Not all Superheroes have Capes
My guest blogger is Viba, a colleague who has met several `motherhood’ challenges. I am sure all of us who read this blog will learn a lot from her and we thank her for agreeing to share her story with us. I know that it must have required a lot of courage.
But then as you will see, she is no ordinary mum!
Planning a trip to Italy and discovering you're actually in Holland
When Dr. Chandra invited me to write a guest post on my experience of motherhood, I had a good think about it. I wondered how much of the post-partum experience goes into the whole experience of motherhood. I have been a mother for nearly 5 years now, mum to a nearly 5 year old daughter and a nearly 2 and a half year old son. I wondered which post-partum period I should write about because both had me functioning, in large parts, on “autopilot” – due to various life events acting as significant stressors. In the case of my second born it was due to the grief over the untimely and sudden death of my mother within the first month of my having given birth while in the case of my first born, it was due to the stressors that were part and parcel of an unexpected diagnosis. The first time around, I became not only a ‘mother’, but a ‘special needs mum’….and to this day I find myself wondering how different is it from being a ‘regular mum’.
The post-partum period is probably technically the beginning of the whole experience of motherhood and thus I decided to write about my experience as a first-time mother. Let me begin by setting the stage- my husband and I had been married for a few years, we had reached that stage where we felt ready to start a family. Thriving in our newly found success and comfortable lives, and giddy with the joy of impending parenthood, we were eagerly looking forward to the arrival of our daughter (yes, we knew). Having read all the pregnancy manuals we could lay our hands on, carefully choosing furniture for the nursery, short-listing a rather long list of names, painstakingly selecting her “going home” clothes and all the bits and bobs that go into welcoming a first child, we walked confidently into the open doors of the OT and waited impatiently for my doctor to yank her out. As I was having a cesarean section, I was quite relaxed, happy to be comfortably numb waist down (little did I know that I would be willing my legs to get back their sensation in less than a couple of hours), awake and alert, ears straining for the birth cry. And then she ‘arrived’ - kicking and screaming the place down with a head full of thick black hair and extremely long finger nails. Ten fingers, ten toes, all in place- and my final cue came from the beaming face of my husband….I breathed a sigh of relief, held her close to me- did the mandatory skin-to-skin and thought “right, stitch me up, I need to take my baby home”. But something didn’t seem right. There was buzz, a negative kind of buzz in the theatre. Within two hours of our daughter’s birth we’d guessed something was not quite right as too many people had walked in to check our little girl. Finally a chirpy, overly cheerful registrar walked in and trying to sound breezy she started off by saying our daughter was beautiful, that she had beautiful hair, beautiful almond shaped eyes….(and we didn’t quite register the rest). My husband and I froze. We clung to each other, not wanting to hear another word. Everything stopped and came to a standstill. This lady was trying to tell us that our daughter had Downs Syndrome. How could that be? When the radiologist who did my NT scan categorically stated “you can safely rule out DS”, this bunch of doctors must have got it wrong, surely? Then began the series of tests…while I lay helpless in bed as my wooden legs were unable to move my husband had to do the painful task of taking our few-hours old baby for blood tests. I just wanted my baby back in my arms – for as long as I held her I seemed incapable of tears- but the minute she was away from me I seemed to collapse into a sobbing heap on my pillow or into my mother’s arms, wallowing in self pity asking seemingly irrelevant questions “how?”, “why?”, “now what?”. As the day progressed, my little baby-exhausted from all the pricking and prodding lay fast asleep in her crib while I was inconsolable. While my husband was outside making phone calls, I turned to my mother asking “why me, why us?” and all she said in her calm voice was “why not?”.
That shut me up for a while, forcing me into doing a quick recap of what Downs Syndrome was. My husband and I spent that whole day alternating between sobbing and reading up about Downs Syndrome (I thought we knew it all….how wrong I was!), and then weeping again. Before the day ended, we managed to gather ourselves together and felt terribly guilty that we had forgotten to name our baby….in our grief over the death of an “ideal and perfect baby” that we had expected, we had forgotten to celebrate the arrival of our daughter. We made a conscious decision that from then on, we’d try not to dwell too much on negative feelings stemming from our own expectations- it would just not be fair on our daughter. She was after all our daughter and we were her parents- a very simple equation that should not be diluted by anything other than unconditional love (easier said than done….but definitely worth trying).
