lying moms

[alohacousin]

Not sure if anyone has come across this before but it was sent a disability list serv i am subscribed to:

Subject: AS:Lying Moms



Get your box of tissues out before you read this one...sorry gentlemen..>I

am sure it applies to you all as well, I didn't write it though so I didn't

make it uni-parent...well anyhow, enjoy!





Mothers of children with disabilities worthy of praise

By Lori Borgman Knight Ridder/Tribune News Service



Expectant mothers waiting for a newborn's arrival say

they don't care what sex the baby is. They just want

it to have ten fingers and ten toes.



Mothers lie.



Every mother wants so much more. She wants a

perfectly healthy baby with a round head, rosebud

lips, button nose, beautiful eyes and satin skin. She

wants a baby so gorgeous that people will pity the

Gerber baby for being flat-out ugly.



She wants a baby that will roll over, sit up and take

those first steps right on schedule (according to the

baby development chart on page 57,column two). Every

mother wants a baby that can see, hear, run, jump and

fire neurons by the billions. She wants a kid that

can smack the ball out of the park and do toe points

that are the envy of the entire ballet class. Call it

greed if you want, but a mother wants what a mother

wants. Some mothers get babies with something more.



Maybe you're one who got a baby with a condition you

couldn't pronounce, a spine that didn't fuse, a

missing chromosome or a palette that didn't close.

The doctor's words took your breath away. It was just

like the time at recess in the fourth grade when you

didn't see the kick ball coming and it knocked the

wind right out of you.



Some of you left the hospital with a healthy bundle,

then, months, even years later, took him in for a

routine visit, or scheduled her for a well check, and

crashed head first into a brick wall as you bore the

brunt of devastating news. It didn't seem possible.

That didn't run in your family. Could this really be

happening in your lifetime?



I watch the Olympics for the sheer thrill of seeing

finely sculpted bodies. It's not a lust thing, it's a

wondrous thing. They appear as specimens without

flaw -- muscles, strength and coordination all

working in perfect harmony. Then an athlete walks

over to a tote bag, rustles through the contents and

pulls out an inhaler.



There's no such thing as a perfect body. Everybody

will bear something at some time or another. Maybe

the affliction will be apparent to curious eyes, or

maybe it will be unseen, quietly treated with trips

to the doctor, therapy or surgery. Mothers of

children with disabilities live the limitations with

them.



Frankly, I don't know how you do it. Sometimes you

mothers scare me. How you lift that kid in and out of

the wheelchair twenty times a day. How you monitor

tests, track medications, and serve as the gatekeeper

to a hundred specialists yammering in your ear.



I wonder how you endure the clichés and the

platitudes, the well-intentioned souls explaining how

God is at work when you've occasionally questioned if

God is on strike. I even wonder how you endure

schmaltzy columns like this one -- saluting you,

painting you as hero and saint, when you know you're

ordinary. You snap, you bark, you bite. You didn't

volunteer for this, you didn't jump up and down in

the motherhood line yelling, "Choose me, God. Choose

me! I've got what it takes."



You're a woman who doesn't have time to step back and

put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.



You've developed the strength of a draft horse while

holding onto the delicacy of a daffodil. You have a

heart that melts like chocolate in a glove box in

July, counter-balanced against the stubbornness of an

Ozark mule.



You are the mother, advocate and protector of a child

with a disability. You're a neighbour, a friend, a

woman I pass at church and my sister-in-law. You're a

wonder.

 

[Piglet]

Thanks - I really needed that today!!!! I think I'm going to share it with some friends.

Melinda

 

[BarbJ34]

Thank you, thank you for that. It was beautiful!

 

[SueM in MN]

I have never seen that before.
It was wonderful. Thanks for sharing.

 

[mamajoan]

Very well said! Thanks for sharing!

 

[coachYO & my 3 girls]

Thanks, that was very nice, I'm gonna share it also.
YO

 

[don8life]

Very Nice!
This is one of my favorites:
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.

