We were
talking at supper last night, as we watched Aaron stuff pizza in his mouth,
about how quickly Christmas zoomed by this year. It's like a big meal that takes hours of
planning and prep, and then is over in a few minutes. We had a great time having Sandra, Gary's
sister, here for her fifth year in a row.
We love having her come............we're surprised that she keeps
coming! Not really, but we laugh at all
the mayhem that sometimes ensues at Christmas with the shopping and the cooking
and the wrapping and the everything else.
Plus this year we had Darcy,
Andrea's little dog, thrown in the mix along with our Great Dane,
Jackson. And Aaron.......always our Aaron......with
his many facets that either delight or depress or demand.
Aaron was
still trying to figure out Christmas carols as our holiday preparations were
gearing up and I had Christmas music playing all day long. Literal Aaron thinks that some of the words
to our carols are quite ridiculous. We
were playing Skip-Bo one night and I had Pandora cranked up to a favorite
Christmas station when he heard The Christmas Song. When the phrase "......to kids from 1 to
92...." was sung, I heard Aaron go, "Hmpfff!!" And I prepared myself for either laughter or
rolling of my eyes as I awaited his comment.
"People
at 92 years old aren't kids, right?!"
I began to explain what that phrase meant when he continued with his
commentary on this ridiculous song - "I think they're warning people who
are at the age of 92." "
Warning of what?" I asked. But he
really couldn't explain what he thought and he certainly wasn't getting my
reasonable explanation, so finally he just admitted that he really didn't get
it, even as he repeated what he so often says about our weird
world..........."That's DUMB!"
He enjoyed
"Ding Dong Merrily on High" more, though, because at least he thought
it was rather funny. "That ding
dong song sounds like an alarm clock!"
he blurted as he laughed at yet another silly Christmas song. I laughed, too, as I looked once again at our
mixed-up world through Aaron's eyes.
Aaron's Aunt
Sandra makes beautiful scarves. She
brought some for Andrea and I to have.
Aaron saw them on my desk the next morning and walked down the hall,
carrying the pile of scarves.
"Mom! Did you build these
for me?" he hopefully asked. I
assured him that I did not build them, but that Aunt Sandra had made them for
me. He was disappointed.........such
interesting, curly scarves would have been fun for him to own, he thought. "Are they like the Hawaiian women wear
and then they dance?" he asked with
even more hope. And again I assured him
that they were not Hawaiian scarves and that I definitely would not be dancing
a Hawaiian dance when I put on a curly scarf.
He laughed at this funny thought.
Aaron did
very well with going to his day group when Sandra first arrived. He often wants to stay home because she is
here, but this year he was more controlled and willing to go. Having pizza one day with his friends at
Paradigm was a great pay-off. He
excitedly told me about it when he barged in the door that afternoon. "Mom!
We had pizza!! First I had one
piece and then I had four! They wouldn't
let me have a fifth." I reminded
him that no person, especially him, needs five pieces of pizza. And he is further convinced that our world is
indeed without any understanding.
The next day
we had a little snow and I knew that Aaron would not like this. He doesn't want to get out in the snow, often
acting like an old man who can't bear the thought of the cold and the
mess. Sure enough, I heard him knock on
my bedroom door as I got ready and then heard his low, depressed, monotone
voice as he said, "I do not want to leave this warm house." He was very flat.........very
resigned........very certain about this fact.
I dressed and then went out in the hall, where I found his door
closed. I opened his door and found Aaron
in his bed, all covered in his warm blankets..........but smiling as I patted
his shoulder. His smile showed me that
he was finding this all to be funny and I was relieved that we were not going
to have a small war over this issue of the messy, cold snow.
He did go to
Paradigm that day, happily, and later in the week he ended the season there
with a Christmas party. He came home
very animated as he held up his Wal-Mart gift card and his stocking with his
name on it...........and which he decided that he wanted to give to visiting
Darcy, who didn't have her own doggie stocking.
He liked the food, too, especially noting some fascinating cookies -
"Mom, we had cookies that had whiteness on them!"
Christmas
Eve was, well, interesting. Aaron was
very happy about the bustle and activity of the day. He came down from his room from time to time
to talk, of course, or to play with Darcy or Jackson. He was very intrigued by Darcy's dog
toy. "Mom! Darcy's dog toy has warts!" And he was also fascinated by the Polish
sausage that I was putting in my spaghetti sauce. "Mom, are you putting that bent hot dog
in the spaghetti?!"
