Part 6 - A Year in Holland - He's Finally Here!

On June 3, 2009, between the hours of 8:00 p.m. and 11:00 p.m., at a restaurant called Masa, I was wearing two of the only remaining articles of clothing that still fit. I was 37 weeks pregnant and feeling every minute of it. As I hobbled back to the table, I could feel people staring at me. My belly was just so enormous that people had started to stare at me when I went out in public.

I sat down across from my oldest and dearest friend, Colleen, when a woman and her daughter walked up to me and said:

"Excuse me, I'm sorry, but when are you DUE? You look like you are about to give birth any second!"

I laughed because I had just told Colleen a few minutes earlier that strangers had been coming up to me in public, staring at me, and making comments. She didn't believe me.

Colleen and my other friend, Aly, joked that the restaurant was closer to the hospital than my house so if I went into labor, they would call Jamie and have him meet us there. What they didn't realize, then, was just how close we were to that exact scenario. At 4:00 a.m. the following morning, I felt a pop and woke suddenly after a short and restless sleep. My water broke a mere 4.5 hours after I left the restaurant.

It was time.

Jamie ran around like a crazy person getting the kids ready, throwing last-minute items into the hospital bag, frantic, rushing me out of the house. I reminded him that babies aren't born like we see in movies. Labors are usually long and, well, laborious, hence the term. I was in labor with Andrew 24 hours, about 9 hours with Lia, we had plenty of time!

Or, not.

By the time we got to my sister's house a half hour later to drop off Andrew and Lia, I was in full-blown labor. My contractions were about 2 to 3 minutes apart and we felt like we'd never get to the hospital! Despite the early hour, we still got stuck behind a few cars. It was Jamie's job to focus on traffic, it was my job to focus on my breathing.

We got to the hospital at 5:30 a.m. and Jamie ran through the labor and delivery ward, even more frantic than before, exclaiming "She needs a bed, she needs a bed!"

One of the labor and delivery nurses questioned me, "First time Dad?" She thought he was overreacting.

I answered insurance and admittance questions between contractions and I ordered my epidural right away. I had an epidural with both of my other two children and I was looking forward to the serenity and peace an epidural provides during a difficult labor.

40 minutes later I was still waiting - I was in agony! Everything started happening so fast, I didn't have time to worry about the baby or answer any more questions. The only thing I was capable of, in that moment, was focusing on what my body was doing. The contractions came one on top of the other and finally the anesthesiologist came into the room. Serenity now!

I have friends and family who've had natural births tell me when it's time to push, you can't not push. I had never experienced that feeling myself but as I was being prepped for my epidural, I got to experience it for the first time.

"He's COMING!" I shouted to everyone in the room.

"There's no time for the epi, GO GET DAD" was the response I heard come from the fog which surrounded me.

"Wait, NO! I need the epi, I can't do this, I can't do this!" I replied.

"Yes, you can. He's right there. One push and he'll be out, come on, you can do this!"

Jamie rushed back into the room and ran to my side. I pushed once and Mason James was born!

He was born but I didn't hear a cry. He wasn't crying, what was wrong? Why wasn't he crying?

They sucked fluid out of his mouth and throat and finally he began to cry! There is nothing more pure, more beautiful, to human ears than a newborn baby's first cry, the first breath of life.

They laid him in my arms and when I first gazed into his sweet little face, I swear I didn't see a cleft. I didn't see a birth defect. I just didn't see it. I kissed him and all I saw was perfect beauty. All those months of worry, fear, and self-doubt, all washed away in an instant.

"You're finally here" were my first words to my new son.

Welcome to Holland.

Day 2 of Summer Vacation

Ahem.

CanIhaveasnackCanIhaveaplaydateWhocancomeoverHehitmeShehitmefirst!CanIplayWiiCanIplayDSCanIplayMarioCanIwatchSpongebobPleasecanIhaveasnackCanIhavegumCanwegotothepoolCanwestayuplateCanIhavechocolateAndrewinterruptedmeLiainterruptedmefirst!DoIhavetomakemybedWhycan'tIplayoutsideinmypajamasCanIhaveasnackCanwecallsomeoneIdon'twanttoplaywithmysisterIt'snotfairAndrewalwaysgetstousethecomputerfirstIt'shotoutsideIt'sfreezinginhereCanIhaveapopsicleWhycan'tyoubuypopsiclesatthestoreWillyouplaywithusCanIhaveasnackCanIplayMarioGalaxy?

Thank you and good night.

Part 5 - A Year in Holland - Waiting for Mason

After our 11 hour day in Boston, there wasn't much else to do but wait. I am, by nature, a fixer so you can imagine how helpless I felt after being told there was nothing left for me to do but rest, take care of myself and enjoy the rest of my pregnancy.

