Anne Hefty

@anne-hefty | contributor
Anne Hefty is a stay-at-home mom to two amazing children, one of whom has 22q11.2 deletion. She adores running, writing, reading, early mornings and spending time with her family.
Community Voices

A New Land

In mulling over all of the big feelings everyone is having these days about, well, everything, I keep coming back to something that I read when my daughter was a baby and diagnosed with 22Q11.2, a rare chromosomal deletion.  I vividly remember reading “Welcome to Holland,” by Emily Kingsley, and being struck by her description of what it was like to suddenly be parenting a child with special needs.  I feel the same way again right now.

In person or virtual learning. Fall sports or no sports. No matter which debate or petition I read, I come back to the feeling that we are all struggling to come to terms with the fact that we have landed in Holland. Over the last fifteen years, I have found it enormously helpful to acknowledge that while I expected to be somewhere else, where I am is a beautiful place regardless. I don’t love landing in a new place again; I would be lying if I said I am already happily adapted to quarantine life.

I am again disoriented and peering back at how it used to be. I am envying people who are still in a different place, through either good health, good fortune or, frankly, denial. If I am honest, I am constantly wondering if it is possible for any leader to get back into the driver’s seat and steer us all back to the way it was, to life before #COVID19. But, here we all are. No matter what decision a school board makes or if sports resume or what local ordinance is enacted, I think that underneath it all, the part that fuels a lot of the divisiveness is that it is hard for everyone because no one expected to land in Holland. We all want to go back. Except in a pandemic, no matter which side you choose, ultimately, I think that the best way to navigate has to be acknowledging the fact that there is no rewind button. Or fast forward. We are in this together and it is indeed a whole new land. While we all might have different struggles or goals or priorities, I firmly believe that, as John Wooden said, “Things turn out best for the people who make the best of the way things turn out.” None of us choose to be rerouted in March and none of us can control the exact outcome. Maybe the most beautiful part of this new land is that we can see that we are all here together.

