Meta tags:

Headings (most frequently used words):

on, 2018, our, beautiful, tuesday, march, september, sunday, june, son, born, full, term, 2008, died, 2009, windy, contributors, family, portrait, blog, archive, followers, resources, for, baby, lost, parents, the, ferry, cat, 2025, thursday, october, 12, 2023, 18, 17, 10, wedding, rings, daughter, freyja, ione, stillborn, at, 28, weeks, 25, july, 2006, kees, henry, february, 21, jethro, craig, wilhelm, 29, august, turn, back, time, another, day, thoughts, afternoon, move, written, about, month, ago, published, today, highly, active, ms, this, is, it, empathy, or, lack, thereof,

Text of the page (most frequently used words):
and (110), the (78), that (62), our (42), for (42), this (29), with (28), have (26), are (25), was (24), their (21), can (19), been (19), years (18), about (18), people (17), house (17), not (16), has (15), time (14), who (14), had (14), what (14), one (14), now (14), those (13), you (13), how (13), life (13), but (13), all (13), were (13), children (12), they (12), mother (12), much (12), because (12), really (12), when (10), her (10), many (10), different (10), lives (10), just (10), friends (10), doing (10), craig (9), some (9), know (9), she (9), more (9), don (9), comments (8), mirne (8), empathy (8), lost (8), like (8), since (8), having (8), being (8), then (8), ago (8), day (8), posted (7), quite (7), most (7), nearly (7), very (7), think (7), person (7), lesions (7), them (7), blog (7), love (7), grief (7), died (6), september (6), before (6), march (6), first (6), will (6), loss (6), lived (6), back (6), mil (6), diagnosis (6), yet (6), live (6), thought (6), june (6), few (6), three (6), new (6), big (6), move (6), may (6), into (6), post (6), sad (6), october (6), july (5), someone (5), fact (5), other (5), any (5), everything (5), from (5), out (5), didn (5), again (5), last (5), things (5), see (5), months (5), difficult (5), here (5), build (5), used (5), something (5), stillbirth (5), april (5), beautiful (4), born (4), august (4), february (4), freyja (4), daughter (4), home (4), your (4), parents (4), still (4), recently (4), diagnosed (4), lack (4), friend (4), else (4), normal (4), course (4), needed (4), despite (4), also (4), well (4), there (4), everyone (4), yes (4), told (4), which (4), totally (4), over (4), thoughts (4), 2018 (4), treatment (4), right (4), sold (4), place (4), written (4), news (4), working (4), windy (4), lifestyle (4), village (4), want (4), every (4), missed (4), son (3), full (3), 2009 (3), kees (3), make (3), reminded (3), immediately (3), perfectly (3), feel (3), understand (3), biological (3), issues (3), knows (3), addition (3), nothing (3), shown (3), than (3), started (3), understanding (3), seems (3), others (3), mentioned (3), sister (3), brain (3), after (3), did (3), without (3), maybe (3), experience (3), imagine (3), get (3), neurologist (3), feelings (3), another (3), turns (3), going (3), good (3), thing (3), two (3), showed (3), active (3), hate (3), space (3), wake (3), laws (3), moved (3), decided (3), city (3), bought (3), land (3), cat (3), need (3), instead (3), leave (3), today (3), busy (3), family (3), motorhome (3), enjoying (3), reality (3), part (3), incredibly (3), times (3), missing (3), loving (3), turn (3), joy (3), support (3), australia (3), november (3), december (3), january (3), please (3), jet (2), term (2), 2008 (2), weeks (2), posts (2), empathise (2), rare (2), only (2), effort (2), quick (2), shows (2), whereas (2), these (2), available (2), too (2), got (2), even (2), disease (2), challenges (2), real (2), said (2), mum (2), politely (2), mri (2), taken (2), hadn (2), surprise (2), took (2), thinking (2), guess (2), where (2), able (2), ability (2), losing (2), cure (2), sunday (2), days (2), better (2), happen (2), successful (2), later (2), changed (2), highly (2), ocrevus (2), dead (2), supposed (2), apparently (2), care (2), tied (2), away (2), moment (2), way (2), happens (2), walk (2), driving (2), down (2), close (2), planning (2), caravan (2), car (2), suffered (2), travel (2), finding (2), rent (2), plans (2), take (2), month (2), published (2), tuesday (2), found (2), already (2), major (2), trip (2), hope (2), great (2), work (2), afternoon (2), alone (2), realised (2), through (2), stuff (2), building (2), would (2), commitment (2), garden (2), etc (2), sob (2), couple (2), several (2), money (2), neighbours (2), left (2), buy (2), pregnancies (2), friendships (2), daily (2), breathe (2), profound (2), families (2), baby (2), losses (2), 2023 (2), words (2), longest (2), socialising (2), recovering (2), remembering (2), saw (2), meme (2), seen (2), learning (2), trauma (2), 2025 (2), foundation (2), neonatal (2), death (2), charity (2), infant (2), babyloss (2), minded (2), welcome (2), skip (2), sweet, boy, jethro, wilhelm, gorgeous, week, henry, ione, stillborn, 2006, diamond, each, wedding, rings, subscribe, atom, older, noticed, cannot, defined, merriam, webster, online, dictionary, meet, truly, met, shocks, little, show, mention, jump, tell, relative, neighbour, showing, anything, typically, adult, reminding, therefore, knew, foster, age, early, 