Kate loves to write letters. Often in the mornings I will come into the kitchen to find a stack of letters to her friends. There will be sealed envelopes with her letter jammed into them, scribble on the front, and a sticker in the top right corner - her version of a stamp.
This letter was on the table yesterday. When I asked her why so many stamps, Kate informed me it was going to Santa at the North Pole. I asked her, "You’re sending a letter to Santa in July?" She said she was and then asked me how it would get to the North Pole. I replied, "The mailman will take from our mailbox to the post office and it will probably go in a plane to the North Pole." She pumped her fists and said,"Great!" Although Kate is 30, she still believes in Santa. It is one of the joys of having Kate in our family as we will always have the magic of Christmas. In fact last year she sat on his right -kinda big for the lap-and went over the list with him.
She told me the letter was her Christmas list. (And I thought I had a jump start on Christmas). Then she asked me how long it will take to get to Santa from Arizona. I told her probably about a week. She said, "Great" again and that she would be waiting for her presents next week. I tried to explain to her that’s not how it works, that Santa doesn’t bring the gifts until Christmas. But she was sure they would come after he got her letter. Next week is going to be a very long week for everyone when she realizes the only packages coming to the house are the ones I ordered on Amazon Prime Day.
Do you have a day etched in your
memory? Mine was August 28, 1990. Kate was about 18 months old and we had just
gone through a battery of testing because she wasn’t hitting her
milestones.
My Mom was with me
and we had Sarah in a stroller crammed into a tiny doctor’s office. The doctor
told me that the results of their testing showed that Kate may never walk or
talk. That Sarah would surpass her and we need to be prepared for what our
future is going to look like. I was in a state of shock.
I remember driving
down the expressway that stormy afternoon, crying, thinking about what the
doctor said and being very angry at him. About that time the news reported
that a devastating tornado had just hit
Plainfield, IL, only 30 minutes from where we were. I remember feeling like a
tornado had hit my family that day also.
When I married Art
it was a “two-for” as Justin was 7 when we married. Kate was my first birth
child. To say I was naive would be an understatement. However, sometimes
being naive is an advantage. When we were told Kate was developmentally
delayed, we assumed delayed meant she would catch up. It wasn’t until this appointment
that we were told to get prepared for the rocky road. I didn't realize his test
results were the truth. Good thing.
After getting over
the shock and crying a lot of tears, we decided to prove him wrong. Everything
we did for Kate after that was in an effort to allow her to have the best life
possible no matter what other people said her limits were. I enrolled her
in every kind of therapy I could find available. Speech therapy, physical
therapy, occupational therapy, hippo therapy, music therapy. Anything and
everything I could find. We had signs up all over the house naming
objects, we learned sign language so we could communicate with her.
Poor Sarah and soon
Patty, were drug around to every specialist I could find who might have an
answer as to what we could do to help her achieve what we was told she
couldn’t.I can remember
driving to Wisconsin to a ladies house to have orthopedics made on
her dining room table because I was told she did it the best. We drove down to
Peoria to see a doctor who specialized in homeopathic medicine to put Kate on
all kinds of supplements.
Never let someone
tell you there is a limit to your abilities. I remember thinking a doctor is a
person who has more book knowledge than me, but only until I read that book.
He doesn’t know Kate, he doesn’t know my family and what were able to do.
I would love to run
into this doctor and have him meet Kate now. She participates in Special Olympics,
track and field, bowling and bocce ball. This is a video of her getting her
medal at this year‘s track and field event.
Yesterday I came out
to the dining room to catch Kate asking Google Home what the weather was going
to be that day. After Google answered her she said, "Thank you"
a number of times, until finally Google answered her with, “You’re welcome.” So
I watched my Kate having a conversation with Google, the most powerful search
engine in the world.
Empathy - the ability to understand and share the feelings of another
Compassion - sympathetic pity and concern for the sufferings or misfortunes of others
Kindness - the quality of being friendly, generous, and considerate.
I’m not sure what to call it, empathy, compassion or kindness, but Kate is overflowing with it. Here are just three examples.
One: Recently it was Kate's sister Sarah’s birthday. She lives way across the country so we had to send her a birthday box. I got Sarah a gift card from Kate, but Kate LOVES to shop for gifts so off we head to the dollar store. She picked out the presents she wanted to send to Rocket Girl, as she calls her, and I was impressed by the thoughtfulness of each gift as they dropped into the basket. A crown for the Princess and Princess Napkins … we have always teased that Sarah was the Princess. A towel that expands when you get it wet and has a race car on it. Sarah built and raced solar cars. Flip flops. Sarah loves the beach. Purple gardening gloves because Sarah LOVES to pull weeds and purple is Kate's favorite color. And the assorted birthday necessities: candles, banner and birthday girl ribbon. Kate definitely loves her sister and shared her Joy with gifts she thought she would like.
