The Punches Just Keep on Coming

The reality of Evelyn’s diagnosis of Rett Syndrome, and all that it entails, still surprises me at times. The fact that it can alter even the simplest things catches me off guard that it feels like a punch in the gut all over again. Something as inconsequential as going out to eat, which if you know our family you know how much we love food, can become the biggest feat and a simple pleasure that we do not partake in often.

Stephen and I were out on a little day date not that long ago to one of our favorite sushi restaurants. It is a typical sushi spot, small tables, cramped quarters, and lots of rearranging things and shuffling of plates to make room for the next dish coming. We were fully enjoying our lunch when a mom walks in with her little girl, this doesn’t seem like anything out of the ordinary, but I couldn’t stop watching their interactions and how their meal was progressing-it was so easy. The little girl takes her seat next to her mother, all on her own, has her cup right in front of her, is brought a bowl with hot soup that she eats with delight, and they share a main course that the little girl feeds herself with training chopsticks (you know, the ones that are tied together with a rubber band making them more kid friendly). Each bite so carefully taken from bowl to mouth, bowl to mouth, without dropping so much as a grain of rice on the floor. It was a “normal” meal and it is something that I found myself wanting to be able to do. A mommy-daughter day out where we can chat and share a meal, and just make beautiful memories.

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I commented to Stephen how even though we are a year into our diagnosis seeing everyday, typical, interactions between a mom and her daughter still hits me just as hard now as they did a year ago. If I were to attempt a lunch like this with Ev it would look much different than what was happening just across the way from us. I would have to lead Ev into the restaurant, making sure she doesn’t trip on anything or bump into the wait staff with their trays of food, request a table probably in a corner somewhere so that Evie can have a little nook to help keep her body in place while seated. I would have to clear off the entire table to accommodate Evie’s wide sweeping motion of her arms that happens often and without any control on her part. She would not have her own cup or soup in front of her as she would accidentally knock it over trying to tell me she wants some of her water or a spoonful of soup. I would have to feed her every bite of her meal, and even before that I would have to try to order something that I think she would enjoy without her being able to tell me otherwise-the only indication that I made the wrong choice would be her blatantly refusing to open her mouth once said dish arrived. There would be food all over the table and floor, and I would be trying my hardest to carefully help Ev eat so she wasn’t covered in it as well. This is all barring that I haven’t had to pull out some device in order to help keep her calm so that we can prolong the lunch long enough so that I would be able to eat as well. These are situations that to most are so effortless and so simple but have the greatest affect on me.

I would love to say that I am brave enough to try and venture out to have a meal by myself with just Ev and I, but the truth is, I don’t think I would. I would definitely take her for a treat somewhere, just the two of us, but to be able to sit down to a full meal from start to finish without any support would be something that I would not walk into lightly. As we move along in this journey I know I will become more bold and a bit more brave because she calls it out of me. I know she deserves to enjoy the simple things in life, and however challenging these simple things are for she and I to do, I will do them because she deserves it. She did not ask for this life, to not be able to control her body movements, to lose the ability to feed herself or ask for the food she wants to eat. She deserves it all and so much more. I loved watching the interaction between the mom and her daughter at lunch because it is something so foreign and profoundly simple. I am sure the reality of Rett will hit me again with something just as “ordinary”. Until then I will put my fighting gloves on, for myself and Ev, and keep moving forward trying to give my girl the best, and most beautiful life possible. The simple things may not be so simple for us, but they are so worth it and not to be taken for granted. 

Stephen Fowler