When you do things for a long period of time, you get into a routine or pattern like you are coating through it. But that can change within a matter of minutes. This can happen a lot while living the Trach life. You think you are past the scary moments of seeing your child struggling to breath for one reason or another and then at any moment they decide to throw you a curve ball just to make sure you are paying attention. It’s like they don’t want you to get to comfortable with a routine or with life itself. They like to give us reminders that even though they can be stable and able to do things on their own, that can all change in a second. Today I was reminded how quickly circumstances can change and just how precious life really is.

My daughter is 10 years old and has had her Trach since she was 3 weeks old. She has been fairly stable most of her life with the exception of a few illnesses/viruses along the way and that of course is just part of Trach life. There are always big and small set backs that occur, as well as times when you are “coasting” through life with your own routines. It is important to do things within the Trach life that work best for you and your trachie. Just like everyone else we have certain ways that we do things because that’s just what works best for my daughter.

Today after giving her a shower, we were doing our usual routine of changing her Trach, g-Tube care, getting dressed, and all that fun stuff. While I was changing her Trach, she was playing around, covering her stoma with her chin and blowing air out of it. We were laughing and being silly, then in a split second everything changed. She began to struggle to breath and coughing. After several tries, she coughed out a plug (mucus chunk that blocks the airway) larger than she has ever had in her entire life. In those moments, the smiles and laughter melted instantly. The silliness turned into shock. She recovered quickly and was back to her playful self within a few short minutes. I, however, was not. All of the fear and anxiety that use to haunt me in the beginning of this Trach journey came rushing back. I know that the circumstances could have been dramatically different. Although I never really thought we were completely “out of the woods” from the dangers of plugs and other issues that come with the Trach, it wasn’t something I worried about as much as I did in the beginning.i mean we have been living the Trach life for 10 years, we’ve got this... until that moment when you get hit with a ton of bricks that stop you in your tracks.

When something like this happens, after the shock wears off, you reflect back to those moments of struggle and fear. You think about the “what if’s” and the almosts. You think about what you could have done differently. You think about if you had done something different would the outcome have been good or bad. The hours and days after an episode like this can be pure torture for some parents. Yes, I am happy that my daughter is good, but that doesn’t stop my mind... my thoughts continue to go back to those few terrifying moments trying to analyze and break down each second, not to dwell on it... but instead to figure out what I can do better if this should happen again.

~Tonya
Founder
Moms of Trach Babies

Special needs parents often struggle with a variety of different things while raising their special children. We all fight to make sure our special kids get what they need medically, physically, and emotionally. But there is one thing that hits close to home for me that I think most, if not all at some point, special needs parents deal with. I want people to not be scared of my child! I want them to look past her medical diagnoses, past her "disabilities", and see the actual person! They need to see her sassy charm, her funny personality, the beautiful little girl that loves to play, and loves people so much that she will wave hi to everyone that passes her no matter where she is at the time. My sweet girl doesn't think she's different from anyone else, but so many people treat her like she is just because they look at the disabilities instead of the child. So, my friends and family, please do me a favor when you see another special needs child remember to look past the disabilities and see the beauty of the child. Don't be the next person to hurt a child like daughter or a special needs mom like me.

Do you ever have those late nights that you're tired physically, but mentally you can't get your mind to shut down? It's not that you're thinking about any one thing specifically, you just have random thoughts going through your head and you find yourself sitting in the dark, just watching your child sleep? She's laying there calm... Peaceful... Breathing, sleeping, dreaming, and curled up like a twisted pretzel hugging her stuffed animals/whatever toy she fell asleep with. For me she's also hooked up to her feeding pump. The only sounds in the house are her breathing, the pump, and the AC. These are moments are far and few between for me, but when I get the chance I take the opportunity to enjoy them. I love to watch my precious girl sleep.

It's times like this that thoughts like what my sister-in-law said to me not long ago pop into my head. She came to me at a cookout we were having and told me that she wanted me to know that she and her boyfriend talk about me. They talk about how they don't know how I do it, they don't know how I do everything that I do for my daughter. She tells me I'm such a good mom. She's told me this before and it brings tears to my eyes every time. I don't hear these things often and I don't expect to, so it always brings out that emotional side. I take care of my daughters "typical" and medical needs. I make sure she has what she needs and I love her unconditionally. She is the center of my world and my hero. I can't imagine living my life any other way. We sacrifice everything to make sure our children have what they need medically, physically, and emotionally. We put everything in our lives on hold to care for them... We often lose friends, quit jobs, become home bodies, sometimes stop going to family functions, and so much more. That's what life of a special needs mom is all about. We do it for our babies.