Showing posts with label Angelman Syndrome in adults. Show all posts
Showing posts with label Angelman Syndrome in adults. Show all posts

Tuesday, December 17, 2013

Sometimes you just gotta change your story...


Today is our 30th anniversary and
I thought this monumental event
deserved some space in the blog this week.
It is so hard to believe that thirty years
 have gone by so quickly.

We both agree that we would go
 back and do it all over again.
All of it...even the mind numbingly, exhausting, 
terrible, horrible, no good, very bad days...
just to have an opportunity to relive 
all the moments of wonderful
we have had together and with our children.

There is a story in our family that has been
repeated hundreds of times...
always by me and always
punctuated with a dramatic eye roll
and a long suffering heavy sigh.

It goes something like this...

Well, you will never believe how
my husband proposed to me!
I nonchalantly mentioned to him
that my apartment lease
was up at the end of the month and
I am certain I was fishing for some
type of a proposal.
He responded in typical Steve fashion
and very matter of factly said,
"We might as well get married then."
That was it.

A few weeks later we were married,
but I have always felt cheated that I didn't have
a big romantic proposal story to tell...
Until now.
 
As our anniversary approached this year
I brought it up...AGAIN,
and my usually very patient husband
turned to me and said, 
"Maybe it's about time you changed your story."
Ouch...
But, he was right.
It is time to change my story.

Sadly, it is only now, thirty years later that I realize
how awful it must have made my husband feel every
single time I told this story.
And I am so, so sorry.

I promise that I will never tell that story again.
So my gift to you my dear husband is a much better version,
a much more accurate version,
of an old worn out story.
It is the version I should have been telling all along.

It goes something like this...

 Well, you will never believe how lucky I am!
Thirty years ago I received a very simple and very
sincere  proposal  from a  very extraordinary  man.
A man who understands that an expensive ring and
a fancy proposal are not the important parts.
A man who understands that the years
spent building a family together,
and building a life together
are the important parts.
I am so blessed.





I can't believe how lucky I am to be married to this guy.


a man who is a wonderful father...
a man  who  has always  put  his family  first...
a  man  who  rushes  home every night  to  be  with us...
a  man  who  believes that  family dinners  are  important...
a man who halves my burdens and doubles my happiness...
a man  who  makes me want to be a  better  person...
a  man who shows  his  love daily  in small  ways...
a man  who is patient beyond all description...
a man who holds tightly to family traditions...
a man who holds our hands as he prays...
a man  who  loves  our  God  and
a  man  who loves his  family.
a man who is good and
kind, and so very,
 very  thoughtful .
And we are
 blessed.

So my dear husband that's my new story.
I hope you can forgive me

And with all my heart I apologize...
 For the hundreds of times that I hurt your feelings and
for the hundreds times I made you feel like you failed me.
For the hundreds of times I belittled you in front of others
 and for the hundreds of times I narrowed the parameters
of our life together down to an imagined crappy proposal.
But mostly, for the hundreds of times I should have told
you instead how thankful I am that you chose me.

Happy Anniversary



And now these three remain: faith, hope and love.
But the greatest of these is love.
1Corinthians 13

 2013

Thursday, November 14, 2013

Scotty's Big Adventure


If you believe, you will receive 
whatever you ask for in prayer.
Matthew 21:22
 
OH HOW WE BELIEVE!!!
Last week we attempted the impossible.
We took Scotty on an airplane.
Something that has not been tried successfully in years...
14 to be exact.
Trust me when I tell you this was a 
huge, gigantic, colossal, gargantuan,  monumental big deal...
considering the last time we tried
 Steve had to rent a car and drive him home.

We decided to brave the hopefully friendly skies and buy
 $900 worth of non-refundable tickets.
OH HOW WE BELIEVED!!!

 I prayed and prayed in the weeks before our trip.
I didn't pray for it to go perfectly,
because that is not an attainable goal
for our overly excitable son.
Instead I prayed that every person he met
would show him understanding, compassion and kindness.

I was not disappointed.

