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Archives for April 2009

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

Cheaper Than Therapy

The right prescription for your your pets and you.

Happy Monday morning! I know a lot of you have pets big and small and I would like to introduce you to Center Pet Pharmacy. www.centerpetpharmacy.comThe pharmacy is a real “bricks and mortar” pharmacy that has been in business for almost 50 years. (Hard to believe there is still a little guy in this day and age with the big guys coming and taking over each town!) This store is much like the loved TV show “Cheers” where everyone knows your name! It is great to have a place where the people actually care about people and pets; and NOT merely a number but a respected customer!The company is run by Kenny who many of you will know as the inventor of FLAVORx, the behind-the-counter flavored medicine for children available at pharmacies all over the country (how many of you have used flavorings developed by Kenny to help your kids or animals? I know I have countless times!)Kenny and everyone at Center Pet Pharmacy is dedicated to providing high quality medication custom-made in a form your pets will love. They can custom make anything the way you would like it, the way that it is easiest to give to your pet. It comes quick, they have great prices and experienced “real” (not just a picture on the website of a pharmacist, a real live pharmacist!) specially trained staff. Center Pet Pharmacy delivers medications and compounded solutions via USPS.

1. Compounded liquid medications in your choice of 16 different flavored liquid medications. That means they can take your tablets and make them taste great so your dog or cat will lick them up, every drop!

2. Tasty chewable tablets (Yes, they can even turn meds into tasty chews) this is great for dogs.

3. Homeopathic, holistic, and herbal formulations. For those of you who like the homeopathic route they have a whole line that can help you with everything from pet anxiety to allergies and everything in between.

4. Sterile ophthalmic (Eye drops) ok, I think this is pretty self explanatory.

5. Transdermal gels. This would be medicine that you would rub on your cat’s ears and it goes quickly into their bloodstream.

They are a fair pharmacy that gives a great service for a fair price and in this day and age that is hard to beat! I give them a double woof woof meow meow!

Top 20 things you will need for spring cleaning

So what is a “clean house?” For some it is a house that is “neat as a pin” and has a kitchen you could possibly “eat off the floor.” For most of us it is a kitchen with a few fallen crushed cheerios that somehow made their way under the kitchen rug or a dust bunny or two in the corner behind the doors; I believe this shows that people actually “live” here.Last year I followed through with one of my “new year” resolutions; I was going to clean my house when “spring” came. You know “spring cleaning?” I decided this was the year to pick up all of the rugs and clean the wood floors, take off the screens and clean the windows, wash all of the dust ruffles, move the furniture and see what was growing back there and find missing game pieces etc. I think you get the picture.

I was excited to tackle the job. I got in my cleaning attire, of old over sized polo t-shirt and leggings, turned up the stereo and started at one end of the house and went on and on until I was done; OK this took a whole week. But when I was finished not only was I exhausted, and hoping I had lost a few pounds from the bending and stretching, but I had a huge sense of accomplishment for getting this job done.

When I was done and cleaned up from cleaning up I sat down and made a list of the top 20 things that helped me get my house spic and span. Me, being the “queen of organization” thought this might help the next time I was ready to jump to tackle the job. Come to think of it, it is spring…

So come on join me, go on get out your sweats and t-shirt, crank up your tunes and hit the dirt!

1. Rubber gloves: You should always use gloves to protect your hands from harsh chemicals that can cause reactions to or just irritate. You should always try and get hypo-allergenic and lined, not latex which bothers a lot of people. And the gloves should fit you tight enough that you can grip your tools easily.

2. Microfiber Cloth: These are nylon fabric cloths which are easily washable after use. I try and get a few different colors so that I do not use the same colors in the bathrooms as I do for cleaning furniture in the living areas and kitchen.

3. Spray bottle: Sometimes I find it easier to make my own cleaning solution for windows or for cleaning mildew-ridden bathroom tiles and grout. You can find spray bottles anywhere or I have even reused glass cleaner containers which I have washed out when done using.

4. Scrub brush: I use a few different sizes of these but make sure you have a good handle and heavy duty nylon bristles on each so you have good scrubbing control that will not scratch your surfaces.

5. Toothbrush: When I am about ready to toss my soft bristle toothbrush I soak it with bleach and use it for cleaning. This is very helpful in small hard to get areas such as grout cracks, and around the base of the hot and cold water handles and faucets, and to clean the holes of your shower head when they have built up hard water residue.

6. Squeegee: These come in very handy in glass showers and also I have used them on mirrors so I do not have any streaks.

7. Antibacterial Wipes: These are a MUST for cleaning phones, computer keyboards, door knobs, light plates, anywhere your mouth or hands touch.

