Simply Shelley
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it has been a while

it’s no secret that i have been m.i.a from my site for a while… i just couldn’t get my head wrapped around everything and what i wanted to share with the world, but i’ve given it a lot of thought and time and i’m happy to say “i have a plan.” And yes the plan does include a “redo” so i’ll be transitioning into writing about my life once again but with a lot of helpful design and organizational tips and entrepreneurial posts, and oh yes, my oldest is now engaged so lots of wedding posts. so i’m hoping you will stay tuned and watch me as i blossom once again!

photo via

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…

For better or for worse…

happy anniversaryphoto courtesy of Pinterest

Those were the words that passed my husband and my lips almost 27 years ago. As a mere 20 something young women I really had no idea what I was saying other then repeating the words that I was asked to repeat as I am sure Kenny would tell you the same. As usual I think he was much more nervous about this  change and what it would entail in his life, me not so much, just loved the idea of being with him ever single second and loved planning our wedding.

However over the course of the last 27 years if I had known then what I know now about my life would I have repeated those words? Um…. Probably, but let’s just say it is much better that we didn’t know because I’m not so sure we could have handled it… it has been a LOT, actually a lot would be an understatement.

Let’s just say that over the last few years I have come to believe that there is a “greater plan” for each of us, even if we don’t understand the chaos in “the moment” of a life crisis. I do believe that the man upstairs has our “story” written before we are born and we are here to see his plan through. There have been so many things in my life that some might say were serendipitous to getting me through to the next chapter.

As many of you who follow me know this chapter has been one of uncertainty which has caused a lot of panic and anxiety. Many times in life we don’t know what is going to happen however we hope that things don’t go crazy or awry all at once.

And unfortunately that is where my husband and I are at this moment. But we are here together, making decisions that are life altering, career altering, financially huge issues but hopefully they will be good for us “together” in the long run honoring those words we took almost 27 years ago… for better or worse, for richer or poorer,  in sickness and in health..

40 Things I am thankful for

I thought it might be a fun post on this day where we give thanks…

1. My beautiful daughters

2. Freedom

3. Coffee

4. The smell of fresh cut grass

5. Dark chocolate, almonds and dried cherries

6. The sound of laughter

7. My health

8. Funny movies

9. Electricity especially during the summer!

10. Good friends

11. The grill

12. The look on my children’s faces the first time they met “Mickey”

naples sunset13. A beautiful sunset on the beach

14. A loving heart

15. The sound of rain hitting my window

peaches16. Fresh peaches look at this beauty!

17. That I have had the ability to see one of my dreams come true

18. My lovely home

19. My husband’s determination

20. Good books

21. The little things…

shelley and her camera22. My camera

23. Old songs that bring back good memories

24. The color yellow

25. My day planner

26. All of my senses

27. Hugs

28. My wonderful blog readers!

29. That I was able to stay home and raise my daughters

30. Woodmont grill’s Chicken Salad

31. The food network

red leaves of fall32. The colors of fall, this red is so vibrant!

33. Many wonderful family vacations

34. People who have supported my dreams

35. Special Ed teachers

36. Social Media

37. Trish McEvoy beauty booster cream

georgetown cupcakes38. A good cupcake

39. Sunrise, because that means I have been blessed with another day to “get this right!”

40. Life!

So what are you thankful for? Write a list and leave me the link!

Hello to my new friends!

welcome signI would like to thank Varda of A squashed bologna whose site I am guest posting on later today! So it you have popped over from her Special Needs Siblings Saturday I welcome you! Smiling from one special needs mama or day to another.

If this is your first time visiting “I’m Still Standing” let me give you a little house tour:

“I’m Still Standing” is a place to find comfort and support like home. Stop by to be inspired by stories about overcoming adversity, realizing that we’re all “able”, and to find healthy recipes.

Hello, my name is Shelley known to many as a “Playground Fairy,” Special Needs Advocate, Speaker, Blogger, Entrepreneur, Wife and Mom to three wonderful people who have helped change the world.

I am a creative person by nature and ready to jump into things with both feet, sometimes not really sure what I am getting myself into but always with an open heart. In 1996 I had the dream to create the first fully inclusive playground in the state of Maryland. Only having my design background, and my love for children, and passion to bring this project to fruition I jumped in full force. Not only did we (I formed a nonprofit organization) raise the needed one million dollars to create this playground, which is known throughout the region as “Hadley’s Park.” Our organization went on to build many more in the area, and helped hundreds of more in the country. If you’d like to find out more about me check, stop over here.