Once her diagnosis was confirmed by a simple blood test, as far as I was concerned, it was time to move on. Having been taken on by the early intervention team, the next few days (in fact the next few months) were a blur of invasive and non-invasive testing to check our daughter for associated medical conditions (the list was so very long!). While in hospital, I was being watched like a hawk by the ward staff for signs of rejection. I too was watching myself for such signs….but there were clearly none. It is difficult to put in words how it was possible to allow two seemingly contrasting emotions to coexist…both my husband & I were still a bit stunned and tended to get sucked into a sort of existential angst, but at the same time we were overjoyed to be parents. Each time I saw or held our daughter it was with inexplicable joy- here she was our flesh and blood, how could we not love and cherish her? As other mothers walked in and out of the ward with their brand new babies, I was hobbling along long corridors (staples and stitches intact) with mine for her echo, for more blood tests, for all sorts of scans and screening tests, thinking this would last forever. The ‘autopilot’ mode helped us through the medical investigations- each time steeling ourselves for the worst possible outcome, and not really reacting when some tests came back negative, thinking there was more to go through.
Gradually, congratulatory cards trickled in, people dropped in to see our daughter…..but these social situations were extremely awkward as no one knew what to say and we didn’t know what they should be saying either. As I read somewhere, condolences in the absence of a corpse is just not right- we had several of those. There were others who hid behind medical terminologies and characterized our daughter in terms of symptoms and such. Then there was the blame that I had to deal with from some of the extended family the usual “you left it too late” (I was 30), “you didn’t agree to rituals or ceremonies during the pregnancy”, this is the wrath of God-sort of reaction (I never in my wildest dreams thought I would have to deal with blame and discrimination rooted in something I had absolutely no control over). There were the “they are very happy kids”, “they are extremely loving” sort of comments (who was “they”? how did these people know?). There were people who sent me newspaper clippings, internet links and books on high-functioning people who had Downs Syndrome (I wanted to scream “please stop it”). And then there were those who just disappeared from our lives. Very few actually responded with “congratulations on the birth of your daughter”. In retrospect, I am extremely grateful to all those who took time out to make contact with us for they, in their own way, were trying to reach out. But during those months, I was angry at such reactions. I was angry that most of the people who would be a part of my daughter’s social circle were uncomfortable with disability of any sort. I was angry with the perceived stigma. Along with the anger, there was the tendency to suddenly find tears streaming down my face (especially when I went to toy stores or the local Mothercare). There was a sudden inability to contribute to any conversation with my antenatal group- I could not contribute to discussions on nappy rash and colic, as my concerns were a bit different to theirs, more on the line of “would the holes in her tiny heart have spontaneously closed in this month’s scan?”, “would she be able to feed today?”. While I watched my friends breastfeed, I would be overcome by a kind of sadness that I find very difficult to put into words. Yes I would humorously compare myself to a cow as all I did was grazed and expressed milk, but deep down I was shattered- I am one who- for good or bad- has always defined herself in roles and in my mind a “good mother” was one who nursed her infant, and there I was struggling to feed my daughter (my daughter had severe hypotonia and could not suckle, and her heart defects probably didn’t help either). Those close to me went to great lengths to explain that it really didn’t matter but somehow it mattered to me. Fed up of my low morale, my husband put it across rather bluntly: we had many battles to fight, it was up to me how I wanted to use my resources. I told myself that breastfeeding was overrated and tried my hardest to stop this whole ‘issue’ from affecting me (but it clearly made an impact as I found out later- I went overboard with my son nursing him for months after his first birthday, just to prove to myself that I could do it). In those initial months, I sought solace with a group of mothers in the support group I started attending. Here, it was perfectly ‘normal’ to discuss NG