They need to tell you something...

My daughter participates in a drama program.  For most productions she will be in the ensemble singing and dancing her heart out.  She would love to have a solo, but due to the extraordinary talent others possess and some of her challenges, that is not likely.  This is the hard truth of theater...not everyone can be the star.

But, a Talent Showcase allows for out of the box thinking.  This fall the Drama Company did just that.  Miss A and her best buddy were able to sign to a song that expresses their feelings and it brought many in the audience to tears.

They were able to do an encore performance at the Advocates Talent Show this spring and we caught it on cell phone film....so please excuse the wobbliness of the video.

I give you, "I Can Love"...by Joni Eareckson Tada...signed by two very proud performers.


http://youtu.be/GYvrPSdBy5g

We need to celebrate Moms!!!!

Here is a link to my May article in Family Times.  I remember reading Erma Bombeck's column that contained the quote I reference in this piece...it made sense to me as there is a natural tendency to give up all for our children and then we lose ourselves.  A balance can be reached....I think???

http://www.familytimes.biz/index.php?mact=News,cntnt01,detail,0&cntnt01articleid=569&cntnt01origid=16&cntnt01category_id=23&cntnt01returnid=16

I need to tell you, there is hope...

Some of my fondest memories as a kid is when my mom would take all of us to the movies.  Remember "The World's Strongest Man"? "Freaky Friday"? "Benji"? The stay at home moms in the neighborhood would pile all us kids in whomever's station wagon and we would head to the mall.

I wanted to do the same thing with my kids...except Miss A had an overwhelming fear of the movie theater.  It was too dark.  It was too loud.  It was too unfamiliar.  And I swear she thought the seats were going to eat her.

I tried everything.  I had her attempt to wear ear muffs.  I waited until the previews were over so the movie she wanted to see was starting.  I bribed with candy and popcorn.

I would walk out with her before the movie had even got going, having spent $20+ dollars with no fun being had.

I had mild success one summer with the free movie experience...They left the back doors of the theater room open, and did not have the sound cranked up to deafening.  I sat in the back row of the theater as she walked in and out of the door, stood in the aisle, and finally, the last 5 minutes of the movie, sat on the floor and watched...yes, avoiding the child eating seats.  That was "The Piglet Movie".

I kept trying.  We had the most success when it was a movie she had already seen and we came in when it had started, so she knew exactly what was going to happen and felt safe.

Until..."Tangled"...That was the very first time she went into a theater and with minimal protesting, sat in the "seats for people with special needs" which have a huge space in front of them, and don't flip up and down...kind of like being in the aisle, with seats that don't bite you.  She had never seen it before but it starts out with a nice quiet scene...unlike "Beauty and the Beast"...or "Peter Pan 2"...huge failures that probably set us back years.  When "Tangled" ended, she had a smile on her face and me, wiping away tears, felt like we had made a major breakthrough.

Our last obstacle were the 3D glasses.  She would refuse to put them on.  No matter what I did she would insist on watching the whole darn thing without them on.  Have you ever tried that?  It gives you such a head ache.

Until this Spring Break.  We went to see "Oz the Great and Powerful", in 3D.  It is truly spectacular.  I sat between Miss A and J.  She put her glasses on...after the part that feels like a roller coaster that starts every movie.

I looked over at her when Oz is going through the river with flowers opening and faerie sprites are floating by...her arms were stretched out as she tried to touch them, a smile on her face.  She turned to me.  "It's so cool", she said.  Yes it is...thought I.  Only took 15 years, but so worth the wait!

She needed to do this!

Way back when Miss A was 8 years old and we lived in California, she participated in her first Special Olympics Summer Games.  The event was over two days and her competition lasted only one, so for the second day we went as spectators.

We wandered the grounds, played games, went to booths, and then, before us appeared the swimming pool.  In California, College and High School pools are outdoors.  We could hear the sound of the starting gun.  We could hear the cheering of the crowd.  We decided to go have a look.

We stayed for over 2 hours.  We didn't know any of the athletes in the competition.  That didn't matter.  Miss A was mesmerized.  She did not want to leave.  She looked at me and said, "Mom, I am going to do that."

There in the warm California sun I sat.  I hoped she someday would.  See, at this point, she still had her tracheostomy.  She still could not really put her whole body in the water.  She had never even tried swimming.  None of that mattered to her though.  She knew it was what she wanted to do.

Miss A was able to have her trach removed when she was 12.  We immediately started her on swimming lessons at the YMCA locally in Fayetteville NY...where we now live.  You can only imagine, having been told your whole life to not get your neck wet, how hard it was to feel comfortable putting your face in the water and blowing bubbles.

It was a slow process.  Putting her face in the water....step one.  Going completely under, step two.  Learning strokes to actually float, step three.  Swimming in the deep end, step four.  Jumping off a diving board, step 5.

Last night, Miss A went to a Special Olympics Swim Practice for the very first time.  The team has been meeting since January.  As luck would have it, last night was a time trial.  All the athletes had to at least swim the length of the pool.  They could either dive off a block, or start in the water.  They all swam free style.

When it was A's turn, I sat there and wondered...did she know what to do?  Would she go when she heard the whistle?  Would she dive off the block?  Would she swim the whole way?...

Silly me...  Tweet went the whistle, and off she dove from the block and headed all the way down the lane...almost to the end, when she realized she could stand, she did.  The coach nearby told her to keep swimming.  She took one last stroke to the edge of the pool, looked at me and gave me a thumbs up.

The coach came over to me and said, "She fits right in."  Sure she does...she has been waiting for this moment for almost all her life.  In her head she had been ready all along.

April is the Special Needs Issue for Family Times...

so I thought I would share the link to my article for this month:

http://www.pageturnpro.com/Family-Times/49703-Family-Times-April-2013/index.html#8


hope you enjoy!!!!