8. White Vinegar: I use this to clean windows, the acid in this cuts through mineral deposits.

9. Mild Liquid soap: I use Palmolive; it is a mild soap which I use to clean just about all surfaces.

10. Mild Abrasive: This is for cleaning the shower and tub areas; you know where you use your elbow grease. Make sure you use a chlorine-free cleanser which will be fine for fiberglass and acrylic sinks and tubs.

11. Baking soda: If you use a bit of this and water it makes a paste which you can use as an abrasive and it sparkles your chrome fixtures. Also you can put an opened box of this in the back of your first shelf as a neutralizer; to take away any stinky smells you might have.

12. Plastic organizer: I put all of my supplies that I need in here so it is easy to tote up and down the stairs.

13. A good furniture cleaner: to use with the microfiber cloths to clean up all of the dust.

14 . Broom: An angled head nylon broom works best for picking up the dropped cheerios and dirt left everywhere.

15. Sponge Mop: I use a porous sponge mop with liquid soaps to clean the kitchen floor and eliminate small puddles after the rain in my laundry room. After each use soak your sponge mop in a bucket of water and cup of bleach for 10 minutes so mold does not grow and make sure you wring it out well. And change the sponge every other month.

16. Dust Mop: This is the biggie which I use to go under the furniture to keep the hardwood floors clean. This also picks up the mounds of hair left behind in the bathroom. To keep these “alive” clean them in the washer but do not use softener as that will eliminate the static electricity you need to pick things up.

17. Long Duster: These I use for high up places which are hard to reach as well as ceiling fans.

18. Vacuum: Carpets pick up all kinds of dirt and dust on a daily basis.

19. Quick Vacuum: I have a smaller vacuum which I use on a daily basis to clean the kitchen and laundry room floors.

20. Bucket: I like to use an oval big plastic bucket so that I have ample rinsing space for which ever mop I am using.

Happy cleaning!

Thousand Word Thursday

I recently saw this on another mom’s blog and it made me think of some “thought provoking” photo’s I have in my collection. So every Thursday I am going to post a picture that I think is powerful, that expresses emotion, and speaks volumes to me. Here’s one that I believe is worth a thousand words.
You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You’ll never know dear, how much I love you.
Please don’t take my sunshine away…


Cheaper Than Therapy




This little hand

Once upon a time there was the smallest, sweetest most precious miracle that god gifted to us. She came into the world eight weeks early and under some not so great circumstances but none the less after her birth and short stay in the hospital we both went home to start our new lives together.

First there were bottles and diapers, and eventually music groups with other tots. Soon she began talking and walking and making new little friends. Play dates took over most of our lives and watching her develop her own personality really was fun, slowly this small little miracle was becoming her own person. She had likes and dislikes of foods and was very opinionated when it came to dressing, who knew a one year old would be so fashion conscious?

As she grew and met friends my friends changed as our circles revolved around pre-school and ballet. Our days were filled with lots of laughter and love and an occasional temper tantrum usually revolving around the “dressing drama,” but there were always lots of hugs and kisses.

I loved being “mom,” it was the best job in the world. I often thought how lucky I was to have this job and prepare this little gift to one day leave the nest and go out on her own even as scary a thought as it was. I loved holding her little hand!

Pre-school turned into kindergarten and then our friends changed again, and a new home and a new sister, and all of this changed her more and more. At the same time I still loved the kisses and hugs and the feel of her little hand as I watched her learn looking at the world through her “child’s eyes.”

She played so many sports, she skated, she rode, she even played softball for a season, she was what I called the “seasoned” sports player as each only lasted that long but each taught her a different lesson.

At one point in her childhood I became the “voice” for families who did not have an accessible place to play and she joined in and even spoke before the House and Senate. I know this taught her a great lesson. But going to Annapolis I remember we walked into the Capital and I was holding her hand.

Soon came junior high and high school each with lots of lessons, there was driving and curfews and family rules she had to learn to live by. I know I stopped to think at least once or twice that this is going way to fast and I wanted it all to slow down.

I enjoyed the time we had eating lunch together when she called me at her lunch break just so she could eat with me, and when we just sat in bed to “chat” as she used to say when she was a little girl.

I knew and could feel the time was getting close and there were still so many things I wanted to say and still wanted to hold that little hand but I could feel she was getting ready to leave the nest. And then her college acceptances arrive and spring turned to summer.

And in early August as we stood on her college dorm steps saying our goodbyes’, I realized what a wonderful young woman this miracle from god had developed into.