1970, treatments, remotely, sympathetic, say, expecting, hug, sliver, nada, niks, point, minor, such, incredible, expert, facts, fairly, lengthy, challenging, shorter, possibility, actually, symptoms, described, him, evidence, demyelination, seemed, aback, including, word, gospel, check, none, learned, constantly, changing, evolving, places, persons, cultures, events, become, gift, look, differences, possibly, must, experiences, experienced, continuing, find, try, radiologist, capacity, manner, explicit, action, aware, sensitive, vicariously, experiencing, either, past, present, fully, communicated, objectively, thereof, waiting, decade, isn, pissed, angry, wish, shit, half, infusions, makes, call, implies, sort, healing, treating, punt, hoping, slow, halt, aren, slowing, far, led, second, concluded, third, his, hasn, done, birthdays, kinda, hard, turning, knowing, cause, sucks, mean, smile, play, happy, coz, expect, asks, suffering, terrible, dil, believe, certainly, bloody, drama, queens, except, kill, myself, own, hating, pretty, keep, coming, currently, speak, arm, blind, worse, yeah, optimistic, hopeful, extra, closer, looks, somewhere, dogs, offered, duration, hesitant, persistent, wants, travelling, youngest, involved, accident, closed, head, injury, physically, mentally, disabled, dependent, limited, presence, trouble, offer, stay, seriously, leaving, travels, excited, fil, could, drive, tow, along, limitations, script, gone, uluru, wonderful, kilometres, vehicle, named, tar, trekker, mris, best, possible, cross, fingers, continues, unfortunately, existing, damage, remains, continue, health, victoria, dog, read, previous, year, wrote, lots, happened, survived, living, tough, especially, hottest, summer, records, air, conditioning, however, happening, decision, block, financial, enormous, physical, mental, setting, garage, frankly, ahead, aged, least, needs, retired, talked, made, choice, reasons, firstly, instant, community, secondly, worried, spent, energy, young, next, thirdly, lock, easy, worry, keeping, eye, fourthly, wouldn, spend, enough, biggie, committing, finances, future, additionally, parking, onsite, recreational, vehicles, bonus, location, renovated, established, shocking, fit, theirs, explain, honestly, grieve, actively, buried, surely, sure, until, longer, hear, via, friendship, continued, include, single, snowballed, became, complex, overwhelming, feeling, overwhelmed, anger, denial, consuming, waking, growing, confronting, brutal, accepting, joyful, during, extremely, sending, newsletter, emails, childrens, photos, starting, ours, phone, conversation, always, dreamed, hopefully, adelaide, apartment, central, business, district, centre, amsterdam, hustle, bustle, convenience, ness, greenery, near, gardens, large, parks, daytime, nighttime, views, ocean, thursday, put, couldn, should, bad, resentful, career, music, exploration, fun, happiness, realising, wasn, ourselves, team, meaningful, whilst, stop, soon, looking, forward, lunch, dinner, sitting, lonely, literally, brother, certain, struck, true, flash, basically, says, haven, let, latest, ferry, whispered, compassionate, usa, sids, kids, lay, sleep, miscarriage, directory, study, deaths, child, bereavement, awareness, campain, angel, pics, resources, followers, 114, 2010, 2011, 2012, 2016, archive, portrait, contributors, express, share, situation, elsewhere, accidentally, stumble, across, contact, directly, rely, inform, thanks, sidebar, main, loved,

Text of the page (random words):
ome doing nothing being sad and lonely because that is literally what we were doing for the longest time craig is now working again and loving it he s enjoying being part of a team and doing something really meaningful whilst other people want to stop working as soon as they can he s looking forward to doing this for a few years yet i ve also started realising again how much we have lost it wasn t just our children and our lives with them but also ourselves i missed nearly 18 years of me i missed nearly 18 years of a career of friends of music of socialising of exploration of fun of happiness of joy i missed nearly 18 years of that i m incredibly sad about that and quite resentful about it as well so many good things were taken from us i can put it into words now i couldn t for the longest time now i can see other people enjoying their lives and i think that s what we should have been doing i can see what we have been missing and that s a good thing because i can do something about it now and a bad thing because we missed that for nearly 18 years and we can t turn back time posted by mirne at 6 39 am 0 comments thursday october 12 2023 another windy day and here we are years later again another windy day we ve moved to adelaide to an apartment in the city the central business district it has been many years since we ve lived in the centre of a city not since amsterdam in fact we are loving it i m loving the hustle and bustle i love the convenience i love the busy ness i love the greenery we live near many gardens and large parks i love the daytime and nighttime views i m finding i m not missing the ocean very much at all we have plans to build a house yes those 5 years in the lifestyle village were great yet something was always missing we still dreamed of building a house so hopefully now we will do it a phone conversation today reminded me that i used to have many friends friends that were friends before all our losses i m sad that i don t have those friends any more i m more sad that i m not that person any more that person i used to be before grief changed me the reality is that those friends were starting their families just at a time when we lost ours and so those friendships suffered it was extremely difficult to be friends with people when they were sending us their newsletter emails full of their pregnancies and their baby news and their childrens photos it was right at a time when we were so