Thread by @SinnamonLove

Want to know what it takes to get my grandson to Michigan for his Great-Great Grandmother’s 100th birthday?

Buckle up, here goes.

#disabled #gtubedependent #birthinjury #braindisease #specialneedskids

3 pieces of regular checked luggage, 3 checked pieces of medical equipment & supplies, 4 carry on's, including 1 train case w/ medical supplies, 1 wheelchair, 1 gait trainer, & 1 pack of bubble wrap so the gait trainer doesn’t get broken. #travel

2 packs of diapers, 1 pack of disposable chucks, 2 reusable chucks, 1 communication book w/ picture exchange symbols, a case of Keto formula, 1 feeding machine, feeding bags, 3 sizes of syringes for meds & water, & 2 insulated lunch bags w/ 7 liquid meds & 2 bottles of pills.

2 extension tubes, 1 pair of AFO braces, 2 airline compliant sized bottles of sterile water, baby wipes, and of course, his fav books, toys, & clothes.

We also have 2 10-pack packages of child-sized K-N94 masks that due to sensory overload, he rips off & throws on the ground.

I made a conscious decision to upgrade our seats so we could minimize his exposure. We spent 2 years protecting him and to find out the day before that the flight mask mandate was dropped was worrying.

In March 2019, after having 2 colds back to back, Art developed the flu. I took him to the ER while his parent was at work & before I knew it, we were moved to a larger room, then a larger one. I quickly realized we were in a crash room. His lungs were collapsing.

I held my grandson while he pleaded with his eyes for my help. The charge nurse yelled at the doctors to “do something to protect his lungs” while they discussed a plan of action. I held him as he as intubated.

In March 2020, he was EMS’d from school to a nearby hospital for a series of seizures that lasted 30 minutes. After 15 days, he was discharged home - the same week COVID-19 hit NYC.

At first, I thought it was nothing. He had been hospitalized for another strain of Coronavirus at age 2. After 3 days of IV fluids he bounced back and posed for a GAP contest from the hospital crib.

Anyone who has ever met Art will tell you, he’s an OG. But that doesn’t erase my realistic fear that this virus might take him from us. For 2 years, I willfully dug into community service to help others, like me, who were transitioning back online to protect my family.

We shut everything down. No home attendants, virtual doctor visits unless necessary, remote learning and therapy. To say the overwhelm and loss of income was devastating is an understatement.

A social butterfly, he looked longingly out the window at the neighborhood kids playing. We took 1 trip as a family that summer when the airports were still empty, so he could escape the confines of our apartment and roll in the grass with cousins at my sister’s house in Flint.

Medical trauma is mad real. I don’t wish sitting vigil for a child in a medically induced coma on anyone. Perhaps my greatest fear is that someone, if not Art, will infect my 100 year old grandmother.

But here we are 50,000 miles up in an aviation equivalent of a bus, with people happily mouth fucking the air so Art can hit the dance floor with his Great-Grandmother and attend mass for the first time in the parish where I was baptized.

I can only know that we continue to do everything right. I am grateful for the opportunity to be able to go home and spend time with my family and can only ask my ancestors, known and unknown, to continue to guide & protect us. 🌸

Because one thing we know for sure, these damn politicians and corporations don’t give a FUUUUUUUCCCCCCK.

Correction: Great-Great Grandmother.

Auto-correct swears it knows me.

Oh and while you're here, go subscribe for my OnlyFans or Cashapp me if it's really real because at girl hemorrhaged fucking money on this trip. 💋 #linkinbio

SingleinBrooklyn.com