Brain Damaged Child.

Brandee - posted on 04/18/2009

Thank you... My son't OT kept bringing up the Welcome to Holland essay, but I had not had a chance to look for it yet. Honestly the second piece hits home even harder. This circlr is feeling a need I have had for so long now because of people like you, thank you.

~Jennifer - posted on 04/16/2009

....and here's one that I'm especially fond of ;)

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."

~Jennifer - posted on 04/16/2009

Quoting Karlene:

Your posting reminds me of an essay that was sent to me after my daughter was born.  It was titled, "Welcome to Holland".  I have no idea who wrote it, but it was a lovely, touching, eartfelt essay that points out the wonderful things about "going to Holland"( special-needs child) and "going to Italy" (typically developing child).  I did eventually get to Italy, and the journey has been bittersweet as he sometimes makes the differences even more apparent, but the nice thing is that he doesn't care that his sister is brain damaged, he loves her all the same.  I have no idea what the future will be like, if he will be ashamed of her when his friends make fun of her (I hope not and I know I'll probably blow a gasket when/if that happens).  I'm very sorry that the doctor was the cause of your heartache.  It is comforting to know that I am not alone, but believe me when I say that I take  no joy in knowing that their are others who are suffering similarly.  Thank you for your kind post.

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.

Hannelore - posted on 04/16/2009

Hi Karlene

My daughter has severe C.P and i created a group called Mothers and fathers of severley disabled children here on facebook. There is a Mommy that has a little boy and he was dropped to although they do not know who. If you need to relate to someone you are welcome to contact her from the group. If you need to shout and cry i am here for you and will listen.

Arlene - posted on 04/16/2009

I know what you mean about feeling isolated. Finding this network has been a Godsend as I rarely get to communicate with people who have an inkling of where I'm coming from.



My son was born with moderate cerbral palsy due to my obsetrician not delivering my son soon enough when I had prolonged high blood pressure and other worrying symptoms. Even when he did deem an emergency caeserian necessary, I had to wait a further 5 hours before my son was delivered. It took 2 years before the doctors would diagnose him, despite there being obvious signs. That was the most isolating time as I knew there was a problem and was extremely worried but friends and family didn't take this seriously (and especially my health visitor) as the doctors hadn't given a diagnosis.



Despite this hurdle, I get all my strength from my son, he fills me with amazement at what a happy, positive and determined 4 year old he is. He can't walk independently and has trouble with speech and fine motor skills, but despite this has integrated well into mainstream school and is the most independent child I know.



He has inspired me to pursue a Masters course in Biomedicine as I wish to research new treatments for brain injured children. He without a doubt the most precious thing in my life. I am pursing a medical negligence case against my son's obstetrician at the moment, I don't know if we will be successful, but it has helped get rid of some of the resentment and anger I had welled up by doing something constructive.



I wish you and your little princess all the best and hope that you are able to get through this difficult time.

Karlene - posted on 04/15/2009

Your posting reminds me of an essay that was sent to me after my daughter was born.  It was titled, "Welcome to Holland".  I have no idea who wrote it, but it was a lovely, touching, eartfelt essay that points out the wonderful things about "going to Holland"( special-needs child) and "going to Italy" (typically developing child).  I did eventually get to Italy, and the journey has been bittersweet as he sometimes makes the differences even more apparent, but the nice thing is that he doesn't care that his sister is brain damaged, he loves her all the same.  I have no idea what the future will be like, if he will be ashamed of her when his friends make fun of her (I hope not and I know I'll probably blow a gasket when/if that happens).  I'm very sorry that the doctor was the cause of your heartache.  It is comforting to know that I am not alone, but believe me when I say that I take  no joy in knowing that their are others who are suffering similarly.  Thank you for your kind post.