feeding, open heart surgery, blood tests for leukemia, the ‘red book’ with the extra pages of separate norms for children with Downs Syndrome. Just to give an example, in our world a common cold was not ‘common’ at all- it meant more floppiness, reduced feeding, drop in the growth chart, reduced hearing, associated eye infection, possible progression to pneumonia- about 20-30 days for a full recovery. As expected, in those early months I was- for the lack of a better term- overwhelmed. It was as if I was torn by all sorts of conflicting thoughts and emotions, I was worn out physically and emotionally. I noticed that I had stopped eating (surviving on a bit of porridge and toast), stopped sleeping, my back was giving up, and most alarmingly I no longer felt the kind of joy I initially felt when I held my daughter. The final straw that broke the camel’s back came on boxing day 2008, when I had a bit of a meltdown of sorts and that was when I realised I needed help. We decided it would be good for me to get as far away as possible from the dark dreary winter months, and I headed to my parents’ back in India. Surrendering my daughter to them, I retreated into a dark place- I would still be with my daughter- feed her, bathe her, change her, take her for walks- but as soon as she dozed off (which was quite often) I was back in that cold place. I sought help informally and got convinced to start on antidepressants- “just to take the edge off”- and to this date I feel that was the best decision I took. As a psychologist, I had always been loathe to relying on chemicals to induce change, but I now recognize the value of these drugs when used appropriately. Within a month, I was better- I could “feel” again, I could feel the same visceral gush of ‘mumsy’ emotions each time I looked at my daughter, I was able to concentrate on things I was doing, I regained my appetite and I was sleeping better (as any new mother would tell you, sleep is a luxury in those early days, and the ability to sleep soundly for short bursts is the crucial trick one has to learn to function effectively!). It was as if I could see the different hues of colour again. I guess those few weeks of ‘respite’ helped consolidate my emotions, weigh out rationally the implications of having a child with special needs, and reassign a slightly altered view to events in life. Simply put, it helped me realize that all my daughter was telling me was “this is who I am, accept me as I am” instead, here I was getting bogged down by what should be inconsequential things. Is that not what each child would want? In that one month, my understanding of ‘normality’ underwent a transformation that I feel has helped me for the better. I don’t know if what I experienced was post-partum depression or an affective response to severe stress (my husband told me much later that he and my parents were literally using the ‘handle with care’ placard to communicate to each other about my mood in the first/second month after our daughter was born….it was apparently like treading on egg shells…. I was apparently highly irritable, edgy and restless- I genuinely do not recollect being that way!). It does not matter what the label is, what matters is that it was a period on internal turmoil that got worse due to its lack of fit with my external persona. Its resolution was crucial to determine my future path, and I can confidently vouch for the fact that I came out stronger. It helped that I was able to adopt some aspects of my husband’s take on the situation –of “let’s pick our battles wisely”- to most situations. I learned to turn a blind eye and a deaf ear to those things that had the potential to cause me pain (at the cost of probably upsetting others). By being able to remind myself that I had limited reserves I was able to get by and get through a phase that at one point seemed like a dead end. By allowing myself to use help and support, I was able to get back into a state of equilibrium, both physically and emotionally. My experience of ‘motherhood’ became grounded in this new foundation, and in a way I am glad I had the rough start for now I know the value of Health. Two years on, with the added life event of the loss of the most significant person in my life within a month of my second child’s birth, the finality of death taught me another valuable lesson: the importance of cherishing the here and now. The whole experience of being a mother has thus been about getting in sync with the kids and tuning in to their needs; about striking (what you hope is) the right balance between being fiercely overprotective and learning to let go; About being watchful yet not overbearing, vigilant not smothering, about loving without ‘spoiling’ if you know what I mean…..
