I know, I know. I have been planning to post this last month for the Down Syndrome Consciousness Month but I never got around to it. But then again, who said that I need to write this post at a certain month, right?
I created this blog to document our journey to life as mother and son. Little did I know that our journey would be a whole lot different from what I envisioned it to be. I have previously posted bits and pieces about the rough start that we have. So, let me sum it up in this one long post so I can also move on from being undecided to write this all down or not.
So here goes.
The Unexpected Surprise
I learned I was pregnant on mid-January of 2013. All alone in my apartment, I took the pregnancy test and there it was, two pink stripes boldly gazing back at me. I had to repeat the test because I was in denial that I was indeed pregnant. Everything seemed so sudden, so unexpected. I made plans for myself to start fresh and had a new set of goals. All of that took the backseat because I had to go back to the drawing board.
For the first trimester, I was a ball of emotions inside. On the outside, I was acting almost the same, albeit strange at times (I think), but inside I was a total mess. One minute I was ecstatic about my baby, the next, I would be crying my eyes out. I guess that comes with all pregnancies.
I regularly checked in with my OB and made sure I was eating right to the point that I had to keep a journal of what I eat and what time I have eaten. You see, I had a very irregular eating schedule before I became pregnant. And keeping a journal made sense to me. I took my vitamins religiously, read all about pregnancy and babies and all that.
Like most expecting moms, I envisioned the perfect little bundle of joy who will become my partner in seeing the world. When I learned that I was having a boy, I envisioned him to be the most beautiful baby boy I had ever laid eyes on (well, all moms do that, I guess). I was so sure that he will grow up to be the perfect son any mom would ever want.
It took me a while to finally decide on a name, too. I only settled on a name about a few weeks before I gave birth. After scrapping out a lot of names, I decided to name my baby love, Zaine Amory.
Baby Out at 38 Weeks
Those 38 weeks that I carried him seemed to be the shortest and longest 38 weeks that I’ve had. I was anxiously waiting for his arrival and have wanted to hold him ever since I felt him move. And I was lucky to have what I would say the easiest pregnancy anyone could ever ask for – no morning sickness, no weird food cravings, didn’t get fat with all the sugar intake, and I was able to wear my some of my pre-pregnancy jeans until I was 8 months pregnant. And I was blessed with easy labor and delivery as well: 4 hours active labor and 20 minutes in the delivery room. I was indeed lucky.
I didn’t get to see my son right when he came out because I passed out right after the cord was cut. I didn’t even hear his first cry.
I met my son an hour after he arrived. I heard him crying as soon as I came around. And he quieted down as soon as I held him. The feeling of getting to hold my baby was surreal. I couldn’t explain it. I was happy to finally hold my son yet I was quite sad that I wouldn’t feel his kicks and his movements in the early dawn. But I was surprised that he was big. I was expecting a smaller one since, two weeks before I gave birth, my son was estimated to weigh about 5.12 lbs. I gave birth to a 7-lb baby.
As soon as I held him, I was asked to feed him and I thanked the heavens that I have milk. I was quite worried because I still didn’t have milk during the last few weeks of my pregnancy and I read that breastmilk usually becomes available a few weeks before giving birth.
I knew my Mom was in the recovery room with me but I couldn’t remember how many attendants were there. They all sort of faded away in the picture when I got to hold my son for the first time. I looked at my son as he fed and thought how big he was. It made me wonder how I managed to push him out so easily.
My photographer brother was there at the hospital, too, and took lots of photos of me with my little Z. It was a wonderful feeling, actually, having them there to celebrate a new life with me.
When Instincts Tell Us Something
My instinct told me that something was off while I examined my son’s face. His eyes were quite different. I also wondered why his nose was a bit flat compared to what I had seen in his ultrasound photos. Pushing those thoughts away, I chalked it up to exhaustion after having no sleep the night before. I also thought that maybe I squished his nose when I pushed him out and it will be back to how it should be in no time.
The pediatrician who attended my son was not of my choosing. I didn’t have the time to decide which pediatrician to get prior to giving birth. My OB picked the pediatrician and I met him when I was in the delivery room. I didn’t see him again after I gave birth and he didn’t visit our room. Though I didn’t know if we should have had that time.
