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Inspirational Reading

Welcome to Holland
By Emily Pearl Kingsley
Celebrating Holland- I'm Home
By Cathy Anthony
An Inspired Man – Michael the IRONMAN for team-TRIsomy™
It's all about the dash! The Unique purpose for each life. How each life touches another, Whether they here briefly or many days. How will you spend your dash? The Dash Join the Living with Trisomy 13 Community as we support Michaels mission sharing Trisomy Awareness Around the World Ironman for Kids
Trip to Holland? Not us.
a little 'musing'
by Jennifer Armerding
I am Holland
by Chantelle Wilkes McLaren
"Older child is 'ray of hope' for new mother"
News-Journal Corporation
To You, My Sisters
By Maureen K. Higgins
Heaven's Very Special Child
By John & Edna Massimilla
The Tea Cup The Special Mother
by Erma Bombeck

The Tea Cup

There was a couple who used to go England to shop in a beautiful antique store. This trip was to celebrate their 25th wedding anniversary. They both liked antiques and pottery, especially tea-cups.  Spotting an exceptional cup, they asked "May we see that one? We've never seen a cup quite so
beautiful."

As the lady handed it to them suddenly the tea-cup spoke, "You don't understand." it said, "I have not always been a tea-cup. There was a time when I was just a lump of red clay. My master took me and rolled me, pounded me, and patted me over and over until I yelled out, 'Don't do that. I don't like it! Let me alone!', but he only smiled, and gently said; 'Not yet!'

"Then, WHAM!  I was placed on a spinning wheel, and suddenly I was spun around and around and around. 'Stop it! I'm getting so dizzy!  I'm going to be sick!', I screamed. But the master only nodded and said, quietly, 'Not yet.'  He spun me, poked and prodded me, and bent me out of shape to suit himself, and then......

"Then he put me into the oven.  I had never felt such heat.  I yelled and knocked and pounded at the door. 'Help! Get me out of here!' I could see him through the opening, and I could read his lips as he shook his
head from side to side, 'Not yet'.

"When I thought I couldn't bear it another minute, the door opened. He carefully took me out and put me on the shelf, and I began to cool. Oh, that felt so good! 'Ah, this is much better,' I thought.

"But, after I had cooled, he picked me up and brushed and painted me all over. The fumes were terrible. I thought I would gag. 'Oh, please stop it. Stop it!' I cried. He only shook his head and said. 'Not yet!'.

"Then suddenly he put me back into the oven.  Only, this oven was not like the first one. It was twice as hot, and I just knew that I would suffocate. I begged. I pleaded. I screamed. I cried. I was convinced that I
would never make it. I was ready to give up. Just then the door opened, and he took me out and placed me once again on the shelf. There I cooled and waited ------- and waited, wondering, 'What's he going to do
to me next?'

"An hour later he handed me a mirror and said 'Look at yourself.' And I did. I said, 'That's not me; that couldn't be me. It's beautiful. I'm beautiful!'

"Quietly he spoke: 'I know that it hurt you to be rolled and pounded and patted, but if I'd left you alone, you would have dried up.

"'I know that it made you dizzy to be spun around on the wheel, but if I had stopped, you would have crumbled.

"'I know that it hurt and was hot and disagreeable in the oven, but if I hadn't put you there, you would have cracked.

"'I know that the fumes were bad when I brushed and painted you all over, but if I hadn't done that, you never would have hardened. You would not have had any color in your life.'

"'If I hadn't put you back in the second oven, you wouldn't have survived for long, because the hardness would not have held. Now you are a finished product. Now you are what I had in mind when I first began with you.'"

The moral of this story is:

God knows what He's doing [for each of us]. He is the potter, and we are His clay. He will mold us, and make us, and expose us to just enough pressures of just the right kinds that we may be made into a flawless piece of work to fulfill His good, pleasing, and perfect will.

So when life seems hard, and you are being pounded and patted and pushed almost beyond endurance; when your world seems to be spinning out of control; when you feel like you are in a fiery furnace of trials; when life seems to "stink", try this....Brew a cup of your favorite tea in your prettiest tea cup, sit down and think on this story and then, have a little talk with the Potter.
 

Welcome to Holland
By Emily Pearl Kingsley

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 guidebooks and make your wonderful plans... the Coliseum, Michelangelo's David, the gondolas of 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!"

The stewardess replies, "There's been a change in the flight plan. We've landed in Holland and it is here 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 is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt. 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 is what I had planned."

The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


Cathy Anthony is a parent, advocate, volunteer with the Family Support Institute  in Vancouver, BC and works with a community agency coordinating their Family and Individual Support Program. Her son, Joshua, is now (April 2005) 20 years old.

