Coping With Epilepsy Citizens United for Research in Epilepsy
Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Nursery



Reply
 
LinkBack Thread Tools
  #1  
Old 04-16-2009, 05:04 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts

For all special needs kids parents


This song is original by Luke Kelly. But this cover by Sinead O'Connor really touched me.


See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how he feels
Or have we really tried

See him now
As he stands alone
And watches children play a children's game
Simple child
He looks almost like the others
Yet they know he's not the same

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

See him stare
Not recognizing the kind face
That only yesterday he loved
The loving face
Of a mother who can't understand what she's been guilty of

How she cried tears of happiness
The day the doctor told her it's a boy
Now she cries tears of helplessness
And thinks of all the things he can't enjoy

Scorn not his simplicity
But rather try to love him all the more


Scorn not his simplicity
Oh no
Oh no
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 04-16-2009 at 05:12 PM.
Reply With Quote
  #2  
Old 04-17-2009, 11:14 AM
katie's mom's Avatar
Joined the Party
 
Join Date: Apr 2009
Location: East TN
Posts: 80
Thanks: 0
Thanked 2 Times in 2 Posts
Wow!!

What a powerful and moving song!! This really portrays the injustice of a world that doesn't have enough compassion for the burdens people carry and the ways special children and mothers alike suffer every day as a result.

I also wanted to share a poem that someone sent during a similar discussion on the epilepsy foundation site. It focuses more on mothers of special children, and is not as deeply profound of a portrait, but is still very heart-warming:



"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 think 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 if 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."
Reply With Quote
  #3  
Old 04-17-2009, 01:40 PM
Joined the Party
 
Join Date: Apr 2009
Location: Maryland.
Posts: 90
Thanks: 0
Thanked 1 Time in 1 Post
Well, you both made me cry at work. Happy? I am. We truly are blessed aren't we? Thanks for helping that fact before my eyes.
Reply With Quote
  #4  
Old 04-17-2009, 05:15 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts

The Woman in the Mirror


We could collect these special needs parents poems and texts here in this thread. I'm sure most of us know 'Welcome to Holland' and other 'famous' ones but there will be new parents reading them to who these will be new.

Katie's mom: Emma Bombeck's last scentence about the mirror made me think of one I've posted before in the Creative Writing Page (social groups on CWE.)

I'd like to add this one here because it has brought tears in my eyes many times. Reading it always makes me have a look in the mirror, I seed myself again and again but in different periods in this story.

Rackelsmom: You have to get your kleenex before you start reading. Yes, we're blessed. But are they...?


Quote :
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!
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 04-17-2009 at 05:18 PM.
Reply With Quote
  #5  
Old 04-19-2009, 08:04 PM
Joined the Party
 
Join Date: Apr 2009
Location: Maryland.
Posts: 90
Thanks: 0
Thanked 1 Time in 1 Post
Thank you Dutch mom. That was just beautiful. I can relate to that woman. The one who is comforted by hope, and is led by faith through the night into a peaceful calm day where the sun shines and my child laughs, unaware that others percieve her as different. She is blessed. God has shined His love on her and she is filled with joy that other 8yo's I know don't seem to possess. And when she is truly struggling to do something new, she reminds me that in Heaven she will run on streets of gold and will be able to voice all the thoughts that here on earth are locked up in her head, for now. I believe since she has struggled so hard here that there will be a very special place for her and all the other children like her.
Reply With Quote
  #6  
Old 04-20-2009, 11:05 PM
katie's mom's Avatar
Joined the Party
 
Join Date: Apr 2009
Location: East TN
Posts: 80
Thanks: 0
Thanked 2 Times in 2 Posts
Dutch mom/Cheryl, what a thoughtfully-crafted composition! You have written such a touching testimony to the special calling of the special mother. It is an honor and responsibility whose tribulations will never be fully recognized and whose rewards will never be fully reaped in the fallen world we live in but through faith we learn that it will ultimately be redeemed by the Almighty in the life everlasting. So often I think of the passage, "whoever would be the greatest among you must be the least and servant of all"

