Not When, But Now

I hadn't really intended on turning this into a blog post. 

But here we are.

I wanted to remind everyone to stop waiting for “when”.

Let me back up a bit.

Way back in January, 2004, we finally brought our former 25 week preemie home. It was a momentous occasion, after 5 months in the Neonatal Intensive Care Unit (NICU). We had so many people awaiting her arrival: a respiratory therapist (RT) from our equipment company, a nurse from our nursing agency, the grandparents and her big sister.

She came home with a tracheostomy because of upper airway damage from being on a ventilator so long and all the extubations and intubations. She had a nasogastric tube (NG tube) to feed her when she was too worn out to continue bottle feeding. (Don’t come for me. She didn’t have the strength to nurse and needed extra calories because she burned more calories eating than she took in without adding more.) She needed 24/7 oxygen. She had a pulse oximeter to monitor her oxygen saturation and heart rate. She had a suction machine we used to clear her airway. We had a couple of ambu bags used to resuscitate her (yes, we used them at home multiple times). She had a giant oxygen tank in her room, along with a concentrator. Plus, she needed a lot of supplies to be able to suction, give breathing treatments, and so much more.

You get the idea. At a minimum, I was overwhelmed. I needed one other person to go to appointments because: 1. stuff and 2. keeping her safe in the car.

I’m sure I was a blast those early days. Sleep deprived. On alert 24/7. Drawing up meds. Administering meds. Feeding (she took FOREVER to eat 3 oz, to turn around and do it again 3 hours later). And all the appointments. And private duty nursing (PDN), a blessing and a curse. I desperately needed our night nurses so I could rest. Otherwise, I was awake until I got relief. She was THAT unstable. 

As I sat in her room, feeding and rocking her (and praying she wouldn’t get sick, because holy projectile!), I started to dream. That’s OK. Really.

But I started thinking about her not needing supplemental oxygen anymore. Or being able to eat like a champ and pulling that NG tube out. Or, the biggie, getting that trach out. She’d been home days and I was dreaming about what would be several years into our journey for some of it to come to fruition.

I connected with a bunch of other Moms in similar situations in an online message board community. (Still friends with many of these Moms, 21 years and counting). 

I watched kids get decannulated (get their trachs out!). I watched kids get really, really sick (and worse). I watched non-trach moms infiltrate our tight knit community and had our trust shattered. 

Somewhere in all this, I stopped living in the “now” and started only looking towards “when”. Like our lives stopped. (Spoiler alert, it didn’t. I just didn’t know then what I know now.) We will do or go _____ when _____.

I don’t know what your situation is, but from an expert in waiting until ____ to live, please take my advice and do the things now (that you can safely do).

Go to the park.

Take the trip.

Do the things.

LIVE NOW.

If you’re scared. Do it anyway. Need encouragement? Talk to someone who understands your life (to some degree) and seek encouragement. 

Live before it’s too late. 

What will you do? Me? We've gone abroad once. It was magical and so very freeing. I may just start looking at flights...