Celebrating Holland- I'm Home
By Cathy Anthony

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger - the pain and uncertainty.

In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

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 Rembrandt's.

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!


I am Holland
by Chantelle Wilkes McLaren

 Chantelle McLaren, who has
CHARGE Syndrome, is now
 26 years old and married

I am Holland
Over a decade ago you came to Holland
Your ticket to Italy in hand
You had been eagerly waiting to go
To see Rome, and Michelangelo
The plane instead landed in Holland
I know it wasn't what you planned
To you this was new
But I had been waiting for you
You see I am Holland
So I held you by the hand
You were just the one
The very special person
I knew that you would love me
Did I help you to see?
The wonders of this place
The softness of your face
I am glad you are here
I am glad you are near
You love me
Unconditionally
You did not mind that I am slow
The little that I know
The windmills and the tulips
The sails and the ships
This quiet place
The soft face
I love to hold your hand
For I am Holland
 


Trip to Holland? Not us.
a little 'musing'
by Jennifer Armerding

Hey! You are having a baby! Sure enough, you are told by the doctors that you have a baby, but apparently the baby is Dutch, rather than Italian, which is what you were expecting. (Let's make the silly assumption that nationality brings with it different care needs!) Woah! Now you need to
learn to care for a Dutch baby. New lingo, new physical care, etc. But. you are IN Italy. Your friends are still Italian. Your grocery store is still Italian. Your church is still Italian. And most of them haven't met anybody Dutch before. They are intrigued by your child. However, Dutch babies are pretty adorable, in general, like any other baby. You also find that there are a league of professional people swarming around whose entire job is to help your baby adapt to become more Italian as he grows. You meet other families who ended up with Dutch babies and live in Italy. You all hold out hope that your babies will become more Italian as time goes on. As your baby grows, you read magazine articles and see television features about babies 'just like yours' who beat the odds and became Italian! Yours doesn't.

He isn't a baby anymore, and the former swarm of professionals becomes a few here and there. People aren't saying it, but you get the feeling they don't think there is much chance he will gain too many Italian skills as time goes on. He is slower, can't seem to learn the language, looks different, etc. Ok, you tell yourself! Dutch is good! This kid is the greatest! People from Italy and Holland can coexist! We will call it inclusion! Then you learn that inclusion means that the Dutch kids have to be able to do what the Italian kids are doing or they are deemed 'inappropriate'. Some of your friends' Dutch kids manage to do this. Some of them don't. Apparently they belong with other Dutch kids in a separate place. Italian kids will visit them from time to time, maybe reading to them or playing games, and then they will leave. Other kids have 'friends'. Your kid has 'helpers'. The
Italian kids might even earn points and rewards for volunteering to do this!

Your child is now not a 'little kid' anymore. You and he walk down the street in your wooden shoes and realize all of a sudden that everyone rushing past you is wearing the latest styles; leather, silk, designer clothes. They are talking madly on their cell phones. They are laughing and drinking their espressos in sidewalk cafes. They are speaking Italian, which you used to know. In fact you were fluent. Now you wonder what happened. Dutch is now your language. The Italian seems.. foreign somehow. When did YOU become Dutch? Well, the hard part is that, far from being an adorable
baby, your child is now a challenge for Italian people to accept. Unless they know other Dutch children or have known you for a while, it is hard for them to know what to say to you, how to treat your child. If they invited your child to a birthday party, for example, what would they do with him? They only speak Italian. The games will all be ones Italian kids play. So they don't invite him. The Italians are big hearted, warm people, in general, but still, you are a foreigner. Other kids stare and sometimes even worry that they might become Dutch if they get too close. So they don't. You stand in a crowded hall with your wonderful, sweet child with a 10-foot parameter of empty space around you, and that is when it hits you.

We are not in Holland. We are never going to Holland. This is it.

Jennifer Armerding and her two adopted sons. She is in the process of also adopting a daughter.


To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.


HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

By John & Edna Massimilla


The Special Mother
 by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint Matthew."

"Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't thing she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is
doing My work as surely as she is here by My side."

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

 

 

Click here to download printable LivingWithTrisomy13.org "awareness cards."

Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA  92649

info@LivingWithTrisomy13.org

 

 

Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 

Looking for ALL families who’ve had a trisomy child of any number. Whether you terminated, miscarriage, had a stillbirth, live birth - living or deceased. Including adoptive and Foster parents. Please fill out the TRIS survey  to help update the medical literature and to improve the quality and availability of medical care. Tracking Rare Incidence Syndromes (TRIS)  Click here to add your information

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