It’s been a hard week to sit down and write, but sometimes those are the weeks when I need to write the most.
Sunday was a really hard day for me. Monday was a really hard day for everyone. Tuesday should have been a day to take a deep breath and take our minds off things a little bit. We started the evening off by attacking the house – unpacking everything, cycling through the laundry, working together to clean up E’s room. (Trust me, it was long overdue.) I needed to make a grocery list, and somehow in the process of pulling out random ingredients I decided to clean out everything in the pantry and choose some recipes to get rid of those items that had been hanging around for awhile.
I have no fewer than fifteen types of flour, plus lentils and rices and farro and quinoa, pastas and polenta and corn meal and grains of all types. It looks slightly ridiculous on the table, all spread out – but we use them for recipes all the time. The thing is, the partial jars and bags start to add up, and so it was time to use up those last cups and half cups and partial boxes and bags and move on.
I also cleaned up the snack shelf and bagged a good portion of it up to take to work to share. I laid out a few things on the counter to be eaten – the last of the girl scout cookies, a mostly eaten road trip bag of twizzlers – our favorite “stay awake” snack while driving.
We were making good progress on the house, and so we asked E if she wanted to stay up a little later and watch Amazing Race – we record it each Sunday night and the three of us watch it together sometime during the week. I put some snacks together (from the new pile) for M and E, and we sat down to watch the show. Two minutes and two bites into the show we knew something was wrong. She was having an allergic reaction to one of the ingredients in her snack. I grabbed the packaging and saw the culprit immediately and I cursed my lack of attention. She spit everything out, and started rinsing her mouth with water while I grabbed the Benadryl out of her emergency pack. She took the Benadryl, and we watched her for a moment to see if any outward signs of a reaction were appearing. The Benadryl is the treatment for any type of surface reaction – like a rash or hives. Any other reaction requires more serious attention. A couple of tense minutes passed as I tried to stay calm on the outside while screaming at the top of my lungs at myself on the inside. She felt a change in her throat, and then the vomiting began, quick and violent. Marcus stood her up, pulled her track pants down, braced her body against his while she turned her head away and closed her eyes for the impact.
An epi-pen is administered with an auto-injector – it’s not given like a shot, needle slid in under the skin and then depressed. Instead you make a fist around the injector, hold your fist away from the upper thigh, and swing with all your might. And then you count to ten while the blood runs down her leg and the tears run down her cheeks and you hate yourself with all your might. The shaking starts, and she looks ashen and frail. M scoops her up and races out the front door, putting her in the front seat so he can watch her as he rushes to the ER.
The little one never wakes up, and so in an instant I’m left in a silent house, alone with my fear and my guilt. I sit on the edge of the couch, until the guilt fills the room and presses in on me. I move to the bathroom and I sit on the floor and cry. I’m always worried that she’ll be out in the wide, wide world somewhere without me and she’ll eat something that she shouldn’t – despite her overly careful disposition with food. I’m always worried about the way each reaction will be more severe than the last, and I worry about the cumulative effect of one too many errors. I wonder why I should even bother with worrying about what the world might do to her because I’m her mother, and I did it to her. I failed her, and on the most basic level.
When she was first diagnosed with a tree nut allergy at the age of four, the allergist assured us that it was an easy allergy to manage. Tree nuts don’t hide in ways that peanuts or soy or sesame or any other number of common food allergens tend to do. But in the last five years I’ve seen a tremendous increase in tree nuts in everything – for all the countless bags of flours on my kitchen table, there are at least as many or more nut flours on the shelves in the grocery store. I warn her to be careful of all the new gluten-free items, and paleo items – so many of these use nut flours in lieu of wheat flours. Her strongest reaction during her allergy testing was to hazelnuts. You can’t walk into a bakery anywhere without having nutella on the menu or almond based macarons in the display case. Some white chocolates are really almond bark, and nut oils are used in greater and greater frequency.
We watch the Amazing Race teams travel around the world, and she wants to do the same. Can she communicate her needs to others, in foreign languages – and will she have access to the right medical care when the communication breaks down and she’s in trouble? I want her to be able to go anywhere she wants to go and do anything she wants to do, and I want her to do it without fear. I want to not fear as well.
This week is too full of fear for me to comfortably manage – and far too full of guilt. Guilt that I can’t make my niece better and that I can’t stop my heart from breaking over and over again, in ragged edged pieces. Guilt that others wake up and do the same things that I do each day, but have their lives irrevocably changed while I’m just deciding what to cook for dinner. And wracking guilt that a small lapse of vigilance on my part sent my daughter to the hospital for the night.
It’s rainy, and the days plod on, and I plod with them. But I feel like such a failure, such a let down. And I just don’t feel much like talking, so I write.