She is everything that I dreamed she would be! I am so proud of this little girl whose hand it was time to let go of…

10 things I could have, should have, would have…

1. If I could close my eyes and go back in time I would have made more time to sit down and really listened to my grandmother’s stories better…

2. If I could close my eyes and go back in time I would have enjoyed my college experience more and taken advantage of everything that I could…

3. If I could close my eyes and go back in time I would have taken the time to travel around the world and see all of the places that I had studied…

4. If I could close my eyes and go back in time I would have spent more time enjoying my pregnancies instead of worrying about them…

5. If I could close my eyes and go back in time I would have spent less time worrying about the mess my kids were making and made it with them…

6. If I could close my eyes and go back in time I would have spent more time working with Ainsley on her speaking rather than worrying about her not walking…

7. If I could close my eyes and go back in time I would have not stressed about each project I worked on…

8. If I could close my eyes and go back in time I would have spent more time with Rebeka on her homework…

9. If I could close my eyes and go back in time I would have taken more time to talk to my husband about his business…

10. If I could close my eyes and go back in time I would have spent more time telling my children and husband how much I love them and how much they mean to me…

We each have the ability to change some things in our lives. What could you have done, should have done, or would have done? Make a list now, and change the things that you still can.

Through the eyes of a child

Helen Keller once said, “The best and most beautiful things in the world cannot be seen or even touched; they must be felt in the heart.”

When I close my eyes I can remember February 6, 1992 like it was yesterday. It was the day my life changed; it was the day my little sister Hadley came into the world.

For a month prior to this anticipated day my mother had been bedridden in the hospital because she was having her second difficult pregnancy which was complicated by Toxemia/Preeclampsia. Everyday the doctors would discuss whether this was going to be the “big day”; the day I would become a “big sister.” What I didn’t understand was that this was about a month before she was supposed to be born so there were pretty good odds that there would be some complications. But my parents knew and understood this since they had already traveled down this road 3 years earlier when I was born under the same “not so great conditions”.

The morning that my mom was going to deliver Hadley everyone was at the hospital. I sat there with my grandparents awaiting the arrival of our new “bundle of joy.” At noon a nurse walked out of the delivery room carrying a little baby past us. My grandma was surprised and asked if this could possibly be our baby. It was indeed my little sister Hadley, and I know that everyone was relieved and happy that she appeared to be small yet healthy.

I was excited on Valentine’s Day when my mom came home from the hospital, but surprised and sad that my new sister Hadley had to stay because she was so small. The doctors wanted to make sure she was gaining the appropriate amount of weight and said that when she looked robust enough they would let her come home. Presidents’ Day weekend things took a sudden turn for the worse. Hadley suffered an intracranial hemorrhage which left her with what we thought was a seizure disorder. I was three years old and my family’s life was changed forever. My parents were devastated! They visited Hadley everyday at the hospital and finally on March 1, 1992 Hadley was released from the hospital and came home.

I could not know or understand the draconian changes of life that had been visited upon my family. I had seen so many friends have new younger brothers and sisters but they just seemed to come home a few days after they were born and then they were there, eating, sleeping, and crying. That’s what we all expected. But our baby came home with a monitor attached to her and she had to take medicine every 4 hours. To the 3 year old new older sister, all of this was very different than expected and very scary. Why couldn’t Hadley be like everyone else’s new baby?

If Hadley didn’t take her medicine she would have frightening seizures. And it was very clear that the medicine tasted bad as she always spit it out. My parents tried to hide her medicine in her formula which made it a funny pink color that looked just gross to me and from the way Hadley took it sometimes I guess it didn’t taste so good either. The terrible thing was if Hadley didn’t get all of the medicine containing formula down she would end up having a seizure. This seemed to always happen at night and my tired parents wound up in the Emergency Room with Hadley night after night. I was routinely “shipped’ to my grandparent’s house while Mom and Dad were at the hospital with Hadley due to yet another seizure.

The first year of Hadley’s life she seemed similar to my other friend’s bothers and sisters except for the seizures, repeated Emergency Room visits and the fact that we went to the doctors’ offices every week. Then around Thanksgiving I can remember hearing my parents discuss the fact that they felt that Hadley was getting hard to move, her legs seemed stiff and she was not doing things that other babies her age were doing like sitting up and making noises.

It wasn’t too long after that the “Hadley club” as I liked to refer to it began. We had Physical Therapists, Occupational Therapists, and Speech Therapists coming to our house everyday. To her they were friends bringing toys to play with, to me they were puzzling, why did my sister need so many grown ups to play with her? And the truth be known, I began to feel that maybe my baby sister was getting more than her fair share of attention. I had been the center of attention of my family for the preceding 3 years and now I seemed displaced. I was too young to understand.

