I have thought of writing a blog for years. Literally. I have an interesting life story that I always felt like I would benefit others if I shared it. When I was a teenager with a tracheotomy there were no other teens that I could connect with that had a trach. I couldn't find any on the internet, I knew of none in real life and I knew of none that had a trach that was an otherwise fully capable and functioning person. I also know that there are parents out there that have children with trachs that are either non verbal because of age, ability or otherwise. As a mom I have to think that they wonder what their child is thinking, feeling or what it must be life for them. Well, I would like to think I could answer some of that. I had a trach from fifteen months old until around four, from 12 to 18, and now at the age of 28 until who knows when. I have lived with a trach through several key points in a persons life and can share some insight as to pain (physically and emotionally), dealing with bullies, dealing with my own thoughts (especially now and as a teen), and now dealing with having a trach as a wife and mom.
I also started this blog for my children. So one day I could show them that their mommy was strong. So one day I could inspire them. Right now my twins just turned five and my daughter is three. They may or may not have some memory of all of this, but right now they do have the emotional turmoil and know that mommy leaves to go stay in the hospital, a lot, and that this is really, really hard for them... for me. They are asking questions that most kids ask and I am finding that their friends are asking. We have always been medically honest with them and this is no exception so as they have to start fielding questions from their friends, or watch me field them while we are out and about, I want to have a resource that I can have their friends' moms read to help explain to their children why Parker, Raygen and Emma's mommy is different. Right now their best friend thinks I have super robot breathing and that's pretty cool. But as they grow up I don't think it will be that easy and innocent, although for my kids sake, I hope it is.
As far as an update on me. Well...I'm miserable. I have said that more times than I can remember. I am sad, angry and frustrated beyond all reason right now. I'm sad for what my kids are having to experience, for what I am having to experience and for my husband who has to try to pick up my emotional messy pieces and hold me together when I just simply can't. I got my trach on October 8th. By all medical means I should be the better than I have been all year by now. Yet once again my body has other plans. I have had pain. Severe, increasing on a daily basis, pain. At this point I would take my ten days of active labor with my twins pain over this pain. I am physically and mentally exhausted from the pain. The theory at this point is the tube is either too big and irritating something, too long and irritating something or it's just irritating something. The pain radiates from the right side, above my stoma (where the trach tube extends through my skin) and the central point of pain is up under my tongue/dead center of my neck. It feels like I'm being stabbed with a hot stick non stop, swallowing hurts, talking hurts, turning my head hurts, basically everything hurts. Raising three kids really hurts because I can't do anything. We watch a lot of movies, eat food I would rather they didn't eat and do way less physical activity than I want any of us to do. I just can't keep up with them. Thank God for my husband and sister (and soon my mom) for helping me daily with them or I would be in over my head even more than I already am. When help is here (aka I'm not alone with my kids because I refuse to take narcotics when it's just me with them) 6mg of Dilaudid, 5mg of Ativan or Valium and 3-4 tsp of Benadryl (to combat the inevitable itchies) doesn't even take the edge off of the pain. If I'm lucky it will at least put me to sleep but at this point it's all just giving me a migraine. I. HATE. PAIN MEDS. With a passion. I develop tolerance way too quickly, I hate not feeling like I'm in control and I suffer withdrawals severely. I remember several times having morphine withdrawals as a teenager that still to this day make me anxious. I refuse to go through that again. I am praying that surgery number 71 on Monday will relieve this pain. It just has to. Something has got to give.