I look back on the last 5 years and I wouldn’t be entirely honest if I said it was all peachy. Yes, we’ve had some scary experiences- I have learnt it the hard way that physical health is most important. It was not easy handing over our daughter to teams in scrubs for her surgeries, it was not easy watching her struggle with things that come naturally to most of her peers (feeding, temperature regulation, night-time breathing, crawling, walking, dexterity etc), and it is definitely not easy to see her reaction to perceived rejection (sadly, this world is still inhabited by a few who treat my daughter differently). I continue to get angry when people sometimes talk to her in a high-pitched motherese (she’s not deaf, really!), when they give my nearly five year old daughter toys labeled “for 2-3 year olds”, when friends surreptitiously assess her cognitive skills, when people pathologise her every move (“they” tend to sit in a W position, “they” are visual learners), and most of all when people ask “but didn’t you know during your pregnancy” (does that imply that I should have terminated had I known her diagnosis - why is it that one extra chromosome somehow undermines the value of her life?). But I have learned to respond to these situations in a slightly better way than before. Largely, it has been the positives that have paved the way to where we are, where I am. It has been wonderful to see my daughter blossom into a confident young girl, full of life. She loves her school (“oh does she go to a mainstream school?”….”YES”) and has quickly shattered a few myths while there (also is quite the star!), Like any other 5 year old she loves disney princesses, fairies and magic wands. She is a ‘girly’ girl (give her lego, and she’ll be building a ‘picnic’ area with pretty flowers while my son will be building towers and rockets). She can be unreasonable with her demands but quick to say “that’s not fair” when we request something that she does not want to do. She is a doting (yet bossy- as need be) older sister who while ensuring she is saving a few goodies for her little brother has clearly established a hierarchy (no doubts left as to who is in charge). It melts my heart when she reminds her brother to say his ‘please’ and ‘thank you’, and when she patiently explains ‘complicated’ terminology in Peppa Pig to him (that “parents is Amma & Pappa”; or “cub is a baby lion”) or teaches him how to use certain aps on the tablet. The reaction is even more visceral (in a good way!) when at times I can see that my son is allowing himself to be “taught” even though he may know a few of the things his sister is telling him about.
As I sit here typing this post watching one child dressed as Rapunzel, and the other as Spiderman both busy assembling a train-track, I am thinking once again about the Big question in my mind- how different is it to be a ‘special needs mum’ as against a ‘regular mum’….and the answer is I don’t know. I don’t know if parenting our son has been easier because he is the second born, or because he doesn’t have Downs Syndrome, or because we are somehow ‘wiser’….I don’t even know if such a division exists or if they are both part of the same continuum. Its all a matter of degree and at the end of the day, what’s in a name? If someone asked me, I’d stick to “I’m just a mum”…..for that’s what its been about.
Motherhood for me has been about getting in touch with my strong need to nurture (and resisting the strong urge to throw both of them in the recycling bin, especially at around 6 pm on a Friday), about learning new skills while character analyzing cartoons, about being patient and firm and yet losing my temper, relaxed lazy weekends when all 4 are huddled together interspersed by frantic praying for quick recoveries and night time trips to the A & E, about tears of joy at school nativities- achievements at nurseries and the usual embarrassment at superstore tantrums, about trying to hold a conversation over the phone or trying to meet a deadline while two under-fives are screaming for attention and at the same time waiting each morning for 2 sleeping angels to wake up and start their demands, about every 10th utterance being “No!” or “Put that down!” only to be told “say please”…. About exhaustion and frustrations, about prioritizing and time management, about deprived sleep and melting hearts, pride, joy, and inexplicable intensity of love.
My daughter at the age of 5 years has learned to quickly gauge what she can or cannot do in any given situation, and although fiercely independent, she does not mind saying “can you help me, please?” (be it for unscrewing a lid, opening a jammed door, climbing a high step or tying her shoe laces). Why is it then that we, as grown-ups, find it so difficult to reach out when we need to? It took me nearly 6 months to recognize signs of spiraling down (despite all the training or probably due to it?) but I’m ever so glad I had help at hand when I did seek it. The beginning of my journey as a mother was very rocky indeed, but it probably was needed to smooth the path ahead.
Without being patronizing, I’d like to add that no self-help manual or chart-topper book can tell you how to be a mother or what to “really” expect when you are expecting. As far as I know, no child comes with a guarantee. While a large majority of pregnancies and births may be uneventful, there are those who have had to explore the road less travelled due to various reasons. As Jennifer Groneberg succinctly puts it in her book, “it's like planning a trip to Italy, only to get off the plane and discover you're actually in Holland. You need a new road map, and you need it fast...”. But sketching your own map and “experiencing Holland in its true glory” can be a very enriching experience.
