The First Year

SMIDGE OF THIS
One year in.

One year ago, I was sitting in the hospital where we'd just stayed the night. That morning, I was wearing a baseball-style tee with pink 3/4 length sleeves, and in script on the front, it said "though she be but little, she is fierce."

The team of doctors came in and said the words. MRI. Vanishing white matter. Leukodystrophy. Terminal. No cure. Comfort. Genetic. "You need to have your other children tested immediately."

Ian was at work. After months of no answers, he'd left the hospital room that morning sure that it would be another day of no answers. I encouraged him to do so. Now, I could not believe I was getting that information by myself. Alone. No broad shoulders to cry into. No strength to lean into. No eyes to look into but Charlotte's. "I'm so sorry baby." and lots of "Oh my God. Oh my God."

Maybe other people thought she could be dying. Maybe it was easy to look from the outside in and think the news would be grim. Maybe I'm dumb, too "surface," too positive, too cheerleader-y, too rose-colored glasses.

But maybe I'm just a mom who saw a perfect daughter and had all the hope in the world that all would be okay.

In the past year...

I have learned how to fight for my family
I have learned to be trusting but not too trusting
I have learned the benefits of Medicaid and why I had to fight to get CAP-C support
I have learned when to say "thank you" and when to say "we need more"
I have learned to say no thank you
I have learned that it's okay to not eat your food using your mouth
I have learned that it's okay to feed your children in different ways
I have learned how to operate a feeding tube and pump, how to change out an extender
I have learned which type of extender I love, which pump I love
I have learned how to not freak out when a feeding tube pops out of the belly
I have learned how you have to be careful because there's now a hole opening up to the stomach
I have learned how to replace it with a new one. You need patience, bravery and lube
I have learned how to creep in at night and set up a nighttime feed
I have learned that medication is pretty darn easy to give by tube feedings
I have learned which syringes I love to use
I have learned what "flush" means
I have learned how to measure in CCs
I have learned how many CCs flush down meds
I have learned how to change a diaper when you can't bend the legs up anymore
I have learned which diaper covers fit a 3 year old for modesty and to "look like the other girls"
I have learned which shoes can fit a 3 year old with feet that no longer work in regular shoes
I have learned which outfits I need to let go of for her, like rompers or anything tight or hard to put on
I have learned how she needs to sleep at an incline (aspiration risk)
I have learned how weighted stuffed animals are heaven-sent
I have learned how to connect and read a pulse oximeter
I have learned what do to when it alarms loudly at night
I have learned how to get by on little or interrupted sleep
I have learned that my sleep is underrated
I have learned that two cups of coffee is really my max
I have learned that two glasses of wine is really my max
I have learned what a pulmonologist, neurologist, gastroenterologist can do for her
I have learned the difference between physical therapy and occupational therapy
I have learned how to help her ride as comfortable as possible in a carseat
I have learned the blessing of a family beach trip
I have learned that some things I used to complain about are actual blessings
I have learned what continuous oxygen means
I have learned what skin breakdown signs are
I have learned how to sleep while someone walks around your house
I have learned how to schedule in advance when a nurse is relying upon you to do so
I have learned how to schedule impromptu calendar changes and ask for forgiveness
I have learned how to read minds
I have learned how to read a pulse-ox to see if my daughter is happy
I have learned how to read a pulse-ox to see if my daughter is scared
I have learned how to teach a long, deliberate blink for "yes"
I have learned how to operate a suction machine
I have learned how to operate a CPT (shaky) vest
I have learned how to operate a cough-assist machine
I have learned how to operate a nebulizer
I have learned how to operate a stethoscope
I have learned her target heart rate and relaxed heart rate
I have learned her seizure protocol
I have learned what hospice does
I have learned what therapists can help with
I have learned when to rely on family/girlfriends and when to rely on therapists
I have learned the beauty in connecting with other MLD moms
I have learned the sadness in connecting with other MLD moms
I have learned how sweet the words "mama" sound
I have learned how to etch that sound into my memory
I have learned to record everything on my busting-at-the-seams phone
I have learned not to take a moment for granted
I have learned not to expect anything
I have learned to look for hidden blessings
I have learned to look for Godwinks
I have learned to listen more than I talk
I have learned that childhood is fleeting ... it really is
I have learned that family is everything
I have learned that stuff is just stuff
I have learned that a year can make the difference of a lifetime.

Thank you for allowing me to vent some stream-of-consciousness emotions this evening. A very important evening in our family.

And for multiple reasons ... Lochlan (nearly 14 months) started really REALLY walking tonight. Thank you Lock for choosing such a special date that we will always remember, buddy.

Thank you all for listening, reading, and caring.
XOXOXO



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