Mom and Dad kept Hadley in a stroller as long as they could. The next big thing that happened, about a year later after Hadley’s second major surgery on her contracted leg muscles, was when she got her first wheelchair. It was very hard for my parents. I was still too young to understand.

When Hadley was about two my mom tried to take her and me to the local playground to play together. Hadley could not play with me on all of the playground equipment. She couldn’t even get close to it as the mulch barriers prevented her wheelchair access. I spent a lot of time running around the playground and unfortunately she spent most of the time on the side with my mom watching me play by myself. This was both hard and sad for my Mom and disturbing to me. Why couldn’t we be just like everyone else’s families? I was still too young to understand.

My mom had enough of sitting on the sidelines with Hadley and one day after our trip to the local park she went home and told my Dad she was going to build a park where all children with and without disabilities could play together side by side.

In October 1996 Mom formed a non profit organization which would build the first and finest fully accessible playground in the state of Maryland and certainly one of the first in the country. My Mom went from stay at home mom to “mom on a mission” who would need to raise one million dollars to get this project done. She became a major activist and somewhat “politically involved.” She went to the state to help secure funding and in doing this I too became a political force by speaking before the State Senate and House on the need of such a wonderful place not only for me and my sister but for so many other diversely able bodied children. I was beginning to understand little by little the impact that my sister’s life was making not only on my small world but the larger world as well. I was growing up faster than some of my friends and yes I was starting to understand.

It wasn’t easy to be me and not be in the spotlight of my family, but I grew to understand that it had to be much harder being Hadley.

Hadley has made me understand life from a different perspective and has helped me grow to be a better more appreciative person. Her existence has taught me important lessons. I feel that the most profound lesson of all is that everyone is a person and that each person is of equal importance, no matter what they look like on the outside. Everyone deserves the right of being treated with respect. And some people need more help than others and those that are in a position to help are in a blessed and privileged position. And so I grew to understand.

I have seen firsthand how some people’s insensitivity and uneducated judgment can lead to misunderstandings and disrespect. I have also learned having the courage to confront such ignorance head-on can contribute to growth in awareness, positive changes in attitude, and stronger family and community bonds. Hadley has taught me that despite looks of “normalcy” all people are challenged and all people need love. And so you see Hadley has helped me to grow and understand.

My life and my family have been forever altered due to Hadley’s disability. We love her very much and cherish the joy she has brought into our lives. I know that she has helped me become a better person. She has helped my parents reach personal goals of which they never dreamed. I wish to acknowledge the important lessons I have learned and share them with the rest of the world. I plan to always behave in a manner that treats every person I meet with the dignity, respect and equality that their very humanity demands. I am old enough to understand and I feel this “with my heart.”

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…

The Basic Facts:

My name is Shelley. I am the oldest of six children, therefore I suppose that is why I am maternal and bossy and I tend to be a leader and a bit of a control freak. If asked to describe myself I would say that I am caring, loving and trusting to a fault (which I am working on) and a little bit pig-headed.

It is my hope that this blog will give me a creative outlet for all of the stored up stories I have been carrying around with me over the past years. I do hope that it will inspire others who are in similar situations.

I grew up outside of Philadelphia in Bucks County. In the middle of my senior year of high school my parents thought it would be fine to move me, and not worry at what cost it was to me, to Connecticut. I left Connecticut seven months later to attend college in Maryland where I met my husband and I have remained for the past almost thirty years.

My children mean the world to me! At times they can be frustrating and challenging. Both are beautiful and sweet girls and have brought so much meaning to my life. That goes ditto for my husband without the beautiful part… but he is cute! And god bless him he is the world’s best father, there isn’t anything he wouldn’t do for his girls.

I suppose this would be the place where I feel I should tell you that my daughter’s names are not really Rebeka and Ainsley, and my better half isn’t really Geoffrey but I am really Shelley.

In my “spare time” I love to cook, garden and scrapbook. (I recently completed 6 huge scrapbooks and am about to start another one for Rebeka’s college years-you know I have time for that.

I welcome your comments and look forward to getting your emails. I do hope that I can help others who “wear my shoes” so to speak. I do look at this blog as a friendly site and I will not allow “haters” who I hope and pray stay away as that is not my aim here.

Update! In April of 2010 I wrote a post titled “It’s time to come clean” disclosing the fact that I was not using our real names.

special needs mom

I have been on this journey of being a special needs mother for the past 20 years, and through the life of my daughter Hadley I have learned so much about unconditional love. Here are my stories…

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

Through the eyes of a child

10 things I could have… should have… would have…

It all started with a story

It was a moment… but a life altering moment

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

Back to school with a wink and a smile

“S” is for Special and Shoes

Spread the word to end the word

The Sweetest sentence in the World!