Showing posts with label Angelman Syndrome. Show all posts

Monday, November 3, 2014

A Really Big Moment in the Sandbox

Guess What?

I am taking over my mom's blog this week to

share some very cool news about my mommy.

She started this little blog about me over a year ago and,

trust me when I tell you that I give her plenty of material.

I don't mean to brag but,

I think it is safe to say that my shenanigans are EPIC!

When she started this blog her goals were simple:

1. SPREAD AWARENESS FOR ANGELMAN SYNDROME.

2. Be an inspiration and a source of hope

for others who are struggling

in this very confusing and chaotic life we are living.

3. Maybe, just maybe, someone would be

interested in her ideas and storytelling

and fulfill her lifelong desire to be a published author.

SO GUESS WHAT?

(.....humming Jeopardy music....)

If you guessed #3 you got it!

She sold one of her stories

(she would add the word FINALLY to this sentence)

about yours truly to

GUIDEPOSTS online magazine.

They sent her a contract and paid her and everything!

It is the real deal!

So please follow the link below and leave a comment

and share it on Google Plus, and Facebook.

Don't forget to mention the blog too if it will let you.

SHARE, SHARE, SHARE!

Her hope is to make a big splash on the website

so Guideposts will want to print more of her stories

about living with

ANGELMAN SYNDROME!

Can you imagine the impact?

LINK:

Guideposts Mysterious Ways The Longest Prayer

Disclaimer on the actual coolness factor: I sent them the story...actually I have probably sent them 50 and entered several contests with book ideas. I got my first taste of editing. Wow! Most of my ideas are there and many of my words but....

Wednesday, February 26, 2014

ENOUGH

sufficient, acceptable, full, abundant,

over-flowing, plentiful, unlimited,

cup runs over with

I have recently started using the word "ENOUGH"

often and with great purpose,

although not in the way one might suspect.

Not in the ENOUGH IS ENOUGH

the I HAVE HAD ENOUGH way.

It is the kind of ENOUGH that

Mother Teresa speaks of in the above quote.

The kind of ENOUGH that lets me find
moments of blessing in

every single day.

It is the kind of ENOUGH that reminds me

that I don't need anything

more than what I have right now.

Now is ENOUGH.

It is the kind of ENOUGH that makes my heart

beat in a rhythm of calmness and contentment.

It is the kind of ENOUGH that fills my soul

with gratefulness and peace.

ENOUGH.

I love this photo.
It is us in a flower pot.
Lopsided, misshapen, battered, gnarled,
and moving in a
completely different direction
than all the other trees...
Yet it continues to grow and thrive
despite its asymmetric and seemingly
unbalanced trunk.

I have very rarely felt strong ENOUGH
for my very out of the ordinary life,
but I have faith
like the little tree above,
that Steve and I are
more than strong ENOUGH
to keep this whole thing from tipping over.

In turning my new philosophy into action I wanted

to share a wondrous moment of blessing.

An awe-inspiring moment of gratefulness.

An extraordinary moment of ENOUGH.

Monday is laundry day.

My usual routine is to fold all the laundry

and make piles on the couch to be carried upstairs later.

The other day as I waited on load four to dry

I decided to jump on the treadmill for the last ten minutes...

And Scotty let me...

Hmmm.....extremely unusual.

When the buzzer went off and I went to check

the dryer and glanced at the couch.

It was completely empty?

There was not so much as a sock

anywhere to be found.

I couldn't even wrap my brain around it.

As I began to question my sanity I heard

Scotty galloping down the stairs

laughing and jumping up and down

with sheer happiness.

Clearly he was beside himself with excitement.

He grabbed my hand and dragged

me upstairs where he proudly

and with great flourish presented to me

my previously neatly folded and sorted laundry...

in a giant heap at the top of the stairs.

His beautiful smile was literally from ear to ear.

He wore his pride like a badge of honor.

He helped...

I didn't ask. I didn't beg. I didn't bribe.

My sweet little man,

did something for me,
FOR ME

all by himself

and left us both laughing and
jumping up and down

with sheer happiness.

And it was more than ENOUGH.

God has dealt graciously with me

and I have ENOUGH.

Genesis 33:12

A little shout out to all my fellow angel mamas

who are having a difficult time right now...

But seek first His kingdom and

His righteousness, and all these things will be added to you.

So do not worry about tomorrow;

for tomorrow will care for itself.

Each day has ENOUGH trouble of its own.

Matthew 6:33-34

Wednesday, February 5, 2014

Angel "Kisses"

As a rule I have tried to balance the monumental challenges with the extraordinary blessings that come with raising a child with special needs in this blog. Some weeks naturally weigh more heavily on one side or the other, but in fact to me they are one in the same.

You see without the challenges the blessings would not seem so sweet, and without the blessings the challenges would be too much to bear.

In my posts I have tried to keep it honest and real, but the fact remains that much of it has been somewhat sugar-coated, because quite honestly most people couldn't handle the truth! Not many people want to read about how we spent four hours cleaning up poop from every, and I do mean every surface in Scotty's bedroom and from every square inch of his body.

Thank God this little pastime of his ended many years ago, but the horror of the memory lingers on...and on...and on.

So when he gets up at 3am we can acknowledge our exhaustion, but be so thankful that he didn't use poop as an artistic medium to redecorate his room. So there you go...without the challenge the blessing would not be nearly so easy to recognize.

