Thursday was a sacred day. As I made scrambled eggs for breakfast, Eloise happily rolled around on the floor — entertaining herself with whatever objects she found nearby. She seemed so happy that even once the eggs were done, I decided to take a few minutes to empty and re-load the dishwasher. Then I sat E in her normal-kid high chair and we ate the eggs together — and that was after already having a 180ml bottle 45 minutes before.
A list of seemingly normal, everyday actions — but to me, they were special. Because, as I sat there, alternating feeding Eloise and I, I felt deeply satisfied. These simple events were almost holy to me, because I wasn’t sure we would ever get to experience them. I knew, as I chewed my eggs and smiled as Eloise worked on heres, that if I meditated on the experience for long, that I’d find myself weeping with joy.
You see, it feels like right now we are living in a magic fairytale dream.
Eloise and I have been on multiple one-hour walks outside over the last week — once even with Brian and another time with some new friends and on Thursday even to the Botanical gardens — and she’s been pretty content on them. I’ve popped her in the car for a quick grocery run and she’s squealed with delight both in the van AND in the store. Shoot, since stopping antibiotics last week (it turns out one reason she wasn’t eating, drinking, or sleeping so well because she had an ear infection), she’s even been eating a small amount of solids again and has gained some weight.
Life feels manageable. Life feels good. Life feels full of peace and joy and rest and contentment.
Last year at this time, if you were following, you’d notice that our lives were totally different. Eloise was crying from pain all the time due to her food intolerance triggered reflux. She wouldn’t let anyone but me feed her — and I was also the only place she would sleep. Feeding her took 100% of her awake time and all of my mental energy and she still wasn’t getting enough. I was personally dropping weight rapidly because I was on an extreme 17-food diet to try to find foods that wouldn’t give Eloise pain. Our doctors in Tallinn felt more like enemies than helpers. Eloise would start wailing as soon as we would get into a car and then scream bloody murder the moment her physiotherapist touched her body at all. For any appointment we had, in order to make sure she got enough food and she didn’t get bad reflux during our time there, I’d have to go 30-45 minutes early to try to feed her in the parking lot. And then stay another 30-45 minutes in our car to repeat the process. The thought of being able to make my own food, do the dishwasher, read a book, or even going outside for a few minutes with her, let alone myself, seemed nearly impossible. And Brian was still working fulltime.
Surprise surprise — I was not doing okay back then. We had a baby who was always unhappy and in pain and needed constant attention. It’s no wonder that life felt really overwhelming. I was even still grieving the loss of a “normal kid.” I had no idea if our life would ever or could ever get any easier.
But here we are, in an almost opposite world a year later. A world full of goodness and hope and joy and laughter and love and freedom and — for Estonia — great summer weather.
- No, Eloise still cannot feed herself at all. (Though she sometimes grabs stuff from her highchair tray.)
- No, Eloise still cannot support herself on her arms nor crawl. (Though she constantly rolls to her belly.)
- No, Eloise still cannot sit unsupported. (Though she seems to have the strength.)
- No, Eloise still cannot stand up on her own. (Though she insists literally hundreds of times every day that we help her get on her feet.)
- No, Eloise still does not make eye contact. (Though she’s starting to look at our faces more, and her vision is improving.)
- No, Eloise still does not make consonant sounds. (Though she babbles and talks with the most adorable voice that will melt your heart.)
But who cares that she’s behind? Who cares there’s a long list of things she cannot — and may never — be able to do? There’s so much she CAN do. There’s so much she IS. This kid is interested in the world. This kid can grab my glasses off my face so fast at times that I don’t have time to react. This kid has a favorite color (yellow). This kid “talks” all day long. This kid smiles big and laughs with delight when I come home from work.
She’s happy. Really really happy.
And, really, THAT was our dream. Sure, when we imagined our future kids, we saw “normal” kids, but more importantly, but we imagined was our kids were, by and large, happy.
And, at this stage in life, Eloise is.
Which means right now it feels like we are getting to live out our dream. Our lives are in some golden age where we all just feel really content. Are there still problems? Yes. Do Brian and I still sometimes get short with one another? Yes. Does Eloise still sometimes get annoyed or feel pain and let us know things are not okay? Yes — every day.
But, regardless, I just feel so grateful. Things are good. Really really good. And I’m going to savor them for however long they last.
So. Enjoy a few snapshots of some wonderfully happy moments these past few weeks.
Hugs, hugs and so many hugs from us.
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 