Holland Isn’t So Bad After All

Tonight I attended my first support group meeting for parents of children with disabilities.

Tonight, I found out what it means to land in Holland.

About 22 years ago, a mother and writer named Emily Perl Kinglsey wrote a little blurb about what it felt like to raise a child with special needs.  She titled it, 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.

For us, I feel as though we have a vacation villa in Italy, a place we visit once in a while, but that Holland is our home, our comfort, our base.  Tonight, I attended a local support group and I met a Mom with three children, twin boys and another son, all with a host of disabilities.  She talked about how small her world got as her children’s issues progressed.  Friends stopped calling.  She retreated and withdrew.  She and her husband began drifting apart.  She mourned the loss of the dream she once had of “normal” kids.  I realized that even though our kids’ needs were as close as chalk and cheese, our struggles were strikingly similar.

We both had detailed itineraries for Italy, and we both firmly landed in Holland.

We have this romantic notion of what you expect from being a parent, of what your kids will accomplish and your expectations that you and society set for your children.  When you’re faced with anything which comes between you and your vision of “normal” children, it’s as if something dies.  My therapist told me recently that I’m in the mourning period often experienced by those who lose a loved one and parents of children with special needs.  That it is necessary to feel the pain and anger of the loss before it’s possible to move on to acceptance and, in our case, effective advocacy.  When I tell people that, they look at me with a scrunched up, confused face.

Now, all I have to say is I was diverted.  Originally, we’d packed and planned for a trip to Italy, but we ended up in Holland instead.  And, now that we’ve been here a while, sure, there’s a bit of a language barrier and some navigation issues, but overall?  Holland isn’t so bad.  And, I think we’ll be sticking around as long as the good people will have us.

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March 12, 2009 at 8:33 pm 2 comments

This Just In: CT Lawmakers May Remove their Heads from their Asses

From the fabulous folks of Autism Votes (the legislative advocacy arm of Autism Speaks):

Autism insurance reform is moving forward in Connecticut. Committee Bill Number 301, An Act Concerning Health Insurance Coverage for Autism Spectrum Disorders, requires health insurers to cover medically necessary treatments prescribed by a licensed physician or licensed psychologist.  If passed, this groundbreaking legislation would provide access to treatment to thousands of families dealing with the challenges of autism all across the state of Connecticut.

The future of SB 301 will be determined on Tuesday when the Insurance and Real Estate Committee votes.

To put this bill in perspective, if we paid out of pocket for the treatment of our twins, our medical bills would run in the neighborhood of $5000 per month.  That’s approximately $60,000 a year.  If the committee votes to pass this bill, it then will allow for a vote from the full Senate, and, if passed there, from the full house as well.

If you happen to live in Connecticut, I implore you to contact your local legislator and urge them to help pass SB 301.  Better yet, attend the vote tomorrow at noon, which is taking place at the Legislative Office Building, Room 2b.  Bring photos of your children, wear red, and make it known that this bill is long overdue to help thousands of children across the state (and, perhaps the country if Connecticut sets such a precedent) get the assistance they deserve and require.

March 9, 2009 at 5:34 pm 1 comment

No, I’m Not Amish…Not That There’s Anything Wrong With That

My inaugural video blog post.  Be kind.  Oh, and my hat?  No, it’s not some Amish bonnet. It’s a touque because I couldn’t find a baseball hat and my hair was a mess. Also? DEAL WITH IT.

March 3, 2009 at 2:01 pm 7 comments

Kreativ Blogger

Thanks to the ultimate in time-suckage applications, otherwise known as Facebook, I recently reconnected with my high school friend, Carrie, who, in addition to being a Momma of adorable twins, was inspired by my unfettered need to share with the world the hum-drum minutae of my life and started her own blog to share her experiences as a Mom.  Since being flashy about your love for the literary or  prowess for writing never got you very far in high school, I had no idea she was such a talented writer and I encourage you to stroll on over and check out what she’s got to say.

Carrie awarded me the Kreativ Blogger award, which I very humbly accept since I find it hard to imagine anyone might think that the puttering around here I do could be considered creative, let alone with a big, captial K or minus a silent e.  Check out the fancy schmancy plaque:


The rules governing acceptance of this coveted award are two fold. First, I must list for you, seven things I love. In no particular (aside from numeric) order…

  1. My family, which includes my husband, my children, my sister and my parents.  For without them, I am left with no one to clean up after and no place to visit on the weekends.
  2. My friends, who I maintain are family born under another tree.
  3. Dark chocolate bars with almonds and raisins.
  4. Cooking from scratch.
  5. Entertaining guests in my home and ensuring they feel warm and welcome.
  6. My new found ability to stand up for myself.
  7. Seeing a piece I wrote appear in print.