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Anne Hefty

Dear Herd: Please Help Protect My Immunocompromised Child

Dear Herd, I have been watching the coronavirus (COVID-19) news closely. As the virus immobilizes and polarizes my home state of Wisconsin, I am also watching the reactions of people in our community to the spread of a transmissible disease. What set off my five-alarm, gut reaction to the recent news of coronavirus spreading like wildfire around the globe is the same thing that terrified me when there were unvaccinated pockets in our country that experienced the resurgence of a previously snuffed-out disease, like the measles. My daughter has a significantly compromised immune system and when she was younger, she wasn’t able to be fully immunized. Because for her, the live vaccines actually presented a threat to her already struggling immune system. Thus, she was far more susceptible to the viruses because she was unvaccinated and had a compromised immune system. Even before the coronavirus, I was never far from the latest news on viruses and vaccinations or a bottle of hand sanitizer. We are all part of the same herd, but the truth is that parenting my healthy firstborn child and parenting my daughter are about as similar as riding in an airplane and jumping out of one. I readily admit I would never understand the importance of herd immunity, germ protection or social distancing if I wasn’t the parent of a child with a rare disorder. My daughter was born fifteen years ago and I still have a jewelry box of her little hospital bracelets, the size of pinky rings — reminders that we actually survived when it seemed like we would all perish from exhaustion, from silent surgery waiting rooms and the unbelievable way you have to cling to the earth when it has turned upside down. So I understand that the public is new to grasping what it means to manage risk and to avoid germs. I understand that until right now, the idea that there are people in this world who could be quietly carrying germs that are dangerous to you or your loved ones is a foreign concept. I have had years to get used to risk-management. I’m used to thinking about germy surfaces, travel choices and the risks of large gatherings. Now? I am watching as our country is getting a taste of what our lives have been like, and what it feels like to be vulnerable to the choices of others who carry contagious diseases. After grappling with a mix of emotions for the last seven weeks, I have finally found the right words to describe my state: fearful and furious. My daughter is immunocompromised due to a chromosomal deletion, 22q11.2, which causes a long list of complications. Her lack of immunity to the germy, wide world has always been on the forefront of our parental responsibility. Quite simply, just as vaccination is successful by getting the majority of the people to protect the minority, so too are germ prevention measures imperative to protecting our community from COVID-19. As Eula Biss writes in her book called On Immunity: An Inoculation, vaccines protect the minority of the population that “is particularly vulnerable to a given disease. The elderly, in the case of influenza. Newborns, in the case of pertussis.” And as I envision my daughter, in the case of everything. I think of her and feel a rising fury as the news bleats repeated warnings about the spread of the coronavirus and about people who have disregarded their quarantines, who continued to travel despite warnings, who are upset by the cancellations of sporting events or the maskless masses protesting the “Safer at Home” order while marching shoulder-to-shoulder around my state’s capitol. The same disconnect that allows people to feel they have an individual choice in vaccinating is the disconnect that scares me with the coronavirus. Although the public has a “choice” to self quarantine, to travel, to comply with social distancing recommendations or to attend large gatherings, I worry because the health of so many communities and people depend on the choices of those who perceive themselves to be healthy, immune, unafraid of coronavirus — in other words, independent of a herd. When large numbers of people in our community fall ill, we will know that pockets of the virus have been brought directly into our area. At that point, it will be too late to protect the weakest members of our herd. My hope is in the days ahead, the spread of the coronavirus will slow down. If that happens and it seems like all of this fuss was for nothing, then we should be thankful for all of the people in public health, in companies and in universities who are working very hard right now for that outcome. However, I worry that my community, like so many others, will soon find ourselves in the midst of an outbreak. And the predictions for those who are immunocompromised at that point are scary. Susan Sontag, the author of Illness as Metaphor, wrote “Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” I would spend all I have to buy a permanent passport into the kingdom of the well for my daughter and others like her. But until I find that passport, I am counting on you. On everyone in the healthy, confident, unafraid, mobile herd. I hope my herd can put themselves in the shoes of its most vulnerable members. I hope you and your families remain part of the healthiest and safest and strongest herd, but that you don’t forget those in your herd who don’t hold that same passport to the kingdom of the well. And I hope you don’t forget that your actions — or inactions — right now will help the weakest among us. Yes, it can feel inconvenient and unfair to have to cancel events, change plans or delay reopening your business to protect our most vulnerable right now. Trust me, I know. My family lives with those inconveniences every day. But please also trust me in knowing it is worth the effort. Today marks the sixth week that my husband, an emergency room physician, has been quarantined in our basement, away from our family, in order to keep my daughter safe and to continue to treat patients. While it is not easy, it is, and always will be, worth the effort. For more on the coronavirus, check out the following stories from our community: The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19 What It’s Like Parenting a Medically Complex Child During the Coronavirus Outbreak Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus How America’s COVID-19 Response Is Exposing Systemic Ableism Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages

