I had signed on and committed to writing in my blog
for 31 days straight from July 1-July 31.
I seemed to have forgotten July 2nd & 3rd. Perhaps I am in a time warp and didn’t really
experience those two days or I had nothing great to write about.
Awakened by my dog way too early this morning, I was
on Facebook catching up on all my fellow Angel Parents posts. I came across this link that if I wasn't sitting next to my sleeping angel, I would have leaped off my bed with joy and
gratitude.
This is a must read to get a better picture of what
it is like to be a parent of a special needs child. My friend and fellow Angel Mom; Debbie Rankin
Aimers had posted it.
It was such a release of emotions for me when I saw
this and other parents believe and feel as I do about the “welcome to Holland”
poem. Honestly, I hate that explanation
of when you are told your child has special needs/disabilities.
Welcome
to Holland"
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. - Emily Pearl Kingsley
The first time I was told some version of this poem
was in April of 2003 at my son, Scotty’s one year old well visit. We just had spent 10 months of tests, blood
work, and many specialists later to put a reason, a name on what was causing my
son to not meet his milestones. The pediatrician
told me this lame story about Holland and Italy and that my son has Cerebral
Palsy (which we know was wrong. Fast Forward to 2009 he has Angelman
Syndrome). The doc tried to tell me that
loving this child will not be easy. That Scotty will never do what his older
brothers can do. He will never be able
to run and play with his brothers. He
may never walk. Most likely Scotty will
never eat on his own and we really have to think about a feeding tube. Not one word was positive.
I snapped back at the doctor mid-sentence and
said: “what’s with that Holland place?
If you are worried that I don’t love my son, you are ridiculous. I already love this boy. Do I not love my other children when they don’t
act “normal”?” I just thought this man’s
attempt to break the news easy to me was absurd, crude, and just distasteful.
Normally, I don’t care what people think about me or
my opinions. However, for years I feared
to let any other parent of a child with special needs know that I hate the
Holland story. It seemed whatever
website, book, or Facebook page I went to; had this stupid Welcome to Holland
analogy.
Let me try to describe what it is like to have a
child with Angelman Syndrome.
I never let my shoulders down and relax. I am always on the lookout for what is coming
next. I am in constant fight and crisis
mode.
Here is a Facebook conversation Debbie and I had
just a few moments ago after I saw her post the above link:
Me: oh my
GOD...thank you for this. I honestly have been afraid to say I actually hate
this Holland shit...I was offended when Scotty’s doctor told me this story at his 1 year well visit and then told me he had CP ....I can go on about how much
I dislike this 'explanation'...I just might write in my blog about it lol..Now
that I know others feel the same way...thank you again...
Debbie: I
agree Rita. It feels like surviving a plane crash.
Me: yeah...a
plane crash that seems to just keep happening...you feel safe one moment. Then
BAM something else explodes....
Debbie: Yes
there is really no moment when you can safely exhale and say "It's all
over and my child will be fine." Or "So happy my kid was born without
that chromosome after all"
Me: so true...I don't think I have exhaled since he
was born...constant state of “what's next?"
Debbie: However,
I know what true love is!
Me: YES.
Nobody loves me like Scotty loves me...I finally know what true unconditional
love is
Debbie: It is so pure
And this Ladies and
Gents explains what it is like to be Scotty’s Mom.
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