Irene, mom of three, the youngest with a liver transplant at 10 months old

 

[mommie2angels]

Renae, thanks so much for posting that. I have never read that before.

Irene, I also like Welcome to Holland. Have you read this one?

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. Inthose 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!

 

[don8life]

Ok, now I'm crying. That is beautiful. Thanks for posting it. It is sooo true. I do feel blessed and certainly found a whole new set of priorities, like enjoying every little thing that I took for granted before.
Thanks Again!
Irene

 

[sushilover]

This is written from a father's perspective.


Once a Mighty Ship
by Rodney Rowen

Looking back at the birth of my son, I think that I envisioned a mighty sailing ship being launched into the sea of life. My son would proudly command this sleek, beautiful vessel, forged of my own hopes and dreams; deftly trimming the huge white sails that would catch the winds of opportunity. We would journey together for a time while I showed him places he could go and help him when the need arose. Eventually, I would leave the ship and let him sail alone.
Two years after my son was born, my wife and I noticed that he was not doing things that most kids his age were doing. The doctors started running tests, and he began physical, occupational and speech therapies. At first, I wanted to believe that they were all wrong since I could still see my son on his mighty ship. Later, I realized the doctors were right, and there was something wrong.
A storm of emotions raged within me, engulfing my son's ship. Rain pounded it from the terrible sadness I felt. Thunder clapped in anger about having an abnormal child. Fierce winds of grief drove my son's mighty ship, crushing it upon the rocks. Worst of all, I "lost" the son I both wanted and expected.
Over time, the storm lessened, and the clouds cleared. I saw the ship had survived, but now it had been transformed from a sleek, racing machine that easily sliced through the water to a barge laboriously slogging through tough currents. The once mighty sails had been replaced with small tattered ones, and the hull gaped with large holes. I marveled that the ship could even float.
My son still proudly stands at the helm, unaware anything is wrong. I wonder if he will ever understand that his ship doesn't look like the others. As I look at the ship now, I see many other people at work. Some are patching the massive holes which everyone knows can never be fully repaired. Other people are just painting small spots or offering encouragement whenever they can. Still others think all this work is excessive. We constantly battle government agencies, insurance companies, and schools to make sure our son gets what he needs and deserves. My wife and I find ourselves acting as supervisors trying to make sure everyone is doing what is best for him. People suggest we try "this" and "that," but there is only so much time and money. We constantly judge which things help, which do not, and if it is time to try another "something new." It is difficult, because everything seems to help a little, but nothing helps a lot. Hope comes and goes, as do feelings of guilt for not doing more.
I realize that my job as guide and teacher is going to be much more difficult. Over and over, I teach him to do things that other kids pick up naturally. I feel such despair when I see other children half his age doing things that I only hope he will do some day. But, there IS hope, since improvement does happen, however slowly. I still have the same pride that all parents feel when their child finally accomplishes a task which they haven't been able to do before.
Lately, I have begun to wonder what the future will hold for my son, and there are many questions. Will he live independently? Will he have a job? Will he have any friends? It becomes clear that I may never be able to let my son sail his ship alone. In horror, I realize I may even die before my son completes his journey, and then I start to worry about the special wills and trusts which need to be created. I am haunted wondering who will take care of my son when I am unable. I find it difficult to even ask others to do this job let alone imagining anyone accepting it. Sometimes it seems so overwhelming, all these extra things I need to do.
Then I look at my son, and I see a little boy who seems so happy and content. He does not understand that he is different, and for that I believe he is lucky. I think I am lucky, too, since he is teaching me some important lessons. I believe all children are born with a kind of innocence that is quickly shattered as they grow and learn about "life." The life my son faces becomes a kind of blessing, since he will radiate that child-like innocence for a much longer period of time. In many ways, I also believe he exemplifies how everyone in the world should act. When he is happy, he smiles or laughs; when he is sad, he cries. He does not understand the societal rules which mask so many of our thoughts and feelings, nor does he exhibit any trace of the greed, dishonesty, racism, or bitterness so prevalent in today's world.
My son also gives to the world without expecting anything in return. While walking with him in the shopping mall, I have watched him look at people, make eye contact, and cheerfully say "Hi." Invariably, the person smiles back, and he has, for the moment at least, given them a small gift of kindness. He has also helped me question what is important in life. Is it really important what school a person attends, what job they have or how much money they make? I am beginning to realize that the most important things in life have more to do with just enjoying life.
Having a child with special needs is a strange gift. It is not one I would ever wish on anyone, but would never give up having received it. Taken individually, the additional challenges seem small, but the collective whole seems immense at times. The storms of rage and emotion still blow through, but now I wait to see where we will end up, knowing that my son's ship will indeed survive, and that we will journey to some unanticipated but exciting ports.