And..

while I was doing this my husband Kenny founded a company to enhance the lives of children by taking the “yuck” out of their medicine… Yes, it’s the stuff that the pharmacist asks you “do you want to add flavoring in that” for your children’s medicine.

And..

while we were both doing that my oldest daughter Sarah took being a disability advocate into her own hands after winning Miss Maryland Teen America 2005 and then the title of Miss Continental Teen America and raising awareness that we are all “ABLE”.

And we all did this as a way to give back; to change the world in honor of, our daughter/sister, Hadley who was brought into the world a beautiful little bundle of joy and whose life drastically altered on her 10th day when she suffered a grade 2 bilateral intracranial bleed. It is through Hadley’s life that so many other children’s lives have been changed…

In 2010 I realized I am an “Emotional Eater” and stared a Wellness Makeover. I love to cook and entertain; I can be found a lot of times reading my many cookbooks or magazines on cooking. Shout out to my favorite chef/nutritionist  Ellie Krieger! I also love to scrapbook from wonderful pictures I have taken and read a little here and there, and hopefully someday I will get to Italy.

Thanks for stopping by! Please take a look around and hopefully you’ll find something interesting today that makes you want to come back and visit again!

You might like a few of these recent posts:

What’s in your first aid kit?

There is a time to be proud

It’s time to go back to school for bloggers (I invite you to join in my thursday ProBlogger review group! Just hop on in!)

10 Zenful thoughts

I invite you to subscribe to “I’m Still Standing” RSS feed.

If you tweet, follow me on twitter or if you are interested in learning about my “wellness makeover” on facebook check out this page or you can always contact me.  I love meeting other special needs families and if you want to build a fully inclusive playground let me know, i’d love to help you!

Things I’ve Never Done

as you all may or may not know I had a pretty “big” birthday this summer, gulp…

I’m fifty… that is right five ohhhh

And I have never:

  • Set foot in Italy… yet…
  • Sang Karaoke in public
  • Eaten sushi

 

chicago bean photo credit: Dr. Bacchus

  • Been to Chicago
  • Rode a rollercoaster
  • Had a drawing hang in a museum
  • Seen Gone With the Wind
  • Run in a marathon

red motorcyclephoto credit: Maurice

  • Rode on a motorcycle
  • Broke a bone
  • Given birth the good ole fashion way
  • Met my celebrity crush
  • Danced until dawn
  • Watched the Sopranos
  • Been on a train across the country

 

montana lake photo credit: mtgriz65

  • Been to Montana
  • Been skiing
  • Been a math-whiz
  • Kissed someone just “because”…
  • Swam with the dolphins

ryan seacrest

photo credit: hollywoodmomblog

There is a time to be proud

 

sarah and hadley collage

My girls…

One who is special with a heart of gold…

One with special needs who will make your heart melt…

One who goes into things with an open heart…

One who tries with all of her heart…

One who trained to run her first 5K…

One who works hard just to walk everyday…

One who wants all that the world has to offer…

One who is happy with a hug and a kiss…

No matter what…

There isn’t a day…

When I am not proud of both of my girls!

We Made it through the rain

kenny and sarahThroughout my first pregnancy my obstetrician called me “the girl with the little black rain cloud,” I had no idea just how dark and stormy that cloud would get.

Every time, I walked up the 3 flights of stairs to my apartment with my husband after work, blah vomit, vomit, vomit everywhere and my sweet husband would run to clean it up. That lasted 2 months… Minus 15 pounds…Then I started experiencing gallbladder attacks on a weekly basis… Then, my blood pressure started creeping up… Then my car was plowed into by a crazy driver who was speeding through a red light… Each one of these instances has a story… tears… and a number of days in the hospital… until… it happened… the large amounts of protein in my urine… that was it… that was my admission at 29 weeks gestation for the remainder of my pregnancy to the hospital… Preeclampsia/Toxemia..

I wasn’t ready for this… I had only been to 1lamaze class… I had no idea how to “breathe”… I didn’t have any of my baby stuff picked out… No bassinette… No clothes… no diapers…. Nothing…

My days were filled with nothing but bed rest, blood tests, stress tests, weigh-ins, blood pressure checks and mainly resting on my left side.. The highlight of my day was getting up for a daily shower, which was a big deal, all I thought about was my unborn baby and how she was doing? How was she handling the stress of what this pregnancy was doing to me?

