Sandbox Moments...

Same title different sandbox....
 
Once again we find ourselves having a Sandbox Moment. Actually a whole weeks worth of Sandbox Moments... only this time the sandbox is much larger. I don't know what it is about the ocean and the sand but it is all so soothing.  We have finally found the perfect vacation spot...away from the stress and the busyness of our days.  The crashing of the waves on the shore block out all the chaos and all the noise and restores us. The sun warms us and melts away our stress. 

Vacations are a funny thing...they are supposed to be a time of respite from everyday life...when in fact they can be just the opposite.  They can be exhausting and stressful and you find yourself needing  a vacation from your vacation.  We have all had them and we especially have had some doozies. 

For example, in 2007 we thought it would be "fun" to take all our big kids to Disneyland. Our previous trips to this magical place had been exhausting but so much fun! Boy were we ever wrong!  

At the airport...looking promising!

First Ride...still good!

Though Scotty seemed excited ... the actuality of it turned into a nightmare.  I can't recall specific details of the awfulness. My mind will only let me remember it as one giant meltdown of catastrophic proportions. He had spun himself into such a frenzy that there was 
no chance of him regaining any small bit of self control. 

End of Day 1...He looks like he is in pain!

 Why? We have no idea what set him off but poor Steve ended up renting a car and driving him home after 2 days.  A plane ride home was out of the question...too many people...too much waiting...too confining and heaven forbid he got stopped at security. That would have been a disaster of such a magnitude it would most surely have made the national news.

So I stayed behind and tried to salvage a bit
 of fun and dim the horror for our girls and 
our friend Tyler who came along with us.

 
It has never been easy finding a spot for an actual vacation and as Scotty has gotten older it has become more and more challenging. 

Vacations for us have been anything BUT relaxing...until now. We found this little gem on Dauphin Island in Alabama.  The house sits right on the Gulf with a private beach and lots of room for Scotty to roam around.  The houses are spread apart so he can scream and stomp his foot to his hearts content and he won't disturb a soul.  


His only means of escape is a rocky, gravelly driveway... barefoot it was impossible to walk on...so barefoot he stayed.

We have finally found a place to play...a place to laugh...a place to rest.

So perfect for him and so perfect for us.
He is calm.

He is content.

Content to sit in the sand...

Content to swim in the ocean... 

Content to listen to his music... 

Content to lay on his bed and watch a movie. 

 His demands are few...His tantrums non existent.

Therefore we are calm...
We are content and our tantrums are non existent. 

 In the midst of the chaos that goes on inside of this boy...the heat of the sun, the warmth of the sand and the rhythmic pounding of the waves quieted him for just a little while. Our boy who is in constant motion and in need of constant attention is still and calm.

A Sandbox Moment...

This week in his quiet and solitude we found ours.  A moment when the world slowed down enough and the noise stopped for just a little while and allowed us all to pause and just breathe.

And we are so thankful for the peace, the calm, the quiet and the rest.  And we are left with the really good kind of memories...the vacation kind of memories.

 

The LORD is my shepherd, I shall not want.
He makes me lie down in green pastures;
 He leads me beside quiet waters.
 He restores my soul...

Psalm 23

The only thing missing was our daughter Stevi...

♥You were with us in these silly photos and in our hearts♥

On My Knees

 Come, let us bow down in worship, let us kneel before the LORD our Maker

Psalm 95:6

As Scotty's mother I  have experienced many moments that have taken my breath away as I have witnessed God's presence in this boy and in our life.  But I have also had many moments that have brought me to my knees. Those moments...the ones that bring me to my knees can happen suddenly...with no warning...or they can appear year after year ...right on schedule...without fail. 

Over the years I have grown to dislike this time of year…May has become my least favorite month of the year.  It didn’t used to be this way.

Sure May brings flowers, butterflies and perfect temperatures but it also brings allergies, mosquitoes and graduation.

I don't know what it is about graduation...more specifically the announcements that fill our mailbox...but they make me want to go all Old Testament and drop to my knees and “rend my garments” as an expression of my physical grief and sorrow.  Every year as the first one appears I begin a mourning process of sorts…every year...all over again. And every year it surprises me with it's intensity.

Of course I mourn for this particular missed milestone for Scotty... But I am really mourning for ALL the missed milestones and I mourn for the life he will never have.