I need to let go of worry...

At first I was going to write,"I need to not worry."...but, I have accepted the fact that I am a worrier.

I have been since I was a little kid.  I would worry if someone would like me.  I would worry if someone thought my clothes were funny.  I would worry if I thought someone was talking about me.  I would worry about giving the wrong answer.  I would worry that people might think I was "uncool".  I would worry about making a mistake, or not being good enough, or missing the basketball shot.

As I have gotten older I still worry.  I worry about Miss A's transition to High School.  I worry about J leaving Montessori.  I worry about the health of my family.  I worry about how I am raising my children and if I am doing a good job.  I worry about relationships with family and how I might be better at it.  I worry about career choices and money.

I WORRY!!!!

Thing is...worrying gets me nowhere.  It makes me lose sleep.  It makes me not eat.  It turns my hair gray.  It makes me crabby and short with people.  It makes me not focused on the now.  And, bottom line...it doesn't help or solve anything.

But I think I am too old to change my "worrier state".  I think asking myself to just "not worry", is impossible.  What I think I can do is acknowledge what ever my "worry" is about, then realize that perseverating and obsessing about it will do me no good.  Once I have established I have no way to effect the situation.  Once I have used caution where it is needed, or made changes if I can...I need to let it go.  I need to give it to God.  I need to release it to the air...I need to do whatever it is that makes me realize I have no control and I need to move on.

That is my plan anyway.  I would say I am worried it won't work...but I won't go there!

You need to understand why I have gray hair....

Miss A was not feeling 100%, but she seemed to be on the mend.  Her drama program was performing at a church during their Sunday Service.  The drama group's numbers would include, "Supercalifragilisticexpialidocious" from Mary Poppins and "Lord of the Dance".

Miss A was not in "Lord of the Dance".  The singing was very involved and technical and she just couldn't quite hang yet...which was fine.  She enjoyed watching the other kids perform.

She and I were sitting in a front pew as the group was putting in a final rehearsal of the above mentioned song.  We were about 45 minutes from the actual performance.

I glanced at Miss A and noticed she was starting to look mushy.  She was drooping down in the pew and did not look her normal pre performance, "I am at CSPA!", energetic self.

I decided, since her blood sugar had been questionably high that morning, to do a test to see where she was at.   HIGH!!!  was what the meter read...crap!

Ok, so I decided the insulin pod, controlled by her pump computer must not be working.  I needed to remove the one she was wearing (attached by adhesive on her arm) and replace it with a new one.

Sounds easy enough right?  But first I have to convince the girl to leave the church as the replacement pods are in the car and I really don't want to do this multi-step process while sitting where we were...

Girlfriend does not want to leave.  This would be somewhat typical as she doesn't want to leave the "stage area...EVER!!!" but you must add to the fact that she was feeling very high blood sugar...not good.

Thankfully she (with a little manual assistance from me) left the church with minimal resistance.

We got to the car.  She sat in the front seat.  I got the spare pod out of the green bag that holds all our supplies.  I deactivated the "bad pod" and proceeded to load the new pod with insulin.  It was not letting me..but I forced it...as I was pretty certain this is the only "spare" pod I had in the car.  I attempted to "activate" the pod with the computer and it would not go...ARGH!!!!!

Now what???  I was muttering under my breath and praying that I had another pod in the bag...when low and behold, one appeared under all the other supplies within.  WAHOO!!!!

I deactivated the second "bad pod" and attempted to load the 3rd with insulin...IT WON"T GO IN!!!!  What the %&$&%$!!!!!

Ok, so now it was probably 12 minutes to show time and I had a decision to make...I couldn't call Brian as he was at the soccer game that J was not at since he was also in this performance...So Brian was nowhere that he had access to a pod.  If I drove home with A...which I would probably have to sit on as she will be trying to get out of the car to get back to the show, I would not make it back in time.  But I NEEDED to get insulin in her.

I hadn't given her a shot of insulin in 2 years because she used the pump.  In my frazzled, frantic state I didn't feel comfortable guesstimating ..so I turned my phone back on...waited for it to go through it's Droid gyrations, as I had turned it off for church.  I called the "on call Joslin Diabetes" line as it was Sunday.  I waited for it to ring 88 times(ok that might be a slight exaggeration) and then left my number.  I needed directions on what to do...as I didn't know what her blood sugar number was exactly and I didn't know how much medicine to safely give.

We are now about 8 minutes from performance time.

I tried to keep A calm and happy as if she lost it we would have more issues.  I told her how great she was being and how proud I was that she came out of the church.  I was (in my head) thinking all kinds of bad thoughts and wondered why, oh why, crap like this seemed to happen all the time).

I started putting stuff back in the green bag and HOLY BLEEP, what did I find???...one more POD!!!

Will it work?  I said a prayer and started attempting to put insulin in it.  My phone rang, On call Doctor at hand.  I told her what was going on and asked her to stay on the line as I attempted to activate the 4th pod...which I am sure was put in my bag by God as I never have that many spares...EVER!!!!

It worked!  I gave Miss A a correction dose.  Put everything back in the bag.  Thanked the Doctor on the phone who waited to make sure I didn't need information about how to give an insulin dose by needle...and also gave me directions on how to do that if this ever happens again.

I hurried Miss A back into the church.  She waited in the back of the church for the choir to stop singing...and her group was called to the alter/stage to perform.  We made it with 2 minutes to spare.  It all worked out.  They did great.

I stood in the back of the church.  I thanked God. I had tears in  my eyes. I am sure I looked like shell shocked, dog doo...and anyone who noticed probably thought I was just nervous as to what Miss A and J were going to do during the performance...but you know better.  And now you know why I have lots of gray hair.