Well that rain cloud finally gave way when my water broke at 34 weeks on a very hot July afternoon, not that I would know how hot it was other then my husband and everyone telling me. I was shocked when I felt the warm gush run down my legs… I thought “nooo” this can’t possibly be happening! But it was… It was so bad inside for my little baby that she was ready to fight with everything she had and come out into the world…

Thank god my husband was there… he ran out to get the bandwagon which would be with me nonstop for the next 36 hours of pure “hell!” Ohhh why did that darn raincloud have to sit on top of my head? But there was nothing I could do now except keep on going forward through what I should call one of the biggest storms of my life…

Birth is not a pretty thing… especially when your blood pressure is 190/220… Nurses… Doctors… blood tests… monitors… IV’s… and then there was “nothing,” pain yes, but my body was just not cooperating… I was only dilated 2 centimeters… So, next came the Pitocin…20 hours….. And still only dilated a small percentage… ice chips… pain… and then….

My blood pressure decided to rise higher and I did not feel “right”… something was “wrong” very wrong… more doctors… more blood tests… more testing… and now a new medicine… Magnesium Sulfate…. And then wham my blood pressure plummeted the other way… and that was it…

36 and a half hours into this and it was time to get this baby out… 15 minutes… they moved my bed at the speed of light from one room to the Operating Room, up went the sheet on top of my stomach, I couldn’t see anything… my poor husband sat next to my head and was ghost white… I was scared… He was scared… What was happening to our poor little baby? All I kept hearing was we have got 15 minutes to get this baby out..

The room had at least 20 people in it…it was a sea of blue scrubs, on heads, feet, bodies…

I felt a pull… a pinch… a stab… and I could hear voices that seemed to be in the distance… although I was right there… somewhat there… in and out… I heard them say they had “her” out…

And then another slew of fuzzy blue scrubbed bodies ran in and grabbed “her”… I heard nothing… No cry…. No cry??? Isn’t the baby supposed to cry??? They strapped her to a board and whisked her off to the NICU…

And I fell into a deep sleep…

She was tiny… 4lbs 16oz… blue… 0 Apgar scores… she was whisked in an incubator… ventilated.. and resuscitated… I never saw her like that..

The Neonatologists’ came in and told my husband that she would most likely be deaf, blind, retarded and never be able to survive on her own…

And then I woke up… where was my baby?

By the grace of god… at 24 hours they pulled her off the ventilator and resuscitator and she was breathing on her own… she did it… she beat the odds of that dark dark storm… and her little rainbow came shining through…

So sad to say good bye…

all my children marriage chartphoto credit: we loves soaps and abc

Today marks an end of an era, some people might snicker and think nothing of it, but for 41 years the town of Pine Valley has been “home” to many who have not really resided there but sat and watched from the comfort of their family rooms and glimpsed into the lives of this small towns citizens.

We have witnessed; hookers become wealthy housewives, people find out they have long lost missing twins, people come back from the dead, siblings stealing each other’s spouses and turning marriages into divorce and then new marriages, bouts with amnesia, anorexia, deadly accidents and switching of DNA test results, babies switched at birth, and lots and lots of blackmail. There have been story lines that were so unbelievable crazy to those that really touched our hearts.

I can’t remember when exactly I started watching All My Children, because the TV was not on in my house during the day growing up, but somehow I must have started watching at a friend’s home in the late 70’s. My earliest memory was watching beautiful Nina Cortlandt fall in love with Dr. Cliff Warner and longed to have a wedding as beautiful as theirs. (Little did I know, in “real life” I would move to the town where they filmed that wedding and many other scenes.)

I have watched Jessie, Angie, Tad and Liza, as well as the diva Erica’s life move from teen to grandparents. It is amazing to think about all of the lives and stories that were intertwined on that show.

The show did bring issues to light and caused people to think about things that were not really spoken about like, anorexia, spousal abuse, AIDS, drug addiction and alcoholism, and rape.

