cerebral palsy
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I remember…

Have you ever felt that God has been watching you?

I know you all are thinking doesn’t God watch everyone? And I believe the answer to that is “yes.” However I truly feel like God has been watching me since I was a child…

I remember when I was in sixth grade it was the “big year” of middle school, lockers, gym uniforms (uh remember those?) and new friends…

I remember turning the hall for the first time and seeing “them”…

For the first time in my life, I saw an entire class of special needs children. A whole class! I was so intrigued by them. Who were they? Where did they come from? Where have they been for the last 6 years? How come I never saw them in my school before?

I pondered these questions each time I saw them…

Who are their families? How come I didn’t ever know them?

I remember seeing them walk in the halls together; eating lunch together and I just sat and wondered…

I remember seeing many of my peers ignore them…

Laugh at them…

Point at them…

Make fun of them….

And it just upset me….

And I used to wonder, why? Why did this bother me so much? They weren’t related to me… I wasn’t one of them…

But for years and years I wondered about them and their challenges… Why were they born like that? What is going to happen to them?

I wasn’t really a curious child about to much but for some reason this just seemed to strike a chord with me…

Back then we didn’t have programs where the disabled population was included with the regular children, and I remember wishing that there was… I wanted to know these children; I wanted to be their friend…

I was always nice and said “hello” as I passed them in the hall as my peers looked the other way pretending they were invisible.

It just bothered me…

After middle school I never saw “that class” again, that group of special needs children again and I wondered; where did they go? What were they doing?

And then “life” as it has its way of doing kept moving on and I stopped thinking about the special needs population and I graduated from high school and college…

Step in about 17 years…. November 1992….

Shelley, your daughter has Cerebral Palsy.”

I will never forget that day… I will never forget those words… And then I remembered all those children and how I wondered each day…

And then I knew why God was watching me… God choose me… to care for this beautiful little girl whose life would be much like those children I wondered about each day…

Sage, from the garden to the bath

I love gardening…. It is a great time to clear my head and just get down and dirty… literally… there is nothing as satisfying as growing a plant from a tiny seedling and watching it bloom and being able to use it in so many ways.

This year I decided that I was going to create a “Sage Garden” for Hadley. Through Hadley’s Conductive Education we learned that sage is a wonderful muscle relaxant if used to soak in a tub. I have to say I was a big skeptic for years and years about “herbal therapy” and what “good” it can do but this to me was next to amazing!

hadley's sage garden

Hadley has cerebral palsy which causes her arms and legs to tighten up to the point where she balls her feet up and one of her hands. It amazes me that she can actually stand on her feet and bear weight and walk while doing this. Try it… Tighten your feet so tight you feel all the muscles cramp… it hurts huh? Uncomfortable… yes! And somehow due to the spasticity she can keep her feet like this for hours, me a few minutes and I’m going nuts… but how do you “undue” this?

A few years ago Dora who is Hadley’s current Conductor (therapist) asked if we could give Hadley a Sage bath, she explained that the Sage acts a muscle relaxant. So with my eyebrow raised I went and boiled a large pot of water and put a bunch of fresh Sage in it…. The smell was divine!! Almost tea like however, the bundle I used was large enough to send the fragrance through the whole first floor of our home. After boiling it for about 20 minutes, we let it cool a bit and then brought the pot into Hadley’s bath and added it to her bath water. We gently put Hadley in her bath chair and down she went into the warm, tea smelling water… and we soaked her and let her sit for 30 minutes. When the half hour was up, we got her out and dried off and it was amazing the difference in all of her muscles… Her legs and hand were actually “relaxed” and this then made her working with Dora much easier. I strongly recommend you giving it a try if you have painful leg muscles or if your child has cerebral palsy.

So this year we decided to create a large Sage garden so we never run out for the summer when Dora comes back! I can smell it now…

Miss Congeniality or as we call her Hadley!

hadley does broadway

Hadley “does” Broadway, seen here with casts from Sister Act, The Adams Family, and Godspell

Miss Congeniality is a title when heard most people think of Sandra Bullock from the movie, or I often think of my oldest daughter Sarah who has won that title a number of times, but today and most day’s I think I’d have to give the crown to my younger daughter Hadley.

