I then remember being a teenager and having a t-tube. A t-tube is a specialty form of tracheotomy that is shaped like a T and therefore goes both up and down in my airway past where it enters through my skin. This leads to not having to use trach ties to hold the tube in and also helped me to maintain a bigger sense of normality as I was able to still mostly breathe through my nose and throat. I was able to keep my tube capped off for the most part and therefore could talk and function semi normally. There was a span of time though where I couldn't tolerate it being capped and so I kept an HME (filter) on the open end of it and would have to plug it when I wanted to talk. I learned how to "casually" rest my arm/hand across my chest so it would (hopefully) look natural that I was plugging a hole in my throat to talk. I remember asking 'why' every single night as I hooked myself up to my mist machines that would help my lungs regain lost moisture. (This is where writing can become hard for me...as I sit and type and have tears streaming down my face. Tears that no one sees, that fall on my own chest and make me question writing at all). I remember crying myself to sleep and learning how to cry softly and silently so I wouldn't have to get up to suction again. I would cry until I fell asleep and several times would wake up crying still.
When I got my trach again when I was 27 I quickly fell into a deep and dark depression. I had three beautiful children, a husband who loved me and more family and friend support than I had ever had and I still succumbed to this dark pit. I found myself back to the "why" phase. Instead of creating a goal and something to look forward to I found myself questioning why of everything. I remember the day that I went to an appointment in San Francisco by myself with my kids. It was during that appointment that the doctor informed me that she had sat at a board of six prestigious West Coast doctors and had presented my case. It was their consensus that I was going to be trach dependent the rest of my life. It was on that day that my kids hadn't heard my voice in over three weeks and they heard the news that mommy would forever have her tube. I couldn't talk to them to explain to them that I wasn't giving up and that I'd find a way to get it out. It was an overwhelmingly sad moment. I did end up getting my trach out but I can still remember just how sad and lonely I felt at that point. I had no answers to all of my 'why's' and I felt defeated.
I've always, quickly, denounced the idea of working in Otolaryngology. It has been suggested to me several times that it would be a field that I could contribute significantly to. Honestly, it grosses me out. My own trach grossed me out as a teenager and as an adult. I knew exactly what specialty I wanted to work in and I had a plan and goals of how to do it. Then I met a little boy who opened my eyes. One of my kids friends at school has an airway complication; different than mine but similar enough that we both have had several of the same procedures done. We have similar voices, he sees the same doctor I saw as a child and we share a lot of the same heartache and worry. It was after meeting him and hearing his voice and hearing of his own self doubt and questions of 'why' that my why began to get answered. Indirectly he has opened my eyes to the full circle awareness I now have of my own medical conditions. I don't know how to help answer his why's, and they break my heart because it's exactly what I went through, but I know that I want to try. I want to contribute back to the field that has worked for 29 years to make me better. It is through him that I have now decided to work in Otolaryngology in some capacity to help the kids who are where I was all those years ago. I remember feeling so alone, so isolated and like no one could come close to understanding what I was feeling. I want to be that life raft for any child, teen or just person that is feeling overwhelmed by this condition. I still don't know exactly why this has happened to me, but I do know that I can create a positive outcome from it and that if I can help even just one person then it will be worth it; and in the process I may just finally have my 'why' answered.