"Did you guys know?"
A very common question that we’ve been asked since the birth of our daughter, Hazel. Down Syndrome - really? Trisomy 21? How could that be?
Yes we did – Wait (pause for dramatic effect) Did we?
Well, that’s the simple answer. Right? It makes perfect sense.
However, the full story is not simple. It is painful, long and feels like the pieces took a very long time to fall into place. The happy ending has already been documented and continues to flourish but for a long time it seemed unlikely that the end was near and the last thing it seemed was happy.
I hope that after reading this story you are able to identify and relate to 2 people who overcame fears, learned how to truly accept what is, and who were completely vulnerable to what the universe had hidden up its sleeve. I also wish that through this story, you might gain empathy for others that have had to surrender themselves to a universal plan that was far beyond anything they could ever have imagined or controlled.
By living this story, I have realized that life has a way of providing the experiences that we NEED to make us more compassionate people. More importantly, it usually has little to do with our own perceptions and ideals about what will help us along. Indeed it is what will enlighten and empower us, we just have to accept it for what it is.
In the end, it all happens just as it is supposed to.
As I sat down and tried to write this some months ago, I found that it presented more challenges than I expected. It became painfully obvious that I was having a hard time separating my fertility story, from my pregnancy story, from Hazel’s birth story. I was not ready to revisit the fertility battle, nor was I ready to recollect and explain my pregnancy in detail. Advice was desperately needed. I was determined to get this birth story out there somehow. The advice I received to help me get this process started was, that all of those experiences do not necessarily have to go together and form one story. I could dissect each individual part and write what I felt I could handle and relive again. Turns out that I do revisit the pregnancy in some detail.
Mostly, this is a birth story.
My water broke at 11:50pm on my 37th week of pregnancy. Like exactly 37 weeks…No premature babe for us. WOOT!!!
Earlier that evening, I was sitting in my hospital room visiting with my Zia. I was feeling some contractions (that was nothing new - I started Braxton Hicks at 19 weeks). I thought nothing of it until later that evening they started to get more intense and I decided to call the nurse.
1 cm dilated. She assured me that I could still be in labour for even up to another week, and not to worry. But I knew this baby was not waiting another week to come out. So I did what we all do. Had a shower, shaved my legs, brushed my teeth and put on some cozy, pretty pink PJs. Then I lied down to try and rest a little, so I would be ready to meet the most anticipated baby of 2012 (besides Beyonce’s – seriously! Must you and Jay Z try to steal my thunder?).
Here is a good a spot as any to insert some of the details of my pregnancy.
I had already been in the hospital for 2 weeks in a city 2 hours away from where we lived. Matt was able to be there with me the entire time (even for the 5.5 weeks we spent in the NICU). I will forever be indebted to his father for covering for him at work. As well as, Matt’s clients who understood and accepted the reasons behind his absence throughout the whole process. Having Matt there by my side was absolutely necessary for keeping me calm, sane and emotionally stable for the remainder of the pregnancy. This story would not have a happy ending if it weren’t for the unrelenting positivity and stability of the man that I get to spend my life with. He makes it all make sense – always.
There were a few reasons I was admitted to the hospital at 35 weeks. The first was the fact that I had Polyhydramnios (to read more about Polyhydramios click here, and here). The second was that we knew the baby would need surgery when it was born (our local hospital was not equipped to perform this type of surgery so we knew delivery would be away from our friends, family and anything familiar – Awesome!).
Allow me to go on a little tangent:
As I am writing this, I’m trying to find a balance between telling a story that gives you enough details to relate to, while simultaneously compartmentalizing my emotions about whether or not meeting my baby was as easy as it sounded. Not knowing whether or not the baby was going to have DS was very a stressful part of my pregnancy and it was difficult to find proper emotions for.
We received a diagnosis of Duodenal Atresia (“Double-Bubble” stomach) at 26 weeks and a VSD at 32 weeks. Both birth defects that are markers for Down syndrome. Everything else was measuring in the "normal" range with the babe, femur length, overall size, etc. We denied the early genetic testing so there was no proof or data to show us anything definitive about a diagnosis for DS. We were offered an amniocentesis at 30 weeks (because of the “double-bubble” stomach diagnosis), which we denied. There was a 0.5% chance of early delivery at that point. The last thing we wanted was a baby that was born at 30 weeks, who was facing a surgery immediately upon arrival and may or may not have DS. The stakes were too high. We were not willing to gamble with 0.5% odds, not with our baby’s life. So we carried on in the only way we knew how – stressed the “F” out!
What was happening with this baby? What were we going to do? Was it going to survive all that was stacked against it? There were tears my friends, LOTS of tears and yelling and the worst of it all - silence. The dialogue stopped, the fear intensified and we did the best we could. We carried on reassuring our babe that we would love it no matter what, that we would do our best to face challenges with honour and valour, and that we would not let anything stand in the way of our baby’s well-being.