Down Syndrome and My Son
The pediatrician came on the day of our discharge from the hospital. He took a quick examination of my baby and, after asking me if I had a photo of my son’s father to which I answered I didn’t have, he casually mentioned that my son may have symptoms of Down syndrome because of his eyes. He also casually mentioned that my son had descended testes and quite a high palate. My son was jaundiced, too. He advised to regularly bring him out in the mornings to get some sun and to ensure that he feeds regularly.
Hospitals and More
I was fighting so hard to make sure that my son didn’t have the condition though, somewhere deep inside me, I knew that I was fighting a losing battle. It was a struggle to understand what was going on. Why my baby? Why me? Why us? I had the perfect dream in my head on how my future will look like and yet, all of a sudden, everything became so bleak. I cried buckets of tears almost every night thinking back to the things I’ve done while I was pregnant. Did I do something wrong throughout my pregnancy? Was there something that my OB missed? Is this something that is in my genes? So many questions, yet I never found the answers.
My son’s first four months of life was a series of confinements, doctor’s appointments, blood tests, doctor’s appointments and surgery for his lens extraction since he was born with congenital bilateral cataract – which apparently was also a symptom of Down syndrome. It was exhausting. And with every consultation, we get one good news and then a piece of bad news. My emotions were on a roller coaster ride during those times.
Karyotyping and the Final Diagnosis
I pushed out the schedule for his karyotyping though I knew that I had to get it done. I was just not ready to face a new reality yet. The preparation for his surgery was my priority. Getting clearances from several pediatric specialists was the top one. Making sure I had funds enough to cover the surgery and all his other medical needs after was second. Once I had everything settled, I decided to get him scheduled for blood extraction for his chromosomal analysis.
It took me three and a half months to get it done. I was just not ready. I was praying so hard for a miracle that one day I will wake up and my son will be the perfect little boy that I had in my dreams. That I will wake up with him able to see without clouds in his eyes. I will wake up to see him all perfect and well. After his blood was extracted for his karyotyping, I gave it all up. I remember thinking, whatever will be, will be. But one thing I held on was the hope for a small miracle for my son.
I got my son’s karyotyping results a month after. The results were already available after three weeks but I didn’t have the courage to get it. I wanted to know but I was not really jumping with joy at the idea that my son may have Ds. The piece of paper containing my son’s test results gave me a sucker-punch. It was the lowest point of my life.
All alone in the comfort of my apartment, I drank and cried my heart out. Grieving the loss of the perfect little boy in my dreams. Grieving the loss of the what-might-have-beens and what-could-have-beens. I grieved the loss of my hopes and dreams. It was the most painful experience I’ve had so far. From the time I laid eyes on my son, I knew that there was something not right but I tried so hard to deny it. But in the end, it felt like the joke was on me.
Finding a Support Group
I joined Down Syndrome Association of the Philippines, Inc (DSAPI) and I have found them to be a great moral support for someone who felt at a loss after such a diagnosis. There were other several DS groups on Facebook as well that I joined in as part of my coping mechanism. They have all been a great support system (even if I rarely get to meet with the group) at my lowest point. I realized that I was not alone in this journey. There are quite a lot of us walking through the same path.
In the last year, I have seen my son grow into the little toddler that he is now. He is now 18 months old – active, jolly, hard-headed at times just like his mom. He is just like any normal, typical toddler, ready to explore the world in his own way. I learned to let go of the “perfect” little boy in my head and embrace this not-so-perfect little boy in place. Yes, he is not perfect as I perceived perfection to be, but he is perfect in his own way. He is mine, my son, of my blood, and he has brought me nothing but pure joy.
I wish things could have gone differently with how I knew and learned of his condition. But it is what it is and I have to start letting go of the things that didn’t happen as it should. I am just glad that I could say, for now at least, that we have gone past a very rough start in our journey as mother and son. There’s no rushing in our journey now. All we need to do is to take one step at a time, one day at a time, and just enjoy and celebrate life as we should.
There are still times that I wish that my son didn’t have Ds especially when I see kids his age doing things that they should be doing. But I am also learning now that my son may not be hitting the usual milestones at the “right” time, he will be able to hit them once he is ready. There’s no rush, we are just taking a reroute. The journey may be longer but we are seeing a hell of a more beautiful view than usual. I could say that the bonus there is that I get to baby my son a little bit longer. 🙂