 To the very sweet TSA security officer 
who got her arm pinched
HARD as she was trying to 
help us move to the front of the line...sorry.
I know it hurt because I had to use 
all my strength to pry open his vice-like grip.
She didn't overreact...she patted his hand 
and told him it was okay.
Thank you for your UNDERSTANDING.


To the TSA security agent who helped us through
 the scanner and remained calm 
amidst all the noise and frenetic behavior oozing 
out of our over-excited and over-stimulated son.
Thank you for your COMPASSION.


To the flight attendant who Scotty signaled to
let her know he was thirsty, and brought
him a soda and a huge back of trail mix
before anyone else on the plane.
She was rewarded with a huge self-satisfied smile
and a million thank yous...
which in Scotty sign looks like a blown kiss.
Thank you for being so KIND.

And a hundred others who were not too busy
to say hello and act properly excited
when Scotty"told" them he was going on an airplane.


My only regret is that I didn't get any of their names.
The flight was a piece of cake and he was so, so so
happy to see his Uncle Jeff when we got off the plane.
Several hundred witnesses
can attest to just how excited he was!


Whew!

So we got to spend a wonderful weekend filled with
his young cousins, Ashleigh and Spencer,
 who happily endured a million hugs and kisses.
He would hug them and kiss the top of their heads!
So cute.

Uncle Jeff and Aunt Kim had such a low key
weekend tailor made just for Scotty centered around
 all the things he loves.

Halloween!

 Animals!

 Airplanes!


The hit of the weekend was Gator time!



Including a 9am pajama run


The super shuttle was very busy this weekend.


And just hanging out.

It was a perfect weekend with very little behavior,
surrounded by people who love him,
great food and even a little sleep.

In our world that is perfection,
but of course it was over much too soon.



The trip home was completely without incident.
Nothing...nonexistent...nada...zippo.
That NEVER happens. 

He even got to pet,
and by pet I mean kiss/lick the mouth
a bomb dog at security.
We had to sit on a bench and wait for Steve and the dog
was pulling on his leash trying to get to Scotty,
the officer asked if he liked dogs...
Of course...he IS the dog whisperer♥

When we got home he dropped his stuff and hit the couch,


I caught the flu and Steve unpacked...
Whew!  


It was a beautiful thing watching Scotty 
tackle this overwhelming, overexciting adventure 
with a smile on his face and more self-control than I 
could ever imagine he possessed. 
 Someone is getting his own Frequent Flyer number.

For He will command his angels
concerning you to guard
you in all your ways.
Psalm 91:11


Amen to that!


Wednesday, July 24, 2013

Holy, Holy, Holy is He



Truly I say to you,
unless you turn and
become like children, 
you will never enter the
kingdom of heaven.
Matthew 18:3

From the time Scotty was a very young child he loved to go to church.  In the last few years our church going little guy has turned his love of church into a full time occupation/obsession.  If this child got paid a dollar each time he asked to go to church, listened to the church playlist on his Ipad, watched mass on television, looked at his church books, or actually went to church he would be a billionaire.

His sweet Aunt Jo made him his
very own vestments for his birthday,
and when he wears them
he is reverent...he is holy...he is saintly.



 Alleluia

As soon as we open his door in the morning (or the middle of the night) his first communication of the day is always to ask if we are going bye-bye? The second...is it a church day?  More often than not he is still half asleep and if he doesn't get the answer he is looking for he slams his door and dramatically flops back down on his bed.

The last few years have been challenging and there have been many weekends that Scotty's behavior was so unstable we weren't able to go to church.  Slowly, as he has become calmer and more predictable we have worked our way back.  The last year was spent in a glassed in section behind the church... the room they have designated for all the fussy babies...the cry room, but we were there and that was a huge step.

In the past few months we have made our way through the glass doors to the back of the sanctuary.  Progress!

In the past two weeks we have crossed the final barrier towards "normal" for us. For the first time in several years Scotty was able to receive communion.  The three of us sitting together at mass and receiving communion together is something I was certain was out of our reach forever.

