This year, for Trach Awareness week, we asked our StomaStoma family a question as part of our giveaway: "What things you would want those who live outside of #trachlife to know about your life/ relationship to living the trach life?"
The answers were honest and vulnerable and real and we wanted to share them here for anyone out there interested in an inside look at trach life:
I would want people to know that Trach life doesn't define our Cruz. He has a Trach, but we will not let that define his life! He is full of happiness and smiles. He brings light into our lives! I hope to share that as part of Trach awareness week with my family and friends!
I want people to know that even when they ask to help me, I most likely will not accept it but I want to. I'll act like super mom but on the inside I'm crying out for help... so I need them to say specifics like "are your other toddler girls allergic to anything? I'm bringing you dinner tonight at 7." & ACTUALLY follow through... not just "let me know if you need anything" because I'll most likely forget or feel like I'm intruding if I ask personally. I also don't want people to fear the machines and just see Oakley as the happy beautiful baby he is.
I want Everyone outside of this Journey to know That Even though I carry The Weight so Well for the ones looking in. that it doesn't mean it still isn't heavy, That My Life though it has Changed tremendously (we had to move states to bring her home) it Is a beautiful Life. That I don't mind Questions of any type and That When I'm out in public It's not nice to stare. Come make small talk I love to talk about my Miracle Wynter.
I would want people to know that I'm no "stronger" than they are. That any mama would do what I (we) do for our babies. That this life may not have been chosen, but its beyond gratifying and humbling and rewarding. Milestones are bigger. AND ITS BEYOND WORTH IT. A thousand times over.
To still be inclusive to both parents and children.
The load is heavy. The anxiety is high. Just because we carry these things and hide our true feeling doesn't mean it is easier for us or we are "meant" for it. Medical mommas rise to the occasion, some days it easier than other days. We aren't super human. It's still hard and heavy. The only thing that isn't hard to do is love our kiddos.
Life is still so good. It looks a lot different than we thought it would but it's still wonderful. We are so grateful for our babes trach and the world it opened up for us! Be patient with us, we are extra cautious and take 1,000 times longer to get anywhere but every bit of "extra work" is worth it. We'd make the choice of a trach over and over again
I would want them to know the extent of the trauma that we went through to get to this point. Just because we are all finally home together under one roof doesn't mean all the worries and fears just disappear. This life is hard but so so worth it
I would want people to understand that even though trach life is difficult and stressful, we love the trach itself because it has given our little guy the opportunity to grow and thrive. To the outside world, trachs may seem scary and foreign, but they're simply medical tools that help kids with airway or lung problems. Just like kids with poor eyesight need glasses to see and kids with hearing difficulties need hearing aids to hear, kids with airway or lung issues need trachs to breathe.
That even though it looks like we know what we're doing...we don't! I mean yeah, we're trained and experts on our son but if you don't think there's a WTF are we doing moment every other day, you're wrong lol. Also, just that we're not any more "amazing" or "strong" than anyone else. Our son having a trach and being medically complex has made us better parents to him and our older son, but we're not "better" or more special than other parents. We do what we have to do because we love our son and his trach is just another part of him to love
I would love those that don't live the Trach life that we are just a normal family living everyday the best way we know how. We are resilient and strong
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