…Get up, come on get down with the sickness…
Well, that’s how the lyrics of the song goes but I am not writing about Disturb’s Down with the Sickness song. Trust me, if you don’t know that song, you’d rather not know about it especially if you have, say, a more sensitive side, for the lack of better term.
Anyway, this is a long overdue post, really, so it may be a tad bit longer than usual. I already had this title for a while now because of the song. I used to request this song to my cousin’s band whenever I am back home and hanging out at the bar where his band plays. I like the heavy beat of the song, bottomline.
But like I said, that is not what this post is all about. You see, when I gave birth, my baby’s first pediatrician came to my room to check on my baby boy before we were given the full clearance for discharge. Given that I have decided to be a single parent and that the father is actually not going to be a part of our lives (not something that I really want to discuss further), the doctor was quite curious and asked if my son’s father has Chinese blood and even asked if I have a photo of my son’s father. I remember telling him that I don’t think the father has Chinese blood nor does he have Chinese-like eyes. And no, I don’t have a photo of my son’s father (well, I think I don’t have one on hand that time but that’s no longer here nor there). Then he mentioned the dreaded words, which never really registered to me that time. He said that my little boy appears to have symptoms of Down Syndrome. The comment never really sank into me and I said that my little boy got his father’s eyes. Then that comment was somehow forgotten.
Day 4 of little Z’s life, he had a fever. His temperature went up to 37.8, if I remember correctly. I had him brought to the emergency room that same night where he got pricked a lot of times (which really made me so mad I could punch a few doctors in the face for making my little boy cry so hard he was running out of breath, literally). He was confined because of jaundice and signs of pneumonia. He was put on phototherapy, two types of antibiotics given at different intervals of the day, consumed 4 bags (I think) of dextrose to keep him hydrated and to have a way to give him his antibiotics for one week. It was again brought up by the pediatrician about the Down Syndrome symptoms. This was also brought about the fact that my son was born with bilateral congenital cataract. That was the time that I made some research about it.
You see, when I was pregnant, I read a lot about pregnancy and early life of an infant. I’ve seen a few articles related to Down Syndrome which I totally ignored that time thinking that my baby will not have it. So when little Z was confined during his first week of life, I read a lot of articles online about DS, the symptoms, the clinical features, what it really means to have DS. I was totally wracking my brains trying to absorb all information I read and at the same time, trying to deny the fact that my son has it.
I checked his eye and ear alignment. It looks fine to me. I checked his palms. He has normal palm creases, the gap between his toes appear normal, his fingers are not short and he did not have a cleft pallet. With the exemption of the shape of his eyes, his cataract, jaundice and pneumonia (which are all included as symptoms of Down syndrome), he appears to be a normal baby to me.
Third week of life, my little boy was again confined because he lost so much weight instead of gaining given that he was breastfed and he was literally feeding almost every two hours or less. I had more than enough milk supply for him and yet, he never gained weight. He lost so much weight that he became too weak to even suck from a bottle. He was again pricked for several blood tests, hooked on IV, given two types of antibiotics and he was put on tube feeding for two days so he can conserve what was left of his energy. I almost totally lost it that time (you can read about that here).
Two pediatricians were already looking after him during this time to the point that even his blood tests were brought to an oncologist for further consult. I was able to breathe a sigh of relief when there were no signs of cancer and was even cleared of it but the drawback to that sigh was further blood tests were required (this will be another story for another time). And then again, I was advised by the second pediatrician (whom I retained to be my little boy’s doctor back home) to have my son tested for Down syndrome. It was the first time I heard of the term Chromosomal Analysis.
The thing is, there is no such tests being done back home. I don’t think there even is a geneticist there. So I was referred to National Institute of Health. Since I had already decided to bring my baby to the big metro with me to consult with further doctors and specialists, I called my friend who is a doctor in PGH and asked for assistance. She was very helpful during those times when I had to bring my little boy within their area for lab tests.
From October 2013, I kind of chickened out of having my son go through chromosomal analysis. It was just a simple blood extraction really but I was more wary of the results. I was scared of the unknown. So I decided to push it out and prioritize my son’s other lab tests required by other doctors and also to have his lens extraction surgery scheduled.
Mid-December, a week prior to little Z’s surgery, I decided to have his blood sample extracted for the analysis. Since it takes about 2-4 weeks to get the results, I was thinking that somehow, if ever, we are already done with the major priority and I will just tackle on the next one if the result comes out positive of trisomy 21.
Surgery became successful, christmas and new year came and went. First week of January was little Z’s first eye doctor appointment of the year. The results of the analysis was already available but I made excuses not to go and get it. The week after, when my son was safely back home and I was alone here in the big metro, I took a leave from work and went to NIH to get the results. I never really wanted to look at the printed results that was placed on the table right in front of me. I was planning to just pick it up, fold it, come back home and read the results. But then the staff at the clinic placed a logbook just beside the results and asked me to sign. That’s where I saw it. Out of all the things on that single page result, my eyes zoomed in on what really mattered most.
For several months after little Z was born, I was praying so hard that he will be negative of DS, that his eyesight would miraculously be cleared of cataracts, that everything he just went through was somehow a fluke of nature. The three strands of chromosome 21 stood out from the page and like daggers, it stabbed my heart. It was hard to breathe, I had to work hard to keep my composure while I thank the lab staff as I handed her back the logbook. I had to keep a poker face as I walked along the hallway, keeping my pace when I really wanted to run. The short distance from the lab to the main door out of the building was short but it felt like miles long. The walls were closing in on me, my throat clogged to the point that I couldn’t really speak (and it was a good thing no one was with me else I would have broke down right there and then). I took a cab from there and tried to distract myself by visiting my bestfriend in the hospital who just gave birth. I never said anything about the results.
I didn’t want to go home so I dropped by the mall after the hospital. I bought my son another toy, a few supplies, then got myself a liter of beer. I just wanted to get drunk and drown myself. Until this day, I still remember what I’ve felt when I saw the results. I never wanted to cry but I really had no choice. I was hurt, I was in total pain, I felt betrayed, I lost all hope and faith. The feeling was like being sucker-punched several times more after you’ve yelled “uncle!”, more than getting your heart broken by a guy, your heart being ripped to pieces but without any blood spilling. It left like I was dying.
I mourned the loss of the ideal future that I had in mind for me and my son. I had to start from scratch. I had to come up with different plans. It was difficult. I struggled. Until now, I struggle. Sometimes when I see babies around Z’s age do things like standing with assistance, sitting unassisted, crawling on their own and all that, it pinches my heart. Because my little Z will never be like them. He’s got a different path in terms of achieving his milestones. I know that he will get there, too, but sometimes you can’t help but envy the others. While others go to malls and meet with friends and show off their little kids, our idea of bonding moment for Z’s first few months were doctor’s offices.
So, there you go. That’s the story of my little Z. Yes, he has Down Syndrome. No, I haven’t consulted with a geneticist yet. But I am already trying to have him scheduled for an appointment with a developmental therapist to assess his development. I am trying to get a way from too many doctors for now so I am not really in a hurry to do that. I just want to enjoy the time I spend with my little boy without thinking of doctor’s appointments and the likes for the meantime. For now.
#pout :P a rainy Easter Sunday play time at home…