This boy of ours is fully present in every part of the mass. He sits, stands and kneels before everyone else, he follows along in his church book that he holds upside down and will never be able to read, he sings the Amens and Alleluias and his face radiates sheer joy.

I watched him in awe last week as he sat so peacefully and so quietly during the mass.  His face literally glowing with joy in anticipation of receiving the blessed sacrament. I saw that same glow of joy on his face when we celebrated his First Holy Communion so long ago.


Our beloved Father B was the kindest 
and gentlest man I have ever met.
To be in his presence was to be in the presence of God.


 Scotty's faith is simple and pure...it is perfect.
 I envy him.
We had the pleasure last week of celebrating the mass with a newly ordained priest who was on fire for God.  He led us through his journey to finding his vocation, but he told us that being a priest is not his vocation. He reminded us that our vocation is not to be a pilot or teacher, a son or  daughter, or a mother or father.  Our vocation is to be a disciple of Christ.

 

This boy of simple and childlike faith, without realizing it, is a perfect example of what it means to be a disciple of Christ.  Without even trying he is the most Christ-like person I will ever know.

He is joy.  He is light. He is  love.

And he is a blessing to everyone he meets.

For it is written,
"Be Holy for I am Holy"
1Peter 1:16

Wednesday, March 20, 2013

Random Moments and Everyday Miracles

Miracle:
A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be divine. A highly improbable or extraordinary event, development, or accomplishment.
 


Wayne Dyer said, "Miracles come in moments. Be ready and willing."  For us miracles happen every single day.  I know this because at 26 our Scotty, who has defied so many odds, is still learning, still growing and still maturing.  He is by definition a miracle.

Random moments that to the ordinary person are just that...ordinary, but to us they are occurrences that are surprising, inexplicable, highly improbable and extraordinary.  I have compiled some random moments from the last few weeks...small flashes in time that are absolute proof that miracles happen.
 
 
There are two ways to live your life.
One is as though nothing is a miracle. 
The other is as though everything
is a miracle.
Albert Einstein
 
 
1.  Scotty's has taken to "reading" the paper while eating his cereal.  So cute!  And yes it is still very dark out...a much too early morning.  You know it is bad when you have had two cups of coffee by 6am.
 
 
2.  As we sat watching  morning mass together on EWTN he held up his bowl of cereal as an offering when the Priest held up the sacred host.  Together we watched the first televised  appearance of our new Pope, and at Scotty's urging we stood united with Catholics around the world, hands clasped and joined Pope Francis in praying the Our Father, Hail Mary and Glory Be.  Priceless...priceless...priceless.
 
3.  I truly believe our little Houdini has some heavenly assistance with breaking into all the locked doors.  He is still getting in...but when we check the doors they are still locked?  Grandma and Grandpas...not funny!
 
 
4. A few months ago Scotty was a holy terror and made it his mission on a daily basis to dump, destroy, and terrorize the villagers.
 
Exhausted from the ransacking!
 
 
 
 
 This was yesterday, but it was from playing...
 PLAYING with his toys and he cleaned up every single thing!
 
 
 5. Every single time he gets a boo boo or thinks he has a boo boo (which is daily for our little hypochondriac)  he hands us the phone to call the doctor.
 
6. During a little tantrum he picked up the remote control and instead of winging at my head he gently tossed it on the bed and walked away :)
 
7.  Last night at dinner he picked up his dishes and took them to the sink without us reminding him, but the astounding part was he came back and got mine!!!!!!  That has NEVER happened before.
 
 
 
 
8.  Each morning we have to clear all the "snakes" from the bathroom before he can get a shower.  He does this all during the day too.  He comes and lets me know that there is something scary under the fridge or in the bathroom.  Lucky for us our finger guns are always at the ready.  Such an imagination!
 

 9.  For the past few weeks he has been taking a shower and dressing himself without tantrums...a little whining...but no full blown nuclear explosions.  He is capable, but usually unwilling to participate. This is from today.
 
