The Woman In The Mirror (to PixiDust and others interested)

Dutch mom

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This one once caught me.

To PixiDust, it might help you to understand my journey a bit.


The Woman in the Mirror......
By Cheryl Veenstra
February 2001

I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong? Around some corner on the road of life.......she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly uncertain......gray, shadowy images of the vague and scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She'd had hopes and dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.

The same pity she had once felt as she watched a mother hold her 'special child' close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path... It was okay. She and her child could survive, even thrive! It was not as grueling and unforgiving a road as she had imagined. The fog, confusion, despair and fear were being slowly replaced by peace, acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in. She will fight for, live for and die for her child. These special children transform those around them into different people. Stronger people. Dare I say it......deeper people. Long gone are the days when all they had to worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent trying to make their 'family life' as normal and happy as possible.

A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she's been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is a privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl's slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?

Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I'm curious to see how she will continue to change and grow. She's not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!
 
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Dutch mom

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Welcome To Holland + part 2 and 3

----
This is another one which catches our journey so very well. It has become a bit of a cliché in 'handicapped child land' over the years. But it is so true to most of 'us mothers to...', so much other moms wrote part 2 and 3 and describe very well how the journey goes on over the years.

PART 1
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

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 Colloseum. 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.


-----


PART 2
Celebrating Holland- I'm Home
By Cathy Anthony
(my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)

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 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!

-----

PART 3
How Do You Do It? (We Went To Ireland)
by Andee Dunn (Jan.1996)

Today someone asked me that question for what must be the millionth time in my life. My first response was, "I just do." That's worked well many times before. Not now.

My next response was, "How would you do it?" Still, it didn't satisfy this inquirer. She was not like many of the others. She needed more. And she needed it from me. Why?
You see, she was like me. Every single day she deals with the kinds of things I must deal with. I've been doing it for over a decade. She began her 'trip' only three years ago. What trip is that? It was our 'trip' to Holland.

It's an insider tip of sorts. We both became parents to children with special needs and by doing so we went to Holland instead of our planned trip to Italy, like most other parents.

In thinking of an answer to her question I had to think about every aspect of my parenting. Everyday I must help some very special needs get met. Perhaps, I thought, we didn't go to Holland but we went to Ireland. Oh, I did go to Holland about ten years ago with my first child and her special needs. Then again with my second daughter. Holland, instead of Italy, meant an entirely different set of rules; a new guidebook. It served me well. It has served many others just as well.

But now, this unexpected trip to Ireland was threatening to tear our family apart! I needed a brand new guidebook; fast! And they are very hard to find! I needed to know what Ireland had to offer me and my family.

Italy (where everyone else usually went) had beautiful, wonderful things to do and see. Holland (where a few ended up, instead of Italy) had beautiful, wonderful things to offer as well; just not quite the same way. I'd been prepared for either.

When you are first told you are having multiples, your mind envisions carbon copies of everything. You prepare well: all the latest guidebooks, pictures and maps are yours.

Then at some point of your journey you are told, "There's an unexpected change in plans." Your immediate response is to scream, "NO! It can't be! It's not what I planned! It's not the way it's suppose to be!"

Then you calm down and take it all in...slowly. "So where am I?" you ask.
Your hostess explains, "You're in Ireland. Welcome!" You think, "So what am I suppose to do now? I can't exactly combine the books about Italy and about Holland to know what's here."

Ireland is beautiful. The scenery is breathtaking. Ireland has a rich history. Touring the countyside and visiting the castles is a wonderful experience.

Ireland also has places showing you the conflict of it's residents. The devastation of crisis, strife, poverty, war. You see the very best and the very worst side-by-side.

You wonder how the people survive. You talk to some and discover they really love it here. You talk to more and discover how such opposites can coexist.
You start to find the wonderful and the beautiful things on both sides. You realize, this unexpected change in plans will turn out just fine for you.

But everyone else is busy coming and going from Italy or Holland. They tell marvelous stories of the wonderful times they had. They are excited enough to want you to go. You want to go too. And for the rest of your life, you will say, "Yes, that's what I was going to do, too."

Somewhere in your heart, the pain of that will always be present. It will surface from time to time and hurt you again. That unexpected change of plans gave you a loss that cannot be replaced. It must be mourned.