When we made the decision to have a third child, I remember thinking how much easier it would be now that I was a veteran parent. I wouldn't dwell on, or overreact to, all the little things I did with my first two children. Breastfeeding was going to be a piece of cake. If I had a summer baby, my three wonderful children and I would spend our summer going to the beach, playing in the park, going for bike rides and walks along the bike path. My trip to Italy was completely planned and I was already living it inside my head.

But with the tests completed, diagnosis confirmed, and nothing but time on my hands, I started to think about Holland. I tried to remember that Holland had tulips and windmills. But I still grieved for Italy.

I joined a cleft message board and started reading other families' experiences. I looked at hundreds and hundreds of before and after pictures. I tried to imagine what my baby would look like. When I was honest with myself, I admitted I was terrified that I wouldn't find him beautiful like I did his brother and sister and I cried at the thought. I started telling close friends and family that Mason would be born with a cleft and I knew that their reactions would mimic my own so any time I told someone new, I made sure to sound optimistic and positive, even when I didn't always feel it.

The rest of my pregnancy wasn't easy. On top of the all the normal things women experience during the second half of pregnancy, I carried the added weight of apprehension, fear, and dread. I was scared. I still wasn't sure I was strong enough. I knew the first year of his life was going to be the hardest year of mine. Some say that babies choose their parents. What if he chose wrong?

Every time I asked my husband that question, he pointed to our bedroom wall. On our wall hangs a piece of paper, one of Lia's preschool projects, dated January 22, 2009. She wasn't yet 4 years old and on the day before our first ultrasound her preschool teacher posed the question to her students: When I Grow Up I Want to Be _____________.

Lia's answer, in beautiful, shaky preschool handwriting was: "MOMMY"

(Part 6 coming soon..)

Part 4 - A Year in Holland - Boston Children's Hospital

A brief recap of where we are in the story: I'm 35 years old, with two young kids, and 23 weeks pregnant with a baby boy who is going to be born with a craniofacial birth defect.

After getting the results of our MRI, it was time to head over to Children's Hospital to meet our surgical team. The funny thing was, everyone at Beth Israel hospital acted like meeting a surgical team at Children's was a very normal part of pregnancy. It was all very matter-of-fact for them, meanwhile, Jamie and I felt like we were living someone else's life. What were we doing here? How did we get here?

Up to this point, the only surgery I had any experience with was having my wisdom teeth out when I was 17. My baby wasn't even here yet and I was meeting with a surgical team? Unthinkable, yet, there we were.

If you've ever been to Children's Hospital, you know what a completely humbling experience it is just walking through the front door. There are all these children, these adorable, gorgeous, little miracles, everywhere you look and they are all going through something out of the ordinary else they wouldn't be there. Many of them are dealing with things none of us have ever dealt with, or will ever deal with, in our lifetime. Yet, they are still children. Smiling, playing, laughing, looking at the fish tank, holding a balloon... My heart and my eyes fill up every time I go there, still, and I've been there more times than I can count now.

While we sat in the waiting area of the Plastics division of the hospital, waiting our turn to meet Dr. Mulliken, I wondered what people were thinking when they looked at me with my big pregnant belly. Were they blaming me? Were they pitying me? I know, now, they were thinking none of those things but that wasn't the first or last time I had those thoughts during my pregnancy.

We sat in the waiting room for TWO hours waiting to see Dr. Mulliken. Jamie was stressed about the kids and traffic, I was tired and hungry and just wanted to go home, when this cute little Hispanic girl came in with her Dad and big brother. She looked to be about a year old. She was tiny! She had two little piggy tails on top of her head and she had on the absolute smallest Reebok sneakers I have ever seen! She was sitting in a stroller and as I was looking at her, I noticed the tiniest scar on her lip. This was one of Dr. Mulliken's patients! This beautiful little girl was born with a cleft and here she is, repaired and gorgeous! I couldn't help but smile at her and I couldn't take my eyes off her.

Finally they called us into a room. They gave us some reading material and then had us watch a 20 minute video about cleft lip and cleft palate, featuring cleft-affected children and families - patients of Dr. Mulliken. Jamie and I watched the video in silence. When it was over, Dottie, Dr. Mulliken's head nurse, and Dr. Mulliken himself came into the room. They asked us what we thought of the video. We looked at each other, kind of shrugged, and said something very benign like "it was fine."

They said, "Well, weren't you moved?" The correct answer, of course, was Yes.

"Um, not really." I told you hormones are a bitch, right?