My guest blogger is Viba, a colleague who has met several `motherhood’ challenges. I am sure all of us who read this blog will learn a lot from her and we thank her for agreeing to share her story with us. I know that it must have required a lot of courage.
But then as you will see, she is no ordinary mum!
Planning a trip to Italy and discovering you're actually in Holland
When Dr. Chandra invited me to write a guest post on my experience of motherhood, I had a good think about it. I wondered how much of the post-partum experience goes into the whole experience of motherhood. I have been a mother for nearly 5 years now, mum to a nearly 5 year old daughter and a nearly 2 and a half year old son. I wondered which post-partum period I should write about because both had me functioning, in large parts, on “autopilot” – due to various life events acting as significant stressors. In the case of my second born it was due to the grief over the untimely and sudden death of my mother within the first month of my having given birth while in the case of my first born, it was due to the stressors that were part and parcel of an unexpected diagnosis. The first time around, I became not only a ‘mother’, but a ‘special needs mum’….and to this day I find myself wondering how different is it from being a ‘regular mum’.
The post-partum period is probably technically the beginning of the whole experience of motherhood and thus I decided to write about my experience as a first-time mother. Let me begin by setting the stage- my husband and I had been married for a few years, we had reached that stage where we felt ready to start a family. Thriving in our newly found success and comfortable lives, and giddy with the joy of impending parenthood, we were eagerly looking forward to the arrival of our daughter (yes, we knew). Having read all the pregnancy manuals we could lay our hands on, carefully choosing furniture for the nursery, short-listing a rather long list of names, painstakingly selecting her “going home” clothes and all the bits and bobs that go into welcoming a first child, we walked confidently into the open doors of the OT and waited impatiently for my doctor to yank her out. As I was having a cesarean section, I was quite relaxed, happy to be comfortably numb waist down (little did I know that I would be willing my legs to get back their sensation in less than a couple of hours), awake and alert, ears straining for the birth cry. And then she ‘arrived’ - kicking and screaming the place down with a head full of thick black hair and extremely long finger nails. Ten fingers, ten toes, all in place- and my final cue came from the beaming face of my husband….I breathed a sigh of relief, held her close to me- did the mandatory skin-to-skin and thought “right, stitch me up, I need to take my baby home”. But something didn’t seem right. There was buzz, a negative kind of buzz in the theatre. Within two hours of our daughter’s birth we’d guessed something was not quite right as too many people had walked in to check our little girl. Finally a chirpy, overly cheerful registrar walked in and trying to sound breezy she started off by saying our daughter was beautiful, that she had beautiful hair, beautiful almond shaped eyes….(and we didn’t quite register the rest). My husband and I froze. We clung to each other, not wanting to hear another word. Everything stopped and came to a standstill. This lady was trying to tell us that our daughter had Downs Syndrome. How could that be? When the radiologist who did my NT scan categorically stated “you can safely rule out DS”, this bunch of doctors must have got it wrong, surely? Then began the series of tests…while I lay helpless in bed as my wooden legs were unable to move my husband had to do the painful task of taking our few-hours old baby for blood tests. I just wanted my baby back in my arms – for as long as I held her I seemed incapable of tears- but the minute she was away from me I seemed to collapse into a sobbing heap on my pillow or into my mother’s arms, wallowing in self pity asking seemingly irrelevant questions “how?”, “why?”, “now what?”. As the day progressed, my little baby-exhausted from all the pricking and prodding lay fast asleep in her crib while I was inconsolable. While my husband was outside making phone calls, I turned to my mother asking “why me, why us?” and all she said in her calm voice was “why not?”.
That shut me up for a while, forcing me into doing a quick recap of what Downs Syndrome was. My husband and I spent that whole day alternating between sobbing and reading up about Downs Syndrome (I thought we knew it all….how wrong I was!), and then weeping again. Before the day ended, we managed to gather ourselves together and felt terribly guilty that we had forgotten to name our baby….in our grief over the death of an “ideal and perfect baby” that we had expected, we had forgotten to celebrate the arrival of our daughter. We made a conscious decision that from then on, we’d try not to dwell too much on negative feelings stemming from our own expectations- it would just not be fair on our daughter. She was after all our daughter and we were her parents- a very simple equation that should not be diluted by anything other than unconditional love (easier said than done….but definitely worth trying).