There are so many milestones that have passed him by and selfishly I think I mourn more for myself than for him.

He will never skin his knee riding a 

two-wheeler for the first time.

He will never learn to read.

He will never write his name.

He will never have a sleepover.

He will never enter a spelling bee.

He will never hit a home run.

He will never go on a first date.

He will never get his driver's license.

He will never make the honor roll.

He will never walk across the stage 
and receive his diploma.
He will never have a first car or a first job 
or a first apartment to celebrate...
To name a few.

But the one that numbs me with sadness is that

He will never stand at the front of 
the church and watch his bride
as she walks down the aisle towards
 him and their new life together.
 He will never hold his son in his arms…

…and neither will I.

And all of it...every single bit of it...
Brings me to my knees.

Last week I was looking through Scotty’s memory box.  It is filled with Special Olympic ribbons and medals, school papers, report cards, birthday cards and an assortment of items that at the time I thought were worth saving...little treasures worth keeping.

Mixed up in all the treasures I found this...

From Right of Way Driving School

And this.....

Navy Opportunity Information Center

I don’t know what made me throw these in a box that held these precious treasures.  Why didn’t I just toss them in the trash? It certainly isn't healthy to hold onto things that cause us pain. But it's okay...I will gladly take all the pain and all the sadness so he never has too.

You see he has no idea about all the things he has missed…and I thank God for that.

And sitting at the bottom of his memory box I found this....

It was taken 23 years ago at his "graduation" from an early childhood program and I had forgotten all about it. It was glued to a construction paper diploma and the sight of my little guy with his cap and gown brought me to my knees.  Coincidence? Never. It was there just waiting to be found just when I needed it...in the  month of May♥ 

So once a year I allow myself a bit of a temper tantrum.  I cry and scream into pillows. I allow myself to feel angry, cheated, jealous and just plain pissed off…all very self indulgent...but somehow necessary...somehow healing. And then I put on my big girl panties and dry my tears...And  get back to the business at hand and focus on all the blessings we have been given.

So keep those graduation announcements coming because God and me...we've got this!

And though the sadness is always there lurking in the far recesses of my mind just waiting for an opportunity to bring me to my knees... that's okay.

Isn't that where I should be anyway?

“On my knees I can see,
Where my heart needs to be.
When this life gets to me,
I’ll be found on my knees…”

These are the only lyrics to the song On My Knees by Seryn.  They are repeated over and over for the entire song...simple yet powerful!  Here is the link to YouTube and you can hear the whole song.

On My Knees by Seryn

P.S. To my sweet, beautiful daughters Stevi and Sarah Rose,

Hacking my blog last week for Mother's day is hands

down the best gift you have ever given me.

I love you both so very much.

♥♥Love, Moo♥♥

Meet Our Mom

We’re taking over!!!! If you came for inspirational stories about Scotty.... today is not the day. In honor of Mother’s Day, Joanne’s other children, Stevi and Sarah (Hi!) have decided to take over her blog for one day to tell you about the amazing woman behind the blog who is not just a brilliant writer, but an amazing mom.

Who is Joanne?
Our mom. Duh.

Lessons we have learned from Jo Jo:
Be kind. Keep your panties on. Keep your door locked. Work hard. Make sure to double bolt your doors. Be humble. Carry pepper spray. You can get a tattoo…when you’re fifty.  “You know, never mind the double bolt on the door just get a metal bar to make the door impenetrable...don’t worry....I already bought you one for CHRISTMAS”.  Be ambitious. You can change your name inexplicably when you are fifty. What goes on the internet....stays on the internet. Forever.  “Forget the metal bar,  why not just NOT go outside in Chicago. Ever”. The smallest bit of cleavage is trashy, wear a parka.    Never sniff hand sanitizer...you will die....kids did...its on the news. You don’t stop acting like a child when you become an adult.  We are 20 and 23 and we still aren’t adults in the eyes of Jo Jo.
Never leave your drink alone at a party....even with your friends. They. Will. Rufi. You. Never get into a car with someone you don’t know, even if you’re friends with everyone else, don’t even think about doing it. “Surround yourself with a good set of girl friends and SEW BABY SEW”(shout out to the Sew Sistas)! Raw eggs, even those found in our grandmother’s recipes, are never okay. Hiding your shoes at the bottom of the stairs is not the same thing as taking them all the way to your room (and will therefore sometimes end up in the front yard). A monkey will never be allowed as a Baston pet, because they will throw their poop at you. Always remember that a text message when you get some place is welcome. Last but not least;  be best friends with your sister you’re lucky to have her and never forget where your home is. Lessons learned mom :) 

What Jo Jo has put up with:
We make fun of our mom a lot. A lot. We do it out of love naturally…and she is a pretty humorous lady from time to time. However,  we will take this time to admit that she had to put up with a lot raising the three of us.

