For the Moms Who Knew ‘What to Expect,’ But Woke Up to the Unexpected

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.