Every second counts

Jono’s birthday
was the first holiday 
we could celebrate 
at home; with David. 

Several days before 
he came home, 
both Matt and Jon 
were at the hospital, 
while Hannah and I 

prepared for David 
to come home. 
We also prepared 
a birthday celebration 

unbeknownst to Jon. 
He is a fan of Star Wars 

and so we went all out with that theme. 
Hannah made a cake 
in the shape and design of BB8, 
while I blew up balloons 

and decked out 
the dining room.

A welcome home 
AND a birthday. 

What a happy day...

Now 
we have 
celebrated another; 

Mother’s Day.

Matt grilled burgers. 
Dad taught him
how to do it 
from a safe distance. 

A good teacher 
PLUS 
a willing son 
EQUALS
AMAZING BURGERS!

Hannah decorated;
boys assisted. 
A beautiful transformation. 
Sparkly lights, 
balloons, 
sari’s, 
and all kinds of stuff 
in our decorating box. 
The best thing of all?
He’s home. 

I closed my eyes 
and wished for
many more 
holidays
with him.

Not a lot of change 
since I last wrote. 
He is able to walk 
a little farther 
before sitting down 

and turning his oxygen up. 

It is a pretty scary thing 

because his oxygen levels 

don’t just go down, 
they plummet. 
So we have to 
monitor his 
every step. 

I took him to the park 
on Saturday 
while Hannah 
was at work. 
Matthew was in charge 
of the wheel chair, 
I was in charge 
of the oxygen 
and Jon was in charge 
of the cane, 
water bottles,
keys and such....

David walks. 
His oxygen goes down 

after several minutes. 

There are 
60 seconds 
in a minute 
and he does 
accomplish a lot 
every second.
Besides,

it’s way more 

encouraging 

to count in seconds 
than minutes at this point. 

Sometimes he can 
walk 120 seconds
before sitting down. 
180 seconds 
on a good day.
Then he sits down,
turns up the oxygen,
catches his breath 
and restores his grit.

The bridge 
at the park
was within eye view 
from where we started.

It was obviously his goal, 

because when we had to stop the first time, 
he told us to push him to the bridge 

instead of walking to it.

We stopped right before the bridge 

and he started towards it. 

He stopped in the middle 

and with more than just a small amount 

of gumption, 

tried to rest his arms on the rail 

and after a few tries 

was successful. 
Seconds are long for us. 
It’s what we have. 
Enjoy every second 
now makes sense.

The thought occurred to me 

‘what a great photograph 

this scene would make’ 

but I was holding the oxygen. 

I was able to just 
enjoy the view, 

which was way better. 

His salt and pepper hair 

blowing in the wind, 
his arms resting on the rail, 

him taking in the view 

of ducks, 

turtles, 

fish 
and water...
beautiful, rippling water, 

with the sun shining down on it 

making sparkles.

I think he lasted 180 seconds that time

before he had to sit back down in his chariot.  

He walked a little more 

but was worn out 

and we had to push him the rest of the way 

to the car. 

Good days and bad days, 

happy days and sad days. 

But they are with him...

And even though 

this is a really a hard thing,

we are together;
counting seconds,
pennies,
and anything else 
that sounds better 
with more zero’s added.

XO

Shelli