When I was a teenager I got a tracheotomy put in on December 7, 1998 in an emergency procedure. I was told at that time that they weren't sure if the tube would ever be removed, but I vowed that it would be. I slowly worked to build my tolerance of physical activity and did activities that I thought would "strengthen" my airway so that one day I could be trach free. When I turned 18 I asked for them to try to remove my tube. Non one thought that it would come out and if it did that it would stay out for very long. On August 7, 2003 I had my trach removed. I remember being woken up in the operating room to see how my SAT's would manage when I was awake. I remember the bright lights, all eyes on me and being helped into a sitting position to see how my airway would react to the activity. It stayed open. There were tears cried by many, many who never thought I would become tube free. The simple fact that my airway then remained to stay open for 10 years, 2 months and 1 day is incredible. The fact that the reason I need a tracheotomy is supraglottic stenosis now (compared to previously when it was subglottic stenosis) is incredible. The fact that there is so much I wish I had done with my kids before getting my trach put back in makes me sad. Its like I have this bucket list of items that I wanted to do with them that I can't do, (as my husband says for now, I, however, am feeling really down and just know that right now I can't and that part hurts.)
This whole year medically for me has hurt. Emotionally. Physically. It has hurt my family, my kids and me. I was always asked growing up if I could change it (it being my airway) would I? I always answered no. I wouldn't change it for me, for me it has led me to live life on a deeper level than my peers and for that I am grateful, but I would change it to stop the hurt that it has caused my family. In my narrow mind it never occurred to me that one day this could all flare up again but that when it did I could possibly have kids and how it would affect them. Well, now I know. This last 10 days since I have received my trach have been some of the absolute hardest on me (physically, mentally and emotionally) as well as my children.
When I created this blog I wanted it to be this uplifting, positive and hopefully inspiring journey of just being different in general as a mother. I had to slightly modify my lifestyle, my voice was different and I had some scars. I didn't realize that I would be creating a blog to follow my journey as a mom with tracheotomy. While I hope that information on here becomes useful for someone, I can't always promise it to be roses and rainbows because frankly I'm pretty upset about it all at the moment. Hopefully as time passes, and the pain lessens, I can take on a more positive perspective. For now, I'm hanging in there. The best way I can and that is with six little arms wrapped around me giving hugs....except they can't really hug my neck anymore because if they hit my tube it hurts too bad. That has to be one of my top regrets, I didn't get more of their warm little arms curled around my neck, with their heads nuzzled under my chin snuggles. It's been 11 days and I miss those the most.