Managing (or not managing) birthday chaos
Admittedly, I go a little nuts for birthdays.
Gift giving is absolutely my love language, and conveniently, birthdays are Gracie’s favorite thing in the entire world. I could tell her that it was the mailman’s birthday and she would expect cake, birthday hats, and would be rehearsing her singing for when he showed up at our mailbox.
But here’s the thing: my siblings and I all share birthdays at the end of August. When we were kids, that chaos was fun for us, an 11 day flurry of icing and colorful wrapping paper and special dinners out at our favorite restaurants. My poor parents were also desperately trying to get us all ready for school at the same time, so we would often receive our birthday gifts all packaged in a new backpack for the school year ahead. We always had shared birthday cakes, and none of us ever had our own party or “event”, but we were grateful for everything they did for us. However, I didn’t fully realize the full extent of the chaos until I was the one planning it all.
Last year, I knew I had to pull out all the stops for my sister's birthday. I didn't even question it.
I made it my mission to make it the biggest birthday yet, especially given what we had been going through at the time. I wanted her to remember the first summer we spent as a team more from the happy things we did together than the scary changes we were maneuvering. Our mom had been dealing with ongoing health issues, there were a lot of stressful changes happening in our family, and, last but not least, she was turning the big, the scary… 22.
The terrifying 22nd birthday looms like a storm cloud over many parents of children with disabilities.
22 is the age when services “run out”, and they are no longer given a spot in the program or school many have spent their lives in. There is an enormous amount of legal, logistical, financial, and emotional prep that goes into dealing with this change, along with the additional labor of continuing to prioritize the comfort and stability of the soon-to-be 22 year old as they navigate a huge new step in their life. There also continues to be an egregious lack of services available to adults with disabilities that continue to help them grow and develop skills, and the programs that exist have limited funding, staff, and available spots.
Don’t worry - we won’t go into detail on the difficult stuff here. But, as I'm sure you can imagine, I was getting pretty tired of the difficult stuff, and I wanted to focus more on something that I knew would be WAY more fun.
So I dove head first into planning my sister’s very first solo birthday party, and didn’t look back.
After weeks of Amazon wish lists, trips to Party City, drafted party invites designed on Canva, a deep clean of every corner and cranny in our house, and about 247 listens to Gracie’s favorite Sesame Street clip of the characters singing “Happy Birthday”, the day finally came. We had balloons, themed decor, gorgeous homemade baked goods, perfect bowls of snacks. Family members brought pizzas and more presents than you can imagine. We probably had about two dozen friends and family filter through our home over the span of a few hours, which was a lot of people to stuff into our cozy living room and kitchen.
I only remember flashes of it: catching an occasional glimpse of Grace running into the room, waving at everyone, and retreating back to her computer room where it was quieter and less, well, people-y. Gathering with all our guests to stand around her sparkly purple cake, singing her happy birthday as she couldn’t stop giggling. Listening to Gracie eloquently read all her birthday cards before disappearing off to peace and quiet again, and realizing that based on their shocked expressions, many of our extended family didn’t know that she could read. Vaguely hearing my friends ask me if I had eaten, shoving a slice of pizza or a bottle of water in my hand, begging me to sit for a few minutes. Quickly rushing a small group outside to snap a few quick photos of us all dressed up, right before the sky opened up and we started to feel sprinkles of rain coming through the trees. When all our guests left, an exhausted silence fell over our home, and the few friends that had remained started to help clean up.
When reflecting on it this year, I wondered why I couldn’t really remember the few days after that, but the reality is, I was completely exhausted.
It took me longer than I would like to admit to recall what we did for my own birthday celebration 11 days later, sifting through the clouds of brain fog that swallowed up the days that followed that party. I swore up and down this year that I wasn’t doing another big party - not that she didn’t deserve one, but I just couldn’t. It would not only be a lot of work for me, but I also didn’t know if it was ideal for her, either.
And you know what? Even with all the weeks of prep, all the support, and all the extravagant treats, my sister still spent it alone, doing what she does every day - playing on the computer and listening to Sesame Street. That day just happened to have cake and gifts, too.
And don’t get me wrong, she loved the idea of a party, the balloons, the excitement, the attention (she is a Leo, after all). But the noise, the constant social exchanges with people she didn’t know very well, the chaos - I didn’t even consider that there was a chance that it could be very stressful for her, and an environment she’d prefer to avoid. I was so tunnel visioned by this perfectly planned blowout birthday party that I didn’t even consider that maybe we should also find a special way to spend time together for our birthdays.
This year, I resolved to do just that.
My friends and I all brainstormed the activities that Grace seems the most excited by, and we settled on a beach trip. After all, the only thing Grace loves almost as much as birthdays…. is going to the beach. We packed coolers full of drinks and sandwiches, bags of potato chips and tupperwares of fresh fruit, broke out a big stack of beach towels, and 5 of us all crammed in a friend’s car to make the hour and a half drive to our favorite beach. Gracie was so excited that she rocked in her seat, a stim I haven’t seen from her since she was really young. She had been talking about it all week, and was thrilled that it was finally happening.
However, when we got there, she suddenly seemed... off.
She wasn’t diving into the water like she usually does, and for once I didn’t have to beg her to not swim off into the Atlantic Ocean. She stood there, listening to my friends and I all joke around with each other, and anxiously watched me. I got her to laugh a few times, gave her a piggy back ride in the water, encouraged her to splash me (which obviously she did - what younger sibling could resist THAT?). Our friends asked her about sea animals and showed her swimming tricks. But I could tell her focus was elsewhere, and she repeated the schedule for the day over and over again, a key sign she’s stressed out: first swim, then lunch, then sandcastles, then pack up, then drive home, then shower, then birthday, then pizza, then cake. Over and over and over again, until she finally passed out on the car ride home.
As she snoozed away in the backseat, I wracked my brain trying to figure out what I could’ve done differently.
We’ve never gone to the beach before on her birthday, and maybe the anticipation of the cake and presents at home was too much to bear. Was she worried we’d get home too late? Was she angry that she couldn’t open her presents right away and had to wait until later? I could only speculate, and trust me, I did. A lot.
But the second we got back to our apartment, everything was completely back to normal. She was thrilled with all the incredibly thoughtful gifts all of our loved ones got for her. She happily snacked on mac and cheese, macarons, and cake. And for days after, all she could talk about was how beautiful the beach was, how much fun she had swimming in the ocean, how cool the sandcastles we built were. And I tried not to look exasperated as I told her how happy I was that she did have a good birthday, after all.
As I settled down to try to write about her birthday, I had WAY too many sappy, reflective sentiments rushing around in my head. I compiled all her milestones from the past year, I made promises to her for the year ahead. I even considered finding time to take a special portrait of her to signify the start of a new spin around the sun.
A few abandoned drafts in, nothing I had written felt *real* enough, and I realized that maybe it was because life just isn’t like that, for anyone.
Life is messy, and uncoordinated, and chaotic.
Gracie DID have a great birthday this year, even if anxiety and frustration reared its head once or twice. And one of the best parts about this year is that I was able to actually be present for it. I purposefully took time and space to care for myself, feed myself, take breaks. My friends all involved themselves in serving dinner and dessert, cleaning up birthday wrapping paper, finding a silly show to watch after Grace escaped to her bedroom for some time to unwind. And at the end of the night, when all of our friends went to say goodbye to her, we found her curled up in a rocking chair on our porch, sound asleep, with a tiny, peaceful smile on her face.
Sometimes it feels like everything about our lives together involves a careful balance, but our lives are just as unexpected, crazy, and human as anyone else’s.