From Stevi,

I was not an easy child to raise. I was grumpy, moody and ANGRY from the years 2000-2006. Thanks mom, for putting up with my sassy, sassy mouth that at times very blatantly performed witch craft against the family (not my proudest moment). Thanks mom, for allowing me to wear the glitter acid washed jeans that were three sizes too tight for a solid two years. I learned a valuable lesson about taste. Thanks mom, for supporting my many sports phases. I was not talented. I knew it. You knew it. But you still sat and watched EVERY single game and cheered for me EVERY time I purposely got hit by the softball and walked to first base.
Thanks mom for cleaning up roughly 4,000 cups from the couch, floor, my room, the bathroom, under the sink, Scotty’s room, top of the stairs and the back yard. Much appreciated. Thanks for wrapping my wrist, ankle, knee, neck and finger in various ace bandages that were not needed over the years. Thank you for supporting my hypochondria. Thanks mom for embodying Captain Hook, Peter Pan and other various roles that were required of you for 24 hours a day when I was 4 and a budding actress. Thanks mom for supporting my acting career and never making me feel like I should be pursuing a real job because you know I’m happiest when I’m acting. Most of all....thank you so much for putting up with me and not sending me to a psychiatric ward. I will try to show the same restraint with my future children.

From Sarah.

I would have been the easy child to raise had someone medicated me. I was hyper from the time I could walk, which unfortunately for Jo Jo was very early on and still continues today. I don’t think I ever stopped moving as a child. I was asked at least three times a day to run a lap around our downstairs to burn off energy. But I never remember getting in trouble for it, my mom embraced it. In middle school I wasn’t angry, I just pretended I was for performance sake! During that time I was also living with the reincarnated devil herself (Sorry Stevi, we all know it was true) so I picked up some sassy tips.
Middle school brought on the phases of Full Denim wearing Sarah and Hip Hop Sarah, and a horrible combination of the two. Looking back on pictures of my center part and mangled teeth, I questioned how anyone could let me walk out of the house looking like that, it’s because she is my mom. Thank you mom for letting me wear horrible outfits that went well with my unbrushed hair. Thank you for always making me feel special. Thank you for bringing me underwear the 500 times I peed my pants in elementary school. Thank you for not only being a mom to me but to a lot of my friends as well. Most of all.... thank you for putting notes in my lunch up until high school, because that is the kind of stuff I will never forget.

AND DON’T EVEN GET US STARTED ON SCOTTTTYY......

But seriously....
From Stevi,

I don’t say it enough but I feel like I hit the jack pot with getting to have Jo Jo as my mother. I’m not the most...how should we put this...loving person.  I’m not big on hugs and emotional conversations give me a stomach ache. I feel like someone somewhere was looking out for me when they gave me Joanne as a mom. Because of her, I saw first hand what love is;  her and my dad taught all of us each day what a loving marriage was. How many kids get to grow up watching that? Not many. Against crazy odds my parents are still together and against crazier odds still in love. Watching her unconditional love each day for Scotty and the rest of us fools taught me how to show love. Its because of her and all she taught me that one day (15+ years from now JOANNE) I will be able to be a mom to my kids. If I can manage to be 1/10th of the mother she was to us I’ll be doing something right.

From Sarah,

You really are the best, It’s hard to put in words how great of a mom you are to us three. As your loving child you should know what an impact you have had on me. I know that I wouldn’t be the type of person I am today with out you having as my mom. Whether I knew it at the time or not, you were always looking out for me. It’s because of you that I am never worried about having kids or being a mom myself, because I have you as MY mom, and you’re just the tops. You are a ridiculous person sometimes Jo Jo, overprotective as they can get, but I love you for it. Stevi and I have given you a pretty hard time  growing up, but whether you can see it or not you are the thing that keeps us two together. Mocking and laughing at your motherly antics is what keeps us together,  without you, our stories wouldn’t be half as interesting. 