Now this is not to say that we accepted DS, because that couldn’t be farther from the truth. We went to bed every night praying that it was just the heart defect and the stomach surgery and that DS was not a reality. We were not quite as accepting of the lifetime of challenges that accompanied a DS diagnosis. We wanted fixable problems only please. We felt like terrible people. What we did embrace was that this was our baby and it was coming to us no matter what. This baby fought equally as hard as us for it to be here and no matter what we were going to be parents. This baby needed someone to love it, care for it, advocate for it and support it. Onward…
So when the time came and it was judgment day, we were scared to meet our baby. Scared to be faced with DS, surgeries, stigmas, challenges, NICU stays. Not to mention, would other people accept this baby and love it the same? Once it came out, we would know. DS was the last thing on earth I wanted for MY baby. I liked the escape from DS, meaning I could imagine a perfectly, healthy, 46 chromosome baby when it was still in my body. When it was a part of me it felt safe, we were safe. We didn't have to tell anybody anything about it, just that it was ours and growing and happy. The baby had no challenges, except the impending surgery upon birth. No biggie.
I think I have gone so far past digressing that you can’t even say “I digress” anymore…BUT…
So, my water broke at 11:50. As advised by my docs and nurses I needed to lie flat on my back and basically not move an inch for fear that I would have cord prolapse (very scary). I waited to be checked and the doc confirms this is it.
THIS IS IT!!!
We are finally going to meet this Baby. We will finally know DS or no DS. We can move forward and start our life. We tried to focus on what was happening in the moment. This baby is coming, we get to meet it, we get to see boy or girl, and we get to name it and hold it and just be parents.
We called our families at about 2 am with an update. With terrible weather and kids in tow, they frantically began the launch process of traveling 2 hours in the middle of the night to make sure they were there when this baby came out. Unbelievable!!!
Finally, it is my turn to be wheeled to the labour and delivery room. I have waited so long for this moment. I've seen so many others taken down, and then wheeled through with their new little babies. You see things when you live at the hospital.
IT'S MY TURN!!!
Come to find out that only my top 2 membranes ruptured. Likely, labour was going to progress slowly. Baby was bouncing up and down unable to descend.
Here's the fun part...
I LAID FLAT ON MY BACK FOR 7 HOURS. FLAT ON MY BACK.
I was unable to turn on my side because that resulted in losing the baby from the monitors. Also, the ol' cord prolapse thing again. I am pretty sure that any labour and delivery book you read or person you talk to will tell you specifically NOT to lie flat on your back. Not the best for pain or for progressing labour. YIKES!
I stayed at 2 cm that whole time. Finally, the Doc came in and decided to just break my water in order to control the position of the baby, to guide baby's head down over my cervix so the cord wouldn’t come out first.
Yeah...Yeah...let's do that!
It was at this time that I was really regretting not getting DRUGS!!! The rupturing of my membranes (because their happened to be more amniotic fluid than a small fresh water lake. A result of the Duodenal Atresia) was long and painful. As soon as the doctor was done I immediately demanded drugs.
DRUGS!!!! NOW!!!! ME NEXT!!!! I didn’t forget to type in a “please” there wasn’t one.
Good news was that I was already dilated to 4 cms when she was done.
YAY!!!!! WHERE ARE THE DRUGS??!!
Here is where the timeline began to blur. My labour was progressing a great deal quicker than anyone had expected. So in come the DRUGS and the doc begins to administer it. My contractions were extremely intense and coming very quickly. Why aren't the drugs working? They should be working by now, right? Long story short, they did start working but only on my left side. WHAT?!!! Doctors were confused, I was in pain and I'm pretty sure Matt would have done just about anything to make it stop. I suggest that the nurse check my progression. I feel things happening. Yep...there it is...I’m 10 cms and ready to push.
It was too late for drugs, that's why they didn't work.
In a time period of about 30 minutes I dilated from 4 cm to 10cm.
TIME TO PUSH!!!
As I was getting ready to bring our baby into the world, the drug gods from the sweet heavens above blessed me with numbing the other side of my body just enough to take the edge off the contractions but not enough to not be fully present and aware of what my body was feeling. Just the right amount!!!
I want to take a minute to clarify something. It seems by the way I am telling this story, that I didn't have a great experience giving birth. It is actually quite the opposite. Among all the risks and complications, I was excited, and nervous and just genuinely trying to take it all in - the pain, the confusion, the emotions (Matt's & mine). I really took the time to connect with the baby. I was aware, focused and ready. It was new, uncharted, exhilarating territory and I wanted to be present for the entire process (even the scary stuff).
In hindsight, I am thankful that I was present because I learned 2 very important things that day.
My girl was setting the tone for the way that she would approach and face the rest of her life. Hazel's heartbeat NEVER faltered; never slowed, never quickened. She was the most stable person in the room that day.
And I knew.
I knew at that moment that she was giving me peace. I knew that she was giving me the strength that I couldn't muster, no matter how focused I was that this was about getting this babe out safe. No matter how many times the nurse ensured me that everything was fine. Hazel was the only one who could help. She was creating a peaceful environment amidst the chaos. She allowed me to be calm and trust her. She gave me confidence that she had this under control and that I shouldn't worry about her. She was creating an experience for me that was calm, beautiful, momentous and that would change and define my relationship with her forever.
