On the second day of her life, J was greeted by two sleep deprived parents, one stoic grandma, an entourage of doctors and a more than a dozen nurses and midwives.....
Despite having slept soundly, only to be woken up for regular feeds, J continued to be blissfully unaware of the turmoil around her....she slept through most of the day, but my mid-day, the SHO started having doubts regarding her food intake. My milk had not yet come in (well, C-section with the added stress of the overwhelming events in the last 24 hours hardly helped) and J was beginning to look more floppy than the previous day. I was asked to feed her every hour or so, so that she would not get dehydrated. More blood was drawn from J to check for thyroid functions, to rule out leukemia and a whole lot of other conditions. She would shriek and protest each time she was pricked on her foot....but then eventually settle down. She seemed content in her green swaddle blanket, but within 24 hours of her birth, she seemed to have a preferance.....she wanted her palms exposed, no matter how snugly she was swaddled, within a few minutes, she would get her hands out. My little girl definitely had her own mind! When I was not looking at J, I seemed to be either drained out from all the crying or completely numb emotionally (but still crying, is that possible?) but each time I looked at her, I couldn't help but smile. She was my daughter! I was now a mom! for those few precious moments (when we were not discussing DS, or tests, prognosis, or practicalities) life couldn't have been better.....I feel guilty now that those moments didn't last longer. every now and then someone would enter the room to check on J or me, or both. Or the phone calls would start....or something else would come up. Nevertheless, I am glad that I did get to experience those few precious moments.....(and it is reassuring to know that despite all the stress, I was capable of experiencing them, that surely is a good sign, is it not?).
My mother had arrived early in the day with home cooked breakfast, and relieved P (my husband) so that he could freshen up and get changed at home before the consultant neonatologist arrived later that day. I was to find out later on that he had gone to his office instead (which was in the same building as my ward) and spoken to his supervisor-broken down while sharing the news with him; he had then called his parents, siblings, of his cousins and also my dear friend AL who had repeatedly called him and me and left worried voice mails. Each of these people had known P to be a happy-go-lucky man, ever the optimist, who stood tall no matter what the situation was, and for them to hear him sounding so low was hard to digest. While my friend, who is also a psychologist, knew very well what DS was and what the implications were, his family on the other hand had no clue. So P had to not only share the news, but had to go on to explain what it meant, what the future might hold etc and also deal with the denial that came his way in response. And as we had not received confirmation regarding the diagnosis, everyone he reached out to in search of support seemed to disregardthe gravity of the situation.
Meanwhile, back in the ward, my mother told me that she had telephoned my dad early that morning and as expected, he apparently did not bat an eyelid. She had also told my brother (who is much younger than me), and said that he was shocked but had quickly recovered and consoled my mother. I spoke to my father over the phone, shedding more tears than ever before and listened to his calm, soothing voice tell me that J was our little girl, that she would be loved by all no matter what. My brother, who by then had searched the internet for information on DS, called me and in his own reassuring way told me gently that J was no different to him than any other child I might have given birth to. Here was my little brother consoling me...and consoling my parents (as I was to later find out), growing up suddenly to shoulder this new responsibility of being a family counselor....
At that point, not knowing what the reaction of P's family was, I was thanking God that all of J's 'significant others' were taking the news in their stride, and I couldn't help but think to myself that within 48 hours, J had managed to bring us all so close to each other.
These thoughts were shattered soon after lunch time when P returned, and handed me the phone saying his parents wanted to talk to me. I only managed to say "hello?" when the barrage of accusations started....my MIL was shouting at me, telling me that I was bearing the brunt of my own decisions, that had I listened to the elders and carried out the prescribed religious rituals, and visited a particular temple in Mysore, my child would have been 'normal'. I blanked out completely, and all I remember is her saying "we told you....but...you didn't listen". After a while, for not having anything better to say, I simply said "I am sorry" and passed the phone back to my husband. 17 months on, even today, I chide myself. what was I apologising for? I was NOT sorry for having J (not then, and not now, and I'm pretty sure, NEVER in the future). That was the only time I spoke to my MIL (or anyone from P's family) after J's birth untill 2 months later when P's mom visited us in order to 'help' us out.