From Both of us,

We call you a lot of names; little Josie, Josiah, Jo Jo, Moo  Annie (it will never stick, give up on the dream, you are forever a Joanne) and  Pasta Salad Annie. But the only one that means anything to us is Mom. We could write 1,000 blogs about how lucky we are to call you Mom....we’ll leave the blogging to you but know how loved and appreciated you are by us. Happy Mother’s Day Moooo!!!!!!!!!!!

Burnt Toast and Dandelions

Sunday is Mother’s Day and once again we are thrown into yet another retail frenzy that brainwashes us into believing that we need to buy cards, fancy gift baskets, or flowers for mom.   Sure those things are nice, but do flowers really convey the message we should all say to our mothers.

Does a basket of flowers really say, 

"Thanks mom for working as my chauffeur, personal assistant, teacher, coach, doctor, psychologist, housekeeper, activities director, personal chef,fixer of all things broken, finder of all things lost, retriever of all things forgotten on the kitchen table, CEO and Superhero…seven days a week for no pay, no room for advancement…and absolutely positively NO room for error."

Flowers…Really?

So what makes little girls dream of being mothers and grown women long to hold a baby in their arms?  I am pretty sure it isn’t the promise of flowers.

Motherhood is exhausting, it's loud, it’s messy, and more often than not it involves some pretty offensive smells…it is the very definition of chaos…a state of utter confusion and disorder.  Amazon lists over a thousand books about motherhood and I can pretty much guarantee that there is very little on those pages that can adequately prepare a woman for motherhood. In this choice of career the only useful training you will get is on the job.

The moment a child is born, the mother is also born.

She never existed before. 

The woman existed, but the mother, never. 

 A mother is something absolutely new. 

 ~Rajneesh

Being a mother is really about the million little moments of wonderful we are so privileged to be a part of…moments that we tuck away in our hearts…moments we yearn for as we watch our children grow and move away from us.

It is the sweet smell of a newborn baby,

It is the weight of them as you hold them in your arms,

It is the peace you feel as you rock them

to sleep in the silence of the night,

It is a construction paper card with 

little hand prints that look just like flowers,

It is the smell of  burnt toast and the 
sound of hushed voices in the kitchen as a feast 
is prepared just for you,

It is the smushed dandelion pulled from a little pocket

and handed to you with great reverence,

It is the way their little hand feels in yours,
It is the feel of their breath on your cheek
 as they whisper their secrets in your ear, 
It is the smell of freshly bathed little bodies 
ready to be tucked in for the night,
It is reading the same bedtime story hundreds of times,
It is the laughter that echoes through your home,

It is  the simplicity of the days,

It is the short time when you are their whole world,

These are the moments we treasure…

These are the real days to celebrate being a mother.

Erma Bombeck has written extensively about motherhood and in 1980 she wrote a column titled “The Special Mother.”

Basically it depicts God and his angels carefully matching children with a mother just perfect for them.  When He assigns a child with special needs to his perfect mother, the angel is curious and says, “Why this one, God?  She is so happy.” 

“She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step ordinary.

When her child says momma for the first time,

she will be witness to a miracle and know it. “

So True…

…But I genuinely find it very hard to believe that anyone has ever looked at Steve and I and said, "Gee, I sure do envy them." 

Who could possibly envy us watching Scotty struggle in a world that he will never understand?  Who would envy the constant exhaustion and the constant struggle we endure just to make it through one more day?  Who would envy the loneliness and the isolation we sometimes feel?  Who would envy living with the stark reality that Scotty is most likely going to outlive us and worrying what his life will be like without us in it? 

Envious...Doubtful.

I do know these things for certain.  There WILL be flowers for Mother's Day. It's tradition, and I will love them because I love the giver and the note that is attached will remind me just how much I am loved.

And I also know for certain that even though all of my children are adults now, there will still be a certain little man who will be making me burnt toast for breakfast and who will proudly present me with a construction paper card with his hand print flowers...hand prints that are now much, much larger than mine...

...and if I am really, really lucky there will be a smushed up dandelion in his pocket just for me..

Well maybe... just maybe there is a little something to envy after all.

