For several weeks I have been trying to write the story of our FPIES journey. I wanted it to be my very first post. It is, after all, the whole reason for the blog. It is also the first stop I make when visiting other blogs. It’s how I understand where the author is coming from and connect with the family’s struggles. It is perhaps the the most important part of the blog. And now here I am at my fourth post and I still haven’t shared our story. I feel like I owe you an explanation.
First, you should now that I am a scientist. I am a good scientific writer. I can explain the facts and present data in my sleep. I have spent years practicing a style of writing that denies any emotional connection. I like it that way. I do not like to show my emotions. I do not like to make myself vulnerable, yet I can not tell our story without inviting you into my home and my heart during a time that was so very emotional. I must show you my vulnerability.
I want to tell you all about E’s symptoms, how we knew something was wrong, and how we kept being told that nothing was wrong. I want to tell you everything because I want you to understand. I want to justify my reactions and show you that I’m not just an anxious helicopter mom (I don’t deny those traits, but there is more to it in this case). I want you to know you aren’t alone. That we’ve been there too. But at the same time, I don’t want to talk about it. I don’t want to go back to that time. I don’t want to relive the anxiety and fear and uncertainty and the pain.
Another issue is that it’s difficult to write a coherent narrative of that time. My memory is blurry. I was so tired, so very, very tired. I find it hard to remember all of the details and the order in which they occurred. To further complicate the picture, there were so many symptoms occurring at the same time that it’s hard to know what was related to the FPIES and what was actually normal. It’s messy and it’s hard to convey what happened when.
When I make an attempt to put that time of my life into words, it just doesn’t seem right. In some ways I feel like I am being overly dramatic in my description. The words make it sound worse than it actually was. In some ways I feel like all that I experienced was a big over-reaction. It seems so straightforward and I wonder why I felt like it was so terrible. Sometimes I wonder whether it’s worth sharing our struggles at all. Maybe I should stop whining and just deal with avoiding food. There are certainly worse ailments we could be dealing with. In fact, our FPIES story isn’t even as traumatic as other FPIES families (if you get a minute, visit the blogs listed in the column on the right). But, the truth is, that doesn’t matter when it’s your sick kid and you’re the one who is constantly worried. It’s an awful feeling that my descriptions probably won’t do justice.
Then there’s the 20/20 hindsight. I’m pretty sure that is the worst part. When I look back, 18 months later, after over a year of research, after several months of decent sleep, after numerous doctor appointments, when the details are in black and white…it seems so obvious. I wonder how I could have missed it. I wonder why it took so long. I wonder why I made the decisions that I made, why I jumped to the conclusions that I did, why I let my son suffer as long as I did.
Logically, I know that this is all silly. But on an emotional level it is still so raw.
So that is why I have not posted our detailed story yet. I will. I know it is important. It is important to everyone who reads my posts to know where I am coming from. It is so important for other FPIES families to know that they are not alone. It is also important for me to recognize my strength in getting through those endless days and to begin to accept that I don’t always have all the answers when I want them…but I will always find them eventually.
In the meantime, I have posted an outline of our story. It’s the “scientific” version that is my best attempt at giving you an overview of the past 18 months. There’s very little detail or emotion. That will come. Eventually. Thank you for your patience and your support.**These reflections and the conclusions that I came to about why I am struggling so much to write our story remind me of Brene Brown’s work on shame, vulnerability and living wholeheartedly. It’s really interesting work. Check out her page if you have some time: http://brenebrown.com/