Once her diagnosis was confirmed by a simple blood test, as far as I was concerned, it was time to move on. Having been taken on by the early intervention team, the next few days (in fact the next few months) were a blur of invasive and non-invasive testing to check our daughter for associated medical conditions (the list was so very long!). While in hospital, I was being watched like a hawk by the ward staff for signs of rejection. I too was watching myself for such signs….but there were clearly none. It is difficult to put in words how it was possible to allow two seemingly contrasting emotions to coexist…both my husband & I were still a bit stunned and tended to get sucked into a sort of existential angst, but at the same time we were overjoyed to be parents. Each time I saw or held our daughter it was with inexplicable joy- here she was our flesh and blood, how could we not love and cherish her? As other mothers walked in and out of the ward with their brand new babies, I was hobbling along long corridors (staples and stitches intact) with mine for her echo, for more blood tests, for all sorts of scans and screening tests, thinking this would last forever. The ‘autopilot’ mode helped us through the medical investigations- each time steeling ourselves for the worst possible outcome, and not really reacting when some tests came back negative, thinking there was more to go through.
Gradually, congratulatory cards trickled in, people dropped in to see our daughter…..but these social situations were extremely awkward as no one knew what to say and we didn’t know what they should be saying either. As I read somewhere, condolences in the absence of a corpse is just not right- we had several of those. There were others who hid behind medical terminologies and characterized our daughter in terms of symptoms and such. Then there was the blame that I had to deal with from some of the extended family the usual “you left it too late” (I was 30), “you didn’t agree to rituals or ceremonies during the pregnancy”, this is the wrath of God-sort of reaction (I never in my wildest dreams thought I would have to deal with blame and discrimination rooted in something I had absolutely no control over). There were the “they are very happy kids”, “they are extremely loving” sort of comments (who was “they”? how did these people know?). There were people who sent me newspaper clippings, internet links and books on high-functioning people who had Downs Syndrome (I wanted to scream “please stop it”). And then there were those who just disappeared from our lives. Very few actually responded with “congratulations on the birth of your daughter”. In retrospect, I am extremely grateful to all those who took time out to make contact with us for they, in their own way, were trying to reach out. But during those months, I was angry at such reactions. I was angry that most of the people who would be a part of my daughter’s social circle were uncomfortable with disability of any sort. I was angry with the perceived stigma. Along with the anger, there was the tendency to suddenly find tears streaming down my face (especially when I went to toy stores or the local Mothercare). There was a sudden inability to contribute to any conversation with my antenatal group- I could not contribute to discussions on nappy rash and colic, as my concerns were a bit different to theirs, more on the line of “would the holes in her tiny heart have spontaneously closed in this month’s scan?”, “would she be able to feed today?”. While I watched my friends breastfeed, I would be overcome by a kind of sadness that I find very difficult to put into words. Yes I would humorously compare myself to a cow as all I did was grazed and expressed milk, but deep down I was shattered- I am one who- for good or bad- has always defined herself in roles and in my mind a “good mother” was one who nursed her infant, and there I was struggling to feed my daughter (my daughter had severe hypotonia and could not suckle, and her heart defects probably didn’t help either). Those close to me went to great lengths to explain that it really didn’t matter but somehow it mattered to me. Fed up of my low morale, my husband put it across rather bluntly: we had many battles to fight, it was up to me how I wanted to use my resources. I told myself that breastfeeding was overrated and tried my hardest to stop this whole ‘issue’ from affecting me (but it clearly made an impact as I found out later- I went overboard with my son nursing him for months after his first birthday, just to prove to myself that I could do it). In those initial months, I sought solace with a group of mothers in the support group I started attending. Here, it was perfectly ‘normal’ to discuss NG