A few minutes after Gage was born, I held him in my arms and I looked up at his new father and didn’t have the words to express what I was feeling.
Gage made me a mother.
On that day of joy, it was a year before he’d be diagnosed with a vision disorder that caused delays. It would be another two before his sister Quinn would join us and bring a surprise inside her body that she would share with her brother when they were diagnosed with ARPKD/CHF.
As you might imagine, motherhood was an adjustment. I like to think I handled it pretty well before the diagnoses and a time I refer to as The Fog, in those early months after diagnosis. Two years before Gage was born I’d begun freelancing, anticipating staying home with a baby and worked nearly full-time until he was born. I had the best of both worlds; a little bit of work and the majority of my time being a stay-at-home-mom to my bald-headed baby. I’d nursed exclusively, he was a good sleeper (failing kidneys will do that, you know) and I felt competent. We did okay in our new routine, the two of us. I’d transformed into a mother.
Fast forward a couple of years and within a few months we had two sick kids with multiple special needs to take care of that resulted in an unbelievable amount of appointments for the next year because blood pressure stabilization and then ongoing for the next three years, 10-13 (ot, pt, speech, vision & feeding) therapy appointments a week.
It was a terrible time of adjustment for me but as I just put one foot in front of another, another transformation happened. As I was caring for them and their complicated needs I started to change.
I became an advocate.
A caregiver, tear wiper.
I became a story-teller, a schedule keeper.
Appointment maker, boo-boo kisser.
A comforter and soul protector.
I became a researcher and life juggler.
A medical aid and fighter.
Pill dispenser. A shot giver.
I became the public face of strength for them, the private crier for me.
A volunteer, a speaker.
I became fearless and fearful.
The eyes and ears for doctors and nurses.
I became a better wife, daughter, sister. A better friend.
A fighter for treatments and paperwork manager.
I became stronger.
I found my strengths, let go of my perceived weaknesses.
I cared less about things and more about people.
I became more grateful.
I became a better person.
I became the mother I am today.
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