After making a sparkling first impression with our future surgeon, we then began to talk about what our future holds. Dr. Mulliken went into lots of technical detail, giving us a timeline of what would happen when, after the baby was born. It was like drinking from a fire hose, we couldn't really process it all. Then he shook our hands and told us he'd see us after the baby was born. Nurse Dottie stayed behind and talked with us more and asked us if we had any questions. We talked about feeding and she showed us the Medela special needs bottle nipple that was designed for cleft-affected children, while explaining all the different scenarios and obstacles we might face trying to feed our son. Again, we were overwhelmed.

We left Children's Hospital with a bunch of paperwork, a $20 Medela bottle nipple, instructions to call Dottie when the baby is born, and an entirely new perspective on raising children, parenting, and life.

(part 5 coming soon..)

Part 3 - A Year in Holland - 11 Hours in Boston

As I awaited our 11 hour day in Boston, I ran through a gamut of emotions. I continued to research (damn the Internet!) and I had days where I was completely fine, and days where I was more than a little bit crazy. I cried. I was angry. I worried that I had ruined my other two kids' lives. I worried I wasn't a good enough parent; wasn't strong enough to handle this. I have always heard "God doesn't give you more than you can handle" (I have really come to despise that) but I wasn't sure. This was maybe more than I could handle.

Then, the day came. I was 23 weeks pregnant and we were heading into Boston. Our friends and family really came through and we managed to find 11 hours worth of babysitting for Andrew and Lia. They didn't have to miss school or after school activities. We felt so loved and supported that day, I can't say enough how grateful we still are for all the support we received.

We got to Boston by 9:00 a.m. My first appointment was the MRI. I had never had an MRI before in my life. And hey, aren't MRIs dangerous for pregnant women? Turns out that is not the case. It was more important to determine what else, if anything, was going on than to worry about any potential risk from an MRI. So, I take off all my jewelery, get into the coffin-like tube and did my very best to remain calm. It actually wasn't too difficult, which surprised me. I think I was just relieved to finally be getting some answers. It had been about 4 weeks since our ultrasound, which is an awfully long time for a pregnant woman to wait. Hormones are a bitch.

During the 4 weeks between appointments, Jamie became my cheerleader. He was positive and optimistic and encouraging. Together we were sure that it was an isolated cleft lip and that he'd have one surgery and be done.

The results of the MRI brought mixed emotions. We learned that our baby boy had a complete, unilateral cleft lip and a complete cleft palate. (cleft palate is a congenital fissure, or hole, in the roof of the mouth, resulting from incomplete fusion of the palate during embryonic development). They couldn't be 100% sure about the severity of the palate until the baby was born, but they told us they were pretty sure it was a complete cleft of the palate. I cried, again.

Through my research I knew that if the palate was affected, it meant a lifetime of surgeries, instead of just one. It meant a lifetime of feeding issues, speech issues, dental issues... it meant an entire team of doctors and doctor visits and frequent trips to Boston for the next 18 years. It was overwhelming. BUT, it was, thankfully, "just" a cleft. There was nothing else wrong with our baby. He didn't have Downs, his heart looked perfect, and there were no other abnormalities they could see. This was excellent news, the news we were hoping for! So while we were upset about the cleft palate, we were overjoyed by everything else.

(part 4 coming soon..)

Part 2 - A Year in Holland - The Drive Home From the Ultrasound

The drive home from that appointment felt eternal. When we finally got home, Jamie had to take off to go to work, Andrew had to get ready to go to school, and I had to take Lia to gymnastics. Life went on and there was nothing I could do about it.

Our ultrasound was on a Friday and the weekend that followed was one of the most difficult of my life. I spent entirely too much time researching cleft lip, cleft palate, chromosomal abnormalities and all kinds of syndromes I didn't even know existed. I couldn't get Dr. Singh's solemness out of my head. I kept hearing his voice: "I'm so so sorry, I'm so sorry." Why would he be THAT sorry if it was "just" a cleft lip? I managed to convince myself that he was keeping something from us and that he suspected something far worse than a cleft lip.

I was supposed to go to a baby shower that Sunday. I woke up Sunday from a night of broken sleep and couldn't get out of bed. I did not want to go to a baby shower and celebrate someone else's perfect baby when I was terrified for my own baby. I just couldn't do it. Only... I did do it. At the last minute, I texted my sister and told her I was coming. I put on a brave face, walked into that baby shower and celebrated the joy that comes with all new babies.

In retrospect, I think it was the best thing I could have done. I was very visibly pregnant and many people at the shower asked me about the baby. When are you due? Is it a boy or a girl? Do you have a name? Are your other kids excited?

