I wanted to post these two pieces. I was sent them by a couple of very good friends when my first child was born prematurely and developed hydrocephalus and cerebral palsy.
They helped me focus on the fact that there will be aditional challenges in life when you have a child with special needs but that there is also much joy in evey achievment that child makes.
I hope that they will be helpful to others in similar situations.
WELCOME TO HOLLAND
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
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
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.
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled 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 sorrow 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 necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him 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 won't 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 any '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 and 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"
2 lovely poems, both my children are healthy and reading poems like these make me appreciate that fact, i hope my next baby is as healthy too, it does take a special kind of person to raise a disabled child, my uncle is deaf and spastic and he is turned 50 now and its like my nan still has a child on her hands, she is 72 now and at a point in life where she should be enjoying her latter years. seeing how hard things are for her now makes me appreciate my healthy children and realise just what families who have disable children go through
We are not to be felt sorry for- its odd , as a mother of a four yr old son who has multiple disabilities, it is us who know the purest most uncontitional love. I at one time before i had my son, if i were to see a family who had a child who had a disability, it is only human to feel pity and think their lives were difficult. I now see some parents with children without disabilities that are so busy they dont treasure every smile every step every word. Our son is an angel. He has made us better people. Now you see people look at you the same look of pity at times but it is those people who don't yet know that level of joy and you actually feel fortunate
I completely agree.
It's funny this popped up again today, it's been sometime since I posted this and James has since had a diagnosis of Autism and he has been found to have some problems with his eye's that he has to have surgery for.
A friend wrote us an email last week saying she was very sorry to hear about James and was glad that we had been blessed with Sam (our youngest). She mean't well but all I could think was I have been blessed with both James and Sam; James is no less a blessing to our family because of his difficulties, I feel very lucky to have James as my son.
I have a HUGE lump in my throat after reading these. SO well written. I'm glad these popped up today. When you posted this, I had no idea I was facing uncertainties and difficulties with my baby. It's not easy and I know we don't have it as bad as some, but these were refreshing. What a huge eye opener it has been for me, after having four healthy, normal children. People don't realize what it's like if they never have to experience a child who is born with troubles. I thank God every day that I have been given my special son.
these are beautiful poems, i have a 9 molnth old son who has spina bifida. he has been through so much already. he is so tough he comes through every surgery with a smile. when i found out joshua was going to have spina bifida i cried for weeks. i couldnt understand why god would do this to me, what did i do wrong? then i was told god never gives you more then you can handel he only picks special people to have childern with special needs. now that he is here i cant imagine my life without him, when it gets so hard i dont think i can do it anymore i just look at him and that beautiful smile and we get through it together. now i ask myself how did i get so lucky to be his mother.
Thank you for the post, I have been searching for the first one for years! While I have no children of my own, I am an early childhood provider (preschool teacher) and sometimes talking to others is just like that. Thanks again, Debbie :)
i am sitting next to my 8 yr old little girls hospital bed as i came across these poems. and i really wish i would have seen then earlier. you see, she was born with c.p. and hes just had her firt set of surgeries on her leg and hips. she is in a great deal of pain and very emotional. with tears running down her rosey cheeks, she asked me " mommy why wasnt i made right, why wasnt i made like everyone else. why do i have to have all this pain". It broke my heart, i didnt know what to say. i just hugged her till she fell asleep. i wish i would have seen these poems before that question, because i would have had the perfect answer.
Right now my son is facing new challenges; he started a new school and the transition hasn't been easy...for anyone. I keep reminding myself that life isn't always like this and there will be many many more beautiful moments to come in my lovely "Holland".
Let us all remember that when the disabled meet the abled, it can almost always lead to a good thing..
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