A Day In The Life Of Hadley
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A Special afternoon and Evening!

if a picture says a 1000 words… this is speechless!

A colorful cake for a colorful young lady!

I have made some pretty amazing cakes over the last 20+ years for my daughters, if I say so myself. I made an incredible haunted mansion for Halloween one year, and a 3 layer “pound cake” which my grandmother dubbed 10 ton cake because it was so heavy. However, one of the liveliest cakes I made was for Hadley this year, and I made it with her help.

White on the outside….

6 layers high…

How about this folks?

all the colors 6 layer Rainbow cake

I got the recipe from Martha Stewart, and I can recommend this for a fun baking project with your little children.

colorful batterFirst we mixed up a few batches of cake batter and added a splash of color

Hadley my little baker Hadley had a blast mixing and tasting, Yum!

6 layers of the rainbowWe added the delicious filling between each layer as we pilled the cake so high

the birthday bakerYou can see the birthday baker is thrilled with her end product!

A family that walks the walk…

Our family firmly believes in giving back… I can get out my soap box and give you several reasons to support causes that come near and dear to your heart as I am sure there is “something” that has touched your life by now, or believe me there will be…

But I have always believed in helping others, as a small child I can remember wanting to host a Ronald McDonald Carnival in my backyard for McDonald’s Charities. This predates the Ronald McDonald House which ironically later became my daughter and my sororities’ philanthropy of which my daughter was Philanthropy Chairperson. Also in my younger years I thought about opening a camp for children with special needs only to become a mother of a child with cerebral palsy. As the course of life would have it I went on to found a nonprofit organization to create fully inclusive playgrounds.

I do believe that some of this crazy world is set out for us. There is too much that has happened in my life to believe otherwise…

So to help other families of children with seizure disorders our family thought it would be fun to walk together in the National Epilepsy Walk to honor Hadley and others like her.

hadley got her shirtHadley loving her shirt

hadley startingAt the starting point

group finishTeam Hadley, family and friends at the finish line 2 hours or so later

finish line with miss kimOur family and Hadley’s ever loving teacher at the finish line, Cheers!

It was a wonderful spring morning and great family way to honor her spirit!

MetroAccess can take Hadley anywhere!

Hadley intervewing for MetroaccessHadley recently got her second set of “wheels” so to speak…she got her “MetroAccess” Pass which has made our lives a little easier since I have been having a hard time getting her out and about due to my “driving anxiety.”

I am so thrilled that now we can take her out to the movies or to the mall if I “can’t” get her there myself, or if she and a companion want to go to somewhere without me… It is a little step of independence for her which is a little thrilling.

Through MetroAcess in the Washington DC area people with disabilities are able to use public transportation with a bit of ease.

Since Hadley’s mobility and degree of her disability is a major issue she was able to qualify for door to door service after submitting an application and interview.

All trips that we schedule to use MetroAcess must be made 24 hours in advance which sometimes is a little bothersome, no running out at the last minute trips. However, if one lives near a Metrobus you can always catch these at anytime the busses are running and just show a MetroAcess ID for admission.

For door to door trips there is a fee associated with the time of day and the mileage, and it can be a shared ride depending on who else in the area needs a pickup or drop off.

MetroAccess service in the DC area is for: Washington DC, Fairfax City, PG Montgomery, Alexandria, Arlington and Fairfax Counties.

I am told since Hadley is registered in the area she is eligible to use paratransit transportation in other areas throughout the US which will come in handy when we travel. However arrangements must be made prior to the day of travel as with MetroAccess.

You also might not know:

  • After 9:00pm, if one asks the driver, special stop requests on Metrobus or Ride On are possible along the regular bus routes, when the bus driver feels it is safe.
  • Your driver can call ahead for a taxicab to meet you when one is leaving the bus.
  • Personal Care Attendants drive for free with the disabled passenger.

For more info on Metro Access you can check out their website

Or you can reach them via phone 1-800-523-7009, 301-562-5360 TTY 301-588-7535.

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!

Welcome to Holland

sarah and hadley

I have often used this short story when speaking about the importance of play for all children, so for those of you who I have not had the honor of sharing this with, although the words are not my own, the sentiments sure are; “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.

©1987 by Emily Perl Kingsley. All rights reserved

life unexpected…

And so it happened again… no matter how hard I try… my happiness for one daughter gets caught up with sadness for my other…

As a mom we watch our children change before our eyes. In the early years it is almost a miracle to watch the development of a newborn to a walking and talking toddler.

Sarah, my oldest, a very precocious and fashion minded toddler. Who I watched blossom through her youth and teens, now into her 20’s, a college graduate ready to “make it on her own.” (At least if you ask her that is what she thinks)

Well, this is what we want for our children, we want them to be happy and healthy, have security in a job and find happiness for their lives….

Butttt…. In the moment of watching Sarah grown up… graduation… and now getting ready to figure out how to move onto that next chapter in her life… I get caught up holding onto Hadley and wishing that she just had the chance to do one of these things… I do look at Hadley and marvel in all that she is and all that she has brought us, but sometimes ya know… I just wish… for more….

The gift of friendship

 

hadley and friends

If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… i’ll always be with you.” ~Winnie the Pooh

Best Friends… What is a best friend? A Buddy? Hmm, to be a best friend or buddy is:

• Someone who knows my faults and still wants to be around me
• Someone who challenges me to make myself a better person
• Someone who I can tell my “secrets” to
• Someone who I can spend “silly” time with as well as serious time

To children like Hadley with disabilities friends are hard to come by, they have the friends in their classes but role models of “able” children are so important to them.

It is because of a program called Best Buddies which is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities that Hadley and friends like her have the opportunity to have these role models and buddies.

Founded in 1989 by Anthony Kennedy Shriver, Best Buddies is a vibrant, international organization that has grown from one original chapter to more than 1,500 college, high school and middle school campuses across the country and internationally.
Don’t you love to watch your children play with their friends… enjoy sports together… sleepovers…

I’m hoping that you will take a moment to help keep that dream alive for Hadley and her friends and join our teamto help support the dream of “friendship.” Perhaps pass that cup of Starbucks today and donate the $5.00 to this worthy cause, in the name of “friendship.” Thank you!

The sweetest sentence in the world!

“My name is Hadley.” That is the first time in all of my forty plus years that a four word sentence brought tears to my eyes!

I know we all get proud of our children and all of their accomplishments but when we are talking about special needs children who work doubly hard it just makes the reward that much sweeter.

Little Hadley has always worked so hard. She has had therapists in her life since birth and knows them as “friends” who come to “play” with her no matter how difficult it is for her. She is little the little engine that could she keeps on trying and trying no matter how much sometimes I know it actually “hurts” her. She has made great strides due to the work of many loving therapists and teachers.

But today, as she was sitting on the coach by herself I heard these four little words come out of her mouth and I was amazed to the point of tears! “My name is Hadley.” A sentence… A real sentence…. 18 years and finally a sentence…

It just doesn’t get any better than this!