My day yesterday, Sunday, began at 4:12….to be precise,
like Aaron. Aaron had a seizure for the
second early Sunday in a row. Then he
had another at 5:45, so I just stayed up then, knowing that I wouldn’t be able
to go back to sleep. This is a very busy,
tiring time for everyone. To start my
day off so physically tired wasn’t what I had planned, but as usual my thoughts
went to Aaron and how awful he was going to feel when he woke up.
I heard him upstairs through the baby monitor later in the
morning, stirring and stretching and then getting out of bed. I knew that he was marking his wake-up time
in his notebook that he uses to record all that important information about his
life. Later he slowly made his way down
the stairs. I noticed that he had on a
different pair of pajamas than he had worn to bed, and I knew right away what had
happened. I went up to his room after he
and I talked for a minute to gather up his wet linens…..all of them, including
his waterproof mattress pad. Poor
Aaron. Such hard seizures take a toll on
him, and can be embarrassing as well.
So the day began in earnest with mounds of laundry and
mounds of Christmas preparations and plans to accomplish. I was thankful for the time that day to prep
and plan, but as the day wore on I was very aware of my fatigue…..fatigue that
was probably only going to increase as the week continued.
That evening, as I finally cleaned off the kitchen table to
some degree, I was looking forward to a little time to chill out. Catch up on Facebook, look at emails, read
the news….. But of course, I wasn’t
downstairs very long before Aaron came thumping down the stairs. First he talked to Gary about the movie he
had finished watching today, and then the current movie he was now watching. Soon he came to me at my computer, and began
the same recitation. Gary and I finally
had to tell him that movie talk needed to stop.
We were depleted when it came to his long movie reviews and endless
questions.
I had told Aaron earlier that maybe we could play a game of
SkipBo……emphasis on MAYBE. As Aaron left
me at my computer, the last thing I really wanted to do was to drag myself back
upstairs and play a game of cards with Aaron.
I was tired. And I was very weary
of listening to all the movie talk. But
we hadn’t played SkipBo in a while. This
time of year takes much of the fun time away.
I felt badly for Aaron, who asks me every single night of his life to
let him know if we can “do something, like SkipBo …..”
It was around 9:30 when I went upstairs and asked Aaron if
he wanted to play a game of SkipBo. He
was very happy to hear me ask that question, so while he took his pills I
shuffled the cards. We had a normal
game, with me having to monitor Aaron’s every move in case he cheated and with
Aaron thinking he had to monitor my texting with Andrea. I could feel my nerves getting a little more
worn. Of all nights to have a slow game,
this was not the night! But was it ever
a slow game! Where were all the 3’s?! I was getting irritated for sure.
Finally the game was over!
I wasn’t nearly as happy about winning as I was happy that I could go to
bed at last……after turning off all the Christmas lights, fixing the coffee pot,
helping Aaron get his bed all perfectly ready, and listening to his non-stop
chatter. Ugh! All these thoughts were going through my mind
as I put the cards back in their box. I
looked up then to see Aaron sitting very still across the table from me,
peering down at something on the table.
“Mom?” he asked. “What’s
this?” I thought he was pointing to a
little indention on our distressed kitchen table that’s become much more
distressed under Aaron’s attention. I
brushed him off with a quick “I don’t know.
It’s just a little dot. A little
mark.”
Aaron wasn’t deterred.
“No,” he said. “It’s sparkling.”
And I knew then what “it” was. “It” was a tiny little piece of glitter from
all the wrapping paper and glittery tissue paper I had used that day. Of course, Aaron noticed this miniscule piece
of glitter that to most of us would have gone totally unseen. Or seen, but not cared about.
Not so with Aaron.
He was intrigued by the tiny sparkle that caught his eye. He knew that it was worth exploring, so he
did. Furthermore, he hoped that I would
do the same. I was headed to the coffee
pot when I stopped and turned around.
There sat Aaron, pointing to the itty bitty glitter, and I was drawn to
that scene as I stood there for a few seconds.
I smiled as I realized that I should not miss this moment. So I walked back over to the table, and I
bent over the little glitter particle with Aaron. We both smiled as we noticed the glitter’s
tiny shimmer. I realized that this
glitter wasn’t round, but that it had definite sides. I counted six sides, and so Aaron and I
talked about the fact that this glitter piece was in reality a hexagon. It was pretty and sparkly and more complex
than either of us realized until we took the time to look at it carefully.
All day today I’ve been thinking about that glitter moment
with Aaron, and what I would have missed had I dismissed his interest in favor
of a coffee pot to fix and Christmas lights to unplug. I would have missed a sweet moment with Aaron……a
time of simple sharing…….a smile……a discovery.
At this time of year, especially, but at any time of year,
I need to often remind myself to stop my fussing and flittering……and to take
some time to see what Aaron sees. Take
some time to see who Aaron IS. See the
world through his eyes, with all its complexity and its beauty.
And to apply this lesson to so many other areas of my life
as well. Stop to see what’s around me
that’s not so obvious, lest I miss out on some real beauty and some sweet
moments. Don’t let my schedule or my
tiredness rob me of discovering some sweet moments with those I love…..or with
those whom I need to know better…..or with those that I can help.
Coffee pots and other chores will always be there. Glitter has a way of blowing in the wind and
never being seen again. I need to
treasure it while I can……with Aaron, of course.