Anne Hefty

Things I Do to Prepare for My Child’s IEP Meeting

I have been in countless individualized education program (IEP) meetings since my middle schooler first entered the school system as a tiny preschooler. While special education is intended to make school and learning accessible to all children, I quickly learned that the process itself is incredibly complex. So complex, in fact, that I used to joke that IEP stood for “in English, please” because the jargon and acronyms went ridiculously over my head. Over the years, I’ve gradually learned how to navigate the land of IEP meetings for my child with special needs. Sure, I’d still rather go to my annual OB-GYN or dental appointment, but I’ve learned enough about my daughter’s rights to feel comfortable as her advocate. It doesn’t matter if your child’s IEP is three pages or 100, walking into a room of already seated educational professionals, all of whom have a stack of papers with your last name on them and become quiet when you enter, is a bit like having the lights suddenly go out. It’s surprisingly unsettling, even as a grown-up. Perhaps it’s the endless acronyms (OMG) and procedural formalities. No matter how prepared I felt in the past, I was unsure of the best way to navigate through it when I seemed to be the only one in the dark. Then, a few years ago, a light switch flipped on in my head: I am the one person in the IEP meeting who knows my child the best, and my voice is her voice. That made all the difference to me when thinking of what an IEP means, since it’s far more empowering to think of an IEP as “I’m an Expert Parent.” While I have no business giving advice based on my professional background, as I’m not an attorney or a consultant, my hourly rate is simply me giving you my two cents worth as a mom who has decided that we are all experts. If you have a child with special needs, I hereby grant you permission to consider yourself a professional advocate with a masters in no nonsense. We don’t have time to figure out the meaning of each acronym, let alone what exactly schools providing free appropriate public education (FAPE) looks like for our children. But, as parents and participants in IEP meetings, we do need to understand the lay of the special education land. My daughter has 22q11.2 deletion syndrome which means she qualifies for an IEP that should theoretically help her with everything under the sun. I would love to say our experience with special education has been seamless because when our daughter entered school, we already knew her challenges required additional support. But there is a universal truth to receiving individualized education for your child, no matter when their challenges are identified. You understand your child better than anyone, but when it comes down to knowing your rights and how to help your child succeed, the truth is that participating in an IEP meeting is overwhelming and like playing a game without having all the cards, or even the rules. The school isn’t offering a menu of a la carte items that your child may or may not benefit from. They give you, well, what you ask for. It’s a Catch-22 for someone who has never navigated the far off lands of special education. As my daughter’s annual IEP meeting approaches, the lessons I’ve learned about special education are foremost in my mind. Here is my two cents worth: 1. Brainstorm a list of questions and concerns for the team prior to the IEP meeting and have a hard copy of the list for each team member. Walking into the meeting with something to hand out and a list of things to address at the beginning of the meeting is both empowering and helpful. The typed copy of my concerns makes me feel more in control and we stay on task. A win-win. 2. Ask the team at the beginning of the meeting how they think the services are going and what support or modifications they find most helpful for your child. I think all of the teachers and specialists benefit from hearing the answers, and I benefit from learning how the IEP essentially comes alive (or falls flat) during the school day. 3. Use a compliment sandwich if you have a specific sticking point. If I start with a small compliment, address my concern and end with a compliment (thus, the sandwich analogy), I am far more likely to make progress without someone taking offense. 4. If you have a specific problem and it involves only one subject, it’s helpful to have a meeting with the teacher and special education coordinator prior to the IEP meeting. For my daughter, IEP meetings involve every possible specialty, from the school nurse to the speech therapist to the classroom teacher, and while I respect their time, I don’t want to feel rushed if there is an issue that warrants a longer discussion. I realized I can request a meeting prior to the IEP meeting to discuss more in-depth concerns. Since there is no checklist of potential services for parents, don’t feel badly asking for time to brainstorm ideas or to extend the IEP meeting. 5. If a question arises at the meeting about the best way to address a challenge for your child, I always ask the team, “What would you do if this was your child?” Ridiculously enlightening and helpful. 6. If you don’t feel like you are making progress or being heard, reach out to the district’s special education coordinator (a.k.a. the director of student services). I guarantee their contact information is on your district’s website. In my experience, the director of student services has been an incredibly knowledgeable ombudsman who has a much easier time seeing the big picture because he or she can add additional resources or aides. Fun fact: The director is also responsible for being compliant. When in doubt (or distress), I copy our director on my emails, and the response I get back from any team member is guaranteed to be professional and expeditious. 7. Wear special socks. A dear friend who understood my IEP meeting angst gave me the best gift. Before I went to a meeting, she dropped off a pair of socks. The socks say, “You are not here to make friends.” I wear them every time I have a meeting (with long pants that cover the socks). I’m normally a people pleaser, but getting the proper resources and support my child needs isn’t a walk in the park. You may have to go with your gut and advocate for your child even if you’re the only one pushing for more. Don’t say “sorry” or worry about what the other meeting participants think. At the end of the day, you have plenty of friends. What you need from the meeting is progress. Believe it or not, sassy socks help. To me, the true heart of special education law and an IEP is embodied in this quote: “Fair isn’t everybody getting the same thing. Fair is everybody getting what they need in order to be successful.” Now, the next time you’re bracing for an IEP meeting, take a deep breath and remember the true meaning of special education: infinite educational possibilities. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Anne Hefty