Karlene - posted on 04/15/2009

Your posting reminds me of an essay that was sent to me after my daughter was born.  It was titled, "Welcome to Holland".  I have no idea who wrote it, but it was a lovely, touching, eartfelt essay that points out the wonderful things about "going to Holland"( special-needs child) and "going to Italy" (typically developing child).  I did eventually get to Italy, and the journey has been bittersweet as he sometimes makes the differences even more apparent, but the nice thing is that he doesn't care that his sister is brain damaged, he loves her all the same.  I have no idea what the future will be like, if he will be ashamed of her when his friends make fun of her (I hope not and I know I'll probably blow a gasket when/if that happens).  I'm very sorry that the doctor was the cause of your heartache.  It is comforting to know that I am not alone, but believe me when I say that I take  no joy in knowing that their are others who are suffering similarly.  Thank you for your kind post.

Sarah - posted on 04/15/2009

Hi there, My deepest thoughts are with you and your family. Even though my story isnt quite like yours i can relate to how you feel. My son who is almost 2 was Born with A gentic Condition which i passed on, I knew i had it and was told that the chances of passing the defect on is 50/50 and because i wouldnt even consider my self to be affected at all if it werent not for the faulty gene in my eggs i went on and had Lucas. since being diagnosed at six weeks old he has suffered from epeliepsy starting at 3.5months old then progressing to Being Hospitilsied with Inafnitle Spasms at 6months old and shortly after that having had his right eye removed at 7months due to the growths of the condition blocking his optic nerve and causing it to hemmorage. he also has global delay, cannot say words or walk independently yet. he also head bangs has some behavioural issues and has autistic like tendencies. I can relate to the feeling you cannot get passed it. I blame myself every day knowing i was the reason why he is the way he is. I struggle to be the right Mother to him, even questioning whether or not Someone could do better than me and whether or not he should be in a better suited persons care. I Love him sooo much but i find it hard to relate to him as he is off in his own little world. the demands of being a mother to a Brain damaged Child is sooo tiering that i just run out of energy so fast. I bawl my eyes out everyday, you greve what could of been who and what your child could of become or done. I know it Hurts just Take one day at a time and try and look at the future with Hope thats all you can do.

Tracy - posted on 04/08/2009

My child was 4 months premature and was not born alive.  It took them 8 mintues to get his heart pumping, and after that is when they gave him oxygen.  Without having oxygen for so long, he was brain damaged.  He now has microcephaly, CP, MR, and is severely hard of hearing.  But despite his rough start, he amazes me everyday.  Please don't feel alone.  Everything about what you are going through is isloating, everyday I feel like I am struggling alone, but you are not.  Your daughter is working her butt off the best she can with what is available for her today, and you  are doing the same.  I very often feel like you do, shit life is just not fair sometimes, and I love my kid more than anything, but boy do I wish things were different.  Keep reaching out  to others, posting this is a great start.  Hopefully you will find those out there who can comfort you.  Good luck to you and your daughter--

~Jennifer - posted on 04/08/2009

My son's oxygen was cut off during birth and after repeatedly telling them I wanted a c-section (for 4 1/2 hours) they finally relented when I was too exhausted to push anymore and his heart rate began to fail. 

He had a stroke.  He has mild CP, seizures, is partially paralyzed(left hemi), and globally delayed.  At 4 years old, he is just starting to speak.  He didn't walk unassisted until after he was 2 years old.  He wears an AFO daily and an arm brace at night.  We are probably going to have to cast his leg to keep his foot flat.

All of this could have been avoided.

I felt much the same as you do....that it shouldn't have been this way.....that he was fine before this 'idiot doctor' was the only one on staff during the blizzard we had during my son's birth.  Somehow, I made it to the hospital, but my usual OB "couldn't get there with all the snow"

The best thing that I was told was: " You have to get past it.  You can't help your child if you're looking for someone to blame; giving your child someone to place blame on only allows them to stagnate in their injury, and you to stagnate in your own sorrow."

That really hit home for me.  I wasn't looking at the things he would be able to accomplish, but rather mourning the things he would never do.  I wanted someone to blame for what they did to him.  I wanted an apology.  I never got one - and probably never will. 

All I know now is that what happened.........happened.   My job is to make it better for him.  His job is to teach me things that I never knew, or thought that I would need to know.  He has given me a different outlook on the world.  Not a 'bad' outlook full of remorse and 'what if's' (anymore)....but one of 'let's figure out how to make this work for us'. 

He's taught me how to slow down and appreciate things that most moms would take for granted.