This is what I found on the author when I first discovered this some years ago.
Rodney lives with his wife, Pat, 5 year old son, Geoff, and his 1 year old daughter, Katie, in Redmond, Washington. Both Geoff and Katie have chromosomal translocations. In his spare time, Rodney plays volleyball, basketball, and enjoys doing woodworking.

 

[mbb]

Can these be pinned to the top???

I'm always giving the photocopies on my fridge to
"New Arrivals at the Amsterdam Airport"

Thanks everyone...I needed to see these again tonight

 

[coachYO & my 3 girls]

May all our ships reach smooth water.

 

[3DisneyNUTS]

Ok I hated the Holland poem when I received it. I was like how does this help? I was angry at every last person who was around OMG the rage I had was insane. I still read "Welcome to Holland" and hate it LOL. Not the poem itself but the memories it brings up from when it was given to me while my son was in the NICU. Reading all these just now were amazing. I am shocked I have not read any of them but the holland one. Thanks so much for this thread. It is amazing

 

[Mike Bartenhagen]

Welcome to Our Home
By Al Freedman, Ph.D.


Dear Home Care Professional,
Welcome to our home.

Since you are new to the team of professionals who care for our son, I’d like to share some background with you as a way to begin our journey together.

Six years ago when my wife, Anne, and I decided to become parents, we didn’t plan to meet you. Back then, we didn’t know anything about pulse oximeters, wheelchairs, bi-pap (two-way positive airway pressure) machines, feeding tubes, nebulizers, or standing frames. We didn’t plan for the parade of nurses, social workers, occupational and physical therapists, assistive technology specialists, medical supply personnel, teachers and case managers who come and go. We didn’t anticipate the need for five different doctors to monitor our son’s progress at the local children’s hospital. And we didn’t plan for our child to spend fifty-six nights in the Intensive Care Unit before he reached his third birthday.

Most of all, when we decided to become parents, we didn’t anticipate that very bad day when a doctor told us our six-month-old baby had a year to live.

So I hope you don’t take it personally when I say I have mixed feelings about your presence in our lives. Frankly, I wish we didn’t need you. I wish our son were going to kindergarten with all the other kids his age, scraping his knees, running around outdoors without his coat on, and spilling Elmer’s Glue on his lap. I wish I were spending my weekends watching my son play soccer.

But Jack isn’t going to kindergarten, and he isn’t playing soccer. He can’t sit up, walk, or talk very clearly. He can’t move his arms or legs. He can’t dress or feed himself. He still uses diapers. He can’t eat solid foods. He needs constant supervision and attention. He’s medically fragile. His care is physically and emotionally demanding.

I wish we didn’t need you, but we do need you.

We need your positive attitude and your confidence. We need your sensitivity and patience. We need your knowledge, experience, and skills. And we need you to help us have hope, for our son and our family.



--------------------------------------------------------------------------------

When you begin your work with our son, please carry yourself with confidence. You’ve been trained to take care of medically fragile children and we haven’t. Jack’s care requires remembering little things about his needs: what’s safe to feed him, how to lift him into his wheelchair, when to remove his secretions, how to set up Jack’s arm supports so he can use his computer, which way to turn his head when he lays on his stomach, how often to give him a syringe of formula through his feeding tube.