Andrea was
not home during the day, as she was visiting her friend James and his family on
their farm near Salina. Aaron asked
where she was and he did not like the fact that Andrea was not at
home..........and he definitely did not like it when I told him that James
would be joining us for supper and for the evening of games and fun. It was hard to tell why he reacted so
strongly, but I believe he feels an ownership of Andrea. He sees her as a mother figure who is there
for him when she is home. James was an
intruder who took Andrea away from him........a stranger who was going to make
life uncomfortable for Aaron during our special evening.
Sure enough,
Aaron was less than enthusiastic to meet James.
During dinner, as we talked and laughed, Aaron kept muttering comments
to me about this situation. Thankfully,
Aaron didn't have a full blow-up about James, but he was certainly not happy
with this turn of events. It would be so
helpful if Aaron could just express his feelings verbally.......but he usually
can't do that, at least not right away.
So we tensely muddled through the moment, hoping that Aaron was not too
terribly embarrassing to us or to our guest.
And what a blessing that Andrea is very understanding of Aaron, and was
able to smile and put us all at ease.
Later we
played Christmas Bingo, and once again Aaron was very unpleasant. He doesn't like parties, as he sees the
laughter and the silliness that may ensue as being abnormal. Yet he wanted to join us, even as he sat
there making comments about how Gary called out the Bingo moves and being very
rude when we tried to calm or correct him.
We were honestly relieved when Aaron went back up to his room and we
could continue the evening without worrying about Aaron telling us all very
ungraciously about how weird we were and that we needed to shut up!
Christmas
day found Aaron a little unnerved because we decided to open gifts in the
living room instead of the family room.
Change!! And change does not go
over well with Aaron! The family picture
in front of the Christmas tree was an exercise in futility for us, as Aaron did
not want his picture made when it was just time to get on with the gift
opening. And opening gifts, for Aaron,
involves a process. He must have his
little Swiss Army knife for cutting the paper; and he must open each DVD or PC
game right away with his knife; and he
must put the DVD wrappings and tape in his trash can from his room that he has
sitting right beside him. He shows very
little emotion as he continues his mission of opening his presents from
beginning to end..........and then it is over and he must move on to the next
day's event.
The day
after Christmas, Aaron was up and about as usual. He drank his coffee and he took his pills and
he talked a lot as always. He was
upstairs talking to Andrea, as normal as ever, and then walked down the
stairs...........and we heard an awful crash.
Aaron was having a seizure. He
had fallen backwards at the foot of the stairs and was laying there on the hard
floor, seizing. It was terrible and was
very frightening to all of us. Aaron's
seizures have been in his sleep for years now, so this breakthrough seizure was
very surprising. He finally stopped and
Gary placed a pillow under his head as I covered him with a blanket. Aaron is too big for us to move, so he slept
there for awhile as he recovered from this episode. We checked him for blood and we worried about
a concussion, but later when he was able to be helped to his bed we felt that he
was all right.
He has an
ugly bruise and some scrapes on his upper back from hitting a piece of
furniture when he fell. We are very
thankful that there was no major injury to him from such a hard fall. I'll be taking him to the lab for some blood
work to check his levels. Keith, Aaron's
nurse practitioner, told us not to be alarmed at this seizure and not to assume
that these will continue. We hope this
is true. This episode has made us face
an element of fear that we haven't had for a long time. It makes us realize how serious seizures are
and it jerks us back to the reality of how fragile Aaron's health is. How fragile, and how very dangerous and
serious.
And our love
for Aaron was confirmed as we struggled emotionally, watching him lay on that
cold, hard floor both during and after his seizure. He yanks us around a lot.......one minute we
are laughing because of Aaron and the next minute we are so frustrated with his
behavior. The frustrations melt away
when we see him so vulnerable. We know that life for Aaron will never be normal
or easy. Life for Gary and I will never
be normal or easy. But it's the life
that God has chosen for all of us..........for Aaron, for Gary, for me, and for
Andrea and Andrew. I pray that we will
trust God as we travel this road, and that we will bring glory to God as He
enables us to move forward.
Christmas is
a season of light and of hope. Aaron
points us to that light and hope in ways of which he is totally unaware. Whether through our joyful laughter or
through our gritted teeth, Aaron does have his ways of pulling us back to Him
on which our dependence lays. And I
believe that Aaron will receive a great reward for fulfilling that purpose of
his life.
Christmas is also a season of
gifts...........and Aaron is our gift, one which we continue to unwrap and try
to understand every day. He comes with a
no-return policy and on some days, that's a very good thing! On Christmas Eve, I told Aaron not to come in
the bedroom where I was stuffing the stockings. He replied, "So you said you were doing
my personal present?" He was sweet
and hopeful.
God has
given us a personal present in the gift of Aaron. Even on the hard days, we are especially
blessed.
We love you,
Aaron!
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