So what did Pine Valley do for me? I know a lot of people think; soaps, how stupid, what a waste of time. But I’ll admit it, Pine Valley has been my “guilty pleasure.” For one hour of time I could leave my life and just watch the lives of others unfold as crazy as some of the story lines were. I found myself hanging from that “cliffhanger Friday” until Monday sometime to see… what happened… and yes it did entertain me, isn’t that what TV is supposed to be for?

5 Organizations that pull at my heart

Valentine’s Day is the day we all think about “love” and those who we have fond feelings for. I’d like to dedicate this post to 5 organizations whose “love” has touched me one way or another.

my babies1. Preeclampsia Foundation: Both of my daughters were born prematurely due to the fact that I had sever Preeclampsia. Unfortunately 23 years ago I did not know of this organization but now for patients who are faced with this there is a wonderful resource.

The Preeclampsia Foundation is an empowered community of patients and experts, with a diverse array of resources and support to help you have the best possible pregnancy or to help you navigate the questions you’ll have if you don’t. We provide unparalleled support and advocacy for the people whose lives have been or will be affected by the condition – mothers, babies, fathers and their families.


Sarah supporting WalkAmerica for the March of Dimes

2. March of Dimes: After delivering 2 preemies 4 and a half years apart. I can truly appreciate this organizations work to help preventing birth defects and prematurity.

President Franklin Roosevelt’s personal struggle with polio led him to create the National Foundation for Infantile Paralysis at a time when polio was on the rise. Better known as the March of Dimes, the foundation established a polio patient aid program and funded research for vaccines developed by Jonas Salk, MD and Albert Sabin, MD. These vaccines effectively ended epidemic polio in the United States.

Its original mission accomplished, the foundation turned its focus to preventing birth defects and infant mortality. The March of Dimes has led the way to discover the genetic causes of birth defects, to promote newborn screening, and to educate medical professionals and the public about best practices for healthy pregnancy. We have supported research for surfactant therapy to treat respiratory distress and helped initiate the system of regional neonatal intensive care for premature and sick babies.

Since 2003, our fight to save babies has been strongly characterized by our Prematurity Campaign. The rising incidence of premature birth has demanded action, and the March of Dimes has responded by initiating an intensive, multi-year campaign to raise awareness and find the causes of prematurity.


Hadley and her buddies at Halloween Dance

3. Best Buddies: I can’t say enough wonderful things about this organization. Every month when Hadley comes home with a note that she is going to have a Best Buddies event at her school that week a smile overcomes her. She has met some very special friends through this club.

Best Buddies 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 (IDD).Best Buddies 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.

Founded in 1989 by Anthony Kennedy Shriver, Best Buddies is a vibrant, international organization that has grown from one original chapter to almost 1,500 middle school, high school, and college chapters worldwide. Best Buddies programs engage participants in each of the 50 United States, and in 50 countries around the world. Best Buddies’ seven formal programs – Best Buddies Middle Schools, High Schools, Colleges, Citizens, e-Buddies, Jobs and Ambassadors – positively impact nearly 700,000 individuals with and without disabilities worldwide. Best Buddies volunteers annually contribute, at no cost to their communities, support services that equate to more than $164 million USD.

4. Shane’s Inspiration: After creating and running Hadley’s Park for about 10 years, I had to hang up my hat for family reasons. Through our work we met another organization in the beginning of their existence with a similar mission. Although they were clear across the country (California) their vision and mission was on par with ours; all children should have a safe and fully inclusive place to play. To this day Shane’s Inspiration works to keep that dream alive, and I cheer for them daily!

In 1998, Shane’s Inspiration gave a gift to thousands of Los Angeles children through the creation of an environment where all children can play together at the highest level of their ability. With the support of visionary community leaders, Shane’s Inspiration created the first Universally Accessible Playground in the Western United States and the largest in the nation: “Shane’s Inspiration.” Located in Griffith Park, “Shane’s Inspiration” provides two acres of fully accessible, sensory-rich and physically challenging equipment.

Since the opening of our flagship playground, Shane’s Inspiration has helped raise millions of dollars to develop over 40 Universally Accessible Playground projects throughout Southern California and as far away as Sri Lanka. We also reach over 2,600children each year through transportation, education and community outreach programs.

5. American Heart Association: Since starting my healthy makeover last year I understand the importance of having a healthy heart! Heart Disease is the number 1 killer amongst women and I wanted to lower my odds and began my journey last year. February is American Heart Month. Their website has a wealth of information, so stop by!

What organizations do you hold near and dear to your heart?