Although none of this is rocket science, the sheer number of details can feel overwhelming to a newcomer. But if you feel overwhelmed, try not to show it. Act confident. Take initiative. Have a positive attitude. Watch us as we demonstrate how Jack’s equipment works. Ask us questions. Write things down if it helps you. Enjoy yourself when you’re working. But above all, carry yourself with confidence. Jack will feel safe if you feel safe.



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When you begin your work with our son, please be patient with us. We may insist about certain aspects of Jack’s care that don’t make perfect sense to you. It may be awhile before we leave you alone with our son even though you’re perfectly capable of taking care of him. You may wonder why we ask you about your own health every time you sneeze or cough in our house. We realize we worry about Jack just about all the time. Please understand that we simply can’t help it. From the moment the doctor sat us down and told us our baby had an incurable, untreatable disease, things were never quite the same again. We really are doing the best we can.



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When you begin your work with our son, please be sensitive to our family’s need for privacy one minute and our need for your active involvement the next minute. (As a wise home care administrator I know tells each of her new clients, “The good news is…you’ll now be getting nursing help in your home. The bad news is….you’ll now be getting nursing help in your home.”). It’s a skill to know when to be involved and when to act invisible. Do your best to fade into the woodwork when Anne or I need to parent our son. But get right in there with Jack’s physical therapist if she needs your help. Pretend you’re not in the room when I answer the phone and it’s a client emergency. But offer to pick up the phone if it’s ringing and Anne has her hands full with our baby. If you’re not sure which approach to take in a given situation, feel free to ask.

We’ll try to be sensitive to the needs of your family, too. Let us know if you need flexibility with your work schedule because your mother is visiting from out of town or you’d like to attend your daughter’s school play. It feels good to us to help someone else’s family once in a while. We’ll help you out whenever we can.



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When you begin your work with our son, please take the time to get to know him as a person. Yes, you’re here because of all the things Jack can’t do by himself. But there’s a lot he can do, too. You’ll be surprised the first time you see Jack drive around independently in his power wheelchair. Try to keep up with Jack as he clicks his way through a tricky challenge on the computer. Feel free to join him in the swimming pool while he works hard in the water with his therapist. Listen to him tell jokes using his communication device. Enjoy Jack enjoying the company of his baby sister. Soak up his positive attitude, determination, and his smile. We think he’s quite a kid. We hope you will, too. And when you show a genuine interest in Jack, he will fall in love with you very quickly.



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When you begin your work with our son, please teach us what you know about caring for him. After Jack’s diagnosis, one of the first things we heard from medical professionals was, “You will soon be the experts on Spinal Muscular Atrophy (SMA) and caring for Jack.” But I didn’t want to believe our baby had such a terrible disease, much less become an expert on it. And more importantly, if Jack really did have SMA and would die because he couldn’t breathe, how in the world could we become experts on how to help him? After all, isn’t that what doctors and nurses are for?

Gradually, we did become experts on SMA because Jack is our son and we had to do whatever we could to help him. But for more than five years now, I feel relieved every time we meet a professional who knows more about caring for a medically-fragile child than we know, or at the very least can teach us something new. As you begin working with our son, tell us what you know, tell us what you’ve learned, tell us what you’ve seen. We take care of only one medically fragile child. You’ve taken care of many more than one. You can provide us with some perspective. You can give us a reality check when we need one. You can help us take care of Jack when he’s sick. We need your expertise. That’s why you’re here. Please don’t hold back.



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Finally, and perhaps most importantly, when you begin your work with our son, please help us to have hope.

When we first learned Jack was affected by Spinal Muscular Atrophy, hope was a scarce commodity in our home. We didn’t hear much from the doctors about living with Jack from day to day – they didn’t tell us about the good days we would have together as a family. Looking back, I now realize it was Jack’s job to teach us these important lessons. After all, doctors at children’s hospitals don’t spend a lot of time with kids when they are well. Parents do that.

