I’M SPECIAL
On my way from Heaven,
God delayed my trip that day.
He said that I was special,
and then sent me on my way.
But not before he kissed me,
Right upon my ear
He left his blessed mark
to carry with me here.
He whispered in my ear right then,
that He loved me without doubt,
and then He closed my ear up tight,
so the whisper won’t get out.
He told me both my legs were strong
and would help me stand up tall.
He told me both my arms would work
to catch me if I fall.
My eyes would catch my memories
to store within the pages of my mind,
My heart would fill with all the things I would love,
so many things, I would find.
He told me I could fall asleep
to my Daddy’s bedtime tales,
and listen while my Mother sings
of seas and boats with sails.
One ear, He told me, could hear the sounds
that little birdies make.
The other ear was His gift to me,
a blessing for my sake.
For when I’m feeling sad, He said,
my other ear would hear,
His whispered words of eternal love,
left waiting for me there.
– For my Charlotte
Posted by Liz Pople, member of our support group.
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.
by, Emily Perl Kingsley, c1987 by Emily Perl Kingsley. All rights reserved
Posted by Missy Davenport and Tiffany Wilke, members of our support group.
“Welcome to Holland (Part 2)” by Emily Perl Kingsley
I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its’ tulips, windmills and Rembrandts.
I have come to love Holland and call it Home. I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!
Posted on the Microtia and Atresia Support Group by Melissa McClellan, Ear Community Board of Director Member (10/2/2015)
NEMOS
There’s plenty of fish in the sea.. ?
Yeah? Well 50% are girls,
30% are over 18,
and 15% are under 10,
which leaves 5% of the population.
2% of the remaining fish are taken,
and we haven’t even gotten into the personalities
of the fish, what the fish looks like,
and what you two have in common.
After all of that narrowing down,
there is only one fish left in the sea.
That fish is your nemo, so
never let anyone dare to tell you that
there are plenty of fish in the sea.
Posted by Lyuba Kap, member of our support group.
A Cute Story About How Disney Helped Us On the Nemo Ride
Our little treasure, Mia – 2 1/2, has UMA and just started wearing a borrowed Ponto hearing aide a few months ago and is loving it. Her older sister now tells Mia’s special ear secrets. Before that, “destructo baby” would dismantle the devise in seconds. We just recently took a family vacation to Disney Land and although I shared a few of the stories with family and friends, only another Microtia/Atresia family would truly understand the irony behind the events.
First of all, we waited forty five minutes to meet the Disney Princesses, which I think was the highlight of the trip. My oldest was convinced that Cinderella wore a hearing aide just like her little sister because Cinderella sports a blue headband like Mia’s Ponto, which is also on a blue headband. Cinderella was wonderful as she smiled and told them hers was just a headband. After gently examining Mia’s headband, she whispered to Mia that her hearing aide was magical and it was a beautiful thing. My little one glowed for the rest of the day.
But what really taught us the magic of Disney Land was the Finding Nemo ride. Finding Nemo has always been a special movie in our hearts that has helped us talk to Mia and her big sister about Mia’s special ear, just like Nemo’s special fin. So, when Mia lost her hearing aidee on the Finding Nemo ride, we couldn’t help but think how fitting it was. Of all the rides to lose her hearing aidee, we lost it on Finding Nemo! I was a wreck, looking everywhere we had been in line, looking under strollers and people’s feet, Disney Land employees scoured the seats of each submarine we might have been on. Fortunately, the staff at Disney Land was fantastic and they didn’t stop looking until they found it. We hugged and cried just like a happy ending of a Disney movie. We can look back and laugh now. Thank you Disney Land!
WHAT LOVE MEANS TO A 4-8 YEAR OLD…
‘When my grandmother got arthritis , she couldn’t bend over and paint her toenails anymore.. So my grandfather does it for her all the time , even when his hands got arthritis too. That’s love.’ Rebecca- age 8
‘When someone loves you , the way they say your name is different.
You just know that your name is safe in their mouth.’ Billy – age 4
‘Love is when a girl puts on perfume and a boy puts on shaving cologne and they go out and smell each other.’ Karl – age 5
‘Love is when you go out to eat and give somebody most of your French fries
without making them give you any of theirs.’ Chrissy – age 6
‘Love is what makes you smile when you’re tired.’ Terri – age 4
‘Love is when my mommy makes coffee for my daddy and she takes a sip before giving it to him , to make sure the taste is OK.’ Danny – age 7
‘Love is when you kiss all the time. Then when you get tired of kissing , you still want to be together and you talk more. My Mommy and Daddy are like that.
They look gross when they kiss’ Emily – age 8
‘Love is what’s in the room with you at Christmas if you stop opening presents
and listen.’ Bobby – age 7 (Wow!)
‘If you want to learn to love better , you should start with
a friend who you hate , ‘ Nikka – age 6
(we need a few million more Nikka’s on this planet)
‘Love is when you tell a guy you like his shirt , then he wears it everyday.’ Noelle – age 7
‘Love is like a little old woman and a little old man who are still friends even after they know each other so well.’ Tommy – age 6
‘During my piano recital , I was on a stage and I was scared. ! I looked at all the people watching me and saw my daddy waving and smiling.
He was the only one doing that. I wasn’t scared anymore.’ Cindy – age 8
‘My mommy loves me more than anybody
You don’t see anyone else kissing me to sleep
at night.’ Clare – age 6
‘Love is when Mommy gives Daddy the best piece of chicken.’ Elaine-age 5
‘Love is when Mommy sees Daddy smelly and sweaty and still says he is handsomer than Robert Redford .’ Chris – age 7
‘Love is when your puppy licks your face even after you left him alone all day.’ Mary Ann – age 4
‘I know my older sister loves me because she gives me all her old clothes and has to go out and buy new ones.’ Lauren – age 4
‘When you love somebody , your eyelashes go up and down and little stars come out of you.’ (what an image) Karen – age 7
‘Love is when Mommy sees Daddy on the toilet and she doesn’t think it’s gross..’ Mark – age 6
‘You really shouldn’t say ‘I love you’ unless you mean it. But if you mean it , you should say it a lot. People forget.’ Jessica – age 8
ALWAYS KNOW THAT YOU ARE LOVED!
Posted by Buffy Barnes, member of our support group.
A QUOTE BY PEARL BUCK
“When your little child is born to you not whole and sound as you had hoped, but defective in body or mind or perhaps both, remember this is still your child. Remember, too, the child has his right to life, whatever that life may be, and he has a right to happiness, which you must find for him. Be proud of your child, accept him as he is and do not heed the words and stares of those who know no better. This child has a meaning for you and all children. You will find a joy you cannot now suspect in fulfilling his life for and with him. Lift up your head and go your appointed way.”
Posted by Lisa Buie, member of our support group.
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