That I have the most supportive husband ever created. He is perfect for me. He gets me. All of me: The crazy, neurotic, irrational part (not that I’m any of these things). He knew what I needed to hear to keep me calm. He knew that he needed to reach way into depths of his soul, where he had no idea he possessed and guarantee me that everything was perfect. I would have known if he faltered even in the slightest bit. HE KNEW, the baby was fine, he promised me and I believed him. He knew what to do.
Ok...so back to the delivery room...
Short story short - I pushed and a baby came out. The doctor's told me it was a girl. I told them there was no way it was a girl. They flashed me her goods and YUP - GIRL!!!!
As the tears were rolling down my face, they took my baby to check her. While they were working on her she was screaming so loud, I had my first embarrassed mommy moment. Never can start to early. You know the one where you are trying to make up excuses for your child's irrational behaviour? Was she tired? Hungry? Who knows? What I did know was that she was pissed...that's my girl.
I asked, "Is that my baby?"
Hoping that maybe another baby was in there at the same time and THAT baby was the really naughty one. “NOPE,” they assured me with a half smirk and eyes that said "good luck with that." She started making me proud the second she emerged into this world (and a little embarrassed).
Still the underlying question was unanswered for us: Down syndrome or not? The longest moments that have ever passed in the history of time passing. FACT!
Moments later the nurse handed me this little bundle of firey hot temper, all wrapped up in a pink blanket, with a hat pulled down just so it framed the tiny features on her precious little face. I looked at Matt - we shared a small little smile that spoke words that I will never be able to write - he looked at her and said to me, in the absolute most truthful and genuine way…
And we knew. Our girl had come to us with a little something extra and a little more to offer.
Hazel Loretta was here, all 5 lbs and 50 cms of her. HOME.
I held her in my arms and tried to memorize everything about that moment. I tried to fill my brain with nothing but the 3 of us. I inhaled the sweet smell of her skin all the way to my toes. I noted the way the lights reflected off her grayish, delicate skin. Our eyes locked and her glassy, black, almond shaped eyes mesmerized me. I captured the image of the way tiny little spit bubbles pooled in the corner of her mouth and just hung there stuck in time. I experienced the look a father has on his face when meeting his daughter for the first time. The way my lips felt as they grazed every crevice of her smooth little face. I felt the weight of her tiny little body in my arms. She seemed to be taking us in with as much depth and curiosity as we were her. It was the beginning. It was beautiful.
There was also the overwhelming feeling that we had finally become parents after such a long, arduous, painfully humbling road to this moment. This moment that only held feelings of pride, joy, and love (oh...so much LOVE). The good love. Pure LOVE. No conditions LOVE. The kind of LOVE that we need to make us see what real LOVE is all about. The love that makes us LOVE more and better and bigger in all aspects of our lives. I soaked it in like a sponge and carry it with me in every fiber of my soul. I know how to love the good, sweet kind of love. Within ONE minute of meeting her, this is the gift that Hazel had given me, and continues to give with every smile that lands on her face.
It was in that moment that my heart was filling up with love that I gained a deep respect and appreciation for modern medicine and the medical system. Immediately, I was thankful to every doctor, every nurse, every ultrasound tech, every geneticist, every neo-natalogist, every specialist and every surgeon who told me my baby could have Down syndrome (even though at the time I never wanted to hear the words "Trisomy 21" again).
Why would I be thinking this at a moment like this?
Because it was them that gave me the ability to have this moment of pure love for my girl. Because they were good at their jobs, they educated me, they told me what I might expect. And as it turned out, they prepared me for meeting my little girl with something extra for the first time and being able to accept her and love her just the way she was.
I leave you with this story Hazel’s Mim brought to my attention. Hopefully it further solidifies what I have told you here in Hazel’s birth story.
"At the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish line and win.All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back...every one of them. One girl with Down Syndrome bent down and kissed him and said, "This will make it better." Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, the cheering lasted for several moments... What matters in this life is more than winning for ourselves. What matters is helping others win, even if it means slowing down and changing our course."
Of course, the Down syndrome aspect of the story was the obvious connection I made. Immediately imagining Hazel as the compassionate little girl in the story. Always ready to lend a supportive hand to a peer. I would be overflowing with pride if my daughter turned out to be that little girl.
However, upon further thought and reflection I noticed that it was very little about Down syndrome and more about the last line of the story:
"What matters is helping others win, even if it means slowing down and changing our course."
This is my life, this is a message to me (to all of us really)...
When we get pregnant we wait, we dream, we plan, we look forward to reaching the finish line and taking home our prize. When I learned that I could be racing toward a baby that was different than the one I had expected, I became the little boy who fell. I was the victim that was never going to claim my prize.
Until the moment I looked into Hazel's eyes.
I realized immediately that it was not about me...it was never about me. It was about her. All of her. The fact that she was different - the fact that she was the same - the fact that she was ours and she needed us. She loved us. She accepted us. She CHOSE us.
The shift in my universe was instant and undeniable. My mission now is to help Hazel win, succeed, and reach her full potential just as any parent would do, even if it means that I have to slow down or change my course.
So you see, in the end...
Everything happens just as it is supposed to.