by “Diagnoses Don’t Define Me” is a common phrase in special needs groups. The text is captioned under images of children doing new and amazing things that defy the odds. You see it on t-shirts and signs for awareness and fundraising. It’s a bit of a way of life, and one of the first concepts that you learn when you join communities and meet other parents of special needs children.
When AJ had his trach placed, it was a medically necessary procedure, and we were told that it was likely something he would need for life. I didn’t really have time to think about it, and no amount of thinking would have changed the path anyway. As a result his trach became our “normal”. When we were finally able to begin the path of airway reconstruction for him, the team at the hospital was very clear with us that they didn’t think this would be a path toward him having it removed, our focus was simply on him being safer in those moments where it would get pulled out.
So when our ENT said that AJ might now be a candidate to have his trach removed in the future, you would think that it would have been cause to celebrate. He could lead a different life – he would be able to go swimming in pools, and travel without a barrage of equipment…
But instead, it put me into a panic. What if he needs bagged? What if he chokes on something? What if he gets sick and has to go back on a ventilator? What if we lose our nursing hours? What if….
Where was all of this coming from? Why couldn’t I just celebrate the amazingly good news?
Then it hit me — In all the days I spent being careful to not let diagnoses define him, they had ultimately defined me.
Many of us medical/special needs parents do it – you can even see it in our posts on social media. Check the hashtags and you’ll see things like #trachmom, #gtubemom, #heartmom… We wear them on shirts “Proud Mom of a CHD Warrior”, “Don’t Mess with a Cancer Mom”…
We frequently remind the world around us that our children can do anything — even though it might take them a little longer, or they might do it differently. But the underlying truth to that is that in order for our children to have those opportunities to live a “normal” life, someone has to shift.
As parents, that shift tends to come from us. We learn how to travel with a car full of medical equipment and adaptive devices. We explore with trial and error to find what learning techniques work best. We learn how to use various devices and tactics for communication. We lose sleep at night, scouring through the parent support groups on Facebook, thankful that there are other parents out there that can relate to what we’re going through, often either asking for or offering up advice to others on their journey.
I’m no longer surprised that I had such a reaction to AJ’s potential decannulation. I’ve spent the last four years of my life making sure that his trach didn’t limit him — even if it meant I had to bend over backwards and learn all kinds of new tricks to make it happen. In some ways you could even say that his trach ultimately limited me, because I didn’t want it to limit him.
Much of the time, diagnoses can’t be reversed. If someone has Down syndrome, they will always have Down syndrome. If you were born with a CHD like Hypoplastic Left Heart Syndrome – you’ll always be a cardiac patient. As parents, we’ll likely always identify with those labels too.
There are a small handful of those labels that can change, and it took a bit for me to understand, but that change back to “normal” is just as big, if not a bigger, than the change away from “normal” was in the first place. It’s okay to struggle with questioning how you are going to feel and how life is going to look like when those extraordinary circumstances are gone and you’re no longer having to work in the same way to make things feel “normal” for your kiddo.
I will celebrate if AJ does ultimately decannulate, but at the end of the day it won’t matter if he still has a trach or not – I’ll still always carry that label of “Trach Mom” with me. I’ll always have the knowledge and experiences, and I’m proud to be among the few to carry it.
On an entirely different subject… I couldn’t help but notice how you have his oxygen tubing connected to his HME… How do you get it to stay on?? Our daughter has a trach and only needs oxygen when she is sick but they told us we have to cut the end off the tubing to connect it to the HME and then it constantly comes off unless I rig it on there with tape. You have it connected with the regular end and it seems secure. What’s the trick?? Our HMEs look the same as yours from what I can see.
Hopefully the image comes through in the comments — it took us ages to figure out how to cut these. We tried different HMEs and different types of tubing… finally figured out to just cut the very end off, not the whole thing! Hope that helps!