Tuesday, July 10, 2012

The special needs "Holland" bit....

I went google searching tonight for "special needs" inspiration.  I found a ton of autism blogs and a hilarious 50 Shades of Grey edition for special needs moms....and then the story I'd used on Ireland's blog (which of course made me cry!):
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."

and then I found this one:

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.

I'm thinking the first one has just as much meaning to me now as it did when I had Ireland (minus the saint in a mirror part).  .....and the second one brought me to tears and had meaning to me but it's not my experience either.  I'm definitely in Holland but I am thinking it's just a detour.  All of the feelings that my dreams are messed up are there though and I'm feeling an extreme loss., Connor had a speech therapy session.  This is where we must go to teach him how to eat.  ...Right now his lessons are simply one to two minutes at a time of trying to get his tongue to cup around your finger and for him to pull his tongue forward.  We were there for over an hour and we only got to try this twice.  He started to atleast pull his tongue forward but he'd get upset.  ...He's basically made his own habits of retracting his tongue and instead of sucking, he sort of does a munching/opening and closing his mouth move. Wednesday is Connor's surgery.  His lungs sound better to me though he still very much has a gunky breathing sound that I believe sounds worse just because of his cleft palate.  Most of today's session was about the realities of Connor probably moving a backwards once he has this surgery.  I, of course, worry about his jaw retraction surgery and the ear tubes but more than anything it's him going under (anasthesia/intubation).  How soon will he get off the ventilator and how much will it set him back?  ...When you're intubated as an infant for long, aspiration can naturally start happening............oh, how I hope him being nearly 2 months older will be a big difference here.  Part of me believes so much that it will but because he's been doing so great, I'm having a hard time wrapping my head around any sort of set back.  I've been extremely emotional lately and I think it's in large part because I know we're about to have another difficult time and I just really don't want to go there.  ....we talked again today about if he has the difficult time and discussions begin about NJ tubes versus NG tube then I need to speak up and basically say I want a GI (gastrointestinal) doctor to come for an opinion.  My pediatrician has said this as well.  ....Connor being at the hospital longer than planned can be beneficial in seeing specialists the same day versus a possible month waiting period if we were just to try to make an appointment.  The speech therapist and pediatrician believe Connor should move to a G tube and ultimately this is a GI doctor's decision.  ..........basically, the G tube goes directly in the stomach....literally through the stomach (no more putting tubes back in the nose, just a surgery that has a tube sticking out of his stomach)....this calls for another surgery but because Connor's feeding issues are not expected to be resolved within the next 6 months (I know, ask me why I seem down) the G tube eliminates complications from both the NJ tube and the NG tube (mainly so much x-rays involved with NJ tube, Connor getting older and pulling the tube, and really neither tube was designed to be in as long as they've been in already).  Oh, I just want him to get better.  And like the story above said....we landed in Holland.  We're not sure how long it feels more like being Tom Hanks on that Island and wondering if someone will find us and take us back where we're supposed to be.  (so ...hmm, does this mean my blog is my Wilson?)    ............anywho, we're moving along.  Connor has surgery next week.  He looks great.  He's gained weight this week and was 11 pounds and 11 ounces.  He's been fussy lately and isn't always easy to console but I'd be fussy too if I had so much going on.  Sawyer has been fussier too and I think that has alot to do with being 17 months old, missing his older brother and wanting more attention.  ...I try.  sometimes I get it right, and sometimes I don't. has felt heavy lately.  Someone not too long ago told me to try to enjoy this time.  Part of me gets irritated about the comment and another part of me just feels sad.  Of course I want to enjoy this time.  I have a 17 year old and know too well how fast that time flew by., I have two babies that I love so dearly and wanted more than anything.  Of course, I want the world for them and I want to laugh and have fun and teach and listen and everything!!!....but first, I have to see what time it is turn on or off a machine, remember to call this or that doctor, go to the one office for a weight check, make sure the meds are given in the right doses at the right time, do speech therapy exercises, take care of his jaw distraction/ears, change two sets of diapers, get an oxygen reading, put the tube back in and make sure it's in the stomach and not the lungs, clean the house (somewhat), do the dishes, feed everyone, try to sleep a bit myself, do my best to keep up basic relationships........ETC.   .........just saying, I'm in Holland and I'm still sort of in shock that my plane landed elsewhere.     ...........and in that list of stuff, which I surely forgot plenty because I have Tristan and Sawyer that I'm loving and caring for the best I can (and a husband that is probably being taken for granted), I am surely doing my best to find the enjoyment but right now, it's not easy and I'd appreciate someone just taking a moment to get a full picture of my typical day.  ....If I go outside and have 10 minutes to blow bubbles and watch Sawyer run around watering his shoes, I feel like a success.  Yes, life is crazy and hard but if anyone can enjoy "moments" is me.      ..............anywho, Holland.  Guess we're there.  or on that island with Wilson.....(and someone....remind me what the name of that movie is please.) 

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