Big Words Can Be Scary

"Big Words aren't scary, they're big fun to learn. I was taught once and now it's your turn......" This is from my favorite children's book (Big Words for Little People by Jamie Lee Curtis and Laura Cornell)

• Quadriplegic

• Autonomic Dysreflexia

These are my big words....and they are scary.

Quadriplegic is partial or complete paralysis of both the arms and legs.

It's unbelievable, right? I ask myself so often- like is this for real?

I tell people when I go to the grocery store and it's so shocking that people don't know what to say. I mean, it is shocking! How the hell did this happen?????

Jack has gained some left arm movement while here at Day Program in Atlanta. But it really is a marathon, not a sprint.

His goals for the 6 weeks (3 1/2 weeks left to go) are:

• More independence with eating and drinking

• More independence with bathing and brushing teeth, brushing hair

• Scratch my own itches

• Slide board transfers, so we don't always have to use a Hoyer lift

• Art Sports-Wheelchair Soccer

• Balance, so I don't fall to the side when I lean

Autonomic Dysreflexia is a syndrome in which there is a sudden onset of excessively high blood pressure. Seriously, as if paralysis is not enough we have to deal with this shit show!

So basically, anything below the level of injury can not be felt by him, so if the signals can't get to his brain to tell him what the issue is, AD happens.

It is usually one of the following...bladder is too full or there is a kink in tubing, pressure is somewhere that is causing pain, but he can't feel it (think remote stuck under your leg, a blister that is rubbing and you don't see or feel it), bowel is backed up, pressure sores, UTI.......

We have had a myriad of these things happen and boy can they send you down the rabbit hole quickly! I sleep in a twin bed next to him and get up throughout the night to scratch his nose, straighten his arm, turn him from his left side to his right (he can only sleep on one side for 6 hours at a time) It's madness!

As we roll into this new journey, which has taken us through almost 5 months post injury now, there are so many feelings from all over the place. Wonder, Sadness, Laughter, Loneliness, Giggles, Joy, Heartbreak.....How are we going to do this?

Kip and I switched places for about a month and I'll tell you, re-entry into the chaos of home was overwhelming. I realized that sleeping in with my littles and doing nothing all day, was the best medicine. Coffee time with Gus in the morning while we watched the birds fly to the bird feeder, checked the weather and read our horoscopes then went for a hike in our woods to the creek. Playing American girl dolls with Maggie along with full spa days with face masks, foot spas and powdering our noses at our vanity. These are the things that matter. Just like my time with Jack being given back, I got time back with Maggie and Gus.

Balance is a hard thing to manage in life. I used to always think I was doing it wrong, that other folks had their shit together and I just couldn't bridge that gap. But I have some really awesome kids, kids that are strong, optimistic, loving, happy, full of wonder and all around kind humans. That's something today in this world.

So just when I am scared, Jack makes me laugh, Maggie gives me "the look" and Gus puts his head on mine.

We are all in this together, some days I forget that.

I can't even explain how grateful we are to all of you. With your help, "Jack's Lair" is being constructed, we are able to get a battery-powered hoyer lift, a manual wheelchair, pillows for positioning, a ramp for our home and so many other things.....

Sometimes in life you feel forgotten after the initial shock of a tragedy hits, but we feel so grateful to have all of you out there supporting us, coming to our home and building, taking care of our littles and taking care of us. Thank you, we love you:)