We recently had an exciting development at the Schulte house. My oldest daughter, age 8, received her very first birthday party invitation! It popped up in her backpack by surprise. A present in and of itself.
We’ve attended many birthday parties as a family, and Miss E (who has Wolf-Hirschhorn Syndrome) has always been a welcomed guest. We are blessed to have the most amazing friends - more than a family could ever hope for. These folks embrace us exactly as we are. And each of their invitations has mattered. Immeasurably.
But without a doubt, this invitation was different. It came addressed to my girl only. And it came from a school friend I’d never met.
Out of love, and out of necessity, my daughter and I do almost everything together - therapy, appointments, activities, errands, you name it. I know virtually everyone she comes into contact with in a given day. So, this invitation was more than a gesture of friendship. It was a symbol of Miss E’s independence.
From the day the invitation arrived, I had to remind myself that this party was not about me. Even though I’ve wanted this for Miss E for as long as I can remember, this was her invitation. I needed to stay in the background.
I tried, I really did.
The first mom overreach came when we went to pick out the gift. I found myself wanting to get something big, something equal in value to the gift that the birthday girl’s family had given us - the opportunity to experience a childhood right of passage. But that was silly and desperate, frankly. Anything more than a $15 or $20 gift would’ve been weird. We settled on an adorable stuffy. Kinda big. SUPER cute.
The second mom snafu came on the day of the party. I was so focused on the gift in the front seat of the van that I left Elsa’s PODD book at home. Her words, for crying out loud. A U-turn on our town’s busiest thoroughfare brought us back to our door, so I could snag it.
We would have been among the first to arrive, but now we were the last. (Three strikes for mom.) Nevertheless, when we arrived, the birthday girl’s mom was there to greet us and make sure we found the party room. When we wheeled into the space, she directed us to a spot reserved for Miss E’s wheelchair, already set up with crayons and coloring sheets.
SO nice. SO thoughtful.
I should pause to say: When kindness is sent in my direction, it’s a delight. But when it’s directed at my girl, I can’t quite handle it. Any gesture of generosity and heart that shows real care and planning can knock me off balance. It’s so touching that it almost hurts. Cue mom tears. The uncontrollable variety.
Perhaps you can see where this is going…
As we listened to music and colored in the party room, I resisted the urge to chat up the other second-grade girls and boys about The Descendants, L.O.L.s, and Girl and Boy Scout life. (Even though this is for sure my wheelhouse.) Good thing I kept my mouth shut, because all of the kids were pretty immersed in their coloring and not talking much. Blend in, momma. Easy does it.
Miss E used her PODD to choose the hues for her coloring sheet, and we chilled and had a super time. Right before we went into the movie, we hit the bathroom. It was a completely normal stop, in that it was time consuming and took us four times longer than everyone else. When we finally got back to the lobby, the rest of the party guests were posed for a picture, patiently waiting for Miss E to join in.
Ugh, here we go.
I took Miss E out of her wheelchair and sat her in with the other kids. (I could have had her walk over, but everyone seemed like they’d been sitting a while, and I wanted to speed things along.) I set her down on the ground, said a quick prayer, and walked back over where the other parents were standing. They started taking pics. The first few photos went OK. But then Miss E started hitting herself. Hard. A behavior we rarely see anymore.
Time stood still for a moment as I looked at the group of kids, in its entirety. All were united in making silly faces, while my girl was whaling on herself, in complete distress.
Maybe I pushed it. Maybe we shouldn’t have come. Maybe this thing, this simple birthday thing - this thing that other kids do every month of their lives - can’t be for us.
Just as quickly as I had swooped Miss E into the picture, now I was swooping her out. Disrupting the picture process. Knowing that 20 sets of eyes were on us as I tried unsuccessfully to stay cool and calm Miss E down. The next five minutes were kind of a blur. The kids and chaperones must have started filtering into the movie theater at that point. I’m pretty sure someone asked if we were OK. I vaguely remember saying, “Yep, we’ll be in in just a minute.” My head was tucked in so tight, trying to keep everyone from seeing my mom tears. My you’ll-never-know-this-hurt mom tears. Tears meant for shut doors and rooms of one.
I pulled myself together, to about the 40 percent mark, and headed into the theater, only to find that the birthday hosts had reserved special seats just for us, with special signs. The kindness of these beautiful people. Lord, have mercy. My control dwindled to about 20 percent at that point. Start the previews someone, please...
I tell you what, I’ve ever been so happy to see Jim Carrey in all my life. I laughed my face off in that movie (SONIC THE HEDGEHOG), and I swear his comedy saved me and saved this day. By the time the film was over, I was composed again. This time, when someone asked me if I needed help carrying things (I was juggling Miss E’s AFOs, which I had to remove during the movie, as well as her syringe and her food thermos), I could say “no” with composure, like the proud fool I am.
Then we returned to the party room for presents. The kids were so excited to see the birthday girl open her gifts that they were almost in her lap. Totally adorable. As Miss E waited patiently for her present to be opened, we talked about what was happening, using the “Special Events” page in her PODD book.
At last, it was time to open the gift from Miss E. The birthday girl LOVED it. Like completely beaming, grinning, dimples-out loooooved it. It made Miss E so happy that she started smiling and giggling, for the first time that day. Then, two other party guests, who know my girl from school (Miss E joins the typical second-grade class for library, music and special events) came over to say hello.
Just like that, the event was a huge success!
As we were leaving, the birthday girl’s dad said something incredibly kind to me. When you have a child with complex needs, you know you’re being seen. You can’t avoid the eyes. But his comment made me feel seen as a mom, and that elicits a different kind of mom tear altogether. The strong, brave, happy kind.
I’ve never felt like such a delicate flower as I did on this day. Holy moly. In the end, trying to make the day NOT about me sure proved to be quite the opposite. But we did it. And, for Miss E, I’m so glad we did.