A few years ago I joined the Facebook. For most people it is a place to keep in touch with friends, share jokes, recipes, political opinions and some general silliness. Personally, Facebook has changed my life. I have been blessed to have found a group of parents, who like us are living a very extraordinary life with an angel. A life that defies description with mere words or photos...a life much different than the one we had all planned.

These families inspire me with their stories, with their courage, and with the fierce love they have for their children. Our stories though similar are each unique and in sharing our challenges with one another our blessings have now been multiplied.

Today's blog is not at all the one I had intended to write, but it is the one I needed to write. Yesterday a fellow "angel momma" Kristi Murray, wrote a post about her son Nicholas who is a 12 year old angel. Her sweet boy had given her a few "angel kisses" on her hands for all the world to see. A visual that couldn't be covered up or sugar-coated.

Angel "kisses", by my definition, can come in the form of bruises, bites, sprains, pinches, pulled hair and some pretty impressive hits and kicks from these children of ours who have extremely low muscle tone.

Her son, like mine, is only able to express himself through his actions. Anger, frustration, sadness and even happiness can result in a very painful "angel kiss". There is no malice or hatred behind it...it is just their way.

Yes...it hurts. There is pain involved. More often than not it hurts my feelings more than actual physical pain. Okay, that is probably sugar-coating...getting my hair pulled by a 165 pound man really does hurt an awful lot, but the kiss on the top of my head afterwards is so incredibly sweet.

Day by day we soldier on holding one another up and reminding each other to find the blessings in our challenges.

So thank you Kristi for allowing me to share your post and your beautiful, beautiful boy on the blog today.

Thank you for your words yesterday that showed up on my wall just when I needed them.

Let all that you do be done in love.

1 Corinthians 16:14

From Kristi:

This morning, at the Women's Bible Study I attend with my mom, I happened to look down and saw this pitiful sight.

Check out my hand. THIS is what a special needs mom looks like. This is the outcome of having a child who can't communicate and needs to pinch you to get your attention or let you know he doesn't like what's on TV.

I can slap on a cute bracelet and ring…but the scars are still there.

And that's ok.

Because the topic in our class today was how God is WITH and IN His believers. We have HIS power to get through times and situations that aren't pretty.

I can do this. WE can do this, Angel Mommas. And if you are a Believer, we have the POWER of The One who loved us so much, He died for us and left us the Spirit inside us to endure.

And that makes this woman sigh with relief.

"I have carried you since you were born.
I have taken care of you from your birth.
Even when you are old, I will be the same.
Even when your hair has turned gray,
I will take care of you.
I made you and will take care of you.
I will carry you and save you."
-God
Isaiah 46:3-4

So good to know.

Angelman Syndrome

Please take a moment to go to the White House website

and sign the petition to increase funding for Angelman Syndrome.

Angelman Syndrome is a rare neurogenetic syndrome.

Most people have not heard of AS. In fact, many doctors haven't.

The symptoms of AS are extremely severe. Mental retardation, nearly complete lack of speech, and severe difficulty with motor control occur in all individuals. Seizures occur in almost all individuals.

Individuals with AS and their family members are enduring incredible hardship. However, there is hope.

A cure for AS is on the horizon. The cause is now well understood - a rarity amongst genetic syndromes.

All that is required now is the funding to make a cure possible.

In 2010, the National Institutes of Health spent less than $500,000 on Angelman Syndrome research.

We ask, simply, that funding towards Angelman Syndrome research be greatly increased.

It just takes a minute. You do have to sign up in order to sign the petition.

Click Here

Research for a Cure for Angelman Syndrome

Monday, September 23, 2013

A Walk in the Park

You shall walk in all the way that the
Lord your God has commanded you...
Deuteronomy 5:33

Our life obviously has never been "a walk in the park," but some days a walk in the park is all we need to turn a really lousy day around. Especially if said park includes dad and food! Scotty took his camera on our last trip to have lunch with dad, so today's post will be a photo essay by Scotty.

On our way! He always takes this same picture :)

DUCKS!

Duck poop...there were 53 photos of duck poop...

Daddy

Mommy

Poor Bonnie, it was so windy.

A few action shots

Some "Selfies"

A prescription for a relaxed Scotty: A time for an all out sprint and a time to run freely without us reminding him to stop...And by reminding I mean yelling at the top of our lungs as we run after him in hot pursuit as we try to keep him from any and all dangers that are in his path. A little time to wander freely without us saying don't touch,you can't hug strangers, or don't touch that food it's not yours...and some bonus time with daddy is all he needs to release whatever demons he was battling on that particular day.

A prescription for a relaxed mommy: A break from the routine and the monotony of our days, even though the routine, the monotony and the predictability are the things that keep our Scotty happy and content. A little exercise, a little sunshine, and a time away from the constant noise and activity are all I need to get my head back in the game.

Just a closer walk with Thee
Grant it, Jesus, is my plea
Daily walking close to Thee
Let it be, dear Lord, let it be
Patsy Cline

Last week was the anniversary of my father's passing and
I can hardly believe he has been gone for six years.
Patsy was his all time favorite singer and every single time
I am outside walking my feet seem to
automatically move to the rhythm of this song
as the lyrics fill my heart.

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