For those that don't know much about tracheostomies there are limitations and machines needed several times per day. I have to have with me, at all times, a suction machine. Those without trach's can clear their throat or cough when needed to clear secretions, I no longer can. The trach causes the airway to produce more secretions as a protection, cleansing measure and the inability to cough means that I have to suction to clear my airway. If you don't suction often enough you can actually have the tube become completely plugged and not be able to breath. Personally, suctioning grosses me out, but it's a necessary evil. I also have to sleep with a machine that generates mist to keep my airway and lungs hydrated and the secretions thinned out. Without my machine at night my chest, lungs and airway ache and feel dry. I then not only am short of breath from my airway but I am short of breath from dry lungs.
How could I expect my children to understand the need for these machines? To understand that mommy can't sleep in their bed anymore when they have a bad dream because I need my machine? My first humbling instance was when my son, Raygen (pictured), gave me a kiss goodnight, then kissed my tube. "Mommy, you're still beautiful, even with your tube." I don't know how he knew that I was feeling pretty low about my looks, but hearing his innocent, five year old self proclaim that mommy is still beautiful to him was when my perceptions of how they can adapt started to change. My kids stayed positive, understanding and accepting when I refused to leave the house (therefore they didn't go anywhere either) for the first five weeks of having my tube with a few exceptions. There was no park, no fun activities, nothing, as I had wanted to crawl into a hole. The first time we ventured to the park another little boy asked me what that was in my throat. All three of my kids, very politely, explained in five year old terms why I had it. They concluded it with "because of her tube my mommy can be a better, not so sick mommy so we love it." Wow. From that moment on I, for lack of a better term, sucked it up. If they can accept it and realize that it is because of my tube that I CAN be a mommy, that I am STILL alive, then why can't I?
Life is different. I carry my machine. I try not to raise my respiratory rate and I walk slow. Talking hurts, all the time. You know that feeling of resistance you get when you blow up a balloon? I feel that same resistance every time I speak and most of the time I don't have a "real" voice. But my children happily asked to learn sign language and are getting great at reading lips so I don't have to try to talk. We have started to try to do fun things again. More playdates, more parks and this weekend we went to the ocean. I can now say that I have suctioned my tube while standing in the ocean. While I hate to do it in public I realized at that moment that I was doing something that probably only a couple of other people ever have.
It's time to be optimistic. I have a tattoo that says "Just Hope..." It feels good to have hope again.