It is now necessary for my survival. It’s OK if the ocean works one day and something else later. I have always loved beautiful views without understanding how powerful they can be to my psyche. Do what works for you. Find something that pulls you out of your busy life and your mind for a moment or two. What calms your soul using your senses? What everyday sights, sounds, tastes, smells, and feels calm you? The morning smell of your coffee? Seeing the sun rays come into your home? Hearing your favorite song on the radio? The taste of a decadent dessert? Or touching a smooth, cool surface? Have you found your ocean?

February is Turner Syndrome Awareness Month. Here is our story. My daughter has Turner syndrome (TS) which is a non-inheritable genetic disorder that affects one out of 2000 females. Some of the symptoms include short stature, ear problems, auto-immune disorders, and heart defects. This is what Turner syndrome has meant for our family. 1996 My 6-week-old daughter is lying unconscious on a hospital bed. The single bed dwarfs her while wires and tubes are connected to many parts of her body. Medical equipment lines the wall behind her bed measuring her heart rate, oxygen levels, pulse, urine output and more. Alarms go off constantly while the nurse dedicated to her care turns them off. A large vertical bandage on her chest covers the new incision from her open-heart surgery. Her only other piece of clothing is a diaper. Her tiny body is swollen and hard to look at. I am sitting by her bed, grief-stricken and trying to hold myself together. Family members come to support me, but they are dazed and speechless. I end up consoling them. The hours by her bedside have taken their toll; I am exhausted from worry. Eight days post-surgery, my husband and I are headed home and terrified that she is going to die on us. Three years later, she is diagnosed with Turner syndrome and we find out her heart issues and her slow growth are related. The TS diagnosis answered the question of why she wasn’t growing but brought up so many more. We begin the journey of 12-plus specialists and endless doctor’s appointments. She begins a regimen of daily growth hormone shots for the next 13 years. Early on, all three kids get a treat during Nicole’s shot to keep them all involved. She gets used to the shots fairly quickly and by 9 years old, she is giving herself the shot. Diagnosis After Diagnosis My daughter seemed to have a new health concern every year: tubes, tonsillectomy, celiac disease, enlarged aorta, Crohn’s disease and more. Because her numerous ear infections could result in hearing loss, she had tubes put in three times over her childhood. She recovered quickly from her tube surgeries as well as her tonsillectomy. When she was diagnosed with celiac disease, it changed the way our entire family ate; it took months to learn what she could and could not eat. When she was diagnosed with an enlarged aorta at 9 years old, she was heartbroken when she had to quit gymnastics. We had to monitor her sports participation after that diagnosis. Her Crohn’s diagnosis brought new symptoms, medications and doctors. Early on, I found the Turner Syndrome Society of the United States (TSSUS), a patient advocacy organization. Between TSSUS and a Yahoo group email (now Facebook Groups), I found support and friends who understood the unique challenges of raising a daughter with TS. I became an advocate for TS serving on the Board of Directors of TSSUS. We also took family vacations to the TSSUS’s Annual Education Conference to places like Disney World, Seattle and North Carolina. They had activities for siblings and sessions for the girls and parents; I hoped it helped normalize TS in our lives. Turner syndrome, you took my healthy baby, my sense of security, my trust in doctors after the first cardiologist misdiagnosed her and so much more. The endless research and education, doctor’s appointments and constant worry took me away from my husband as well as all three kids. Turner syndrome, you gave me constant fear of what was next for my daughter, the daily stress of worrying that she could die of an aortic dissection, anxiety and more. I started taking anti-anxiety medications within a few weeks of her diagnosis and later sleeping pills to still my anxious mind. 2017 Twenty-one years later, the baby is now a young woman. The scene at the hospital is eerily similar to before, the tubes, the wires, and so much medical equipment. A vertical bandage covers her new open-heart surgery scar. Once they pull out the intubation tube, her scratchy voice asks if I am OK, which makes me cry. I am dazed and speechless. I soon realize she has taken on the role of reassuring and consoling her family. She goes home just four days after her open-heart surgery, and her recovery is amazing! She has never let her health problems keep her from achieving her dreams. Two years later, she has been accepted into medical school. Turner syndrome, I hate that you took my healthy baby, but I love the amazing young woman my daughter has become — a resilient, smart, beautiful daughter who is not only surviving but thriving in medical school.

