It's 2 am and I still can't sleep. They say if you write about something, you can work through it and find some closure. I don't know. Maybe it's nothing, but I feel so beat up I'm going to at least try. I'm going to write a letter to the people I wasn't able to speak clearly to today. Will I send it? Probably not. But maybe it will silence the sounds in my head.
Dr. Dr. Devoe and Donna,
Today didn't go as well as I'd hoped. I am sorry that Sydney was unable to complete the skin-prick allergy test. She really is a wonderful child. Normally, she doesn't have a problem with medical procedures. Maybe it took her by surprise. I never thought you'd want a test today. We are usually thorough about walking through any procedure step-by-step at home - before we do it. We didn't get a chance to today.
I am sorry if Sydney frustrated you. I was shocked by her reaction. She doesn't have that look of terror in her eyes over too many things. I had no choice but to take it seriously. It may have been just a simple skin prick test to you, but to a frightened little 6 year old, it was terrifying. I knew as soon as she started crying that you'd be mad. I knew that you would resist when I told you what I wanted tested on her bloodwork.
I don't get emotional about many things. Not weepy-emotional anyway. But when I feel backed in a corner over Sydney's food allergies I find it hard to maintain composure. Never did I expect to be met with resistance in her allergists office.
Sydney almost died 5 years ago. She was a sweet 19 month old baby without a care in the world. In an instant, she almost died. Not quietly, silently slipping away. But a violent, wrenching, painful death. I will carry the image of her on that ER table to my grave. I must. It has kept me vigilant these last 5 years. It has kept her alive.
Sydney has as normal a life as I can give her. She has many friends who love her. She is very smart. She is very funny. She cares so much about the world around her and the people in it. But there is so much she doesn't know. She doesn't know what it is like to eat in a restaurant. She doesn't know what school is - we homeschool. She doesn't know what it is like to leave your house each day without having to make sure your life-saving medication is with you. She just doesn't know. My desire to have her blood tested for so many foods was an effort to help her become just a little bit more normal. If there is some food we avoid, that we really don't need to, I'd like to change that.
Donna, you were impressed that we have gone 5 years and never had a reaction. You congratulated us. Whatever I am doing, it is obviously working. I understand Dr. Devoe told you just 5 foods could be tested for. I know that. But how could you tell me it is MY CHOICE to keep those other foods out of my house? How many children have you seen that are allergic to just one food? Not many. What did you want me to do? Sit her at my kitchen table and give her a shrimp and see if she dies?
Testing for just 5 things seemed like a punishment for Sydney's behavior. Yes, I understand more blood is needed for more things. But at 2 years old, she was tested for 10 things. Why would you limit it now? It was spiteful. As was slamming the file, and the door, as I called after you asking you to come back to discuss it. I've never had a medical professional be so, well, unprofessional before.
I will never back down when advocating for my daughter. She lost an entire year seeing her grandparents because they refused to "get it." I have spent countless hours educating others on food allergies. I have transformed my life and my kitchen in order to create as normal food experiences as I can for Sydney. I have lived in fear for 5 years. I will not have anyone judge my family for our CHOICE to keep highly allergenic foods out of the house until she is tested.
We're going to try this one more time. My hope is that you will remember you are dealing with a little girl. A sweet little girl who was just scared and needed some understanding. I am going to focus my energy on a good encounter for our next meeting. I hope this wish somehow reaches you and you receive us in the same spirit.
Mood : beat-up
Read the rest of Dear Dr. Devoe & Donna…
Here's the cutie!
