Tuesday, June 15, 2010

Part 1 - A Year in Holland - Finding Out

Most mothers are familiar with Emily Perl Kingsley's essay, "Welcome to Holland." It's a beautiful, short essay describing how it feels to raise a child with a disability. As a mother of three, I've received this message about 25 times over the last 7 years. Moms like to circulate this to other Moms via email, posting it on message boards, Facebook... in a way, it's almost a rite of passage to motherhood. I would be hard-pressed to find a Mom who hasn't read it.

While this essay always affected me, it never touched me more than on January 23, 2009. I was 18.5 weeks pregnant with our third child and at 8:30 that morning, Jamie and I loaded Andrew and Lia into the car because we were all going to my ultrasound together, as a family, to find out if we were having a little brother or a little sister. It was a happy and exciting day for all of us, one we had been counting down to for weeks!

Having already gone through this two other times, I wasn't the least bit nervous. Hey, after two successful pregnancies and six years of motherhood, I was an expert! What could possibly go wrong?

"Well, do you want to know what it is?"

"YES! We can't wait to find out!"

"It's a BOY!"

Lia was ecstatic. She had been telling me since I told her I was pregnant that she wanted a little brother. Andrew was convinced he was having another sister so he was surprised to hear the news. After about a minute of thought he proclaimed, excitedly, "COOL! I can teach him how to play video games!" And Jamie and I were just thrilled - we already had his name picked out and we started to text our friends and family as the technician left the room.

As we waited for the doctor to come into the room, Andrew and Lia were literally bouncing off the walls. They were almost 4 and 6 then so we couldn't really blame them.

"God, what is taking the doctor SO long to come in here? Can't we just go? Do we have to wait?"

Jamie went out and asked the ladies outside how much longer we'd be waiting. Unbeknownst to us, they had called the high-risk OB and we were instructed to please just wait, he would be along shortly.

We waited probably about 30 minutes for the doctor to come in and we were still under the impression that this was a regular, routine ultrasound. We thought the doctor would be in and out in minutes and we could get our two animals home and away from expensive medical equipment.

Dr. Singh came in, spent a few minutes looking at the monitor and made a sound I never in my wildest dreams expected.

"Oh...Hmmm... do you see that mark right there on his face? That is a cleft lip. Do you know what that is?"

I knew what a cleft lip was but Dr. Singh launched into his explanation. Jamie and I just looked at each other, and at Andrew and Lia to see if they had picked up on anything (they hadn't). And for as long as I live, I will never, ever forget what Dr. Singh did next. He held my hand, looked at me and said, in the most solemn voice: "I'm so so sorry, I'm so sorry."

Wait - why is he so sad? Why is he acting like he just told me my baby was going to die or that he'd be born with a hole in his heart? What isn't he telling us?

"There's nothing else wrong, right? It's a cleft and can be fixed, right?"

"As far as I can tell, everything else looks completely normal. I would like you to have an MRI done in Boston to see if there is anything else going on. Sometimes a cleft can be indicative of other issues like Down Sydrome, heart issues, or chromosomal abnormalities. We also can't tell from this ultrasound if his palate is affected so my staff outside will give you the phone number so you can book an appointment in Boston..."

My head felt heavy. My ears felt blocked. I could hear him talking but couldn't focus on anything else he was saying. I wanted to run. I looked at Andrew and Lia, fighting over the blood pressure equipment, oblivious that there was something wrong with their brother. I envied their oblivion. How could this happen? What did I do wrong? Why was Dr. Singh SO incredibly sad? Is that how everyone is going to treat my baby? Oh hell no, I will not stand for THAT. My son will not be pitied, people will not feel sorry for him. We are going to fix this and he is going to live a normal and perfect life, just like his brother and sister.

I went into defensive, fix-it mode, like I always do. I didn't even fully understand what was wrong with him and I was already trying to figure out how to fix it. I wanted to get the hell out of there and get to a computer so I could start researching.

I didn't say much on the drive home. I was lost inside my head. I was trying to reach the little person growing inside me, trying to pretend that the appointment we just had was routine, that this whole thing was a mistake, there was no possible way that something was wrong with our son. Couldn't be.


(Part Two coming soon....)


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