AUTHOR: Carolyn Savage | POSTED: 02/18/15 4:30 PM
I’ve noticed that many of you tend to worry when I get quiet. Most of the time your concerns are unfounded. My lack of presence is due to being trapped under multiple loads of laundry or being sequestered to my car depositing children at their various activities.
Unfortunately, this most recent silence isn’t that simple.
Last Tuesday Sean and I were summoned to a conference call with Nicholas’ pulmonologist. As we waited on the line for his doctor to join the party we were both silent. We knew the genetic test results were back…and we knew that our required presence for an explanation probably meant we were about to get some disconcerting news.
Neither of us could talk. I can’t speak for Sean but I was quiet because I feared if I opened my mouth I just might throw up. In fact, I was so sure of what I was about to hear that I spent a minute or two trying to decide where I wanted to be in my house when I heard the doctor say it. Which room did I want to forever associate with bad news?
I chose an upstair’s closet.
Now before everyone gets too upset let me put you at ease a bit. There is nothing life threatening going on with our little boy. Nicholas continues to eat like a champion and slam dunk his milestones. If you looked at him you’d never know there was anything amiss. That is…until you heard him cough. Then you’d wonder why our sweet little three month old sounds like he has a ten-pack-a-day habit.
We were hoping his cough and occasional wheezing were from the remnants of his pneumonia. Some of it may be…but it appears that it is more likely that Nicholas’ continued respiratory symptoms are as a direct result of his new diagnosis.
Nicholas tested positive for primary ciliary dyskinesia.
I’ve written before about how I think bad news has a sound. For me it’s like the most offensive alarm I’ve ever heard. It’s constant. It’s piercing. And it’s distracting–almost as if my brain is trying to protect my heart from breaking. I guess it’s a defense mechnism of some sort. Perhaps it’s purpose is to soften the blow of a new and unwelcome reality. I don’t really know.
What I do know is that when the alarm lifts and the news starts to sink in I’m often left somewhere between mental chaos and numbness. My mind is racing trying to figure out how to assimilate what we know now into our daily lives, while my heart is left breathless…trying not to think of the worst. And because I’m a mom…and I’m hard-wired to worry…I have to shut it all down, reverting to that whole one-step-at-a-time strategy.
During my pregnancy with Logan, Sean and I swore by the one minute…or one step… at a time strategy. It’s how we survived. We employed it again during Nicholas’ hospitalizations. I was hoping we were done having to cope in this manner. Fate had other plans.
The other day my mom asked me how I was feeling after having had a week to digest the diagnosis. I told her the truth. I really don’t know. I guess I’m fine. It didn’t really come as a blindside. We knew PCD was a possibility. We were just hoping that this whole mess had truly been caused by a monster infection. That would have been temporary…something we could have left in the past.
Instead we have to accept that our future–Nicholas’ future– is going to be different than we thought. And we have to remind ourselves that, that’s okay. At least he has a future. Hopefully a future filled with a lot of normal…and a lot of extraordinary.
Now it’s our job to provide him every opportunity to grab his life by the horns.
Diagnosis be damned.
As a result of this new diagnosis, it was important that Nicholas had the status of his lungs checked. We were hoping to see clear open lobes on both sides. Unfortunately, that pesky right upper lobe is still problematic. As a result, Nicholas is headed back in for a bronchoscopy tomorrow. The goal of the procedure is to suction as much mucus out of his airways as possible allowing air to flow freely resulting in an inflation of his upper right lobe.
Please keep him in your prayers. I will update on Facebook tomorrow evening.