Strangely, despite the hostile conversation wearing me out, there were no more tears. I seemed to zone into an oneroid state, and I came to life only when I held my daughter. P, by then had brought me lots of printouts from downs' ed and other online sites. But I could not focus on anything. I was able to finally get up from a supine position, and take a shower, but that did nothing to refresh me. I wanted to know the result of the bood test, so that we could just "get on with life".
By mid-noon, the consultant and the SpR came to our room, and asked us to take a seat to hear the news. P and I sat down clutching each others' hand....bracing ourselves to hear what we already knew deep down in our hearts. Very gently, Dr.G broke the confirmatory news, clarifying that it was trisomy 21 (not mosaic). She allowed us to gather this news (I remember P and I shedding quiet tears, my mother turning towards the wall, her shoulders shuddering slightly....and I knew she was crying...while J slept peacefully in her glass crib). I asked my mother to help me carry J, and there we sat, P, J and I, huddling close to each other, while Dr.G went over the protocol of what was to follow. They had notified the Down's team at N'ham, they had spoken to the paediatric cardiologist for an echo asap, and made other arrangements for a few more blood tests. She mentioned that she would have ordinarily gone on to explain more about DS, but knowing P and my professional backkground, she was hesitant to do so. We told her to treat us like 'blank slates' and tell us whatever she had in mind. She explained briefly about the resources available, and suggested that she wait for one of the members of the downs' clinic to work with us. Then, cautiously, Dr. G went on to mention that all reactions were normal- while grief was inevitable, denial and numbness were not uncommon too. And many parents often have the option of giving the child up for adoption, and if we did do that no body would judge us. P and I looked up at her with shocked expressions- the thought of giving J up had never occurred to us, but we said nothing. We thanked the doctors, and once they left, there seemed to be a more calm-albeit sad- atmosphere prevailing in the room. Now we knew. For sure. As I held J, and saw my beautiful daughter with the peaches-and-cream complexion, I could not help but wonder "how?", "why?", "why us?".....without emotion, I voiced these questions, and all my mother said was "why not us?".
As it was time for my mother to leave, we quickly made a couple of phone calls (to my dad, brother, and a cousin who lived close by). AC came to pick my mother up, he took one look at us, and knew that it was all confirmed....but did not say anything. He spoke to J.....P and me, and whisked my mother away. As we settled down for another night, we felt spent....I asked P to put J beside me before he went to bed, and as the 3 of us lay down, I could only feel a fierce sense of protectiveness....this was my family, and no one in the world could tear us apart. P and I talked late into the night....we wondered aloud, had she not had DS, if all were 'well' so to speak, what was the guarantee that calamity would not strike in the future? which child came into this world with the assurance that he or she would be disease free, accident free? There were no guarantees....none what so ever. Only a few hours earlier, the alarm in the post-natal ward had gone off, and over the shrill ring of the alarm, we heard the helpless cry of a woman....and then we heard her weeping uncontrollably saying repeatedly "why God...why....? my baby...."
We found out that her newborn baby had died (not sure how)....while our hearts went out to the lady and her family, we were selfishly thanking our stars that J was alive and well.
We were thankful that the diagnosis was made within 24 hours....we were glad that we were in the hands of people who seemed to know what they were doing.
I did not know about the various medical conditions associated with DS, and as P listed them out, I could feel my eyes brimming with tears....how much more was in store? Why can't my daughter be given a clean bill of health?
There we were, oscillating between 'thanking our stars' to asking "why? how much more?"
As P drifted off to sleep, I lay there, wide awake, holding my daughter close to me (against the advise of the ward staff, who kept insisting that she would be more comfortable in her crib).
I couldn't help but go over the sequence of events in the last 48 hours.....again and again. And although I accepted the fact that J had DS, each time I looked at her, I could not believe that there was an extra chromosome in each cell of her body. And although I know that I may never get an answer, I couldn't help but ask "how did this happen?".....
