A Day In The Life Of Hadley
Subscribe via: Email RSS

Spread the Word to End the Word

Last week I was asked to come into my daughter’s high school to speak at an assembly “To spread the Word to End the Word.” I was honored that the President of the schools Best Buddies chapter had asked me to come and address the students on this topic.

I spent a day or so organizing my thoughts as I often do when I give a speech but this time it was going to be a little different because I knew my daughter was going to be in the assembly itself while I was speaking along with some of her classmates, and the regular student body.

I have very strong thoughts on this topic, the “R” word and the negative connotation which it holds to me as a parent of a special needs child.

When I was young I heard that word get thrown around alot. It used to offend me a little bit then, not sure why, maybe the stars above were aligning themselves and wanted to hear and see how I reacted.

Retarded” it just sounds so belittling! “What are you retarded?” Seriously, I have heard children and adults say this to each other still today and I see it as a “slap” in the face, a put down and it is what I call a garbage term.

The actual definition of retarded is “To cause to move or proceed slowly; delay or impede.”

I used these examples in my speech of times I have overheard teens use the term:

Let’s say you show up at the mall in a polka dot shirt and stripe pants and your girlfriends are all giggly and look at you and ask, “What are you wearing? That looks retarded!” Personally you might like the outfit, it might be in bad taste but it is not “retarded”

Or, let’s say you are a high school football player and you just got your schedule for next year and instead of getting your choice of “weight lifting” for your first period somehow you were placed in Chorus. You exclaim, “What, this schedule is retarded!” Well unless you are on the current hit show Glee where it might not be an error but none the less the schedule is not “retarded.”

By using that term it reinforces the discrimination and intolerance children like my daughter face every day.

When we were all little we heard the phrase “sticks and stones may break your bones but names will never heart you,” well that is just not true, names do hurt and it is time to “remove and retire” the “r” word from everyone’s vocabulary.

Our vacation that went from Magic to Tragic…

Well we “attempted” to have a nice family vacation for what I believe might be the last time since Rebecca will be graduating from college in May. But noooo I think sometimes that is toooo much to ask for in “my life.”

We have gone to Disney to celebrate the holidays for the last ummm five years, we have had some really good laughs and times during these weeks, we’ve also had a few bad experiences with Disney during these weeks but somehow as the “last family fling” Rebecca and I thought it fitting that we return to the most “magical place on earth.”

Things were fine the first day or two the usual craziness of what to go on, what to run and get fast passes for, what Ainsley would enjoy, and a well needed haircut for Geoffrey, but when the third day hit that was “it.” That was the day our Disney vacation went from Magic to Tragic!

There were some problems back at work and Geoffrey spent the rest of the vacation on park benches talking on the phone. This hurt me a lot! I felt sooo bad for Geoffrey but at the same time I felt bad for our little family! All I kept thinking as I looked at my two girls was this is probably going to be the last time we all have a chance to go away together… And then the “next chapter” began to tear me up. Graduation for Rebecca and moving on with her “life.” I guess I have been putting off thinking about this for soooo long that it kind of smacked me in the face as I looked at her. I can remember when I was 21 and graduating from college, I knew that Geoffrey and I were going to get married so I was staying right where I was, looked for a job and defiantly was not moving back home. I was starting “my life” as an adult. And although times have changed sooo much and with the state of the economy I know it is much different I know that Rebecca most likely will be coming “home” for a year or so, but after that she will be “gone.” Gone from our house, no more, loud music, no more cell phone ringing all hours day and night, no more worrying about late nights, or no more time with the two of us sitting and chatting about life on the couch. Those days are quickly coming to an end. She will be going into the world as an adult and leaving my memories of my little daughter behind.

So as I sat on the many many benches at Disney this is what kept going thru my mind. She’s a good girl, (young lady) she knows right from wrong and now it’s her turn, and I just pray that she will be safe and have a good life. Well, we have 4 more months until graduation I guess I better keep a large stock of Kleenex between now and then!

“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

And when you get the choice to sit it out or dance, I hope you dance

I smile as I sit back and look at photos of my daughter’s childhoods. Although they are so very different, one a special girl, and one with special needs they are still in many ways so much alike. Both love to dress up, paint their nails, listen to music, and both love to dance.