Our son is intelligent and sensitive; he observes all of our words, actions, and signals. Jack needs us to view his disability and his future with a sense of hope, whether life feels manageable at the time or not. Three years ago, when Jack’s bout with RSV led to intubation and a three-week hospitalization, it was very hard for me to be positive and hopeful. But as I looked at my son lying in the intensive care unit, kept alive by a ventilator, his eyes wide open wondering what was happening to him, I believed it was important for Jack to see me smiling and to hear me telling stories as usual, giving him the message that I was hopeful and confident of his ability to recover from his illness.

Somehow, Jack did bounce back from that harrowing illness. And ten days later, after he had been successfully extubated and we were preparing to go home, the head physician in the Intensive Care Unit came by to wish us well. He talked about Jack’s remarkable recovery, and he was obviously pleased to be a part of it. But the doctor’s focus was not on the treatment plan, the efforts of the hospital staff, or his own good work. He attributed Jack’s recovery to the patient himself.

“Jack’s a fighter,” the doctor told us, quite matter-of-factly.

Indeed, Jack is a fighter. All of the children you care for are fighters. But our children can not fight without hope, and it is up to us – parents and professionals together-- to keep hope alive.

We appreciate everything you do.

Welcome to our home.

Sincerely,
The Freedmans

 

[Mike Bartenhagen]

The Ten Commandments for Parents of Handicapped Children

1. Take one day at a time, and take that day positively. You don't have
control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him,
expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share
with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and
learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other
children. Remind them that this child does not get more of your love just
because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your
child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day.
Allow yourself jealousy, anger, pity, frustration, and depression in small
amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done.
Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained
a special appreciation for the little miracles in life that others take for
granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you
from cracking up from stress

 

[Mike Bartenhagen]

From one of the groups that I am in:

Hi everyone - it is Sunday morning and something strange and
wonderful happened this morning and I want to share it with you
before the feeling fades from my memory. Last night Evan was up
late -
he is feeling so much better after his bad cold - he was in the best
of the best moods and my husband and I decided to stay up with him
instead of putting him to bed at his usual time so we could all enjoy
his good mood and get some play time in! It's been awhile since he
has been this happy and playful and responsive!!!! So anyway, I fell
asleep on the couch sometime after 1am - and I woke with a start at
9:30 am this morning! Oh my God! Evan's meds and first feeding are
suppose to be done at 7am and here I had missed it and I was
freaking! I ran out to the kitchen (which isn't easy when you have
arthritis in your feet and ankles!) and here I found the dirty
syringes and med cups and bottle telling me my husband had done
Evan's meds and feeding. So I went upstairs to check on both my boys
(my husband and my son!) and here they were both tucked in our bed
sleeping soundly. What a picture! Anyway, I sat down at the foot of
the bed and just watched Evan sleep. I haven't done that for awhile
because he doesn't sleep much and when he does I try to too. And the
most amazing feelings came from out of nowhere. I noticed how
perfectly shaped his head looks - no one would know that a good deal
of his brain is not there and what is there has never and will never
grow. I noticed how perfect his little pink mouth looked even though
he can't and probably never will talk. I knew that under those little
closed eyelids were the most beautiful blue eyes I have ever seen
even though they don't work like they are suppose to and no one seems
to know why. I looked at his hands and even though I know he doesn't
have the greatest dexterity, his hands are beautiful and perfect and
so tiny compared to his dads. I looked at his little body and,
watching him sleep so peacefully, you would never know that it just
doesn't hold him up like it should and his little chunky legs and
feet will probably never carry him around the playground, but you
would never know it by looking at them because they look strong and
healthy and perfect. And then I looked at his sweet, angelic face
again and instead of crying like I usually do, quietly and by myself
so no one will see, I felt very at peace that this beautiful child is
mine. I wondered how I could love him so unconditionally when he has
driven me nearly over the edge more than once and even through the
struggles and battles and grief - I would still give my life for this
precious child if I had to. And in that moment I felt a peace come
over me like I haven't really felt before - like all of the "what
if's" and "if only's" and "I wonder's" and "why's" flew right out the
window. This IS what is suppose to be for me and nothing else - it is
difficult and trying and tiring and HARD!!! But it is also wonderful
and lovely and peaceful and serene at times too. Now, I am not sure
why I am feeling these feelings today - maybe because I am so
relieved that Evan is feeling better or maybe I am still half
sleeping or maybe I am getting my period. But it doesn't really
matter. I am so in love with that child sleeping upstairs it makes my
chest ache - and I thank God for giving him to me and not to someone
else. I hope you all don't think I have gone off the deep end!!! I
just really wanted to share these feelings with someone, and if
anyone would understand - I know it will be you all. Thanks for
listening. Love, Angie