Despite having slept soundly, only to be woken up for regular feeds, J continued to be blissfully unaware of the turmoil around her....she slept through most of the day, but my mid-day, the SHO started having doubts regarding her food intake. My milk had not yet come in (well, C-section with the added stress of the overwhelming events in the last 24 hours hardly helped) and J was beginning to look more floppy than the previous day. I was asked to feed her every hour or so, so that she would not get dehydrated. More blood was drawn from J to check for thyroid functions, to rule out leukemia and a whole lot of other conditions. She would shriek and protest each time she was pricked on her foot....but then eventually settle down. She seemed content in her green swaddle blanket, but within 24 hours of her birth, she seemed to have a preferance.....she wanted her palms exposed, no matter how snugly she was swaddled, within a few minutes, she would get her hands out. My little girl definitely had her own mind! When I was not looking at J, I seemed to be either drained out from all the crying or completely numb emotionally (but still crying, is that possible?) but each time I looked at her, I couldn't help but smile. She was my daughter! I was now a mom! for those few precious moments (when we were not discussing DS, or tests, prognosis, or practicalities) life couldn't have been better.....I feel guilty now that those moments didn't last longer. every now and then someone would enter the room to check on J or me, or both. Or the phone calls would start....or something else would come up. Nevertheless, I am glad that I did get to experience those few precious moments.....(and it is reassuring to know that despite all the stress, I was capable of experiencing them, that surely is a good sign, is it not?).
My mother had arrived early in the day with home cooked breakfast, and relieved P (my husband) so that he could freshen up and get changed at home before the consultant neonatologist arrived later that day. I was to find out later on that he had gone to his office instead (which was in the same building as my ward) and spoken to his supervisor-broken down while sharing the news with him; he had then called his parents, siblings, of his cousins and also my dear friend AL who had repeatedly called him and me and left worried voice mails. Each of these people had known P to be a happy-go-lucky man, ever the optimist, who stood tall no matter what the situation was, and for them to hear him sounding so low was hard to digest. While my friend, who is also a psychologist, knew very well what DS was and what the implications were, his family on the other hand had no clue. So P had to not only share the news, but had to go on to explain what it meant, what the future might hold etc and also deal with the denial that came his way in response. And as we had not received confirmation regarding the diagnosis, everyone he reached out to in search of support seemed to disregardthe gravity of the situation.
Meanwhile, back in the ward, my mother told me that she had telephoned my dad early that morning and as expected, he apparently did not bat an eyelid. She had also told my brother (who is much younger than me), and said that he was shocked but had quickly recovered and consoled my mother. I spoke to my father over the phone, shedding more tears than ever before and listened to his calm, soothing voice tell me that J was our little girl, that she would be loved by all no matter what. My brother, who by then had searched the internet for information on DS, called me and in his own reassuring way told me gently that J was no different to him than any other child I might have given birth to. Here was my little brother consoling me...and consoling my parents (as I was to later find out), growing up suddenly to shoulder this new responsibility of being a family counselor....
At that point, not knowing what the reaction of P's family was, I was thanking God that all of J's 'significant others' were taking the news in their stride, and I couldn't help but think to myself that within 48 hours, J had managed to bring us all so close to each other.
These thoughts were shattered soon after lunch time when P returned, and handed me the phone saying his parents wanted to talk to me. I only managed to say "hello?" when the barrage of accusations started....my MIL was shouting at me, telling me that I was bearing the brunt of my own decisions, that had I listened to the elders and carried out the prescribed religious rituals, and visited a particular temple in Mysore, my child would have been 'normal'. I blanked out completely, and all I remember is her saying "we told you....but...you didn't listen". After a while, for not having anything better to say, I simply said "I am sorry" and passed the phone back to my husband. 17 months on, even today, I chide myself. what was I apologising for? I was NOT sorry for having J (not then, and not now, and I'm pretty sure, NEVER in the future). That was the only time I spoke to my MIL (or anyone from P's family) after J's birth untill 2 months later when P's mom visited us in order to 'help' us out.