Lessons From 9 Years Parenting a Child With 22q11.2 Deletion

My daughter turns 9 this week. It hardly seems possible when I think of how quickly time has passed between her swift arrival on a crisp, gray day and today. The nine years that have passed have taught me more than all 27 years before she became my daughter. Unlike the first weeks and months after I first held her, my thoughts are not frozen with fear or worry. Today, I woke up and knew with certainty that there is no way I could feel this happy had I not experienced the sorrow that accompanied her first years. I have kept a tattered page from the book “The Prophet” in my dresser drawer since my daughter was a tiny baby, when she was recovering from heart surgery, nursing every hour and struggling each day to even breathe comfortably. I read this quote in the book and it struck me so profoundly that I actually ripped it out and shoved it in my messy drawer, for later, for when the joy presumably arrived and the fear subsided. “The deeper that sorrow carves into your being, the more joy you can contain.” I tore the page out and held it, glancing at it over and over again over the past near-decade and marveling in the highs and lows at how true it rings. It has never been more true than it is today. Over the years, I have learned that the 22q11.2 deletion that once defined how I thought of my sweet baby girl, that once took my breath and my dreams away, has faded into simply a word on her chart and a source of hope when I read it in the latest article on stem cell therapy’s incredible promise. I look at my daughter Nadia and I don’t see her deletion, heart repair or missing kidney. I marvel that she has the sweetest and biggest soul I have ever seen in a child. I don’t see her speech delay. I don’t see her low tone or foot braces. They are long gone. She gave up signing at age 4 and never looked back – although she often uses hilarious gestures while she is dancing and singing in the shower. I don’t see her learning difficulties. She just read me an entire chapter book and giggled at the funny parts with such delight that I found myself captivated by a children’s story. About hippos. I don’t see her doctor visits – 20 in the past three months. When we left her appointment last week, she clutched my hand while skipping and told me that “our date” was her favorite part of the day. I don’t see her fused spine, because she surfs and skis and does cartwheels and she literally bounces with joy. Most days, I don’t even see her immune deficiency. Through magic, impossibly wonderful teachers and friends and loads of prayers, she not only goes to school every day, but loves school every day. I think our luck is quite simply otherworldly. Honestly, I think her love and fairy dust have healed all of us and blown into every little corner of our world. In utero and at two months, we were terrified about what would happen if we lost our baby, our precious baby. We were told that things might work out, but she was little. But her labs were off. But her numbers were low. But they didn’t know. But she had this deletion. We prepared for a long heart surgery that would bring a grown man to his knees. That did bring my doctor husband, the one who never worried or cried, who tended to gunshot wounds in trauma centers, to his knees. We shut off the radio. We went to bed at 8. We slept fitfully, in between her feedings, and laid solemnly in bed until we had to get up and face the day. We stopped talking to friends with healthy kids because it was impossible to relate to teething and solid food debates when we were researching Duke doctors to do thymic transplants, or finding specialists to help with surgeries. We curled up and rocked our baby, more for us than for her, and needed our own moms and dads more than we had since we were children. I wondered if I had taken more prenatal vitamins, eaten more wheatgrass, more green smoothies, avoided whitening toothpaste, gotten more sleep in pregnancy, if I could have made a difference – spared my baby girl the list of anomalies that stared at me from the hospital’s brochures that accompanied each visit to a different specialist. And then, the sun came out. It was brighter than anything you have ever seen. Nadia, even as an infant, had a smile so sparkling and brilliant, that it made her eyes scrunch shut. Apparently, the well that sorrow carved was indeed deep enough to hold a lifetime of joy in the smallest imaginable package – 20 pounds at 2 years, 30 pounds at age 6, 40 pounds at age 9. Despite her size, she packs a serious punch. She takes everything in stride and has such a big personality that sometimes I am surprised when I see the scale. I think we often want our kids to be like us, to meet our standards, to make us proud with their achievements and mimic us so we can relate. We want to show the world how successful and bright our children are – an extension of us. In this case, I think the opposite is true. I think we more often strive to be like her, to accept her for precisely who she is and for what her best is rather than “the best.” She loves so deeply, enjoys so richly and feels joy so intensely that it is like watching a beautiful sunrise and feeling the heat of the best summer day, all at once. She isn’t reserved or self-conscious, like me, and our journey has let me see the best and most beautiful parts of everyone. So, on her birthday, I felt compelled, contrary to my nature but so fitting with Nadia’s, to share something personal with the world, without worrying what others will think. Since that cold and overcast day nine years ago, we have witnessed countless quiet, unspeakably beautiful acts of kindness towards Nadia and towards us. She has turned our world, our friends, our coaches, our teachers, our neighbors, into family. From the friend who brought me her pillow when I first checked into the Children’s Hospital with Nadia because she was a nurse and knew that her pillow would be softer, more comfortable, to the stoic neighbor who brought soup and dropped it on our doorstep, along with a tiny note and an angel pin that remains affixed to the shade of her infant car seat that I just can’t part with, I am left in awe. From my sister and family who have listened to every high and low and sifted it out for me with such grace that I swear they walk on water, to the friends who gave us a little jar of glitter fairy dust that still sits on Nadia’s dresser and will surely be sprinkled somewhere on her wedding day, the world has rallied around us and held us together. Nadia recently made rainbow loom bracelets for practically the entire team and stands at my son’s basketball tournament. She took such delight in each gift, in sneaking up and delivering them, in selecting just the right colors and in seeing the look on their faces when she gave them her gift. I was touched, but honestly more grateful for the brilliant guy who marketed rubber band bracelets and kept her occupied for a day in a gym. However, the next weekend, when I saw, not one, not two, but practically a dozen people—coaches, grandparents, teammates, roll up their sleeves, just a bit, or sneak a little wink, to show her that they had worn it for good luck, I saw her light up and stand taller. And I knew. Right then. This is the story of Nadia. She hugs bigger. She burns brighter. She loves deeper. And she seems to be the happiest little girl, despite her differences, despite everything. I think she is here to teach us that our well can run over with joy if we just live simply, happily, and with loads of love for the world. She accepts everyone just as they are. On her birthday, I hope the world can see, above everything else, that love and acceptance is indeed all we need. I still worry about her as she grows up, that her differences might matter more. To others. To her GPA. To herself. To colleges. To peers. But I recently watched a video, 1,000 Miles of Luca, and realized a simple truth. We don’t spend time with people because they are the smartest, the most academic, the most athletic, or the most articulate. We spend time with people because of how they make us feel. I hold fast to that today because I am celebrating my amazing daughter and the ripples of joy she has spread in only nine years. The sky’s the limit, baby. The sky’s the limit. We want to hear your story. Become a Mighty contributor here .

