My dearest, a little while longer and you will turn two years of age, and I will be experiencing the second year of my true happiness, my meaningful existence!
Before you came into this world, it was hard for me to understand the reason of my being and to figure out the mission I was destined to fulfill as long as I am here by God’s will or Mother Nature’s. You came so unexpectedly, but I had wished for you ever since my teenage years as I experienced those “big” loves when the most exciting sight would be that of me in front of a mirror with a pillow stuffed under my dress. Years passed by swiftly, but the 9 months with you in my belly were filled with joy and preparation for “my amazing creature”. That was the name of your first scrapbook , composed by ultrasounds (numerous which I took almost weekly because I started missing you ever since I first saw you sucking your thumb), tiny baby clothes I couldn’t get enough of ( you father is right to accuse me of excessive expenses), fixing your nursery room which was little, yet beautifully decorated with help from my friends. And lastly, your baby crib was complete with everything, up to that mobile hanging from the top and making the sweetest music. I couldn’t wait to see you laying in that little bed ( you had also become quite heavy during the scorching hot days of August).
I was determined to give birth to you naturally. I was afraid at first, but instead of reading piles of books motivating and supporting natural childbirth, I kept in mind that this was the most natural and oldest method in the world and that I was ready to feel every sweet and little pain caused by you. And that is the way it happened a late night of August, when heat made sleep impossible ( also your weight) I had decided to stay up while watching Tom& Jerry and feeling your little movements inside me. I felt your first knock at 2;30 am. I didn’t pay much attention to it because I had started recently to imagine some little kicks and come to the conclusion that it was all psychological fantasies. But No, this time it was truly you, the moment I would get to hold you in my arms and we would get to see your face was so close. We would test the names we had come up with for you. Which one was more suitable for a CEO, which one would have a noble and elegant signature, which would be the easiest to pronounce at international airports because you would get to travel so much to universities for your degree, and then PHD and why not, a name that would be suitable for an astronaut. The first astronaut from Albania.
In that modest delivery room of the state hospital, unfit for the delivery of a first child and your kicks had become more rapid and strong I couldn’t wait to give birth to you. All the time I found the strength to remind Moza (the midwife) not to forget to put you in my arms as soon as you came. I had read many books that claimed that would ease the trauma for you. You finally arrived at 07:35 a.m, a beautifully hot August morning and Moza put you right into my arms ( I wish we had a photograph of the moment) but she had to take you soon which irritated me. While they put you at that ugly hospital table I couldn’t stop praising your handsomeness and for a moment, I forgot all the prestigious jobs alla-astronaut. All I wanted was your happiness and health.
Dad and aunt Ami were waiting at the door. I sent them your first photography and restrained myself from sharing it immediately on Facebook because I wanted you all to myself for a while even though I couldn’t wait for the whole world to see you.
I kept telling Moza and the paediatrician that I didn’t want any mix-ups, I wanted you to be near me, in my room all the time and nowhere else and the number 5 we were both assigned of and had marked on our hands gave me a sense of security. So, for the rest of the day, you stayed there with me and all was good, but the next day, they took you away for a visitation which turned out to be longer than what I had thought. I couldn’t resist, I came up to the infantry room and saw you in the hands of the doctor and the midwife who were doing meticulous check-ups. They told me it was all routine and they would bring you back to me briefly. I hadn’t seen your dad or grandparents that day either but I didn’t put much thought into it because they were probably treating all the visitors who had come to congratulate us. As a matter of fact, my patience was over and I couldn’t wait to go back home and show you your room. The mandatory 24 hour stay was almost done. You were so beautiful and I was rightfully crazy about you and kept thinking to myself that all love I had known before seemed a joke compared to this.
You came home, filled with happiness, with celebration and I think you also liked the room. You got you first bath, only God knows what you put us through. Both your grandmas had a separate theory, one thought of pulling you from the legs, the other from the hands. With my heart racing, I tried to take a video of this beautiful moment. Your dad kept sweating trying to hold your head. The video is truly awesome!
10 days went by, full of concern just like every young mom raising her firstborn. I would see your dad getting worried, concerned to be more correct but very committed so that you wouldn’t miss a thing. I thought he was anxious of being a parent but I hoped it would go away with time so I didn’t start bombarding him with 1001 questions like I usually do. Meanwhile, your grandparents had this weird, pensive look as they came in and out of our house. I kept telling to myself that they were just tired of those 10 days of helping us. You were very handsome, so handsome and that was all that mattered.
One day of September, about 10 days after your birth I saw a mistake in your medical birth chart, something badly written but I could distinguish this number “21” under the column “birth defects” or something similar. I could also see this other word “suspect”. I tried to decipher the meaning of it with your dad but given that none of us could come up with an explanation, he convinced me that it wouldn’t be anything of great matter. I tried to skip that thought, but I couldn’t be as calm as I wished. The “Birth Defect” got stuck on my brain. But what defect was it about?! You were perfect, had a set of five fingers in each hand and foot, the most beautiful eyes in the world, wide just like me, a beautiful tiny nose and small ears just like your father and your hands were a little bit big but considering that your grandma’s hands are similar to tennis rackets, it was fine.