The ocean can heal. It’s true. I am living proof. On a sunny day, the ocean surface sparkles like diamonds almost blinding me. Happy sounds fill the beach, children laughing, waves crashing on the shore, and birds crying as they compete for leftover snacks. I wiggle my toes through the soft sand and feel the warm sun on my face. When I am near the beach, I can smell and taste the salty air. Ah, serenity. I moved close to the ocean in southern California in the midst of a divorce. Some days I walk on the beach and other days, I literally plop my chair down in the surf and breathe. The sound of the waves soothes my aching soul. I usually bring a book, but I mostly watch the waves or close my eyes to listen better. The sounds calm me and I can feel myself healing. Difficult thoughts will arise, but while I am near the water, those thoughts are easily put aside. My usual negative self-talk is drowned out by the sounds and sights of beach life. It is similar to what meditation does for me; I have learned to push my bleak thoughts away. I leave the beach feeling rested and calm. After years of caring for my children, including my daughter with health issues, it is transformative. What is it about the beach that is so magical? I believe it’s because all five senses are alive. 1) Hear the waves. 2) Smell the tangy air. 3) See the ocean blue. 4) Feel the sand. 5) Taste the salty air. There are also similar moments while using one of our senses such as looking at mountains, hearing the rain on a metal roof, smelling a fragrant flower, petting a kitty, or tasting a decadent chocolate cake. What is it about those moments that bring so much joy? The key is it brings us into the present moment. And when life is hard and full of worry because your child is sick, being in the moment keeps us from future tripping. I spent too much of my time worrying about the next diagnosis or surgery to enjoy many such moments along the way. Those positive sensations also can pull you out of a negative mindset. Although we have “stopped and smelled the roses” randomly in our lives, using our senses more mindfully can help us enjoy the small and big positive moments in our lives. Using our senses is also a grounding practice for anxiety, flashbacks, and unwanted memories that medical parents face almost every day. Grounding brings us back to the moment and the room we’re in when our thoughts spin out of control. I found it impossible to stop those thoughts and when I would verbalize them, my ex-husband coined it my “black-hat death spiral.” I didn’t do enough grounding while I was in the thick of raising my kids, especially my daughter with all her health issues. It is now necessary for my survival. It’s OK if the ocean works one day and something else later. I have always loved beautiful views without understanding how powerful they can be to my psyche. Do what works for you. Find something that pulls you out of your busy life and your mind for a moment or two. What calms your soul using your senses? What everyday sights, sounds, tastes, smells, and feels calm you? The morning smell of your coffee? Seeing the sun rays come into your home? Hearing your favorite song on the radio? The taste of a decadent dessert? Or touching a smooth, cool surface? Have you found your ocean?

The ocean can heal. It’s true. I am living proof. On a sunny day, the ocean surface sparkles like diamonds almost blinding me. Happy sounds fill the beach, children laughing, waves crashing on the shore, and birds crying as they compete for leftover snacks. I wiggle my toes through the soft sand and feel the warm sun on my face. When I am near the beach, I can smell and taste the salty air. Ah, serenity. I moved close to the ocean in southern California in the midst of a divorce. Some days I walk on the beach and other days, I literally plop my chair down in the surf and breathe. The sound of the waves soothes my aching soul. I usually bring a book, but I mostly watch the waves or close my eyes to listen better. The sounds calm me and I can feel myself healing. Difficult thoughts will arise, but while I am near the water, those thoughts are easily put aside. My usual negative self-talk is drowned out by the sounds and sights of beach life. It is similar to what meditation does for me; I have learned to push my bleak thoughts away. I leave the beach feeling rested and calm. After years of caring for my children, including my daughter with health issues, it is transformative. What is it about the beach that is so magical? I believe it’s because all five senses are alive. 1) Hear the waves. 2) Smell the tangy air. 3) See the ocean blue. 4) Feel the sand. 5) Taste the salty air. There are also similar moments while using one of our senses such as looking at mountains, hearing the rain on a metal roof, smelling a fragrant flower, petting a kitty, or tasting a decadent chocolate cake. What is it about those moments that bring so much joy? The key is it brings us into the present moment. And when life is hard and full of worry because your child is sick, being in the moment keeps us from future tripping. I spent too much of my time worrying about the next diagnosis or surgery to enjoy many such moments along the way. Those positive sensations also can pull you out of a negative mindset. Although we have “stopped and smelled the roses” randomly in our lives, using our senses more mindfully can help us enjoy the small and big positive moments in our lives. Using our senses is also a grounding practice for anxiety, flashbacks, and unwanted memories that medical parents face almost every day. Grounding brings us back to the moment and the room we’re in when our thoughts spin out of control. I found it impossible to stop those thoughts and when I would verbalize them, my ex-husband coined it my “black-hat death spiral.” I didn’t do enough grounding while I was in the thick of raising my kids, especially my daughter with all her health issues. It is now necessary for my survival. It’s OK if the ocean works one day and something else later. I have always loved beautiful views without understanding how powerful they can be to my psyche. Do what works for you. Find something that pulls you out of your busy life and your mind for a moment or two. What calms your soul using your senses? What everyday sights, sounds, tastes, smells, and feels calm you? The morning smell of your coffee? Seeing the sun rays come into your home? Hearing your favorite song on the radio? The taste of a decadent dessert? Or touching a smooth, cool surface? Have you found your ocean?