I was able to talk about it like the Friday appointment never happened. I was able to feel just happy, without letting the dread and worry set in. Just happy. Happy like I had felt for the previous 14 weeks. And it hit me, then, that no matter what, things really were going to be okay. They had to be, there was no other choice. I also made up my mind that I was going to call Dr. Singh first thing Monday morning and demand to know what else he was thinking.

And I did just that. Monday morning, 9:00 a.m., I dialed Beth Israel hospital in Boston and talked to one of Dr. Singh's nurses. She and I spent about an hour on the phone. I explained to her what happened on Friday, how upset Dr. Singh was, how upset he made us with his reaction. What she told me was this: Dr. Singh never knows how people are going to react to hearing that kind of news so he has to deliver it as if it's devastating.

She was the first person who told me about the great and wonderful Dr. Mulliken. Wonderful, amazing, gifted Dr. Mulliken. But I'll talk more on him later.

My conversation with Dr. Singh's nurse really helped me sort out my feelings. As I was talking to her, I heard myself say things that made me realize Yes, I can do this. We can do this. I told her that I felt lucky that he is my third child and not my first because I am a seasoned parent with a much different perspective than a first-time parent. Babies might be born perfect, but by the time they hit 6 years old, they're a mess (said with love, of course). Scars, bruises, cuts, broken bones... there is nothing "perfect" about a 6 year old, that's for damned sure. Though, I didn't know that when I was pregnant with Andrew, I only know it now because I've been there, done that. So, I told her I was grateful; grateful to have the perspective of a third-time parent versus a first-time parent. She agreed that my being a veteran parent was going to help immensely in getting us through this.

And so I scheduled all my appointments. I scheduled an MRI and ultrasound at Beth Israel hospital in Boston. I scheduled an appointment with the cleft and genetics team at Boston Children's Hospital. When all was said and done, Jamie and I had scheduled an 11 hour day in Boston to determine if there was anything else wrong with our baby. And this was only the beginning.

(part 3 coming soon...)

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....)

Where are your parents?

For the second day in a row, we had a tornado watch in our county. We couldn't play outside and I didn't want to spend my afternoon coordinating indoor play dates for my kids so we made a family trip to, where else? The mall.

Going to the mall with three young kids is overwhelming at best, unmanageable bedlam at worst. When I take my kids to the mall, I am on them like white on rice. I don't want them to get lost, I don't want them to break anything, I don't want them to annoy anyone, and I don't want strange mall people trying to engage them in conversation or offering them a balloon. Basically, if you ever come to the mall with my kids and me, don't expect a lot of reciprocal conversation from me.

Now, what I don't understand is the other kind of parent. The "where the hell are your parents" parent. You know who I'm talking about.

There is a Venetian Carousel in the food court and Andrew (7) and Lia (5) beg us to ride it.

"Only if you either get on a horse that goes up and down or if you ride the spinny wheel thing. No sitting in the chair that doesn't move, that is completely lame."

Andrew can be wussy and sometimes he needs to be pushed. What? The last time he rode a carousel he sat in the chair! What am I supposed to do? Sometimes he leaves me no choice. And anyway, I withdrew my entry for Mother of the Year on January 2nd.

Jamie brings them up to the carousel while I feed Mason (just turned 1! Happy Birthday Mason!) . He pays the $4 (RIP OFF!) for them to ride and comes back to the table. As they're waiting for the ride to start, 7 boys between the ages of 6 and 8 crush their way onto the carousel and all jump into the circle thing with the spin wheel (if you've ever been on the teacups ride, it's like that). Now, they can't all fit, but 6 of them manage to squeeze themselves into it while the weakest link settles for a nearby horse. A moment later, the carousel operator (who gets paid minimum wage) walks up to the 6-boy sausage cup and tells the boys that two of them have to get out - the cup can only hold 4.

The boys sit there and stare at her, and at each other. And they sit there. And they sit there.

"Two of you have to sit somewhere else," she repeats.

There are probably 10 other kids on the ride, including my two, and the operator is not going to turn it on until two of the boys move.

"Come on," I say to Jamie, "they have been waiting on that thing for 4 freaking minutes, one of those kids has to move so they can start the ride. They are just sitting there! Dude, they are totally ignoring her, this is so annoying, everyone is waiting, hey kids WHERE ARE YOUR PARENTS?"

And then I see her. The one woman responsible for these kids. Was she in the bathroom? Nope. At Cinnabon getting a cupcake? Nuh uh. Making out in a corner with Johnny Trailerpark? No sirree. She was standing right there, in front of the carousel, in front of the six boys, the entire time. Not saying a word. Letting everyone else wait while her kids and their friends completely ignored the operator.

Awesome, way to go Mom! On behalf of all the parents who brought their kids to the mall today, thank you, you totally rock.