Perks of Living with an Angel

And even if somebody else has it much worse, 

that doesn't really change the fact 

that you have what you have. 

Good and bad.

Perks of Being a Wallflower

Stephen Chbosky

This post has absolutely nothing to do with the book/movie Perks of Being a Wallflower, but the title lends itself to reflection.  I suppose that every situation, good or bad, comes with some perks...we just need to acknowledge them and give value to them.

Living with an angel is much like being a wallflower...it has forced us to live on the sidelines of life.  Certainly we participate in all the ways that we can, but it is always around the perimeter...up against a wall and close to an exit. Close enough to delude ourselves into believing that we are a part of the frenetic flow of the rest of the world.

In reality we are not participants. 

We are merely observers.  

We never get to sit at the cool kids table.

We are the outsiders.

So I decided to compile a list of 

the perks that come from living with our angel.

**Leave a comment below to add to the list!

1. Scotty has always been my get out of jail free card.  Spaghetti dinners, car washes, bake sales, cleaning up trash along the highway....Hmmmm, Gee I would really like to help, but I need to be home with Scotty. (My secret is out!)

2.  He has slowed us down and kept us from rushing through our life.

3.  His level of enthusiasm in any given situation is exactly the same.  A hamburger or a trip to Disneyland causes  him to jump for joy in celebration!

4.  He still believes in Santa Claus.

5.  He has shown us what it feels like to be really and truly unconditionally loved.

6.  His  smiles and belly laughs emanate pure joy.

7.  He has taught us to believe in miracles.

8. He has taught us to run our best race even though we can't see the finish line

9. He has shown us that life is not about waiting for the storm to pass...It's about learning to dance in the rain. ( I don't know who wrote this, but I love it♥)

 10.  I have been waiting to use this next one for awhile.  It was a comment on one of my posts.  It is from a young man named Scott whose brother Daniel (age 36) has Angelman Syndrome.  I thought it was so beautiful and so well said...

 " I think that, along with the "not growing up" part of AS, 

comes a feeling that a memory of something that

 happened years ago could have happened yesterday. 

 Our grandfather passed away about 20 years ago, 

but when my brother
Daniel sees him in photos or old videotapes, 

he most certainly recognizes who Grandpa is. 

 Living a "Groundhog Day" kind of life doesn't only mean 

that today is always the same, 

but the past is never more than a day away either."  

 10.  And last but not least our Scotty has taught us to appreciate the hilarity of a whoopie cushion...

Update:  Scotty is still doing well off his medication.  He still has the same behaviors he has always had...hitting, pinching, banging, throwing and hair pulling...but they are SO MUCH less intense and he is easily redirected.  For example, if he pulls my hair I say, "Oh is mommy's hair soft?  Does it smell good I just washed it?"  He will giggle, smell my hair and go about his business.  Today he stood in front of a basket of toys and put his hand out like he was going to push it off.  I gave him the tiniest head nod to say no and he smiled at me and walked away. He also picked up a DVD with the intention to throw it but instead he laid it gently on the floor instead...what a character!

♥Keep the prayers coming♥

 

This App is called Touch & Say.

Scotty loves it.

 It repeats back sounds and words in a silly voice.

Scotty loves it...AND IT IS FREE!