Monday, February 24, 2020

Someday, you will find your new normal

Dave zapped me a photo the other night. He and Max had gone to L.A. for a boy joy trip, complete with a Carnival Cruise. Now they were partying with Jeff, one of Dave's oldest friends, to celebrate Jeff's birthday. For the record, Jeff doesn't usually wear a blond wig; he'd dressed up as Eddie Van Halen for the occasion. Max had dressed up as a person obsessed with Los Angeles who wants to move there, complete with the L.A. sweatshirt I'm pretty sure he wore every single day last week.

Max hit the dance floor as soon as he and Dave walked into the restaurant. Some woman took a liking to Max and danced with him for a while. Then a guy walked up to Dave, offered him a $10 bill and told him to buy Max a Shirley Temple.

Yep. Just another not-so-normal-for-other-people-but-normal-for-us week. All was good.

When Max was born, nothing in life felt normal. I'd had a baby who had a stroke: not normal. Max was at risk for vision problems, hearing problems, cognitive problems, cerebral palsy: not normal. I spent most of my maternity leave from work taking him to specialists and therapists: not normal. Max couldn't pick up toys. His hands were often tightly fisted. When I spoon-fed him, he dribbled most of it out. Not. Normal.

I didn't look at Max and think "not normal"—no, I just looked at my chubby-cheeked, bright-eyed, happy boy and worried about all the normal stuff he wasn't doing. I worried about when and if he would achieve normalcy, as in, reach developmental milestones. I worried about all the normal that seemed out of reach for him.

This is the lens through which many of us view life: what's normal, what's not. Perspectives are formed when we are young through our parents, teachers, and social circle. If you didn't have someone you were close to with special needs, then you see their needs as not normal. And I didn't grow up close to anyone with special needs.

Your sense of normalcy as a mother comes from your mom crew, whether they're your friends, the neighborhood moms or the ones at activities you signed up for. It is virtually impossible to feel any sense of normalcy when all the other moms are doing the usual things moms of new babies and young children do, and you are not. You feel alone. You feel isolated with your anxiety, because it is impossible for anyone to understand just how great yours is. You are oh so aware of how not normal your motherhood. You sit there in the baby movement class you signed up for, hoping to achieve some sense of normalcy, and feel acutely Not Normal as all the other moms chat animatedly as their babies crawl around and you sit there with your little one on your lap because he is not able to crawl.

What you don't understand, when your child is very young, is that you will find your new normal. Oh, yes, you will. It is hard to imagine or accept or even understand that this will happen, because everything feels Not Normal. But that will come. In the early years, you will continue to watch your child like a hawk for any developmental progress. You will continue to mourn the normal you lost. You will experience deep moments of sadness at communal activities, like being in the park or at birthday parties, where you watch the other standard-issue children doing their standard-issue children things and your child is not.

It will help you immensely if you force yourself to stop reading the developmental books and unsubscribe from the "Your child this week/month" newsletters. Me, I outsourced birthday party outings to Dave on several occasions when I knew I wouldn't be able to take it. It will seriously help you to connect with other moms of kids who have special needs because you will take deep comfort in the fact that you are far from the only one experiencing the Not Normal. Facebook groups are your friend. Maybe one of your therapists would be game to organize a local moms meet-up, as one of Max's once did. And maybe you could get some therapy, too. I did, for a while, because I didn't want to unload onto friends all the time or Dave. In the comfort of the therapist's office, I could sob my heart out and share my deepest anxieties and try to exorcise that grief from my heart.

As time passed, our family grew into our own normal. During Max's toddler years, getting help from therapists to enable Max and trusting doctors to guide us became normal. As Max got older, being the mom of the only kid at the party not able to jump on the trampoline or eat birthday cake without assistance got normal. Talking matter-of-factly about Max having cerebral palsy got normal, whether with relatives or curious kids. Making sure Max took his anti-seizure meds got normal. Programming a communication device and later a speech app to help Max communicate got normal. My identity as the mom of a child with disabilities normalized.

Dave and I also found our own kind of normal as parents. When Max would wig out at restaurants or events because the noise was overwhelming one of us would hang with him in the entry or take a walk with him outside and the other would stay with Sabrina. If Max was getting upset at a family event, one of us would sit with him in a quiet room. I was typically the parent to research treatment, attend IEPs and do therapeutic exercises with Max. Dave typically helped feed Max and took him on errands.

We began to do typical family stuff, like go to theme parks and beach vacations and—once Max's sensory issues subsided—go to the movies and shows. We did some atypical family things, like go through car washes a few times in a row when Max was obsessed with them. Or hang out at the local fire station, after Max decided he was going to be a firefighter when he grew up. But that not-normal family stuff was our normal.

And Max? He's just lives life as he knows it. He is aware he has cerebral palsy, but doesn't much talk about it or seem to want to. He's really social and is friendly with other kids at school, but Dave is his best friend and they are always off on adventures together, whether they're getting foot rubs or trying a new restaurant or going on a boys' trip where Max ends up dancing with a stranger and a guy offers to buy him a drink.

This life is not the normal I could have ever envisioned before I had children. But it is full of love and happy and fun and good. It is our normal, and I can't imagine any other kind.


  1. This was a good reminder for me today! Thanks Ellen!

  2. This is a good reminder. When I was pregnant, I did not think about wheelchairs, disability or early intervention. Nor did I think about therapy goals or life as a special needs mom.


Thanks for sharing!

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