I have never met ANYONE like Hadley! Once people get past her first name and the “unusualness” of it; well 20 years ago it as quite unusual, Hailey, Yes, lots of those but Hadley nope just one special little lady! As I was saying… once you get past her fist name upon her introduction “My name is Hadley!” One cannot fall in love with her contagious smile and zest for life! Hadley who is developmentally delayed which was caused by her cerebral palsy has a true love for ALL people, no matter what their status is on this earth, Hadley will love you and make you smile. A true joie de la vie!

I have seen her wave her invisible wand work and touch people who  have been forgotten about; like the homeless, smile… I have seen her touch the lives of children to celebrities and it never ceases to amaze me how her gift of “a smile” can make anyone’s day a little brighter. God bless our little vessel! Our ambassador of Good Will and Cheer!

The first time

 

hadley first wheelchair 1997There are certain moments in a mother’s life that you will always remember, their first word, their first step, the first time they actually made it to the potty, their first date, their first kiss, their first “A”, the first team they “made” their first best friend, their first college acceptance letter… and in my case

The first wheel chair…

Hadley had been 5 years old and I had been carting her around in a stroller since birth, she was small, and it was easy to flip it open and put her in it, it was safe, she was happy… and I didn’t have to “think” about the inevitable…

And then the day came…

I knew it was coming… I couldn’t keep her in a stroller forever…

Although she was a small little girl I knew it was “time”…

No matter how easy a stroller was for me to throw in the back of my Volvo…

It was time…

And so we had her measured…

Even had her name monogrammed on it in purple… with purple sides… for our little girl…

Our little girl whose legs would never support her for long…

Our little girl whose legs get tired step after step…

Our little girl who just couldn’t stand on her own…

It was time…

When we put her in the wheelchair for the first time…

She was happy…

She tried to move it with her right hand and went in circles…

She smiled…

Me… not so much…

But I knew…

It was time…

Ignorance is bliss…

bird looking away from others
photo credit: The Dream Sky

“abortions are good is surprisingly absent from her list.”

Was the statement that stunned me as I sat and stared at my Reddit.com comments.

OK, I understand the whole freedom of speech thing but come on this was a post where I as a special needs mother poured my heart out with 10 things that this has taught me

If you read my blog you know that my daughter suffered a bilateral grade two hemorrhage on her 10th day of “life”. I didn’t know that the medical community could perform an “abortion” after a baby had already been born…

An abortion… because I wrote I was a special needs mom…

Come on now… talk about lack of sensitivity and understanding…

Funny enough, when I look back I see that the number 1 thing, right at the pinnacle, of 10 things being a special needs mother has taught me is; “ignorance is bliss” Serendipity? I think not…

5 reasons why I am so glad Zach got his show from Oprah

oprah magazines
photo credit: Joyce Buckley

Anyone who has not been living under a rock over the past few months knows that Oprah debuted the next chapter in her life;“OWN” the Oprah Winfrey Network. Wow, she has climbed up from new woman to talk show icon to Network extraordinaire. Oh, how I’d be happy with just my own TV show, I don’t’ need the whole network… um, hello Bravo, Discovery Channel… but we are not talking about me right now we are talking about Oprah and her latest brain child; “Search for the next TV star;” which was designed to be a reality show that was also a competition to find the next big TV host.

Last summer a young man named Zach Anner submitted his video to Oprah for a show he calls “Rollin’ around the World with Zach Anner” this is with a pun intended as Zach rolls around daily in a wheelchair due to his cerebral palsy. In his audition tape, Anner described himself as a man with “the sexiest of the palsies” and said he wanted to “make a travel show for people who never thought they could travel.” Anner video quickly went viral and attracting over 9 million votes from the public and even got the attention of celebrities like John Mayer.