There’s another caveat which states I need to pass this along to seven other blogs, but that sounds so chain-mail-meme-ish and isn’t really my style.  So, instead, I’ll give you a smattering of the blogs I read on a regular basis, and if those ladies choose to accept this award as I did, then WOOO HOOO!  Ready?

  1. Crooked Pigtails
  2. Mimiboo
  3. Angry Chicken
  4. Amalah
  5. Uppercase Woman
  6. HerBadMother
  7. Thursday Night Smackdown

March 2, 2009 at 11:52 am 1 comment

27 Minutes

The following was a piece I submitted for publication in an anthology which, I just found out, did not get chosen for the book.  So, instead, I thought I’d share with the class.

Tuesday, July 19th 2005 began as a carbon copy of the previous eight months of pregnancy. The scene featured me, sporting a whale-like physique, sprawled on the couch, resting from the exhausting ten yard trek to the sofa from my bed. Despite carrying two babies, and the normal exhaustion associated with general gestating, I’d experienced few hurdles while growing my twins, a stark contrast to the months leading up to discovering my scenic route onto the road to Motherhood.

After several months of disappointing, negative pregnancy tests, I sought advice from my OB/GYN to investigate the possible causes of those saddening single lines. Off to the lab I trotted for a battery of tests which ultimately revealed what I feared most; I suffered from primary infertility due to Polycystic Ovarian Syndrome. I lacked any preparation for the sudden possibility of never bearing children.

My doctor designed a course of treatment beginning with oral fertility medications which proved fruitless. Next, he suggested I move to injectible medications in preparation for an Intrauterine Insemination. It all seemed so drastic, but my husband and I wanted a family, badly, and felt compelled to exhaust all our options which presented the best chance for a pregnancy before we entertained any alternatives. After one failed cycle and one miscarriage, something finally took. My first ultrasound verified a multiple pregnancy and a few months in, our perinatologist confirmed I was carrying twins, a boy and a girl.

I called my husband that Tuesday morning immediately following a strange pop I felt from within my oven full of buns. Not a minute after our disconnection, when I stood up to fetch myself breakfast, came the gush. My son’s water broke. This was not a drill, I repeated to myself between fearful and excited shrills. Game on. I glanced at the clock on my way out the door, to the hospital. 11 Am. Duly noted.

We arrived at the hospital to fanfare, as my doctor’s office phoned in my ETA and status as expectant Mom of twins. Throw in the four weeks of prematurity, and you’ve got full-on welcome wagon. The loveliest of nurses checked us into the last room at the inn and got me settled in with a gown, monitors, IV and, most importantly, the TV remote. The next time I saw the clock, it read 12 noon.

I experimented with my tolerance for pain, holding out for hours through contraction after controlled-breathing contraction before caving and asking for the epidural. 4pm. Soon after my request, the anesthesiologist delivered news about my low platelet count possibly hindering my ability to receive anything other than a spinal block. She re-tested my blood. Relief came in the form of a rather large needle to my back. 6pm. Not long now.

8pm, check under the hood from the doctor. Coming along slowly, he said, should start some Pitocin.

Off to the OR for delivery. 11pm. Not a drill, repeat, NOT A DRILL.

Time lost, temporarily, despite 57 clocks donning walls around operating suite.

I counted seventy five people, give or take 20, milling around me just before delivery. They rolled me to the operating room as a standard precaution during a vaginal delivery of twins. Just in case something went awry, I’d be prepped for an emergency c-section, but my doctor would give me a crack at some pushing first, just for fun.

Ow, ow, OWWWWWWWWW…Push, push, PUUUUUUUUUUUUUUUSH. 12:26am. My son, Max, all 6 lbs 9 oz of him burst into the world with that melodic first spin of the lungs that’s music to any new Momma’s ears. Nurses and a thousand other staff packed into another room wiping Max, weighing him, taking measurements and soon he emerged in the arms of a masked nurse, wrapped as the most adorable newborn burrito I’d ever seen.

Soon after Max’s birth, I sensed something amiss. My doctor milled about my nether regions with immediacy and concern. Other staff mumbled phrases like, “breech” and “need to turn her” and “stuck”. According to an ultrasound taken just following Max’s delivery, our daughter lay across my uterus, crammed up near my ribs, giving every indication she’d like to stay a few more days.

Before I could protest, my doctor began the excruciatingly painful process of trying to manipulate our little girl in position for delivery. While trying to change her position, my doctor inadvertently broke her water. She now began to descend rear-end first, a presentation not conducive to a normal delivery. Suddenly, the prospect of having a traditional and c-section delivery became very real.

My sojourner of a doctor announced, “I’m going in”. I had no idea what that meant, so I asked my husband who remained at my side throughout the whole ordeal. He explained the doctor planned to reach in, grab our baby’s feet and pull her out, with me completing the extraction by pushing out her head. No time to think and the procedure began in earnest.