totally overwhelmed by our grief our grief and our anger and denial was so profound and consuming and was with us every waking moment news of our friends growing families was incredibly confronting and brutal to us we were not in a place to be accepting or joyful for others during those times the reality was that our grief snowballed over those years when we lost our three children it became complex and overwhelming and left us feeling so incredibly sad and alone for many years so when i hear via someone else about a person who used to be my friend being sad about our lost friendship i think about how their lives continued how their children were born and lived how their daily lives include their children every single day my lost children are part of my daily life now my grief for them is with me as surely as i wake up and breathe and walk every day i m sure it will be a part of me until the day when i no longer wake up and breathe i grieve much more actively for the person i used to be the person i was before i buried my three children the person i was before i had ms it is difficult to explain to people honestly i think most people don t want to know and most don t care those friends back then they didn t really want to know they were busy with their lives and their pregnancies and their children my dead children were shocking to them my reality didn t fit with theirs and that s how the friendships died posted by mirne at 8 01 am 0 comments thoughts on a windy afternoon i found this post so i thought i d post it it was written about 4 years ago it s a windy afternoon and craig is driving to victoria working for a few days i m home alone with the dog and cat i just read my previous post and realised that it s been more than a year since i wrote on this blog lots of things have happened since then we survived living with my il s for 8 5 months it was tough especially through the hottest summer on records as their house has no air conditioning however we got through since then some major stuff happening in our lives we sold our land yes it was a difficult decision but we decided that building a house a big house on a big block was too much work for us it would have been a big financial commitment a big time commitment and an enormous physical and mental effort for us we would have been busy for years setting up the house the garage s the garden etc and quite frankly we need to live for the now make the most of the now because we don t know what s ahead of us so we sold our land sob sob and bought into a lifestyle village for those of you who don t know and most people don t the lifestyle village we bought into is for people aged 50 if you are a couple at least one of you needs to be retired ie me craig talked me into it and having been here now for nearly 7 months i think we made the right choice we decided for several reasons firstly instant community secondly no children this is a big one for us we were worried that if we spent all our time energy money etc on our new build and then a young family moved in next to us we d have to move thirdly lock leave if we want to go away it s easy to just go and not have to worry so much about the house the neighbours are all keeping a close eye on it fourthly we wouldn t spend all our money we d have enough left over to buy a motorhome that was a biggie instead of committing all our finances now and future to a new house build we d be able to buy a motorhome immediately which we did additionally the lifestyle village has parking onsite for recreational vehicles bonus so here we are and we re enjoying it we like our neighbours we love the location we totally renovated our house so we love our house our garden is well on it s way to being established and we have our new motorhome we ve already been for our first major trip up to uluru which was wonderful and a successful trip we hope to travel many more kilometres with this vehicle which we have named the tar trekker in addition great news the ocrevus treatment is working my last two mris have shown no new lesions on my brain this is the best news possible so now we cross our fingers and hope that it continues to work unfortunately existing damage in my brain remains so i continue to have health issues i found this post so i thought i d post it it was written about 4 years ago posted by mirne at 7 34 am 0 comments tuesday september 18 2018 a move written about a month ago published today written about a month ago published today so here we are in my in laws home we have moved yes after the diagnosis we decided that with all the extra driving up and down to the city we needed to move closer we bought land close to my il s a few months ago and we are now planning to build a house it looks like we may have sold our house as well post script we did it s gone but we needed somewhere to move to before our house was sold and because we have two dogs and a cat that is difficult my mil offered some time ago for us to move into their house for the duration of the build but i was hesitant they need their space and we need our space but my mil is persistent and she really wants to go travelling in their caravan but they are tied to the house because of their youngest daughter craig s sister was involved in a car accident many many years ago she suffered a closed head injury and has been physically and mentally disabled since then she lives with and is totally dependent on her parents so my in laws ability to travel is very much limited by her presence when we started having trouble finding a place to rent we re thought