8.31.2010

McHenry Primary Handicap Accessible Playground

This is it!  The last day to vote for Ivey's school, McHenry Primary, in its request to win a $25,000 grant from Pepsi for a handicapped accessible playground. 

Click here to watch Ivey and a few of her classmates playing on the current non-accessible playground:

Currently McHenry is in the number one position for the grant.  Thanks to all of you who have voted for McHenry.  You are making a difference in the lives of many special needs children and for future children that will play on the new playground.  Your vote really does make a difference! 

www.refresheverything.com/mchenryprimary

Then text in your vote to Pepsi by entering in the numbers 73774 and then text 101235


8.18.2010

Taylor


This marks my fourth attempt at this post. For some reason I just can't culminate the words to precisely depict a brief moment in time and give you another glimpse at one small miracle in Ivey's life. Unfortunately- that's all you get – a flash. And here on the inside that is all it really feels like too – a flash – a brief moment of time that went by too fast.

Tomorrow marks a big day for someone who has become a very special part of our family. She'll take to the road and travel many miles for the next year to pursue her future.
It's funny how so many small moments, brief encounters; choices we make that end up as mile markers in our lives – they shape us – make us more than we were.

And without fail, most of those markers end in change.

Two years ago we were asked by our local parent-to-parent organization to volunteer, with other families, to join with a class of students at a local college and allow those students to go into our children's school and to come into our homes – to see what it is like beyond a textbook. So I filled out the necessary paperwork, sent in pictures, all of Ivey, for the students to look over and choose a child. And that was that – a simple task once again would change our lives – forever.

My hopes were to have a sweet person spend some time with Ivey both in school and our home…..and with any luck get someone good who might do a little babysitting on the side.

What we got wasn't even on our radar.

Needless to say her time spent with our family over the last two years left fingerprints all over our hearts.

It wasn't just her influence on Ivey – somewhere in there – Ivey influenced her. Made a mark on her heart too. Ivey set her on a course that will mold her entire future – a career choice. And at 10:30 one Saturday night, she sent us spinning. And tomorrow, no matter where she lands in her future, she will start the journey that we could only dream about.

Her life is about to change.

But I hope she will one day see how much she changed us. What she gave us.

Unexpectedly – I got another moment – just a tiny glimpse – of another life. What I will never have. A different me. I didn't even see it coming. And so I must first thank her mom for sharing her daughter with us. Her mom gave me the greatest gift; she shared her own daughter with me for a brief flash of time, just one summer. Her mom gave me the tiniest glimpse of normalcy that I will never have again. Normal Life with a daughter. The chance to worry if she was okay. Wonder what time or when she would be home. Meeting the boyfriend. Girl talk. And the hardest part, the heartbreak of watching her leave. All things that should naturally happen over time, played out in one summer and I will forever be grateful.

Down the road when my friends begin to worry about boyfriends and dates. Driving. Which college. Their daughters leaving home. So many things. I will have this one summer to keep me sane – to remember.

And if things were different and I had all those things to worry about – and had to try to raise my daughter to make the right choices, I could only pray that she would become just like Taylor.

You did a magnificent job.

Whatever it is you did, you did it right. She is an amazing person. Just like my daughter, she is special. I can only dream of the people she will touch in her lifetime. The difference she will make. Already Ivey has been blessed. And I can't imagine how your heart is breaking just thinking about tomorrow. But thank you for giving her this opportunity – for me – she will make all the difference in my daughter's life. She will teach others how to give her Life.

Just Another Ordinary Miracle – is in the making.

Thank you for sharing your miracle with my miracle +

8.09.2010

Hmm. This is weird.

This morning Ivey skipped (figuratively) off to her first day of school.

It was so exciting.  We got up.  Switched gears with the nurse.  Gave meds.  Packed her book bag.  Packed feeding supplies.  Got frilly in a new dress picked out by her brothers.  Loaded up the car and off we went. 

This is going to be a great year.  Ivey has an awesome 'TEAM'. 


Right as we were heading out the door Knox asked if I thought the teacher would let him read a book to the class.  This was going to be interesting morning. So I said we'll ask - grab a book. 

Hmm.  I am positive his little mind envisioned his Pre-K classroom sitting in a circle eyes locked on him as he enthralled them with a story.  He wanted to read from a chapter book.  Deep breath. His world was about to widen - have more depth - define his character - develop understanding of another type of classroom. 

And after a little discussion - He brought back the Ten Little Ladybugs .....  our brailled edition - and you can actually feel each individual ladybug. 

He was so excited to meet Ivey's new friends.  Thank you Beth.  Watching him read was the best part of the morning. 