Everyone keeps saying that 2020 is a strange year, and it is! With the pandemic, families won’t be getting together in big numbers. As parents of kids with health, sensory, or mental health issues, the pandemic restrictions may make it easier to simplify the holidays this year, like planning at-home family days. Holidays tend to add stress to an already hectic life with a chronically ill child. But this year, you’ll be able to have a meal that fits your family’s dietary restrictions without worrying about what others may bring to the holiday dinner. Staying at home will lessen the stress of transporting your child with all the necessary medical equipment. Naptime will be painless… well, less painful! A quieter day may make it easier for those with sensory issues as well. What will be easier for your family? Here are some ideas to make it more uncomplicated for you. 1) Buy gifts year-round to save money and time. 2) The closer you get to the holidays, save in-person shopping time by ordering online and have gifts shipped to family members you usually see in person. 3) Get practical with gifts this year more than any other year with gift cards or money. 4) Delay all non-important appointments throughout the holidays. 5) Spend time with your kids at home decorating the house, the tree, singing holiday songs and more. Many holiday traditions such as going to the mall to shop or participating in other holiday traditions are not available this year. 6) Use Zoom or Skype to share the holidays with family and friends. 7) Take care of any health insurance or medicine changes before December so you’re not panicking at the end of the year. 8) Bring out the crafts and make presents with your kids. 9) Cut back on gift-giving with friends and family. Plan a safe outdoor activity when it’s warm enough or meet online. 10) Forget about the perfect Christmas and do what you can. 11) Take as many naps as you can! 12) Simplify gift-giving to your kids with the “four gift rules” with something they want, something they need, something to wear, and something to read. 13) If you’re crafty, make masks for your family and give them as gifts. 14) Make cookie dough ahead of time and freeze it. It’s easy enough to make a dozen or so freshly cookies quickly. Or just buy the pre-made dough! 15) It will be harder to ask for help from family members, so keeping it simple is a must. 16) Make a bunch of dinners ahead of time and freeze them. Better yet, make or pick up prepared meals, designed to freeze and use when you’re ready. 17) Take a break for an hour or a day for self-care to read a book, watch a movie etc. 18) If you are a hostess-type, take that much-needed break this year. 19) Use recyclable paper plates from Thanksgiving through Christmas to make cleanup easier.

Am I having problems letting go? Letting go of handling my daughter’s health issues? Yep! The term “empty nest syndrome” is used a lot as our kids move into young adulthood. When your child with lifelong health issues leaves, those emotions are compounded. I call it Empty Nest on Steroids! According to an article in Psychology Today, “People want their children to grow up and lead independent lives. Yet parents often feel lonely, sad, and filled with grief when their children depart.” I feel all that and more! My job had been to keep my daughter alive and make sure she had the best care. I had to make sure she is thriving, not merely surviving. That’s it. I should be grateful she can take on her own healthcare needs now, but I am left with so many questions about my purpose in life. What do I do now? What is my job? What do I do with my time? Where does all this knowledge and information go? I spent hours and hours researching her various health conditions. I educated her cardiologist about her heart defects and her genetic disorder. The orthodontist put on her braces just before her growth plates closed as I asked. The endocrinologist took my lead when it came to combining growth hormones with estrogen replacement. My cardiac knowledge contributed to the latest Clinical Practice Guidelines for Turner Syndrome. According to the American Academy of Family Physicians, “Clinical practice guidelines are statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options.” I’ve done all the “right” things to prepare her, but my emotions are having a hard time catching up with this change in reality. We’ve been preparing her to take over her health issues since she was 16. Check. She took charge of another new diagnosis at 18. Check. When she went to college, she took over all her medicines and almost all her doctor appointments. Check. She made the final choices on surgical repairs to be made and which surgeon would perform her open-heart surgery at 20. Check. She started medical school and attends her cardiac appointments. Check. She is responsible for all her healthcare needs, but there is a tiny bit of me that wants to hang on. When her boyfriend who is studying pharmacy asked whether she’d taken a certain at-home blood test, I knew it was time to let go.