But if you forever mourn that fact, you may never feel free to enjoy this once in a lifetime trip. You will not see the beautiful and the wonderful things Ireland has to offer.

Our special needs children do not fit the usual pattern of the majority. Our special needs children DO still need special things. Things like therapies...OT, PT, SLT, SI, AT, VT, ST, and many, many, more. Things like standers, wedges, boards, walkers, wheelchairs, adaptive switches, and special trays, helmets and vests, balls and rolls, and so many more adaptive devices.

Our children also have a twin, or two triplet siblings and a few even have more. Multiples: our special children were born as one of a set of multiples.
They are twins, triplets, quadruplets, quintuplets, even sextuplets! We, their parents, must work to meet the needs of their multiple relationship and meet their special needs.

It is, on some days, much like a war-torn country. Yes, there are some very beautiful sites; these may sometimes be found side-by-side with some devastating sites. We must cope with both at once. How we handle that challenge may make a big difference in the lives of our children.

They are the most wonderful, absolutely the best ever, highly talented and joyful children in my life. They are what make my trip to Ireland so memorable.
They are my reason for not really missing Holland anymore, or Italy. Ireland is home.

Learning how to help my whole family to appreciate our uncommon circumstances has been the most rewarding trip I've ever taken. The unique bonds between twins, triplets and quadruplets are so endearing...watching one support the other without words, but with true feeling, with deep empathy, with a closeness no one else can match inspite of their differences; and watching them push the other to the heights of frustration and the limits of their capabilities is perhaps the best therapy one can have. I sometimes wonder where my older daughters would be now if they each had a twin to share these experiences with today.

But, I cannot see how I would've accomplished so much without others being there for friendship, support, education and most of all to give me a bit of their humor while mine is still coming along.
 
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Nakamova

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Hey DM, for some reason I was reminded of the town of Geel. I imagine you are familiar with the story of this Belgian town:
https://aeon.co/essays/geel-where-the-mentally-ill-are-welcomed-home
While the town is far from perfect (and its unusual approach may not endure), there is something inspiring in how a culture of acceptance can affect everyone who comes in contact with it.
 

Dutch mom

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Thanks Nak, I didn't know it. Strange while Begium is our neighbor country. It makes me think... I copied it too my Dutch forum for other parents to read.
 

epileric

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Hey DM, for some reason I was reminded of the town of Geel. I imagine you are familiar with the story of this Belgian town:
https://aeon.co/essays/geel-where-the-mentally-ill-are-welcomed-home
While the town is far from perfect (and its unusual approach may not endure), there is something inspiring in how a culture of acceptance can affect everyone who comes in contact with it.
Great article Nak, thanks. It made me think of when I was a young kid. My dad was a psychologist who worked at the mental hospital in Ogdensburg, New York on the Canadian border. All (or at least most) the doctors lived on the hospital grounds where they had all the services that anyone would need but everything from the dry cleaner to the ice cream shop employed the "patients" to work there and because everyone lived on the grounds it had more the feeling of a small community than a hospital.
 

Nakamova

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Having a sense of belonging/connecting to a community can be very therapeutic. It's great when it happens online (as with CWE), but I think it's even better when it's reflected in our "real" worlds.

I read about an area of Martha's Vineyard that was primarily populated by descendants from families who had emigrated from a few towns in England. Those families had a strong streak of hereditary deafness. As a result, everyone was related to someone who was deaf, and everyone spoke sign language all the time. Fishermen used sign language to communicate silently across the water from boat to boat, and townspeople would use it to gossip about visitors to the general store. If you were a deaf resident, you grew up without any sense of being different or strange or isolated from the general community.
 

Blonde Angel

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DM
I know for me personally its been what I liken it to an ongoing grieving process that's changed my priorities to what REALLY matters since the world of special needs come into my life.

Nothing in my personal background prepared me for having a child with special needs. I had a lot of anger at the "why"" and "how"" I was not aware of this life of various challenges when one does not take anything for granted because I simply never needed to focus on that

One has to EVENTUALLY pick themselves up after the initial shock of knowing they have a child that will not be as what most take for granted .

My dream is for my girl to have a productive, healthy and happy life.

My Hubs and I are doing the best we can but we are also mindful of our own needs and our twin Sons to also be healthy and happy.

Its about balance in the role of caring.
 
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