Q8(b) of Q&A

A: Without a doubt this entire experience has certainly been by far the most difficult thing we have ever personally had to face. There is nothing else in our life experience that bears any useful resemblance to this situation. Although some parents in this kind of situation have reported a not-so-tragic personal experience, for us it is so far little more than an utter tragedy. For much of (at least) the first few months, in almost every waking hour of almost every day we had to fight a creeping darkness that would otherwise easily set in.

The initial news of the trisomy 13 was experienced in a way difficult to describe. We, like typical parents, had previously thought about what it would be like to go through something like this. You know -- you happen to see some parent with a severely challenged child and you feel great empathy for how difficult it must be and sheer dread at the 'what if it happened to me' kind of thought. We still sometimes get the proverbial fleeting thoughts of 'I can't believe this has really happened to us' and Katya. And we become aware how it's even insidiously much worse than we had imagined in theory. In retrospect, it seems that before Katya, when trying to imagine the plight of parenting a severely mentally challenged child, we would maybe let our imaginations go only so far and then defensively barricade the flood of fearful emotions that would begin to overtake when observing such misfortune in others. Whether or not one does this barricading of fearful thoughts, it is likely that unless you've experienced it directly, you may be able to imagine some of the depth but not likely the full breadth of impact this kind of a development could have on your life and mind and spirit. So it would be really difficult to expect that a verbal answer to the question of our experience could really give others a true sense of what it was like to be impacted with that sudden and unexpected devastating news. There are just too-many-to-describe big and little things in our lives that have been subjected to utter upheaval, including some things that previously didn't seem so big.

The ever-present sense or fear of impending damage to her life and our own lives, and to our highly-valued longer-term futures, has really often been utterly terrifying. The fear and grief has really been quite overpowering at times. To us the impact was unprecedently severe and really sweeping, virtually no area or sliver of detail in our minds or existence escaping less than a great alteration from its prior natural state. Apparently this is not everyone's experience in such cases -- but with reference to our own prior goals, lifestyle, and pace, this development really is nothing short of widely devestating to the lives we were living and intending to pursue.

Rather than attempt to adequately describe that seemingly unreal, ponderously extensive impact, it might be more useful to try a detour through your own imagination with perhaps the following start points: Try imagining that you're bathed in the sheer happiness and promise of a new child's birth and an inspiring birthing experience, but then within days being shocked into the knowledge that your sweet little new baby has a highly deadly condition in which survival is at best a very dim hope, with a 50% chance of death within a week and a 90-95% chance of death within a year. Imagine being told that your child is going to be so profoundly retarded that she won't get past the mind of a 6-12 month old even if she survives to become an adult. Try to imagine that you've just found out your kid is probably deaf and may go through years of life without ever hearing the sound of her own voice, your own voice, music, birds singing, a rushing river, wind in the trees, or anything else that is beautiful and soothing to the ears. Imagine finding out that statistically your child is highly likely to be so crippled as to never take a step, to never experience the youthful exhiliration of running, to be unable to use a toilet, to have to spend a lifetime in diapers, to be beset by a strange combination of other health challenges throughout life. Think about looking at your baby of promise and realizing that she is prevented from learning anything more than infant-perspective wonders, would not be able to pursue a career; could not get married, make love, have children of her own; has been denied the dignity of limitless potential for striving towards the goals of normal maturity, will be capable of only the tiniest fraction of achievement that otherwise would have been hers.

But imagining any one of these things is not actually the picture. The real picture is imagining all of these things at once in a single, massive flood of horror -- and then some. There is simply nothing else that could compare with looking into your baby's eyes and seeing with such certainty a tragically reduced state and insulted future -- nothing.

So what was it like to be a parent that had just learned their newborn has such a destructive, repressive condition? It was like nothing else. What is it like on an ongoing basis? Also like nothing else.

In some ways it's probably similar to having a child with a lethal illness: even though trisomy 13 is not necessarily lethal in itself, some of the complications that can arise from it are. Frequently, although more recently with declining overall frequency, there is either a pervasive lump in our throats or knot in our stomachs -- and it just won't go away for emotionally exhausting periods of time.

In other ways, we actually wonder if this is part of what it might feel like to be immersed in a terrible war because of the extensive upheaval that plunges your prior life into the state of an unreachable memory, and because of the frequent painful and ponderous sense of dread and heartbreak. There is a clear sense that the past is suddenly and sweepingly gone forever -- no longer there to return to, regardless of whatever else happens. The past -- what used to seem like quite a complicated adult life -- now seems like a mere breeze in comparison to a new and relentless raging storm of challenge and difficulty. Still, there is a compelling integrity and dignity in enduring the storm, waiting for and reveling in sunny breaks, and hoping for a change of season.


