Eating guacamole at our booth. Her chair pulled up at the side. Her feeding pump going. We were enjoying a family night out. We laughed around the table as my husband was adorned in his sombrero and we sang “Happy Birthday.” Being a dad of two, maybe the staff knew he could use that tequila shot instead of the normal fried ice cream as a birthday treat.
As we got ready to leave, we were hit with two more surprises. Our check was taken away and paid by someone anonymously. It was hard to keep back our tears, and I saw the water swell in my husband’s eyes even through my own blurry vision. We’ve heard that happen to others and have done something similar, but didn’t imagine it would happen to us someday. I do wish we had the chance to say thank you to the right party, so if there’s a chance they’re out there now reading this – thank you! We left a generous tip to pay the kindness forward and as we walked out, we ran into someone who works at my younger daughter’s school. “It’s so nice to see you all out,” she said, “our kids don’t get out much.”
I paused, not quite sure what to say, but also realizing what she meant. Our kids with special and critical needs don’t get out as much as your typical kids I’m sure. But I also knew that being a lower income school, it may even mean sometimes our kids, kids who can’t run outside on their own or feed themselves, don’t really ever get out of the house. Because it’s hard. There are plenty of roadblocks that stop us from taking our daughter out – too hot, too cold, she’s screaming, she may catch something, how would I get her chair down the stairs myself, was there a ramp somewhere, how would I carry all those bags while pushing her… I get it. We get it. But this day was a good day. A great day! Good moods, no sickness and we could go out together as a family. So we did.
We try hard to live life as normally as we can. Do things we would have done if both our children were fully able. So before we went out that night, we measured her food on the gram scale to get to the right fat ratio for her ketogenic diet, pulled her feeding pump and bag supplies together and gathered the medications, pill crushers, tubes and syrings – packing it into her large bag. At the restaurant, we primed her feeding bag and hooked her food up when we sat down. While waiting for our food, we pulled out the pill crushers and asked for an extra cup of water to pull up her syringes of meds.
Is it awkward? It used to be. And I’m sure there are plenty of sideways glances that I no longer notice. This is how we keep her on schedule and practice normal. This is how we live life. While I realize it may be easier to stay home, that it may save me from hearing some whispers behind us, I don’t want our family to miss out on living and being together. I don’t want my oldest to not have her whole family together for outings. I don’t want my youngest to feel like a burden and not enjoy the sights and sounds that she so enjoys just because it’s extra work. I appreciate other kids, because they just ask the questions everyone wonders. What is that tube? Why does she have a hole in her belly? And I explain (or my oldest does), “That’s how she eats. She gets food right to her belly!” I smile. They get it.
So maybe our kids don’t get out as much as others but I sure hope they get out plenty and enjoy what this world has to offer – Mexican music, big sombreros and all.