Monday, July 16, 2018

The Sky is the Limit!

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.  

I’d say we have met our goals. 

Monday, July 9, 2018

Empathy-Compassion-Kindness = Joy

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!"

Monday, July 2, 2018

Flight Instructions

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.

Monday, June 25, 2018

Skinned Knee Drama

At least once a year we provide respite for the Blasco family. Barb and Rich take a much needed vacation, while Art, Kate, I, and our two four-footers move into their home to take care of their daughter. Kathryn is a 39 year old blue-eyed beauty who has been disabled since birth. You can read all about her in this book that Barb wrote titled: It's a Girl...But Will She Live?

We recently spent 13 days at their home. Our daily routine during the work week is this: I leave for work first. Kate and Kathryn attend the same Day Program, so the bus picks them both up and delivers them to Marc. Art cleans up around the Blasco home and then heads back to do what he needs to do at our home and takes the four-footers with him. He is then back to the Blasco home by 3 pm to get the girls off the bus and feeds them. I get back there around 6 pm and he feeds me. We get up and do it again the next day.

On the second Monday we were there, Kate fell while at Marc and scrapped her knee
pretty good.  She has very poor vision and if her glasses are dirty well...  Also, she is so busy moving onto the next person to talk to or catch up to someone, she doesn't see where she is putting her foot and does fall often. She is always in a hurry to get through life!

She told me she couldn't go to water aerobics because of her knee (which she first identified as her toe, then her ankle, finally her knee). I told her we would put some Neosporin on it and it would be fine.

Art called me later that day. He said Kate was "very concerned" about her knee. When she is "very concerned", she is usually crying and talking at the same time. She was sure that she couldn't go into the pool with it like that. He said he thought she wanted to loose the leg so she could go do her water aerobics. I was like what are you talking about. He said she asked him to bring poison back from the house to put on her knee so she could go into the pool.... Poison I said?  ...  Oh - she meant Neosporin! Which I guess when Kate says it sounds like poison.  

Of course we will now call Neosporin "poison" and smile.