Happy birthday to my dream-come-true

My disease and her milestones will always be linked - but it makes today more special, not less.

Thanks for your patience with me this month, dear readers.

After my last infusion, the Gods of the Immunocompromised have not smiled kindly on me and I’ve been very sick.

The cocktail of recovery and exhaustion has not been kind for my productivity. For almost two years I’ve published twice a week, so I’m taking my time to heal and get strong.

But I wanted to pop back on and celebrate my three year old.

Some might wonder if July’s birthday is bittersweet - since it coincides with my life’s greatest upheaval, my trigger of aHUS. But for me, it’s a time to celebrate her and my survival. To see her smile, dance, and play on her birthday is a tribute to all I’ve endured.

Her joy is my gravity. Her laugh is my sun.

And now she’s not really a baby anymore. She’s a three year old. And she’s incandescent.

I find her brilliant and charming. She’s sweet and friendly. She’s strong-willed and curiously hungry for life.

I suppose it’s not unusual to feel your own child is extraordinary, but for all she’s been through - I know she is.

The first year of her life was so hard and yet she was the happiest child. An easy smiler and a gleeful disposition, she saved me such hardship. She was the port in the storm. Labs, dialysis, fear, unknown threw us into uncharted seas.

I’d spend hours and hours away from her - either in treatment or asleep recovering. And yet, her joy was constant as if to say, “Mama, don’t worry about me."

It’s also a credit to Zach - her primary caregiver. His love for her is so vast, she never lacked or even knew anything was ever wrong.

Her first few years have been incredible.

She does suspect now her mommy has some unique challenges. Especially when nurse Stacy comes for infusion night, or mommy is sick too often, and after taking mommy to the emergency room. But she’s also learned I heal and show up for what’s important.

July is now a “big girl” and seeing her grow at every stage makes me want to slow down time. I’m so proud of her.

We can’t shield her from the problems of the world or the problems of my body. That’s never been my job. My job is to prepare her and set her up for success and help her take care of others and her world.

So on this day of her birth, I don’t ignore the truth of the challenges it brought us. I celebrate where this journey has taken us.

July came into the world a fighter and a survivor. She survived the disease too. Her cord was full of clots.

Every day, every breath, is cause for celebration, for us both.

YOU MAY HAVE MISSED IT

If you’re new here and wondering, “what happened to this lady?” read:

I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.

Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.