Wednesday, October 10, 2012

Parallel Worlds

Since coming to grips with Aidan condition, I have started to see the world divided into what I  call "the seemingly normal" and the "not so seemingly normal" worlds. They are much like parallel worlds, extending in the same direction but, not necessarily meeting.

 Families of special needs children seem to be visiting places most seemingly normal families do not. Like the waiting room of a neurologist office.

 In the seemingly normal world, if you just blink for a second, you may not see the special needs children around.

I see them because I'm in the "not so normal" world.

I visited this not so normal world today while taking Aidan to OT at the Professional Therapies office.  I opened the door and there sat a young girl on the floor. Her parents sat in the chairs behind her. She was watching a man put together a wheelchair. He was a friendly, cheerful man. (Good thing, I suppose, if your job is delivering and assembling wheelchairs for children.)  It was cobalt blue with purple trim. She was very excited! We said hello and Aidan was fascinated with the sight of the chair. He loves anything with wheels and seeing it built right before his very eyes was pretty spectacular. (A little like a live episode of Bob The Builder:)

The  parents were saying encouraging things to their daughter - like what a good job she did picking out her new chair, while Bob The Builder was educating the parents on the features of the chair. The wheels didn't need air: they would never go flat. She could grow with the chair and he pointed out the sliding back. When he was finished, she climbed into it and took it for a shy spin around the room. Aidan gave her the thumbs up.:) We all smiled at this precious little girl wearing a bow clipped to her hair almost the size of her head. Meanwhile, Bob (because I name strangers) went back out to his van   and brought back in bathtub chair, and the instructions continued. This family seemed fairly comfortable in this not so normal world. Positive at least...accepting at most. These were exceptional parents. This child must require a lot of care.

"To maintain a joyful family - each member of the family must become, in a special way, the servant of the others." ~Pope John Paul 11

Everyone in the room (in this not so normal world) had a story and probably had experienced the five stages of grief after receiving the diagnosis of their loved one.

 Denial, anger, bargaining, depression and acceptance.

In walks the next family. This man's substantial size filled the door frame -  a man with tangible authority. One little girl hanging on to his neck, another little girls hand swallowed up in his. These girls had their own personal body guard - add in the dad factor, and watch out!  If I were to give him a name, it probably wouldn't have been Bob The Builder. Unless it was something like "Bob The Imma Gunna Build You A New Nose If You Touch My Babies." He settled one little daughter into a chair and got her started on her homework all while holding the other daughter in his arms.
 Her wheelchair must have been back in the car.....

"Show me someone who has done something worthwhile, and I will show you someone who has overcome adversity." ~Lou Holtz

Sometimes, families with special needs children seem to count up the minuses. What they can't do. Aidan can't talk, use a straw, blow bubbles and every meal is a choking hazard. These other children can't walk. What foods must be banned, which activities the children can't take part in. The minuses can add up! But then there are the victories, the new signs learned for words not spoken and the new wheelchairs and bath chairs which help to make things just a little more normal. And, the wonderful people that come into our lives to help.
This is Aidan signing BIG! to his speech teacher. (I think that is one of his favorite signs..that and FAST:)  This picture taken from  room with a two-way mirror. What would we have done without these wonderful people from the Radford Speech and Hearing Clinic?

No one signs up for this. It's painful to see the ones you love struggle. Everyone wants to feel normal and fit in.

(Well, unless it's me and I am sitting in Cracker Barrel...I don't want to fit in there for years and years and years;)

"A day without laughter, is a day wasted." ~ Charlie Chaplin

So, we make the best of it and press on...finding laughter where we can. We persevere.

"Perseverance is not a long race. It's many short races, one after another."

I can probably handle short races, even if they are one after another.

And as Aidan likes to hear:"Gentlemen, start your engines!"

I think we can do this...(with a couple pit stops:)