I admit I watched the season finale with great anticipation and hopes for this young man (being a special needs mom myself) and here is why:

1. He has a great sense of humor.
2. He does not let his disability stop him.
3. He has courage; anyone who can “stand up” to Oprah has my vote!
4. He has the best positive attitude.
5. He puts the “dis” is disability! You rock Zach!

Have you ever dreamed of having your own TV show? What would it be on?

“S” is for Special and Shoes

Last week I was getting Ainsley ready to go back to school for her 10th year; this was complete with a haircut, a trip to the mall and rounded out with a trip to visit our favorite shoe guy “Mr. Ed” at Shoe Train. Somehow I realized that last year in the midst of all of my craziness we didn’t get to see Mr. Ed so Ainsley had been wearing the same sneakers for two years. Good thing she hasn’t grown any.

I have had the pleasure of knowing Mr. Ed since Rebeka was a child, which is about 20years now, since I believe we bought her first pair of “real” shoes when she was one. Mr. Ed is known by all in the community as a special man with an exceptional and loving staff.

Before we left home I called to confirm that Ed was in and was warned that there was a list of people who had been there in line since before the store opened waiting patiently for his assistance. We arrived at Shoe Train at 11:00 am with smiles on our faces knowing when we were finished Ainsley would have some new shoes for the school year. We were prepared to wait our turn knowing it might take an hour or two. Ed Jurgrau see’s up to 100 children and their parents a day during this back-to-school season, as his clients come from as far as up to 100 miles!

Ed opened Shoe Train in 1979 and has been servicing the community since. Shoe Train is not only known for their wonderful and knowledgeable staff for the regular customer, they also specialize in servicing the special needs community. What people love about everyone at Shoe Train is they take the time to fit your children properly, and they have a large selection of styles in widths and sizes to please all children even the pickiest of teenagers. Over the years he has taken Ainsley’s shoes and molded them to fit her orthotics and now he specializes in making Cascade orthotics, which is a wonderful extension of his business.

As we waited we saw several families big and small and I was a little surprised and horrified to see a woman behind me who brought in a bag of shoes she had obviously purchased at Nordstrom’s and asked Ed to make sure the shoes “fit” each child. Ed just complied with a huge smile. That is just the kind of guy Ed is! He genuinely cares about the children and the community.

Over the years our family has grown close with Ed and I’m proud I can call him my friend. He has always been a huge advocate for our family’s causes as well as the communities. Ed has donated 1000’s of pairs of shoes to various organizations. In 2004 when Rebeka was competing in a pageant in Las Vegas Ed has told me he was going to be there at the same time for a shoe convention and low and behold he showed up to support Rebeka with a hometown smile!

Bill who has been working with Ed for years, also works with the Frederick Key’s Baseball team, and over the years he also spent a great deal of time helping our family with special projects. We were so glad to see Bill at the Frederick Key’s game when Exceptional Parent Magazine honored our family with the Maxwell J Schliffer Community Service Award.

So we waited three hours, until 2:15 pm, for Ed to fit Ainsley with her shoes but as usual it was well worth the wait for this special man!

Back to School with a wink and a smile

As summer comes to a rapid close, it is “back to school time.” It is a “happy time” for most mom’s who spend these last few weeks getting their little one’s get ready to “go” for the first time; running to the shoe stores to get that special pair of fancy shoes and “needed” new white sneakers. This is usually followed by visiting the office supply stores to load up on crayons, folders, pencils, and scissors. And let’s not forget stopping to get a new lunch box and character backpack.

Somewhere in the beginning of the year each year children write essays about their summers and about their families. I can remember reading some funny essay’s Rebeka wrote and I can remember even writing these essay’s as a child. Along the line somewhere there was one or two that Rebeka wrote about me or Geoffrey being her hero, and I always thought that was so sweet.

The middle school and high school crowd usually heads to the mall without mom to pick up a few new fancy duds and then somehow remembers that they “might” need school supplies so they then go with mom and stock up on notebooks and pencils.

In middle school so much changes with children, their schools and their friends and their opinions on everything, because being pre-teens they know “everything about everything in the world.” And I remember reading Rebeka’s English papers and she was beginning to understand the degree of Ainsley’s disabilities and she would often write about that.