I think that it is also a wonderful idea to start this thread as a collection of special texts. I love Ann's imagery of the child running joyously through the streets of gold!! Wonderful words of hope, Ann!! This reminds me of a post from another epilepsy foundation mom who said:

"They call em, Angel Babies. Here to teach, not to learn! I truly have learned a lot from my little one. But one day, joy unspeakable will happen when they receive their glorious new bodies that are completely healed. The Lord has lent us these special children of His to take care of and learn from. I know He carries them when they can't go another mile, and me, too. Praise to Jesus! So.... We press on with our greatest hope to come and our small miracles with us, awaiting His return. "

Again, thanks for the inspiration!!

Last edited by katie's mom; 04-20-2009 at 11:16 PM.
Reply With Quote
  #7  
Old 04-24-2009, 08:10 AM
Sevenup's Avatar
New Here
 
Join Date: Apr 2009
Posts: 9
Thanks: 0
Thanked 0 Times in 0 Posts
Wow, the lyrics to this song are very touching, and really resembles my lowest functioning autistic child.
Reply With Quote
  #8  
Old 04-25-2009, 03:19 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts

Sue Stuyvesant's 'Where are the parents?'


Quote :
Hey everyone, For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microecephallic, athetoid/spastic complex partial, Cortical Visual Impairment, Seizure disorder -- and CUTE! Ok, now for the reason I'm posting. To make a long story short, earlier this week a question was asked by some nit wit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was "Where are the Parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. My friends thought I should share it all with you, and I apologize for the length, but I wanted you to have it all. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Sue Stuyvesant 10/15/96
Permission to duplicate or distribute this document is granted with the provision that the document remains intact.
Original Source: www.pokweuk.org (website no longer exists)


Where Are the Parents?
By Sue Stuyvesant


Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.
They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?
They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.
They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.
They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own.

Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.
They are struggling to keep a marriage together, because adversity does not always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra expenses.
And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive.
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 04-25-2009 at 03:22 PM.
Reply With Quote
  #9  
Old 04-26-2009, 04:02 PM
Sevenup's Avatar
New Here
 
Join Date: Apr 2009
Posts: 9
Thanks: 0
Thanked 0 Times in 0 Posts
Oh wow, that is really good. I bet a lot of foster parents can really relate also.. I know as a former foster parent and mom of 7 with several special needs we sure can relate to that.
Reply With Quote
  #10  
Old 04-27-2009, 07:40 AM
Joined the Party
 
Join Date: Apr 2009
Location: Maryland.
Posts: 90
Thanks: 0
Thanked 1 Time in 1 Post
Dutch Mom,

Wow! That really hits the mark, I have an IEP meeting today and believe that this would be a good thing to pass on to our joke of a meeting facilitator. He fought tooth and nail to keep Rachel in public school and then when I finally brought in the big guns and got her into an appropriate placement, he fights to move her back with every meeting. Thankfully the staff at our new school is very skilled in dealing with him. I just find it such a disgrace that they would place someone with so little compassion to be in charge of special needs children's education. Perhaps this will open his eyes...
Reply With Quote
  #11  
Old 05-08-2009, 10:02 PM
katie's mom's Avatar
Joined the Party
 
Join Date: Apr 2009
Location: East TN
Posts: 80
Thanks: 0
Thanked 2 Times in 2 Posts
Here's another poem from: http://www.all4jake.blogspot.com/

No offense to Dutchmom about the Holland vs. Italy allegory, but I still think it's a good one, country names aside!!

WELCOME TO HOLLAND
byEmily Perl 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 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.


"When you feel like giving up, remember why you held on for so long in the first place."~ Unknown
Reply With Quote
  #12  
Old 05-09-2009, 06:25 AM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts
Absolutly no offence, Katie's mom, off cause I - and I guess most Dutch specials needs moms- do know this text by byEmily Perl Kingsley.
Did you know there are 2 follow ups? These do catch the differtent stages of emotions and acceptation we go through during the years,


Follow up, part 2

Quote :
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, I like this one in particular, because I've been to Ireland too, being a Dutch special needs mom from Holland and being mom to his twin siblings.