feeding, open heart surgery, blood tests for leukemia, the ‘red book’ with the extra pages of separate norms for children with Downs Syndrome. Just to give an example, in our world a common cold was not ‘common’ at all- it meant more floppiness, reduced feeding, drop in the growth chart, reduced hearing, associated eye infection, possible progression to pneumonia- about 20-30 days for a full recovery. As expected, in those early months I was- for the lack of a better term- overwhelmed. It was as if I was torn by all sorts of conflicting thoughts and emotions, I was worn out physically and emotionally. I noticed that I had stopped eating (surviving on a bit of porridge and toast), stopped sleeping, my back was giving up, and most alarmingly I no longer felt the kind of joy I initially felt when I held my daughter. The final straw that broke the camel’s back came on boxing day 2008, when I had a bit of a meltdown of sorts and that was when I realised I needed help. We decided it would be good for me to get as far away as possible from the dark dreary winter months, and I headed to my parents’ back in India. Surrendering my daughter to them, I retreated into a dark place- I would still be with my daughter- feed her, bathe her, change her, take her for walks- but as soon as she dozed off (which was quite often) I was back in that cold place. I sought help informally and got convinced to start on antidepressants- “just to take the edge off”- and to this date I feel that was the best decision I took. As a psychologist, I had always been loathe to relying on chemicals to induce change, but I now recognize the value of these drugs when used appropriately. Within a month, I was better- I could “feel” again, I could feel the same visceral gush of ‘mumsy’ emotions each time I looked at my daughter, I was able to concentrate on things I was doing, I regained my appetite and I was sleeping better (as any new mother would tell you, sleep is a luxury in those early days, and the ability to sleep soundly for short bursts is the crucial trick one has to learn to function effectively!). It was as if I could see the different hues of colour again. I guess those few weeks of ‘respite’ helped consolidate my emotions, weigh out rationally the implications of having a child with special needs, and reassign a slightly altered view to events in life. Simply put, it helped me realize that all my daughter was telling me was “this is who I am, accept me as I am” instead, here I was getting bogged down by what should be inconsequential things. Is that not what each child would want? In that one month, my understanding of ‘normality’ underwent a transformation that I feel has helped me for the better. I don’t know if what I experienced was post-partum depression or an affective response to severe stress (my husband told me much later that he and my parents were literally using the ‘handle with care’ placard to communicate to each other about my mood in the first/second month after our daughter was born….it was apparently like treading on egg shells…. I was apparently highly irritable, edgy and restless- I genuinely do not recollect being that way!). It does not matter what the label is, what matters is that it was a period on internal turmoil that got worse due to its lack of fit with my external persona. Its resolution was crucial to determine my future path, and I can confidently vouch for the fact that I came out stronger. It helped that I was able to adopt some aspects of my husband’s take on the situation –of “let’s pick our battles wisely”- to most situations. I learned to turn a blind eye and a deaf ear to those things that had the potential to cause me pain (at the cost of probably upsetting others). By being able to remind myself that I had limited reserves I was able to get by and get through a phase that at one point seemed like a dead end. By allowing myself to use help and support, I was able to get back into a state of equilibrium, both physically and emotionally. My experience of ‘motherhood’ became grounded in this new foundation, and in a way I am glad I had the rough start for now I know the value of Health. Two years on, with the added life event of the loss of the most significant person in my life within a month of my second child’s birth, the finality of death taught me another valuable lesson: the importance of cherishing the here and now. The whole experience of being a mother has thus been about getting in sync with the kids and tuning in to their needs; about striking (what you hope is) the right balance between being fiercely overprotective and learning to let go; About being watchful yet not overbearing, vigilant not smothering, about loving without ‘spoiling’ if you know what I mean…..
