Same stoma. New tube. 

See anything different? No? Well, it’s there. It came with the the new month and will stick around until June. 


That’s right, folks. We officially have a new trach in place. 

Once a month, Jackson’s full trach has to be changed to help clear plugs and prevent infection. This involves removing the ties holding his trach in place, taking out the old one, and sliding (yes, sliding, as it slides in with the help of a little lubricant *giggles*KY*giggles*) the new one in place. We had done it in the hospital, under the watchful eye of the nurses, but this was our first time attempting it at home. 

I was not prepared. 

Thankfully, my rockstar of a husband stepped in and took the first one. Steadily, we undid Jackson’s trach ties, removed the gauze, rolled his neck out of the way, and – BAM- like that, it was done. Thankfully it went in without a hitch and it was amazing to see how much better the little man could breathe once we were done. 

Things like trach changes and g-tube care aren’t really what I thought I was signing up for when I got pregnant. I would tell people I didn’t care ‘what’ we were having ‘as long as it was healthy’ when asked if I wanted a boy or a girl. That things like gender and hair color and whether or not they liked sports didn’t matter to me, as long as they were clinically healthy. 

Jokes on me, huh? 

By all accounts Jackson isn’t technically ‘healthy’. And, whether I like it or not, he’s not ‘normal’ (I prefer the word ‘typical’ because, let’s be real, no one is normal). But this is becoming our normal, our daily routine that includes trach care and feeding bags instead of bottles and pacifiers. And that’s okay. I’m not saying it’s easy – mourning there loss of what you expected your path was going to be is hard – but it’s ours and it works. I won’t say I wouldn’t change it for anything, either, because that’s a lie. If I could make it so that Jackson didn’t have to go through the appointments and surgeries and challenges he faces, I would. But that’s not reality. That’s not the hand we were dealt. That’s not what we’re faced with. 

And that’s okay. 

They say God only gives special children to special people, those who have demonstated the capacity to manage situations like the one we’re faced with. But I don’t really believe that. I find that explanation to be somewhat self-serving. Instead, I like to look at it this way – you’re given the life you’re given. That’s it. Things like TOF and Pierre Robin and bowel resections happen because… well, sometimes that’s just luck of the draw. The way you deal with these things, using your gifts, talents, and strengths to make the best out of your situation, makes you special. Special kids aren’t given to special people – special kids simply help to pexpose the special in those around them. 

Now, to find some of that special before June 1st, because I think it’s my turn to change out the trach. 

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