But the other best part of the morning - watching Ivey grin (do you see that grin?!) as she heard Ms. Charlotte's voice. 


And I think she was utterly exhausted and happy to be home with her brothers at the end of the day.  Ms. Charlotte said she signed for them all day.  Sweet brothers and sister.  They are special.  (The thumb did come out of her mouth during the day - just not the first thing this morning or once she was tired out, oh well.)




So next week all three birds will be back in school - Ivey is schedule to attend every day - very weird, very weird.

Don't forget to vote for McHenry's playground EVERYDAY for the remainder of August!!!  See button in sidebar to vote.  We need this playground.

8.04.2010

Staring with Style


For tips in Staring with Style scroll down to the italicized section (if you want to skip my ramblings)…. J

Stares come in several shades and on a typical day staring is just part of our normal. And I guess somewhere along the way I did learn to ignore it in most circumstances. Ivey is intriguing. However, the physical features of Ivey that I see as beautiful and subtle reminders of her strength – others see as oddities and markers of weakness. It didn't take long to recognize that Ivey draws attention to herself whenever we are in public. And 99.999% of the time I'm am okay with the stares. I'll admit it still stings a little. But the stinging is now a comfortably numb feeling. It is part of who I am – they stare because of who she is and she is half me.

I have thought about this for the past couple of days – and I have decided that there are just too many types of stares and not enough words to explain how they can make a parent feel on the inside, no matter how well intended the stare is. However I distinctly remember the day that Matt and I decided there had to be a plan – a configuration of words – to explain our daughter to the public. This was our day- the exact moment we knew we needed a plan: click here to read.  Our attitude would mold everyone else. Our posture, how we hold our eyes, if we can smile. All of those things make us approachable – Ivey a person – not an object to stare at. Don't forget – we live in a society that bases everything on outward appearance – first impressions – I can only imagine what others conclude from Ivey's physical features.

So aside from the little glimpse of me being frustrated at a newspaper column – here in daily life – stares are handled much much differently. They are encouraged and accepted as long as they are in good faith. For the record, I LOVE it when someone does walk up to us to speak – ask questions, especially children, they are her peers.

It is easy to label stares into two columns – good stares and bad stares. I distinctly know the 'good' from the 'bad'. However, there is a third stare, but we'll talk about that later.

The good stares we encourage. It gives me a door to introduce Ivey to a new person. And I do that almost daily with every chance I get. I want people to know Ivey and how wonderful she is. I want to teach others to describe her scars and differences as unique attributes rather than deformities.

I want people to see her as the miracle – not a tragedy.

The bad stares I normally ignore. But I don't agree that it is okay that people are merely curious and that somehow condenses a discourteous behavior. What you might not consider because most people can't picture themselves doing this, is the facial expression that extends from the stare, and what it says; the look that says she is grotesque, ugly, weird –some days it becomes too much. The worst part though is how the person chooses to finally look away. Yes, this really does happen. And much to my humanness – some days enough is enough. I have learned the best medicine is simply to stare back.

Ivey never escapes this – ever, the good or the bad. And maybe the real issue doesn't involve Ivey directly at all, she is unaware (or so it seems). Maybe the real issue lies with those who surround her, who love her and all of us who endure these stares with her, knowingly – every day – day in – day out.

I did tell you there is a third stare.

It seems to be the exception to all rules – admittedly even I do this. It is a relief to meet this gaze on the hard days. The 'me too' stare. I have yet to meet a parent of a special needs child/even the parents whose children are now adults, that don't have this look. It's a look that comes only from experience. It is a look of Empathy. No remorse, pity, sorrow, sadness, confusion or curiosity extends from it. – Only admiration for the other child -

The article was something that got my goat following a couple of sleepless nights in a hospital, more talk with doctors about things awry with my girl, the confirmation of another surgery, things that never make print here on this blog. So I guess you got to see me take out some frustration on an unsuspecting article with an author who has no idea she became my punching bag. I guess I saw the mom reaching out for advice and – I saw myself in this mom – just wanting someone to take the reins for once and tell her what to do– to not have to think through a difficult moment anymore - there are so many other pressing issues that need attention.

Now I don't think I would personally ask Dear Abby, but maybe the mom had no one else. And the best DA could do was to tell her to ignore the insensitive (not the good) stares. She needed more. Obviously, Dear Abby hasn't hung out in a mall or on a playground with a child who looks 'different'. It will make the most confident people doubt themselves at times – you feel subconscious – you want to distract – deflect. And then you feel guilty and weak for being bothered at the way someone looks at you. Silly I suppose.