Strangely, despite the hostile conversation wearing me out, there were no more tears. I seemed to zone into an oneroid state, and I came to life only when I held my daughter. P, by then had brought me lots of printouts from downs' ed and other online sites. But I could not focus on anything. I was able to finally get up from a supine position, and take a shower, but that did nothing to refresh me. I wanted to know the result of the bood test, so that we could just "get on with life".
By mid-noon, the consultant and the SpR came to our room, and asked us to take a seat to hear the news. P and I sat down clutching each others' hand....bracing ourselves to hear what we already knew deep down in our hearts. Very gently, Dr.G broke the confirmatory news, clarifying that it was trisomy 21 (not mosaic). She allowed us to gather this news (I remember P and I shedding quiet tears, my mother turning towards the wall, her shoulders shuddering slightly....and I knew she was crying...while J slept peacefully in her glass crib). I asked my mother to help me carry J, and there we sat, P, J and I, huddling close to each other, while Dr.G went over the protocol of what was to follow. They had notified the Down's team at N'ham, they had spoken to the paediatric cardiologist for an echo asap, and made other arrangements for a few more blood tests. She mentioned that she would have ordinarily gone on to explain more about DS, but knowing P and my professional backkground, she was hesitant to do so. We told her to treat us like 'blank slates' and tell us whatever she had in mind. She explained briefly about the resources available, and suggested that she wait for one of the members of the downs' clinic to work with us. Then, cautiously, Dr. G went on to mention that all reactions were normal- while grief was inevitable, denial and numbness were not uncommon too. And many parents often have the option of giving the child up for adoption, and if we did do that no body would judge us. P and I looked up at her with shocked expressions- the thought of giving J up had never occurred to us, but we said nothing. We thanked the doctors, and once they left, there seemed to be a more calm-albeit sad- atmosphere prevailing in the room. Now we knew. For sure. As I held J, and saw my beautiful daughter with the peaches-and-cream complexion, I could not help but wonder "how?", "why?", "why us?".....without emotion, I voiced these questions, and all my mother said was "why not us?".
As it was time for my mother to leave, we quickly made a couple of phone calls (to my dad, brother, and a cousin who lived close by). AC came to pick my mother up, he took one look at us, and knew that it was all confirmed....but did not say anything. He spoke to J.....P and me, and whisked my mother away. As we settled down for another night, we felt spent....I asked P to put J beside me before he went to bed, and as the 3 of us lay down, I could only feel a fierce sense of protectiveness....this was my family, and no one in the world could tear us apart. P and I talked late into the night....we wondered aloud, had she not had DS, if all were 'well' so to speak, what was the guarantee that calamity would not strike in the future? which child came into this world with the assurance that he or she would be disease free, accident free? There were no guarantees....none what so ever. Only a few hours earlier, the alarm in the post-natal ward had gone off, and over the shrill ring of the alarm, we heard the helpless cry of a woman....and then we heard her weeping uncontrollably saying repeatedly "why God...why....? my baby...."
We found out that her newborn baby had died (not sure how)....while our hearts went out to the lady and her family, we were selfishly thanking our stars that J was alive and well.
We were thankful that the diagnosis was made within 24 hours....we were glad that we were in the hands of people who seemed to know what they were doing.
I did not know about the various medical conditions associated with DS, and as P listed them out, I could feel my eyes brimming with tears....how much more was in store? Why can't my daughter be given a clean bill of health?
There we were, oscillating between 'thanking our stars' to asking "why? how much more?"
As P drifted off to sleep, I lay there, wide awake, holding my daughter close to me (against the advise of the ward staff, who kept insisting that she would be more comfortable in her crib).
I couldn't help but go over the sequence of events in the last 48 hours.....again and again. And although I accepted the fact that J had DS, each time I looked at her, I could not believe that there was an extra chromosome in each cell of her body. And although I know that I may never get an answer, I couldn't help but ask "how did this happen?".....
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