Anne Hefty

Lessons Learned When Parenting a Child With 22q11.2 Deletion Syndrome

When I was pregnant with my firstborn, I devoured pregnancy books and glossy motherhood magazines. I memorized “What to Expect When You Are Expecting,” excitedly ushering each week, month and trimester of pregnancy in with a new chapter of pregnancy facts and baby trivia. When my son was born 14 years ago, he was the picture of health — a textbook pregnancy and scrapbook baby. Two and a half years later, we welcomed our sweet baby girl into our lives with the exact same bushel full of love, gushing pride and our bucket list of dreams. We assumed, despite an ultrasound at 20 weeks that alerted us to our unborn daughter’s solitary kidney, that the doctors were correct in reassuring us she was indeed going to enter our world with the picture of health, happiness and pride. Instead, we found our world turned upside down and our hearts filled with anguish as we tried to put our broken dreams back into the 1000-piece puzzle of parenting a special needs child. The reality of what to expect with a baby who was in need of heart surgery and eventually diagnosed with 22q11.2 deletion, a syndrome that causes severe immune problems and a list of almost 200 other possible health and developmental difficulties, was initially terrifying. Every thread of pride and amazement was replaced with a blanket of fear. As a 29-year-old, jogging, health-food eating, prenatal vitamin-taking mom, I expected to be pacing the halls of the Children’s hospital about as much as I expected to win Powerball. And yet, there I was, with the excruciating feeling that luck had run out for my child. Now, 11 years later, my daughter has rocked our world with her perseverance, her courage and her sheer happiness. She endured surgeries, therapies, interventions and an endless stream of specialist appointments. She eventually learned to walk and talk, but first she learned to wink, use sign language to tell jokes and to belly-laugh — things that brought us more joy than any word she has ever spoken. The happiness we find in the little, everyday things surpasses our joy in the traditional, once-expected milestones tenfold, because our miracle girl beat the odds. We hit the jackpot after all. Today, remarkably, when someone meets my daughter, they may not even know our story because she “looks” typical. The blessing is, on an average day, she lives the life I had only dreamed of when her genetic testing came back positive for a rare syndrome. The “curse” is that I am caught in many conversations with people who don’t understand where we have been and who speak about “normal” pregnancy and parenthood without thinking twice. On a recent mom’s night out, I had a conversation with a gaggle of neighborhood moms about pregnancy and parenthood as we waited to order our dinner. By the time the food arrived, I was no longer hungry. The night left me wondering who I would be without the detour my life took the day our daughter was born. The top lessons I learned as a special needs parent were highlighted before the appetizers even reached our table. 1. When you are pregnant, having a healthy baby is not a choice. With a few pregnant women in our midst, everyone at the table seemed to agree on one thing, “I don’t care about whether the baby is a boy or a girl, just as long as the baby is healthy…that’s why we are having/had kids while we are (insert any adjective). ” For every person who has visited their baby in a hospital or spent challenging hours in a pediatric surgery waiting room, you are implying they were not “that adjective” when they were expecting. Ouch. Just because you do or don’t drink caffeine, smoke, work out or fit in the under 35 “high risk” category, it doesn’t mean you have made a choice to have a healthy baby. It is luck of the draw, folks. So, don’t be too quick to pat yourselves on the back, because to the person in my shoes, it is like saying I chose to have a daughter with significant health problems. While I can’t claim to understand the exact scientific explanation of my daughter’s 22q11.2 deletion syndrome, I do know that I most certainly did not cause it. 2. I now understand the word “normal” is relative and oftentimes is hurtful. Saying that you “can’t wait to get back to normal” when you have a baby, and listing all of the things that you miss while you are pregnant, from cocktails to workouts to skinny jeans, are akin to nails on a chalkboard to someone like me. Like these chatty moms, before