When Rebeka was younger it was a no brainer that she would take ballet, that was a given, just like she would be a brownie, attend Sunday school, and play with her friends. She would take ballet as all little girls did, I did, my mother-in-law did naturally my daughter would. We bought the black leotard, pink ballet slippers, pink tights and plenty of scrunches to pull the hair tight and back. She danced off and on for years finally ending up studying jazz with a private instructor, she never was a very “disciplined ballerina” and jazz fit her much better. I used to drag Ainsley when she was but a wee babe to all of Rebeka’s classes and as she grew older I wished that she too could dance but understood that would be impossible with her disabilities.

The hardest part of the year for me was Rebeka’s end-of-year recital. I was so proud as I watched her dance with joy and then saddened and wished that my little Ainsley could be up on that stage too. Through the years we attended many recitals and had the bittersweet feeling of joy for one child and sorry that another would not know that simple joy.

But then Becky, Ainsley’s Physical Therapist told us about a program at Maryland Youth Ballet that she was working on. Becky along with MYB’s Jennifer Cox, a 30-year dance professional, who was inspired by her own granddaughter’s desire to dance despite a disability, developed a program to allow children to enjoy the beauty of music and motion, and gain the benefits of the physical therapy.

Becky described the program and told us that at Maryland Youth Ballet’s new Silver Spring dance facility a state-of-the-art overhead track system was created which allows each dancer to participate without the aid of a volunteer. She then described that dancers are suspended with the aid of a vest sling and attached to a traverse rail system hung in the ceiling giving the dancers complete range of motion. My goodness how I just knew Ainsley would love this!

After listening to Becky talk about the program I immediately jumped at the chance to enroll Ainsley in the summer classes. Every week when Ainsley would go to her ballet class I pulled out the same outfit that Rebeka used to wear so many years ago, the black leotard, black tights and pink ballet slippers. Ainsley loved going to class, and she loved “dancing” in the track system. And for one brief moment I remember the recitals and closed my eyes and “saw” my little Ainsley and she was dancing!

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!

Ten things being the mother of a special needs child has taught me.

I am constantly inundated with a facebook survey sent from friends about “the top 25 things you may not know about me.” I started to write this at least a dozen times and when I get to the fifth thing I just say “forget it, I’m sure that my things sound so much like everyone else’s.” And frankly who cares what my favorite ice cream is (not that I eat it) or what my favorite movie is or what time I came home on the night of my prom. (Well that would be easy because I did not go-but that’s another story).

The more I pondered on this survey the more I thought about my life and how different it has been from so many of my friends, because I have been raising a special needs child for seventeen years. And then I decided it would be better to write “Ten things being the mother of a special needs child has taught me.”

This has been the greatest lesson in my life, definitely frustrating at times constantly questioning the almighty for delivering Ainsley to us but in the end when all is said and done and I put my head on my pillow at night I thank god for giving her to us because through her disability she has taught us all so much about life.

So here goes: Ten things being the mother of a special needs child has taught me.

Being the mother of a special needs child has taught me that “ignorance is bliss”, saying something to an adult staring at a child in a wheelchair is sometimes really hard to resist…

Being the mother of a special needs child has taught me to be patient with everything, which is just taken for granted a healthy child will bring…>

Being the mother of a special needs child has taught me that I do have courage to go on and it’s ok to cry, sometimes you just need to take a breath and give a little sigh…

Being the mother of a special needs child has taught me to be understanding of those less fortunate then you, as someday this could be your life too…

Being the mother of a special needs child has taught me to manage my time, since I have spent so many hours juggling doctors and therapists and work you would have thought I would have lost my mind…

Being the mother of a special needs child has taught me that I know what is best for my child, even if I have to fight city hall which at times can get wild…

Being the mother of a special needs child has taught me that there is a time and place for everything, and sometimes a giggle might just be the right thing…

Being the mother of a special needs child has taught me about hope, even with the smallest glimmer of things like toileting when I thought I was coming to the end of my rope…

Being the mother of a special needs child has taught me that I am stronger than I thought I could be. I have become a hematologist, neurologist, nurse, pharmacist, physical therapist, occupational therapist, speech therapist, personal assistant, manager, special educator, professional fundraiser, inspirational speaker, and an advocate all bundled up into the mom you can plainly see….

Being the mother of a special needs child has taught me unconditional love which I know came from my inner belief from the almighty above. I used to question why this did happen to me, and now although at times it is still hard to understand I cannot image what life without my daughter would be…