But for all those times, the good happens more often –

Last year I went to the boys' school to eat lunch with them only to notice a student staring intently at Ivey. I ignored it….and then watched in silent admiration as another student who knows Ivey, get up and walk over to the girl staring and start explaining that Ivey couldn't see her; she would have to speak to Ivey and touch her on the arm to let her know she was there. I never said a word, nor let on that I noticed – it wasn't my moment. But it was an extraordinary moment on so many levels. Ivey is loved by so many.
Those two girls went on to play with Ivey for the remainder of lunch....

(Of course I called the mom to let her know how courageous her daughter was in front of her peers in the school cafeteria.)

Well, that's only a glimmer into a small part of Ivey's life and how not all days are easy - no matter how much time passes - some things still are hard to ignore.

So here it is... a little do/don't do list if you were wondering what to do -

Staring with Style Don't's:

So yes, if you feel the overwhelming desire to stare, please stare with some style. A little splash of class would be nice too. Look in the mirror tonight and practice your 'I am going to look at special needs person' stare. Make sure not to pull your eyebrows too high, and don't squish them together too much either. Don't stand with your mouth open. Don't point. And for heaven's sake, don't have the "that's gross" look (our people tend to drool, make strange sounds, have tubes going all over the place, in Ivey's case you are apt to see her remove her prosthetic eyes and hearing aids, or lately she has learned to disconnect her feeding from the extension, etc). Once you look – never try to casually pretend our special people don't exist – they do.

Above all remember the Golden Rule – love thy neighbor as thy love thyself!!

And if that doesn't work remember what your momma said, "Treat others like you want to be treated"! J

 Staring with Style Do's:

Speak to people with special needs just like you would anyone else. Find something around them or what they are wearing to comment on – give them a compliment. Smile!! Ivey hears your smile in your voice! Look them in the eye. God knew what he was doing when he blessed Ivey with a head full of curly blond hair. Tell her how pretty her hair is….and the best thing about those curls…. People are lured to touch those curls (Purell your hands) …go ahead fluff her curls. But if you really want to talk to Ivey ask her to play 'Peek-A-Boo' or 'Pat-A-Cake' (and be ready to play it several times)

If you want to know something – ask! No question is too hard.

And foremost – always speak to the siblings – they are the people who take the brunt of it all.

But please, whatever you do, don't just stand there and stare… J

8.02.2010

Dear......Dear Abby,

I am just curious and by all means am not in the position to make a real judgement call except for the fact that I do have a daughter who NEVER seems to be able to step outside the confines of her house on any given day, for any given reason, with any given person without being stared at - whether in good taste or bad - so I am overwhelmed by your keen since of reason and fundamental ability to handout such insightful and truly supportive advice to parents in the masses like myself.  And Dear Abby I must thank you for shouting to the rest of your readers - 'Hey, go ahead and stare all you want.  Forget the families for they should just 'turn the other cheek' and never feel the confusioning need to step up and harbor the CHILD that stares inadvertently demean and belittle.'   Because my dear Dear Abby, there have been days I have literally looked to the skies and thanked God for taking her vision - yes, Ms. Abby pick your jaw up off the floor now and dust it off - because my daughter has dodged the bullet by not being prey to those stares. She doesn't see them.  But often I wonder if she 'feels' those stares.


And don't you worry Dear Abby the next time my seven year old or five year old sons - HER brothers - ask me why 'that' person is staring at their sister, or why do people stare at her 'all' the time - I am now better prepared - I can just shrug it off - its no big deal - I will explain to them that they should be bigger people even though they still reside in bodies that should be innocent and unworldly.  Who will, Dear Abby, endure torment on the school playground because their sister is 'different', no matter what effort we the parents make to have her accepted in society so that they (her brothers) will be accepted in their small niche of life.  Yes Dear Abby they will be easy targets.  Dear Abby when one of my sons comes home for the first time in tears or from a fight because they are either shattered or bruised from living a life in the shadow of those harmless stares - I'll reflect to them your words of wisdom. 


DEAR ABBY: I am the parent of a child with special needs. To an outsider he

looks different; adults and children stare at him when we're out.

My son is not aware of their impolite behavior, but I am -- and it really irks

me. What should I say to these insensitive people? -- BOILING MAD IN NEW JERSEY



DEAR BOILING MAD: I don't think you should say anything. It is not unusual for

individuals of every age to do a double take when they see someone -- or

something -- that is "different." Of course staring is impolite, but unless

someone makes a remark or asks a question about your son, you should ignore the

person.

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling w...