 

[Mike Bartenhagen]

A 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 a special needs
child.
Did you ever wonder how mothers of these 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 special
needs
child."

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

"Exactly," smiles God, "Could I give a special 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 not
consider a
"step"
ordinary. When her child says 'Momma' for the first time, she will be
present at
a miracle, and will know it! When she describes a tree or a sunset to
her
blind
child, she will see it as few people ever see my creations."

"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."

 

[Mike Bartenhagen]

Becoming a special needs parent changes everything

When you learn that your child has a complex medical condition or
special needs, your world is turned upside down.

The hopes and dreams and normal expectations you have on parenthood
now shift to a very different reality.

You are as different from other people as your child is.

You realize that sometimes things just do not happen as you
planned.

Instead of deciding what comforters would go with your decorated
theme at the "Baby Store"
Your decisions are now how to fit in medical equipment like oxygen
tanks, and machines next to they stuffed animals you received at the
baby shower.

Your baby's drawers not only have cute colored socks and T-shirts.
They also have non latex powder free gloves, syringes and other
medical supplies.

The Lullaby Tapes you play for your baby in hopes of creating a
soft serene environment for your child are now drowned out by the
alarms and beeps of the equipment that monitors your child's vital
signs.

Well baby check ups will not be at set intervals of stages in your
babies growth.
You will see your child's doctor more often than some of your
family members and the pharmacist at the local drugstore will know
you by name.

You no longer have the choice of screening potential baby sitters,
to make sure that your child care is to your comfort level.
You sometimes have to accept whoever the home health agency can send
your way, although licensed in nursing and capable as they are, you
just no longer have the choice anymore.

Instead of sleepless nights for the first year until your child
outgrows the bottle.
You start to forget the meaning of the word sleep and your coffee
pot is constantly on.

Life as a special needs parent is different from most people, but
there are differences that other people will never know.

You are witnessing a miracle each day...

When you see your child's little legs trembling as he tries to
stand, with all his strength however little it is because he feels
the floor under his feet.

When you look down at him you see he has this huge proud grin on his
face like he is conquering the world, He is isn't he?

When they tell you that your child will never do much or amount to
anything, yet you feel your baby hug you for the first time. Or
after hundreds of times that you press your face against his lips
you hear him smooch you a kiss.

When your child reaches out and pets your dog, or smiles when he is
kissed by his sister or laughs at the most ridiculous things, but he
laughs.

Like the joy of seeing your child take steps to walk for the first
time when for years you thought this was not in your child's future.

You start to realize that all the sacrifices you have made, the
sleepless nights, the mom or dad hours you put in learning therapy,
and skills of nurses.

The roles you have played as advocate, nurturer, protector,
chauffeur and parent really pay off when you see the your child's
face light up just at hearing your voice or resting in your arms.

That light in his eyes telling you that your child's knows with out
a doubt that he is loved.

You appreciate the little things and remember...that today is the
only day that you are guaranteed and the present moment is all that
matters.

Brigitte Cadena-Ramirez

 

[SueM in MN]

Thanks for all the inspirational stories. Good to read things like that now and then.