				*For Friends of Katya Maria Sansalone* *Q8(b) of Q&A*



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		Q: What about details of what it was and is like on a personal level?



		A: Without a doubt this entire experience has certainly been by far the most difficult thing we have ever personally had to face. There is nothing else in our life experience that bears any useful resemblance to this situation. Although some parents in this kind of situation have reported a not-so-tragic personal experience, for us it is so far little more than an utter tragedy. For much of (at least) the first few months, in almost every waking hour of almost every day we had to fight a creeping darkness that would otherwise easily set in. The initial news of the trisomy 13 was experienced in a way difficult to describe. We, like typical parents, had previously thought about what it would be like to go through something like this. You know -- you happen to see some parent with a severely challenged child and you feel great empathy for how difficult it must be and sheer dread at the 'what if it happened to me' kind of thought. We still sometimes get the proverbial fleeting thoughts of 'I can't believe this has really happened to us' and Katya. And we become aware how it's even insidiously much worse than we had imagined in theory. In retrospect, it seems that before Katya, when trying to imagine the plight of parenting a severely mentally challenged child, we would maybe let our imaginations go only so far and then defensively barricade the flood of fearful emotions that would begin to overtake when observing such misfortune in others. Whether or not one does this barricading of fearful thoughts, it is likely that unless you've experienced it directly, you may be able to imagine some of the depth but not likely the full breadth of impact this kind of a development could have on your life and mind and spirit. So it would be really difficult to expect that a verbal answer to the question of our experience could really give others a true sense of what it was like to be impacted with that sudden and unexpected devastating news. There are just too-many-to-describe big and little things in our lives that have been subjected to utter upheaval, including some things that previously didn't seem so big. The ever-present sense or fear of impending damage to her life and our own lives, and to our highly-valued longer-term futures, has really often been utterly terrifying. The fear and grief has really been quite overpowering at times. To us the impact was unprecedently severe and really sweeping, virtually no area or sliver of detail in our minds or existence escaping less than a great alteration from its prior natural state. Apparently this is not everyone's experience in such cases -- but with reference to our own prior goals, lifestyle, and pace, this development really is nothing short of widely devestating to the lives we were living and intending to pursue. Rather than attempt to adequately describe that seemingly unreal, ponderously extensive impact, it might be more useful to try a detour through your own imagination with perhaps the following start points: Try imagining that you're bathed in the sheer happiness and promise of a new child's birth and an inspiring birthing experience, but then within days being shocked into the knowledge that your sweet little new baby has a highly deadly condition in which survival is at best a very dim hope, with a 50% chance of death within a week and a 90-95% chance of death within a year. Imagine being told that your child is going to be so profoundly retarded that she won't get past the mind of a 6-12 month old even if she survives to become an adult. Try to imagine that you've just found out your kid is probably deaf and may go through years of life without ever hearing the sound of her own voice, your own voice, music, birds singing, a rushing river, wind in the trees, or anything else that is beautiful and soothing to the ears. Imagine finding out that statistically your child is highly likely to be so crippled as to never take a step, to never experience the youthful exhiliration of running, to be unable to use a toilet, to have to spend a lifetime in diapers, to be beset by a strange combination of other health challenges throughout life. Think about looking at your baby of promise and realizing that she is prevented from learning anything more than infant-perspective wonders, would not be able to pursue a career; could not get married, make love, have children of her own; has been denied the dignity of limitless potential for striving towards the goals of normal maturity, will be capable of only the tiniest fraction of achievement that otherwise would have been hers. But imagining any one of these things is not actually the picture. The real picture is imagining all of these things at once in a single, massive flood of horror -- and then some. There is simply nothing else that could compare with looking into your baby's eyes and seeing with such certainty a tragically reduced state and insulted future -- nothing. So what was it like to be a parent that had just learned their newborn has such a destructive, repressive condition? It was like nothing else. What is it like on an ongoing basis? Also like nothing else. In some ways it's probably similar to having a child with a lethal illness: even though trisomy 13 is not necessarily lethal in itself, some of the complications that can arise from it are. Frequently, although more recently with declining overall frequency, there is either a pervasive lump in our throats or knot in our stomachs -- and it just won't go away for emotionally exhausting periods of time. In other ways, we actually wonder if this is part of what it might feel like to be immersed in a terrible war because of the extensive upheaval that plunges your prior life into the state of an unreachable memory, and because of the frequent painful and ponderous sense of dread and heartbreak. There is a clear sense that the past is suddenly and sweepingly gone forever -- no longer there to return to, regardless of whatever else happens. The past -- what used to seem like quite a complicated adult life -- now seems like a mere breeze in comparison to a new and relentless raging storm of challenge and difficulty. Still, there is a compelling integrity and dignity in enduring the storm, waiting for and reveling in sunny breaks, and hoping for a change of season.



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