Fertilizer isn’t just a bunch of crap.

It’s been 10 months since Jack broke his leg.
In that time we have been on a mission to learn more about osteoporosis, drug interactions, growth plates, bone structure, weight-bearing…..
The list goes on.
And on.
And we are laser focused on getting Jack to walk.

In the past month or so we got the go ahead to ramp up physical activity and get Jackson to move more.  To bear weight.  To exercise.
We go once a week  to physical therapy AND to swim therapy TWICE week.
At home I stretch his legs and make him move.
We practice standing up.
We practice putting our arms above our head.
We move.

Jackson and physical therapy is hit and miss.
He tolerates it.
He  is not thrilled with the constant movement.
It has no bearing in his life.  He cannot grasp the concept of these insane movements we put him through.

“Why am I moving over there and back again?  Why are you making me walk backwards? What’s up with this side step thing?!? Get that box out of the way….
Hey.  Just let me sit…….”

But WATER THERAPY!?!
Jackson would spend HOURS in the pool if we let him.

He floats.  He moves.  He’s supported and free.
He yells TIIIIINNNNNNAAAA!! THE WAAAATTTTERRRR! loudly and with joy.

His foot is weighted.  We walk.  We bounce.
We are making great progress.

This past Friday we were able to have Jackson’s teacher peek in on Jack’s physical therapy.  He was impressed.
AND inspired.
So much so that Monday morning when Jack was wheeled into class, Teacher Paul exclaimed, “Jackson!! So good to see you! I loved seeing you walk! Let’s walk!!”
So amid VERY LOUD protestation from Jackson, Teacher Paul and I raised Jack out of the “wheels” and assisted him to his desk, halfway across the classroom.

What happened next was so amazing.
What happened next was so inspiring
What happened next raised my faith in humanity a few more notches.

All the kids (and aids in the classroom) started cheering on Jack.

“You can do it Jack!”
“Go Jackson!!”
“I’m so proud of you Jackson!”

It was with great effort that Jack sat down . When he raised his head to the applause and cheering I was giddy to delight to find Jackson LOVING the verbal support.

He was smiling.
He was grinning like a Cheshire cat.

And the kids in the class were truly happy to see their classmate walking.

It was a spontaneous celebration and I was honored to witness it.

I have been so focused on the end result, I forgot about the journey.

And it got me thinking……
Why don’t we cheer people on more often?
When was the last time you saw someone struggling and gave them encouragement?
When was the last time you saw someone needing a lift and gave it to them?

Positivity doesn’t cost a thing.
And it reaps benefits beyond compare.
Encouragement is an awesome commodity.

Thorton Wilder once said:

“Money is like manure; it’s not worth a thing unless it’s spread around encouraging young things to grow.”

I would possit that the same can be said of love and encouragement.
It’s the best fertilizer around.

Jackson and his classmates reminded me this week that you gain more by giving.

Spread that joy around.
Make things grow.

img_2334Jackson at physical therapy.

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Another leg of the journey……..

Another leg of the journey……..

I may be a little late in saying this, but……

HAPPY NEW YEAR!

Yeah.
I’ve been a little busy.  You see, Jackson took a minor spill on New Years Eve and life hasn’t been the same since.
First off– the minor spill had MAJOR implications. Jack broke his leg when he stumbled between the grass and the sidewalk.
If it was you or me, we might just get up, brush ourselves off and move on.
But it was Jackson.
And so we found ourselves in the ER
And we found ourselves hearing his leg was broken
And we found ourselves hearing the radiologist offhandedly remark about how Jack has osteoporosis
And we found ourselves at a loss as to how to transfer a child  (weighing well over a hundred pounds) with a BROKEN LEG — not yet casted –without a wheelchair.
And we found ourselves at a moment trying to figure out WHAT TO DO until the leg was cast and Jack could be mobile.

Think about it:
Moving Jack. Bathing Jack.  Toileting issues.
ALL of these things we have to figure out
on New Years Eve.

But, like cream, we rise above and  we DO figure it out.
We begin to research the connection between Dilantin and osteoporosis.
We get an unexpected call from a friend who HAS a transfer chair (AND a pan of tamales)
Dear friends visit with food, balloons, and coffee.

We learn that our low kitchen counter is the perfect height for Jack to lean on for pants changing.
We learn that once Jack gets his cast on, he can bear a little weight and scoot  about in his chair.
We learn that he comes to love his “wheels”.
We learn that his big sister is a CHAMP and at fifteen is every bit as qualified to care for her brother as any respite worker we’ve had.
We learn – yet again- the resilience of the human spirit, and our family’s ability to rise above what TSC throws at us.

And Jack?
On behalf of Jackson I would like to say: Fuck you, once again, TSC, FUCK you.
We finally hit our stride.
We’d been seizure free for two years.
Language and thinking and developmental growth was all happening and ……

BAM

When we weren’t looking, and when we were thinking we were soooooooooo happy because we were seizure free…….something else HAD to pop up.

Osteoporosis as 13.
Possible issues with growth plates due to the osteoporosis.
Maybe even rheumatoid arthritis.

And the connection?
One of the seizure meds we are using.
How’s that for irony?
There is a connection  but we were never aware of it.
And to add insult to injury?  You cannot add calcium supplements to counteract the effect Dilantin has.  Why? Because too much calcium renders the seizure med ineffective.
Wheeeeeeeeeeeeeeeeeeeeeeeeee

OK.
So the logical step would be to remove the Dilantin, yes?
I ask you: What would YOU do?
You’ve finally gotten seizure control.
(after years and years of seizures.  life flights.  rectal delivery emergency meds. years of hit and miss with other meds)
Now we disrupt that and consider:  Will the approach of puberty have any affect on the seizures?  The fact that the tumors have not grown and in some cases are shrinking- will THAT affect the seizures?
Do you wean off of EVERYTHING and start from ground zero?

These are the things we will be discussing with our TSC clinic.  And the rub?
There are NO REAL answers or SOP, or fixed protocol.
THAT , my friends is the reality of TSC.
And our reality with Jackson?
We fight, we research, we protect, we support and we LOVE.

Jack.
I am there for him every day, and I will ALWAYS be there.

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