It’s our daughter’s first birthday tomorrow. And while I am indescribably happy/relieved/grateful that we’ve made it this far, it hasn’t been the year that we thought it would be. Far from it.
Some things were expected, especially since she is our second child—like the epic, sprawling nights, and how it feels to hold our sleeping baby (like praying). And the way her smile sparks up the kind of love that is wild, primal—like absolutely nothing else.
What was not expected: Around 6 months, our girl was diagnosed with what we refer to as her own unique genetic map. She has a genetic disorder that has no name. It is a diagnosis that has been documented in only four other people worldwide. It’s associated with developmental delay plus a host of other concerns that I didn’t even know existed. Because there are so few cases, it is unknown what her strengths and limitations will be. Everything in her life is unfolding for us—when and how (and if) she will walk, talk, eat solid food, and process information in the way that we had imagined.
In the first year of my baby’s life, she’s had two surgeries, four sets of X-Rays, three different ultrasounds, an MRI, a helmet, a feeding tube (from which she gets all of her calories), and around 150 medical appointments. And that’s a conservative estimate.
My son, who is now almost 4, had gone to the doctor approximately once before his first birthday.
Here’s the thing, my girl doesn’t like to eat. She was born with her intestines tied up in a knot—something we weren’t aware of for the majority of her little life. I kept taking her to the doctor saying things like, “I think there’s something wrong with her stomach.” I remember on one of the visits, the pediatrician looking straight at me, swinging her blond ponytail decisively. “Unlikely,” she replied, dismissing me.
Now we have a new pediatrician.
I’m a freckled, Jewish, Midwestern mama with a child who has such little interest in eating that she has a Failure to Thrive diagnosis. It’s excruciating. Before becoming a parent, I used to have friends over for dinner, sometimes multiple nights a week. We all crowded around the too-small table that I spray painted flamingo pink, telling stories and spilling wine. No matter what, I would encourage everyone to have seconds, offering, only half-joking, “The more you eat, the better I feel.”
I don’t say that anymore, because it’s an impossible standard.
Once your child is 1, you get this question, over and over again. “Is she walking?” My guess is that most people ask this, but don’t care what you say; it’s just to make conversation. “Nope, not yet,” is what I reply, trying to stay upbeat. And the truth is, she isn’t even pre-crawling. She’s sitting around, cute as all get out, her face lighting up whenever I look at her. She’s probably the happiest person that I know. I wish I were as happy as consistently and wholeheartedly as she is. But her development is on its own timeline and there’s no speeding it up. We hope she’ll walk in the next few years and attend a nice Montessori preschool, just like her brother. Before she was born, I thought that was a given. But now, it all will be something to celebrate.
We have new dreams for our girl, but they aren’t based on when she will make the next milestone. The thing is, on the good days, this baby is teaching our whole family about what matters. About slowing down, about resilience. The grace and grit that radiates from her amazingly easy smile—especially while enduring the aftermath of a recent abdominal surgery—helps us all keep going.
Sometimes, on hard days, I wish things were different, easier. With less co-pays, more certainty. I struggle with how much she has been through already. I feel guilty for bringing her into this world and, at times, for how much less attention I have to offer my sweet and charismatic son. And there are days where I long for the kind of baby problems that we used to have, things like why won’t this kid nap and what’s up with teething?
It’s been hard on our marriage. I miss my husband, who I call Cedar. That’s a nickname from an earlier, easier time, when we used to spend weekends riding our bikes around Minneapolis, stopping for picnics near Lake Harriet. I fell in love with him, in part, because of the way that he listened to me, like an old dear friend (a really hot one). I also fell in love with him because he’s one of the most humble people I know, even though he has no need to be. Now we’re focused on keeping our baby alive, up at all hours, getting doused with all kinds of baby bodily fluids. These things are the opposite of sexy.
But we have also had a chance to work together toward something—the health of our daughter—and share a kind of suffering that actually, in an unexpected way, unites us. No one else understands what this is like. No one else will love this baby in the way that we do. And Cedar is still the best listener that I know. Sometimes, I really just need to talk. So, after we put the kids to bed, we do. We sit at the kitchen counter, and he looks me in the eyes, even when it’s late.
Our daughter’s struggle has made me more open, more authentic. It turns out that when I stop pretending that everything is great, it invites other people to do the same, and then we both feel less alone. I’m not going to sugarcoat it to try to wrap up our lives in a perfect bow of cute. Sometimes, we are cute. And sometimes we are exhausted and disorganized, brave and bold-hearted.
My friends—many who are overworked, under-rested parents themselves—have surprised me. They have offered all kinds of acts of loving kindness (flowers on our doorstep, pesto pasta to feed six, sitting with me until midnight in the ER). The people who have come through for us the most don’t ask, “What can I do?” They just do something useful and that is that. It’s a relief not to have to spell it all out.
Our family has saved us. My parents have brought dinner and groceries and taken my son overnight more times than I can count. They found a way to turn one week-long hospital stay with our daughter into a vacation for our son (at their lakeside home). Instead of having to share space with syringes and tubes, he went skiing for the first time.
We never could have gotten through this year alone. And I’m so incredibly grateful that we haven’t had to try.
Read More:
Bracing Myself Against My Son’s Severe Mental Illness
Mayim Bialik: Why I Support This Mental Health Organization & You Should Too
Why This Rabbi Uses Martial Arts to Help Kids with Cancer