 
 
 
10.  His ability to multi-task seems to increase every single day.  Amazing focus in his otherwise very unfocused world.
 
 





 So many miracles for one little guy.  One of the sweetest things he does is run to the picture wall in the living room whenever something wonderful or exciting happens and puts his little hand up to his mouth, and babbles the bit of news to his sisters and it is so sweet.  It makes me cry every single time, because he misses them just as much as I do♥
 
 
Lastly, Scotty's friend Abby was leaving, after giving us some much needed respite, and he stopped her and gave her the "wait a minute" sign.  He very slowly and patiently searched his Ipad for his TapToTalk program for what he wanted to tell her.
 
The important thing he wanted to tell her was "I love you."
He left us all speechless and needless to
say there was not a dry eye in the house♥
 
 
Sometimes we will never know
the true value of a moment
until it becomes a memory.
~Unknown~
 
 
 
So funny, so cute and so sweet!
 



Thursday, November 29, 2012

Did you know...

...That Santa Claus 
is Coming to Town???  

Well according to this extremely, ridiculously
over-excited young man it is a fact!
Santa WILL be coming down a chimney near you
very soon with a bag overflowing with
guitars, babies, slinkys, whoopie cushions and PUPPIES♥

As soon as the first Christmas decorations
appear in the stores the Santa vigil begins.
Of course these days that is about mid September
so according to my calculations
that equals approximately
91 days of the following litany...

100 times a day he signs Christmas Tree.
100 times a day he points to the calendar and signs Santa.
100 times a day he marches around the house
 anxiously awaiting the Christmas Parade
on Main Street in the Christmas Capitol of Texas.
100 times a day he asks for a Christmas Party.
100 times a day he points to the chimney
and says Ho Ho Ho.

Translation...
500 times a day I have to say,
"Soon,"
or
" In a couple of weeks."
And in the true holiday spirit he responds
with a festive bang, yell or arm folding harumph.
 
What truly amazes me is that for the approximate 91 days
of his personal Santa vigil
he runs downstairs and heads straight for the tree...
hoping beyond all reason that today is the day 
that it will be filled with brightly wrapped packages.



Hebrews 11:1  Now faith is the assurance of things hoped for, the conviction of things not seen.

Read more: http://www.whatchristianswanttoknow.com/bible-verses-about-hope-20-uplifting-scripture-quotes/#ixzz2DX4ArDd9
Hope is really an amazing thing...
we all have it even in seemingly hopeless situations. 
 It is unexplainable and as my friend Gerry always said,
 "It's a God thing."
Hope is really nothing more than faith lived out.

I have made no secret of the fact that we are going through a difficult time right now with Scotty and our days can be challenging and exhausting to say the least.  One morning my husband and I had a few quiet moments before our usually irascible bear awoke from his slumber and we were able to have a conversation that wasn't punctuated by growls and snarls from our feisty little cub.  My first cup of coffee in my hand fortifying myself for the day I said to him, "How is it possible that I wake up every single day with renewed hope that today will be a better day...that today will be the day our life that has temporarily deviated from its once manageable course will once again right itself?"

"How is it that I perpetually hope against 
all hope that today will be the day?"
There is only one answer...
It is a God thing.

So each morning Scotty and I will run down the stairs, 
my beautiful boy will be hoping for Santa...
As for me, I will be hoping beyond all hope
 that today is the day...


Now faith is the assurance of things hoped for, 
the conviction of things not seen.
Hebrews 11:1 
This is one of my all time favorite pictures.
 1987




Hebrews 11:1  Now faith is the assurance of things hoped for, the conviction of things not seen.

Read more: http://www.whatchristianswanttoknow.com/bible-verses-about-hope-20-uplifting-scripture-quotes/#ixzz2DX4ArDd9
Hebrews 11:1  Now faith is the assurance of things hoped for, the conviction of things not seen.

Read more: http://www.whatchristianswanttoknow.com/bible-verses-about-hope-20-uplifting-scripture-quotes/#ixzz2DX4ArDd9