
The Rare (Car) Ride
- fight4cystinosis
- Mar 13, 2024
- 4 min read
Let me just preface everything with a factual statement that is, I fail a whole lot as a mother and human, in general.
I tend to second and millionth-guess myself because of this fact, incessantly, as I believe most parents do.
And… let’s be abundantly clear. Raising humans is ridiculously challenging. Raising teenagers is hard. And yet… raising young adults that live with a chronic, serious, life-threatening condition, who have subsequently also had more than their fair share of medical obstacles… well, that feels a whole lot like unchartered territory.
As I type, I have a tendency to do so in exactly the manner in which my brain remembers and my fingers blindly move across the keys, rather blurting out whatever they’re told to.
But in instances like this, I’m no longer merely sharing “my” journey, yet I am sharing, in part, a growing adult’s experiences too, who just so happens to be my teenage son.
I must be respectful as to how I choose to share. As the words I type and the social media content seems to be rapidly spreading by the day, our stories are being shared across far and wide. Which, although extremely exciting … it’s still very raw and very real and very much our lives.
I have had years to process, but said teenager has likely just begun.
It’s rare when I get hugs or words of affirmation from him. I’m ok with that, mostly. It’s odd in sense, but habitually I tell him how I feel toward him every single day, multiple times a day, and I make certain to show him in ways in which he receives it, too.
The past year, most especially for him, has been a lot of growing pains. He went from a very sick boy to a healthy adult with a lot of freedoms and a drive to, well… drive.
On a very rare occasion, the other day actually, we were both in the car together. I had apologized for some behavior I needed to own that he inadvertently (or not) brought up in an earlier conversation that day, from a few years back.
He doesn’t appreciate or respond to “the victim mentality” which can often translate to… I don’t get a chance to explain my side of the story and heaven knows…I am an EXPLAINER. So I absolutely dreaded how to apologize and still “have my feelings validated and heard.”
We opened the doors simultaneously and sat in the car. I turned the air on quickly and I fastened my seatbelt. He didn't. I hate this but I proceed because I know now isn't the time to pick an entirely different argument. We small-talked for all of about 2 minutes before I said flatly, “I am so sorry. I’m sorry I acted that way. I did truly do my best in that moment, but it wasn’t enough and I am the adult. I was the adult back then, too. I take FULL responsibility for the feelings it left you with, to work through now.”
He then clarified a few things that I had (thankfully) misunderstood. I thought he was much more disappointed in me personally than he actually was. And yet he continued on to say something I pray I never forget… so I think I will put it here in black & white.
“Mom. It didn’t help matters any that I was so sick and in & out of the hospital constantly. I’m guessing you were actually scared.”
Scared?
I have never EVER said that word to him. This much I know. Truthfully, we don’t have conversations like this, so he knows very little of how I have felt over the years.
I look over him sitting next to me in the car and sob. A million tears. Approximately 19 years of tears that came flooding to the surface in an instant.
All of sudden I remember vividly using anger, hate, frustration, panic cleaning, even diet and exercise and so many more ugly feelings to cover up…
FEAR.
I thought I was, anyway.
But I couldn’t fool him.
He knew.
He saw.
And he wasn’t mad at me.
It meant the world. It meant EVERYTHING that he saw me…
He saw a PERSON… scared.
Not just an irrational, overreacting, angry mom… but…
ME.
I can’t put into words how that, overall brief interaction in the car made me feel, but I absolutely felt my entire soul heal just a little.
And like another layer of stinky onion… that ugly layer began to fall.
I’m not exactly certain how many more filthy layers are hidden beneath…but I will no longer hide how I feel or how I have felt. It doesn’t serve me or the ones I love well. It covers up the authentic feelings and replaces it with an even more hideous facade of lies and half truths.
Telling my story… our story is hard.
But being honest is freeing and oh-so necessary to step into our calling.

Goodness…these people that live with us…they are more perceptive than we ever know, aren’t they?