Two: Kate and I were driving on the back roads to Wal-Mart one hot summer day. At a T-intersection, we take a right. Standing there on the corner is a women dressed in all black, in the hot sun, looking at a brochure. Kate, of course, wants to stop and give her a ride. I explain stranger danger to her again – for the millionth time – and we go on our way. We finish our shopping and on the way home, we notice she is still standing there, in black, in the hot sun, not looking at the brochure any longer but looking at her watch. From the front seat to my right I hear “MMMOOOOOMMM!”
So, I roll down my window and ask her if she is okay. She tells us she is waiting for the bus. Hmmmm. I tell her there is no bus stop there but I know where the bus station is – and – I offered her a ride. Kate's' dream came true – a stranger got into our car.
Of course she was very appreciative and told us she had applied for a job across the street from where we saw her standing. She had gotten a ride there and was told the bus stop was across the street to get back home. She felt really good about the job interview but the longer she stood there the more concerned she became. Of course she and Kate carried on a long conversation all the way to the bus station. You know what happened next, Kate asked for her phone number and she kindly obliged. Again, Kate was sharing her Joy and showing empathy/compassion/kindness.
Three: We do respite for a young lady who is wheelchair bound, blind and
non-verbal. As a family, we move into their house and take care of her there. Most of her day she is sitting, strapped into a wheel chair or lying on her stomach in her bed. Not much fun for her. There are two couches in the family room and each has two recliners with a storage area in the middle. When we stay there, we would turn one of the couches to face the entertainment center for Kate to watch TV and recline and on the other side we put Kathryn. She would sit there for hours and not make a single noise. How relaxing for her … and us.
While scrolling through Facebook today an ad came up and Kate saw it. She made me go back to it and she said, “We need to buy that for Kathryn. She would love it!” I looked at what she was pointing to and it was a hanging chair with an umbrella. I told her, "You are right, Kate, she would! But it costs a lot of money." She then got up and went into her room, got her piggy bank with her $7.00 in change in it and said I could use that. I know it is $7.00 because we count it almost daily. She is saving for a new cell phone, or snack bag, she isn't sure which. Again, the empathy/compassion/kindness was overflowing from my Kate.
If only there were more people in this world who would show empathy-compassion-kindness = Joy to strangers and family alike, we would all be able to do what Kate told us multiple times last week, "Don't worry, be happy!"
Art
and I were commenting this week on the fact that Kate has really been listening
intently to conversations lately and asking very thoughtful questions about the
topics discussed.
It
reminded us of the time that he and Kate flew from Arizona to Illinois
together. We didn’t just pick up and move to Arizona one day. It was a five-year
plan to get the four of us here. A lot of preparation must be taken when moving
disabled adults across country successfully.
Once
we had purchased our home and I had secured a position, we needed to get Kate
enrolled in her Day Program, Marc Community Resources. That is a three-month
process… three months too long for her to be sitting around the house. Structure
is one thing that keeps us all sane.
Stage
one was getting the dogs, Art, Kate and myself out to Arizona into our home, becoming
Arizona residents and getting the paperwork started for Kate. Once that was
complete, Art flew home with Kate and she returned to her program at Our Place and he went back to
work until the final move.
We
were both very nervous about them flying. Kate had flown once when she was
little and I’m pretty sure I sedated her. Then there is the bathroom issue… he
can’t take her in there and she can’t go with him. Being able to use the family
bathrooms was life changing! She went first, then Art went, and she stayed
right outside the door and he talked to her the entire time. He then made sure
neither one drank any liquids till they got to Illinois.
As
she does talk, a lot... to anyone about anything Art made the decision for the
benefit of his fellow passengers to wait for the plane at a different gate so
not to wear out the ears of the people on their flight. So, the people at the “waiting
gate” I’m sure were thankful that Miss Chatty wasn’t on their flight and the
people on his flight had no idea the kindness he had just shown them. Such a
smart man.
While
waiting he suggested they go to the window and look at the planes, thinking
this would entertain her. They did, and in doing so they walked in front of
someone who had taken off his shoes, so of course she did also. Try to explain
to her why she shouldn’t do that in front of an adult who did… awkward.
Finally,
they boarded the plane and he was getting her all settled in, she was in the middle
and he was on the isle. Pretty soon the stewardess was making the airline
safety announcements. The first instruction to come across the loud speaker was
“Please put down you trays and electronic devices and listen to the
instructions.” Kates’ response was “No thank you”.
Then
they explained how the life vests operated. Art said the look on her face was
priceless when she asked him, “Do we need these?” Then came the exit and
emergency evacuation instructions. She wanted to know what emergency and where do
they go… keep in mind she doesn’t speak quietly. I’m sure the experienced
passengers around her got a chuckle out of that - and maybe paid attention
since she asked such pertinent questions.