I look back on the last 5 years and I wouldn’t be entirely honest if I said it was all peachy. Yes, we’ve had some scary experiences- I have learnt it the hard way that physical health is most important. It was not easy handing over our daughter to teams in scrubs for her surgeries, it was not easy watching her struggle with things that come naturally to most of her peers (feeding, temperature regulation, night-time breathing, crawling, walking, dexterity etc), and it is definitely not easy to see her reaction to perceived rejection (sadly, this world is still inhabited by a few who treat my daughter differently). I continue to get angry when people sometimes talk to her in a high-pitched motherese (she’s not deaf, really!), when they give my nearly five year old daughter toys labeled “for 2-3 year olds”, when friends surreptitiously assess her cognitive skills, when people pathologise her every move (“they” tend to sit in a W position, “they” are visual learners), and most of all when people ask “but didn’t you know during your pregnancy” (does that imply that I should have terminated had I known her diagnosis - why is it that one extra chromosome somehow undermines the value of her life?). But I have learned to respond to these situations in a slightly better way than before. Largely, it has been the positives that have paved the way to where we are, where I am. It has been wonderful to see my daughter blossom into a confident young girl, full of life. She loves her school (“oh does she go to a mainstream school?”….”YES”) and has quickly shattered a few myths while there (also is quite the star!), Like any other 5 year old she loves disney princesses, fairies and magic wands. She is a ‘girly’ girl (give her lego, and she’ll be building a ‘picnic’ area with pretty flowers while my son will be building towers and rockets). She can be unreasonable with her demands but quick to say “that’s not fair” when we request something that she does not want to do. She is a doting (yet bossy- as need be) older sister who while ensuring she is saving a few goodies for her little brother has clearly established a hierarchy (no doubts left as to who is in charge). It melts my heart when she reminds her brother to say his ‘please’ and ‘thank you’, and when she patiently explains ‘complicated’ terminology in Peppa Pig to him (that “parents is Amma & Pappa”; or “cub is a baby lion”) or teaches him how to use certain aps on the tablet. The reaction is even more visceral (in a good way!) when at times I can see that my son is allowing himself to be “taught” even though he may know a few of the things his sister is telling him about.
As I sit here typing this post watching one child dressed as Rapunzel, and the other as Spiderman both busy assembling a train-track, I am thinking once again about the Big question in my mind- how different is it to be a ‘special needs mum’ as against a ‘regular mum’….and the answer is I don’t know. I don’t know if parenting our son has been easier because he is the second born, or because he doesn’t have Downs Syndrome, or because we are somehow ‘wiser’….I don’t even know if such a division exists or if they are both part of the same continuum. Its all a matter of degree and at the end of the day, what’s in a name? If someone asked me, I’d stick to “I’m just a mum”…..for that’s what its been about.
Motherhood for me has been about getting in touch with my strong need to nurture (and resisting the strong urge to throw both of them in the recycling bin, especially at around 6 pm on a Friday), about learning new skills while character analyzing cartoons, about being patient and firm and yet losing my temper, relaxed lazy weekends when all 4 are huddled together interspersed by frantic praying for quick recoveries and night time trips to the A & E, about tears of joy at school nativities- achievements at nurseries and the usual embarrassment at superstore tantrums, about trying to hold a conversation over the phone or trying to meet a deadline while two under-fives are screaming for attention and at the same time waiting each morning for 2 sleeping angels to wake up and start their demands, about every 10th utterance being “No!” or “Put that down!” only to be told “say please”…. About exhaustion and frustrations, about prioritizing and time management, about deprived sleep and melting hearts, pride, joy, and inexplicable intensity of love.
My daughter at the age of 5 years has learned to quickly gauge what she can or cannot do in any given situation, and although fiercely independent, she does not mind saying “can you help me, please?” (be it for unscrewing a lid, opening a jammed door, climbing a high step or tying her shoe laces). Why is it then that we, as grown-ups, find it so difficult to reach out when we need to? It took me nearly 6 months to recognize signs of spiraling down (despite all the training or probably due to it?) but I’m ever so glad I had help at hand when I did seek it. The beginning of my journey as a mother was very rocky indeed, but it probably was needed to smooth the path ahead.
Without being patronizing, I’d like to add that no self-help manual or chart-topper book can tell you how to be a mother or what to “really” expect when you are expecting. As far as I know, no child comes with a guarantee. While a large majority of pregnancies and births may be uneventful, there are those who have had to explore the road less travelled due to various reasons. As Jennifer Groneberg succinctly puts it in her book, “it's like planning a trip to Italy, only to get off the plane and discover you're actually in Holland. You need a new road map, and you need it fast...”. But sketching your own map and “experiencing Holland in its true glory” can be a very enriching experience.
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