Scotty 1987

Stevi 1988

Sarah Rose 1992

If you have a mom, 

there is nowhere you are likely to go

where a prayer has not already been.  ~Robert Brault

To my sweet babies, thank you for transforming me into a mother.  It is all I ever really wanted to be.  I am so glad that God picked you just for me.  You are the best thing I have ever done.  You are my greatest gifts...my greatest treasures.  Although you are grown, I will never stop missing the time long ago when I was your whole world.

                          




I have been lucky enough to have had two women in my life who have loved me and taught me by example the importance of faith, love, commitment, and most importantly to always cherish the gift of family.

To my mom,  you have shown me how to face life with strength and courage…you have shown me how to survive seemingly unsurvivable situations…to turn lemons into lemonade…and to keep putting one foot in front of the other…no matter what life throws my way.  I love you♥

To my mother-in-law Loretta, you shared with me your faith and helped me to see that God has a purpose to everything and whenever he closes one door he always opens a window.  You have shown me that kindness, gentleness and goodness shown to others lasts far beyond the parameters of this life…and I miss you every day♥

Welcome to Our Village

We, like many others in our society today have lived far away from most of our family for the last 28 years.  Consequently, we have formed our own kind of family…our Texas family.   We have shared our lives and  our families and we have loved and supported one another through our joys and through our sorrows.  

There is an African proverb that says,

”It takes a village to raise a child”

For a parent with a child with special needs this proverb takes on a much greater meaning.  For a family alone without a village, it is a nearly impossible undertaking.  Without the love and support of the "villagers" who will love your child and accept them unconditionally the journey would be unbearable.  Our village extends far, far beyond those in the photo below, but these are our dear and closest friends that we rely on every single day to sustain us and carry us when we are incapable of taking one more step.

And we have been blessed,

Our friends have become family,

They are our village.

We recently found ourselves once again in search of someone to be a caregiver for Scotty.   And once again God was there with an answer to our prayer.  And once again God gave us more than we ever thought to ask for.

Two of our “villagers” Becky and Jim…have raised four sons to be kind, loving, men of faith...men that any mother would be proud to call their sons.

It is about one of these men that I am writing my post today. Son number three, Tommy, has most recently been an answer to our prayer… handpicked by God just for us...just for Scotty.

Tommy, home on a break making some much needed life changes, offered to step in and help. What started out as just a brief detour in the road for him has turned out to be a huge blessing for Scotty.

Tommy I am certain that if Scotty had

 the words he would want to say thank you.

He would thank you for indulging 
his odd fascination with zombies,

and for making him pizza for lunch everyday.

He would thank you for letting him jump in the lake,

and the pool with all his clothes on.

 

He would thank you for the bear hugs,
 and for not getting upset when he drools on your shirt.

He would thank you for falling to the ground
every time he shots you with his finger gun.

He would thank you for dancing with him in the living room,

and for making him laugh.

He would thank you for understanding his frustrations

and smiling with compassion in your eyes, 
even though he is pinching your arm.

He would thank you for your patience and kindness,
 even when he was having a really bad day.

He would thank you for holding his hand.

He would thank you for accepting him and all his quirkiness,

and for just letting him be himself.

He would thank you for giving his mom a much needed break,
and becoming part of his village. 

He would thank you for treating him like a brother.

But mostly, he would thank you for being

the first real friend he has ever had.

Even though I do have the ability to tell you how grateful I am, I find myself having trouble finding the words.  Thank you just doesn't seem sufficient.  I have known you since you were two and I will forever hold in my heart the sweet-faced little boy who loved to come over and play house with Sarah. 

But now in place of the little boy I used to know I see the man you are becoming and my picture of you will forever be changed.  In it's place I will see Scotty's hand in yours ... as brothers and as friends.

I hope these past few months with Scotty have given you some perspective and an even greater motivation to go out into the world and make it a better place. Maybe it was Scotty that needed you, but maybe...just maybe in some small way you needed Scotty too.

So welcome to the village Tommy.

Wherever this next chapter takes you my friend, know that there will always be a certain young man…sitting in his rocking chair by the window…strumming his guitar...waiting for his friend.

And to Becky and Jim, 

Well done my friends…well done.

Train up a child in the way he should go,

Even when he is old 

He will not depart from it.

Proverbs 22:6 

Feeding Horses with Steve 

Big boys screaming like little girls.