And then there’s me with one child who left two weeks ago for her senior year of college (ok so she’s not a “child” in age but she will always be my “child” in thought), and my other special child who is getting ready to go back to her 10th year of school, not necessarily 10th grade since she is in special education which continues until she is 21-years old. Following with what most moms are “doing” we loaded up the minivan and headed to the mall. We had a “mommy and Ainsley” afternoon of shopping, we went to the GAP, American Eagle, Old Navy, and of course PINK. (Shopping with a high school girl is NOT complete without a visit to PINK.) She still needs her new school shoes which we will have to get this week and that last minute haircut so she can “see” without her hair in her face.

And as we were driving home from the mall I looked up in the rear view mirror and looked at Ainsley strapped into the van in her wheelchair and it was then that that I was hit with a bittersweet smile and I started thinking about what she would be buying if she was not disabled; she would be buying an outfit for her senior picture and getting ready to return to her exciting senior year preparing to head out of the nest and off to college. I wonder what she would be writing about in her high school English essays…

But again, I stop and think that is not our life, but I stop and realize how wonderful and inspirational she really is and how much I love her just the way she is, and how blessed I am to have her in my life and I then realize once again that I’m not her hero she is ours!

There’s a hero,
If you look inside your heart,
You don’t have to be afraid of what you are,
There’s an answer,
If you reach into your soul,
And the sorrow that you know will melt away.

And then a hero comes along,
With the strength to carry on,
And you cast your fears aside and you know you can survive,
So when you feel like hope is gone,
Look inside you and be strong,
And you’ll finally see the truth that a hero lies in you.

It’s a long road,
When you face the world alone,
No one reaches out a hand for you to hold,
You can find love,
If you search within yourself,
And the emptiness you felt will disappear.

Lord knows,
Dreams are hard to follow,
But don’t let anyone tear them away,
Hold on,
There will be tomorrow,
In time you’ll find the way.

That a hero lies in…..you
Ooohh that a hero lies in…..you

It was a moment… but a life altering moment

Your child has “cerebral palsy” with a kick to the gut and a brush of cold reality this is how the therapist told me. No nice, please sit down, pull up a chair, put your baby down and let’s talk… it was a fast cold harsh diagnosis.

It was November and I can remember thinking on the way over to the appointment what I needed to do for our holiday celebration, shopping, cooking, flowers, you have to have flowers, ironing the table cloth. Nowhere in there was there thinking about a life altering diagnosis which would forever change my daughter’s life but also all of ours who care for her.

I remember I just sat there and held my daughter and stared at this woman who so crassly changed my world with the stroke of five words. Cerebral Palsy; What would this mean for her, for us? And as she abruptly got up as fast as the words fell out of her mouth I just sat and wondered…
How am I going to do this?
What about school?
What about friends?
What about ballet with her sister?
What about her prom?
What about college?
What about her wedding and grandchildren?

I sat there and watched one life vanish before my eyes and another unknown one begin. It was as if I had lost one baby and given birth to another in the same moment…
Then the…
Why me?
Why us?
We have always been good people, how could this happen to our family?
Why did god do this to us?

I picked up my daughter and brought her out to the car in her car seat and I remember I just sat there and cried… and cried… as I kept looking at her in my rear view mirror.

When I got home, which was thru the grace of god because I’m not quite sure how I drove and cried with so much on my mind. I picked up my daughter from her car seat and brought her in the house. And as I did this she looked at me with her big beautiful eyes and smile and I knew this wasn’t going to be easy but look at her, she was beautiful and I was blessed with her just the way she was, and I was going to be dammed if I was going to let some stupid diagnosis change the way I was going to raise my daughter. Screw that! I was going to give her the best life I possible could! I was determined to make each day of her life a little easier anyway I could.

My daughter is now 17 years old and not a day has gone by that I don’t wish a magic wand could give my daughter her “legs” or a “voice” but I love her just the way she is, she is my child, my beautiful beautiful child!

Thousand Word Thursday: “Welcome to Holland”


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

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