The anesthesiologist jacked up my pain medication which, to my surprise, had worn off just before I delivered Max. The entire operating suite, which seemed to include half the labor and delivery staff, stood silent and still, awaiting my high sign that I was numb enough to endure this radical yet necessary route. Finally, I felt ready.

Inside of just a few moments, a nurse yelled for me to push. I tried combating the sensation-less effects of the epidural, as she coached me along.

Without much warning, a gurgle, then a cough, then a cry from the littlest person in the room. At 12:53am, our daughter, Sara, at 5lbs 4oz joined her brother as the second and final addition to our little family, 27 minutes after her brother’s arrival.

It seems ages since that evening we welcomed our twins, and I’ve spent much of that time wondering what the next day will bring. Despite the overwhelming uncertainty that is the future, the dreams I carry in my heart for my kids won’t ever change. I want for my children to find happiness, independence, culture, information and answers to questions. I hope they never experience loneliness or hardship. I’ll remind them that, like the roadmap that took me to them, life most often gives you the scenic route to your destination, so be prepared. Most of all, I wish they find no greater distance between each other than those first 27 minutes.

February 27, 2009 at 6:00 pm 3 comments

The Day We Both Learned to Smile

DSC02785

I will always look at this picture and smile through happy tears.

Today, I brought out the camera to snap a few photos of Sara wearing an outfit handed down to us by my sister, a favorite ensemble of my neice when she was just about the same age as my daughter.

Normally, when I take Sara’s picture, she’s all over the place.  She has always had a tough time making eye contact and concentrating long enough to get a good photograph.  I’m not sure if that’s her sensory issues coming to the surface or just her being a great big three-year-old, but it’s been tough for her.  As you can see from the above evidence, that’s all changed.  I’m almost ready to call John Casablancas, she’s so photogenic all of a sudden.

More importantly, I’ve seen a great shift and marked change in Sara; Where she once failed to engage, she now is a jibbering conversationalist.  She randomly walks over to me and others to say, “I wuv you.”  Yesterday, during an afternoon playdate here at home, I overheard her yelling down the hallway to her friend, “C’MON!  HURRY UP!  FOLLOW MEEEEEEEEEEEE!”  Everytime the phone rings, she wants to chat to whomever is calling.  Most notably, when I ask her a question, I no longer receive just a blank stare but instead, she retorts with some cute response almost immediately.  This is what we’ve been waiting for.  This is what we’ve been missing.

The part that makes me smile the most?  That there’s more still to come.

February 17, 2009 at 11:37 am 2 comments

Living For the Only Thing I Know

From the first time I caught his gaze in a photo, I knew.

Our first date came on a Friday.  I couldn’t concentrate on work that entire day.  We’d been getting to know each other after meeting at my condo one night a few weeks before and I was all stupid tingly, but in a new-best-guy-friendish sort of way.  Not to mention, I was seeing someone else at the time, a guy named Ian, and had been dumped by someone I seriously envisioned having a future with just a few months before, so clearly, I was NOT in a girlfriend material state of mind.

He picked me up and from the first few minutes, we laughed.  It set the tone for the entire evening.  He chose the restaurant, a local microbrewery, and we sat at a table near the front door.  It was October, and our waitress sported a slut-tastic devil costume in celebration of Halloween, which was just days away.  Although I don’t remember what I ordered, he chose the pork chops.  Odd choice, I remember thinking.  Different.  It was the special of the evening, and he never questioned the price, which was, I haven’t a clue why but, refreshing.

By the time Satanista returned with our food, the conversation was well on its way.  We’d begun singling out other couples besides us on their first dates, and we mocked them endlessly.  Dinner seemed to float by.  One meal and a few glasses of wine later, confident in my go-to date outfit (a french blue button down, black jacket and my best jeans topped off with adorable black boots), we walked across a few Hartford streets to the arena to see a hockey game.  Being that I’d involuntarily been exposed to hockey by an ex-boyfriend who worked in the sport (thanks, Jimmy!) and, ironically, became a fan, and seeing as D is Canadian and, well, bleeds ice, it was the perfect end, to the perfect first date of the most perfect relationship I’d ever have.

He drove me home, kissed me politely and drove back to his apartment.

That was October 26th, 2000.

There hasn’t been a day since that we’ve gone without speaking.

This weekend of Hallmark engineered holidays, of roses and candies and balloons and date nights, my valentine will be in Calgary, Alberta some 3000 miles away from me, brokering some meetings with high falutent doctor types to help save the world.  Sure, he’s doing good, which is a fine excuse to be gone, but I will be without my one and only on the day we celebrate some mysterious patron saint.  Even though we’re a bit too poor to exchange lavish gifts, we might’ve grabbed a movie, snuggled on the couch, gone to bed early or…not.  He’s not even gone yet, and already I miss him terribly.

But, although I’ll be alone on Saturday, he makes it so I’ll never be lonely.

Happy Valentine’s Day, baby.

February 11, 2009 at 10:24 pm 7 comments

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