giving birth to my second child, I had no idea what it was like to parent a child who has a long list of special needs and an even longer list of lifelong challenges. When my daughter was little, and even now in the midst of trying to find understanding for our exceptional daughter in a judgmental and competitive world, I simply wish for others to have more empathy for those with differences. While I listened to the moms’ light-hearted banter about their favorite parts of getting back to normal, whether it be Pilates or red wine, I recalled the moment I understood how precarious “normal” can be. When my daughter was 6 weeks old, our pediatrician heard a “loud heart murmur” at her checkup and we were sent directly to local hospital, where an IV was hooked up to her tiny forehead. We were then transported two hours later to a bigger hospital via an ambulance with only our diaper bag, a granola bar and no change of clothes. Nothing could have prepared us for the sheer terror that took root as we watched all normalcy slip away. Our “normal” was a steady stream of doctors and me nursing our immune-compromised, sleep-deprived daughter for the next three and a half years.  Even 11 years later, we will never “get back to normal.” 3. Life doesn’t always follow your plan. As moms exchanged stories about how they worked hard to quickly get back into their routines, I felt like I was on the other side of the Plexiglass in a cab, unable to relate to their experiences or chime in even though we were seemingly all traveling down the same parenting road. What I have realized is that you never know what others may be experiencing or what you are taking for granted, so count your blessings and know that they are just that: good fortune. It is wonderful to have life go according to your plan and routines, but like countless other moms, I realized that the plan only works until your world falls apart. Then you know that life really isn’t a “Choose Your Own Adventure” after all. Be grateful and don’t judge. You don’t know what path others have taken to get to today nor the challenges they face. 4. Whether it is an easy pregnancy, an easy baby, an easy toddler, an easy stage or age, it isn’t you. The same goes for the difficult ages and stages. You are a great sleep trainer until you have a baby that doesn’t sleep. Your child has an amazing vocabulary because you read to her every night, until you have a baby that doesn’t make a sound. You have a healthy baby because you did yoga and drank fortified organic smoothies, until you suddenly have a special needs child. You know exactly what to expect, chapter by chapter, month by month, until you wake up one day and find yourself completely in the dark. The long discussion before dinner focused on how a mom sleep-trained her baby by 2 months of age. I vividly remember crawling into a hospital crib with my precious baby at that exact same age just to soothe her in the PICU. While I sleep-trained my robust firstborn and took pride in his peaceful slumber, I was still waking up every few hours to nurse my daughter at age 3, and I couldn’t bring myself to wean her because my immune system boosted her struggling one. I realize now that I had the privilege of “sleep-training” my firstborn son as much as I felt like I had some say in teaching him how to walk and talk at an early age — things that my daughter needed ankle braces and years of speech therapy to master. I now understand the big picture and what I missed back then — how valuable every child, every stage, every age, and every difference is because I take nothing for granted and I take credit for very little. I have changed my expectations entirely, and in return, I find an unparalleled sense of gratitude that I wished I could share with all of the moms as I listened to them compare and compete. Nothing I had read could have prepared me for the journey with a special needs child. More importantly, nothing I had experienced prior to it made me appreciate my children and the value of differences of all kinds in a more profound way. Hanging on my grandma’s favorite weathered-wall plaque are the words, “To understand someone, you must a walk a mile in their moccasins.” I have come to understand that it isn’t just me and my beloved daughter; it’s the mom who miscarried, who hovered in the pediatric ICU, whose child has yet to speak, whose sweet little baby brought them to their knees. It is every mom who knew exactly what to expect and then woke up to the unexpected.