Quote :
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.

To fully understand this metaphor you must read "Welcome To Holland" by Emily Pearl Kingsley.

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.
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.

Last edited by Dutch mom; 05-09-2009 at 08:45 AM.
Reply With Quote
  #13  
Old 05-21-2009, 03:06 PM
Joined the Party
 
Join Date: Apr 2009
Location: Maryland.
Posts: 90
Thanks: 0
Thanked 1 Time in 1 Post

Welcome to Holland


A woman who is dear to me sent me this and I feel compelled to share. My daughter and I live in "Holland" now, and we have come to love it here, but in Heaven, my little Dutch girl will speak Italian!

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 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.
Reply With Quote
  #14  
Old 05-26-2009, 11:19 AM
katie's mom's Avatar
Joined the Party
 
Join Date: Apr 2009
Location: East TN
Posts: 80
Thanks: 0
Thanked 2 Times in 2 Posts
Such a beautiful & poignant metaphor, Dutchmom & Ann. Thanks for giving it this attention & sharing! Katie is still in Holland for now, but she still has a fighting chance for Italy - which is a gift that I never truly appreciated until our trip to Holland. Katie's experience with epilepsy has been a life-changing and faith-defining journey for us. It has helped me believe that God will always take everything that the world tries to throw at us and use it for a good that we can't always see, but will matter tremendously in the life to come. I just have to believe that there is a higher purpose for all of the pain and the biggest challenge of all is learning to believe that even when it doesn't seem possible at all.

Last edited by katie's mom; 05-26-2009 at 11:23 AM.
Reply With Quote
  #15  
Old 05-26-2009, 06:23 PM
Dutch mom's Avatar
Super Moderator / Ketogenic Smile
 
Join Date: Dec 2007
Location: Country: The Netherlands ; City: Dordrecht
Posts: 781
Thanks: 38
Thanked 363 Times in 181 Posts

I am the Child


I AM THE CHILD
(Author Unknown)

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation,
cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.

I do not give you rewards as defined by the world's standards
great strides in development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable
I give you instead opportunities.

Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
__________________
Mom to a 17-year old son with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free

Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection.
Reply With Quote
  #16  
Old 05-27-2009, 11:42 AM
Venerable Voice of CWE
 
Join Date: Jan 2008
Location: California
Posts: 2,339
Thanks: 2
Thanked 45 Times in 36 Posts

A prayer for all


I pray you enough sun to keep your attitude bright
no matter how gray the day may appear.

I pray you enough rain to appreciate the sun even more.

I pray you enough happiness to keep your spirit alive and everlasting.

I pray you enough pain so that even the smallest of joys in life may appear bigger.

I pray you enough gain to satisfy your wanting.

I pray you enough loss to appreciate all that you possess.

I pray you enough hellos to get you through the final good-bye.




Wish I could take credit for the prayer above, but I can't...it was forwarded to me by a friend. But I thought about all the dedicated parents and caregivers here and thought that it was more then appropriate to share. So this is my prayer for everyone on the site.....I pray you enough.

skilly
Reply With Quote
  #17  
Old 08-27-2010, 01:47 AM
Banned
 
Join Date: Aug 2010
Posts: 1
Thanks: 0
Thanked 0 Times in 0 Posts
I am working and helping disabled person. If I have a free time, I definitely surf on different forums in how to sustain the needs of disabled person. I think this song can enlighten the mind of every disabled person.
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Forum for parents? katie's mom The Nursery 26 03-19-2016 06:42 AM
parents concern greg The Foyer 5 04-11-2009 04:28 AM
Question about children of epileptic parents mamaruns The Kitchen 8 03-21-2008 08:08 AM
Parents of the year CQ:) The Lounge 15 02-24-2008 10:16 PM


All times are GMT -5. The time now is 11:02 AM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.