My mind was set, I couldn’t wait the customary 40-day period before taking you outside the house so I took you out in this new stroller we had just bought. I always wanted this other green one, but it was too expensive anyways. But before I could take you out with me, I had to consult the paediatrician and do your weight checks. We would only consult the best ones, the most well-known, most renowned, the ones where VIPs take their kids to… The ones who turned out to be morons, who didn’t take long before assessing that your problem was hugeeee, and that they couldn’t treat you because of their lack of experience in this field. Apparently, you had a defect and that is when I started to connect the dots : 21, trisomy, biology?! I knew I had read about it somewhere and that it wasn’t good and then one of the doctors used the term “down”!! I had heard of that too but I had no idea what it meant. I couldn’t stop myself from thinking that Down was an insulting word but my definition was just as vague. I had even done some tests about it, something called triple test? At the moment I kept thinking that the doctors were just fools who had no idea of what they were saying so me and your father went to the coffee shop across the street with you while we waited for our appointment with the next doctor, a foreign experienced one this time. Right there, inside that coffee shop, I kept laughing as hard as I could while and in the meantime seeing you, all so beautiful and serene in your stroller. I had never laughed that hard during insignificant talks with your father.
Dad finally gave up on the halls of that private hospital, where the doctor, a calm aged man confirmed with a 99.99% chance that you were a trisomy child, but another analysis called karyotype would leave no room for doubt. He gave up and rested himself on my shoulders crying. I had never seen your father act like that and in that moment I truly felt we were bonded to each other for life. I understood his strange behaviour… He had been keeping a secret from me for the past ten days. The doctor had given him the news about your extra chromosome 10 minutes after your birth. I cried massively too, without even knowing the reason why or what was so bad and hopeless about your case.
I started drawing a connection with autism, one of the recent “bad” topics concerning children’s health. I had no idea what this was either, but somewhere I must have heard about the lack of information of people affected by it. A certain feeling of unease overwhelmed me and I cried all day thinking of how I could stop you from self harming. I would quit my job and everything else, and be there 24 h with you? But how? All my life? And when I’ll be no longer around? How would I take you to the bathroom with me? And the list went on and on with such thoughts, until an evening when aunt Ami ( her eyes were sore and puffy from crying), aunt Teuta and aunt Mirela came and took me out of the house. I shared my concerns with them, and aunt Teuta who had known and worked with people just like you, let me know that not only would you never be dangerous to yourself or anybody, but even be a happy loving person. I finally felt like I could breathe freely. I wouldn’t have to constantly be afraid of you picking up a knife and hurting yourself. ( Your mother has always been known for her wild horror fantasies)
I was going to be a long night. You dad had fallen asleep on the couch next to me around 3 am. As dawn came, I had found a completely different information in comparison with the first ones. I had seen beautiful pictures of kids with the syndrome and had read the latest information on official pages about down syndrome. I was comforted, but not only. Now I was inspired by your arrival.
You were a delightful baby, at night you slept without any trouble. That morning, I picked you up in my arms, saw you and shed a tear for the last time. It was the last tear I shed for your arrival, for the way you were. I promised myself that I would do all that a mother can do and from that moment on, I prayed only about your health and happiness and celebrated your arrival and many other children like you all over Albania on the 21st of March, a Day dedicated to you. At the same time, many people were consoling me and had no idea as to why I was celebrating… Even today there are some people that cannot understand how I am happy with you.
I prayed on both Mosques and Churches and I keep praying every night about your happiness. ( Yes, your mother has her own definition of religious belief)
Lately, I have read an inspiring letter of a mother titled “I had no idea I wanted a child with Down syndrome, until I had one”. She was so right.
And you know the best part? Every day, you manage to exceed my expectations. I had thought that our relationship would be something along the lines of : “Me giving you all of me, my energy, my love , my service” But it turns out I have become dependent to your existence, your smile, your positive energy, your peacefulness, your will and determination that you display during therapy with auntie Ilda and Arta. They always say how cooperative you are. You have every ingredient necessary for my recipe of joy and fulfilment in this life. You are the irreplaceable part of my soul. I envy your beauty so much that sometimes, I wish I had an extra chromosome like yours.
Meanwhile, your mother keeps reading and getting informed about everything that might prove valuable to you. I have always thought and have been sure that as science progresses, it will find new ways of helping you become as functional ( I hate this word) as possible to yourself and on the other side, so that society and conditions, especially those we live in today, will be better in a future. So good and secure that I won’t be afraid of what is going to happen with you after me and dad are no longer here.
Lastly a news came from the world of science, a news that makes you pull your hair and scream. To be honest, not all of it was bad, there was good in there for you too but the core of it was ugly, terrifying, so cruel that it made me want to hug you tight and shield you from this world. According to this new information, scientists have discovered ways of curing some diseases with a high risk in people with Down syndrome such as Dementia (Alzheimer’s) . But that is not all. They have even found a way to shut down the extra chromosome in the embryo phase. So rephrased, they have found a way to eradicate people like you from existence. Frightening! At least for me and the mothers of Amri, Belkisa, Jasmina, Xhonatan, Mjalten, Gencin… our world would be meaningless.
I have often wondered what I would have done, had I found out about your extra chromosome in a time when “they” could have stopped your existence. I don’t know what I would have done. I don’t judge those parents or mothers who have had the possibility of finding out and make a “just” decision for them. I don’t judge those scientists who are just doing their jobs. I just wish that before they took such decisions, they’d have the chance of watching and feeling the importance of your existence, to us mothers at least. I am extremely happy of having the chance to see you, your existence and I thank God (universe, nature, fate…) of the great gift that is… you.
I hope you turn 100 years old my son. Even though there is yet not registered a person with DS at this age, I hope you make it as an astronaut, painter, DJ, IT, chef, and protector of yourself and your rights… but above all I hope you are happy and healthy in everyday of your life and that magical smile never disappears from your face, not even for a day. That smile that aunty Besa mentions in her song.
I, your father and your sister in your mother’s belly love you so much!
Wrote from the Founder of Down Syndrome Albania Foundation, Emanuela Pepkola- Zaimi ©August, 2012
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