For the first few years after our second child was born, my life as a parent seemed to be divided into Before Freyja’s Diagnosis and After. I will never forget the heart-stopping day we found out, when I thought the world would end. For a brief period, I even feared I might never be able to love my own daughter, all because I didn’t ask for this. I never wanted to be a special needs parent. That was not how my life was supposed to be. I had a very clear idea of the kind of family that I wanted and this was not it. But that is not how things went, and I was angry, bitter, and jealous for years.
One day, after seeing too much wrist poking out of a long-sleeved shirt, I went through the girls’ closet and cleaned out all the clothing that was getting small. With no other children to save anything for, I sorted everything and got it ready to pass on to a friend. I got oddly weepy folding the last of Freyja’s outgrown things. I got lost in memories of the first time I piled up and passed on her baby clothes. You know, from Before We Knew.
Everyone reassured me that babies develop at their own pace and convinced me not to worry. I tried not to. Instead, I started to hate my friends.
When Thora was a toddler and I was pregnant with Freyja, I knew three other women who were also expecting. We all had our babies within a few weeks of each other, and for a while it was so much fun to meet up for baby-and-mama yoga, for walks in the park, all the while comparing notes about sleep, feeding schedules, growth charts, strollers, pacifiers, whatever. I liked to humblebrag about how well Freyja slept and how little she cried, but over time I started to notice other things about her that I did not tell my friends. My baby was not progressing the same way their babies were. By the time she was six months old, I was sure something was really, really wrong. Yet everyone reassured me that babies develop at their own pace and convinced me not to worry. I tried not to. Instead, I started to hate my friends. I wanted nothing to do with these women and their perfect babies, and over time I lost touch with all but one of them.
It’s hard to talk about being jealous of your friends. It’s hard to look at their children and say, that’s what mine should be doing. Whenever Freyja and I got together with my friend and her daughter, of course I said nothing. Her baby learned to sit up. Freyja did not. She started to crawl. Freyja did not. She said Mama and Dada. Freyja did not. And all through it, I said nothing, but looked at her baby and mine and felt so unlucky, so unfortunate. I felt pity for myself and for Freyja, robbed of so much possibility.
When both girls were about 3, my friend and her daughter came over to our apartment for a playdate. The little girl came on her scooter. It was pink and its wheels lit up and Freyja loved it. She wanted to play with the scooter too, but her balance issues make scooters very dangerous. My friend thoughtfully collapsed it and tucked it into a corner by our front door while I enticed the girls with some toy or other, and it was forgotten for a few hours while we all played. Later, when my friend was putting on her jacket and looking around for her daughter’s sneakers, the girls remembered the scooter. My friend’s daughter zoomed up and down our long hallway. Back and forth and back and forth she scooted, and Freyja, crawling, could not keep up. She tried. She screamed with delight that her pal was scooting around and around her, and she spun herself in circles to follow the bright, blinking lights. Then she was screaming with frustration at not being able to catch up. By the time our friends got into the elevator and left, she was screaming in pain. In her frenzied attempt to chase the scooter, she crawled so quickly and so intently across the hallway carpeting that she’d gotten rug burn on her knees and palms. They were angry, raw, red and lacerated. I scooped her up and kissed her wounds, and for a moment, all I could think was, “Why me? Why Freyja?” And that was such an ugly thought that I got even angrier, and suddenly I wanted nothing to do with this friend anymore either.
I wanted to celebrate my brilliant child too. I wanted her to be able to play on the playground without needing my help.
I can’t go through life cutting people out because they have something I don’t. I can’t stop interacting with people because my child has a disability and theirs doesn’t. But part of me wanted to. Part of me wanted to wallow in self-pity and resentment because someone else got something that felt like it should have been mine. I wanted to celebrate my brilliant child too. I wanted her to be able to play on the playground without needing my help. I wanted her to be able to go to the bathroom by herself. I wanted her to devour books like I do, take long walks or bike rides with me or take up a sport, and grow up to be whatever she wants to be. I felt like those were things guaranteed to me as a parent, and not having them made me seethe with envy.
People tried to be there for me. Even the friend whose daughter had the scooter continued to treat me with love, acknowledging and validating my feelings openly and respectfully. Other people also told me what I was feeling was normal, but I knew it wasn’t. A few kindhearted friends sent me "Welcome To Holland" by Emily Perl Kingsley. I hated that piece and I hated everyone who tried to help and the only way I knew how to handle that was to isolate myself and Freyja.
But two things happened to change how I felt.
One, I started to see Freyja’s value. Not just to me and our immediate family, but in her school, in our social circles, in our community, in society. Children seek her out to play with. They want to help her, yes, but they also just like her and want to be around her. And because she is so extroverted and friendly, she talks to people in the supermarket, at Starbucks, in the library, at the playground, at the sports and rehab center where she gets her PT and OT, at the hospital where she sees her medical team. I see the immediate effect she has on them. I see how much her presence makes people notice their privilege and question their assumptions. I see how she teaches people to be more considerate and kind. She is important exactly the way she is.
And two, I have learned to be grateful for what I have instead of being resentful about what I don’t. As a family we’ve been playing a game at dinner talking about our day and asking each other what we are grateful for, but for a long time Freyja couldn’t play along. Every evening she would interrupt the game by knocking something over or asking for someone to fetch something for her. Gratitude was a concept she could not grasp. And then one day, she got it. Now she reigns proudly over the family during our gratitude games, demanding to hear from everyone else, pointing at each of us in turn, letting us know when to speak before she chimes in with what the best part of her day was and why she’s grateful tonight. I look forward to this exchange every single evening and I find that the more she has to contribute, the more I have to contribute, too. Freyja doesn't make feeling grateful hard for me anymore; now she helps make it easier.
So there I was, making a pile of too-small little girl clothes, lost in thought about Freyja and her baby clothes back Before We Knew, and I got weepy, but not because I feel sorry for us anymore. Not because things are so hard. I got weepy because we’ve come through so much.
Watching Freyja grow, and watching myself grow along with her, I teared up the same way I do watching old baby videos of Thora, our older and typically developing daughter. It was just an observation of the passage of time, just a bittersweet where does the time go, a mother’s nostalgic they grow up so fast. Of course I still have lots of hopes and dreams for Freyja. But I’m no longer infuriated that someone else’s kid can do something she can’t. Another child’s success doesn’t equal a loss for Freyja. Learning to look for the bright spots helped me to love my daughter and what she brings to the world instead of wallowing in what she isn’t or can’t do. I have learned to set aside all the things I thought she should be, so that I can see what she already is and always has been.