our plans to rent a house and instead took my mil s offer to stay with them seriously so here we are at my in laws place they re planning on leaving on the first of their travels in 3 5 weeks i think my mil is excited my fil could take it or leave it but he s needed to drive the car to tow the caravan so he has to go along but of course there are limitations of course posted by mirne at 5 50 am 0 comments highly active ms so i ve had two half infusions that makes one treatment i don t really like to call it a treatment because it s not a treatment implies some sort of healing or treating whereas this is just a punt hoping that it will be successful and maybe slow or halt the lesions the lesions aren t slowing yet i ve had three mri s so far first one showed up lesions and led very much to the ms diagnosis second one three months later showed new lesions neurologist concluded i had active ms third one three months after that showed more new lesions neurologist changed his diagnosis to highly active ms and the ocrevus hasn t done much yet that we can see craig and i had our birthdays the big 5 0 i didn t really know what to make of it it s kinda hard turning 50 having just been diagnosed with a disease like ms with no knowing the cause and not having a cure with three dead children and life just sucks really i mean what am i supposed to do smile and play happy coz that s what most people expect no one asks me how i am no one it seems everyone else is suffering more from my diagnosis than i am because apparently it s very difficult for my mother and my mil that i have ms really it s apparently terrible for them that their daughter and dil has ms can you believe it i certainly can t bloody drama queens and no one seems to care how i feel no one except craig i think i d kill myself if i didn t have craig i hate not having my own space i hate being tied to this house i hate that i can t just go away i m hating pretty much everything at the moment what if the lesions keep coming the way they currently are what happens then one day i ll wake up and can t speak or can t move my arm s or can t walk or one day i ll be blind or worse what happens oh yeah but i m supposed to be optimistic and hopeful right posted by mirne at 5 48 am 0 comments sunday june 17 2018 this is it this is it that s what i ve been thinking the last few days that this is it this is my life this is it it turns out i ve been waiting this last decade or so since losing our children for things to get better for life to get better turns out that isn t going to happen turns out that this is it i m really pissed i m really angry i wish it was all different but it s not this is it i guess it really is a good thing you can t see what s going to happen in your life this is my life this is it and it s shit posted by mirne at 10 53 pm 0 comments sunday june 10 2018 empathy or lack thereof for quite some time i ve noticed that most people cannot empathise empathy is defined in the merriam webster online dictionary as the action of understanding being aware of being sensitive to and vicariously experiencing the feelings thoughts and experience of another of either the past or present without having the feelings thoughts and experience fully communicated in an objectively explicit manner also the capacity for this those who have lost children like we have will know that it is rare to meet someone who can truly empathise with you and your loss in fact the only people i ve met who can do so are other loss parents it s been nearly 12 years since our first loss freyja and still it shocks me how little people can or will show any empathy or make any effort to having recently been diagnosed with ms has reminded me of this lack as with loss when i mention i have ms people are quick to immediately jump in and tell me about their friend and or relative and or neighbour and or someone else who had ms and lived a perfectly normal life they feel that this is showing empathy they feel that this shows they know and understand whereas of course it shows anything but my mother typically immediately reminded me that her biological mother had ms for most of her adult life as if i needed reminding so therefore she knew everything about ms this is despite the fact that my mother lived with her foster parents from age 5 also despite the fact that her biological mother died in the early 1970 s but still despite these issues my mother knows everything about ms she knows all about the treatments available too despite these not being available back then in addition she had a friend who very recently died who had ms for many years and lived a perfectly normal life in fact my mother had nothing remotely sympathetic to say to me when i was diagnosed all i got from her was well you were expecting it that s it not even a hug not a sliver of empathy nothing nada niks even my mil who has shown more empathy than my mother has about my diagnosis has been quick to point out that she has a friend of course who has lived a perfectly normal life with ms and has only recently started to have some minor issues there is such an incredible lack of understanding about this disease and yet it seems everyone is an expert the facts are that everyone diagnosed with ms is different everyone s challenges with ms are different some people do live fairly normal and lengthy lives but others don t others live with many challenges and some live challenging and much shorter lives when i first mentioned to my sister that the ms diagnosis was a real possibility for me she said yes mum told me that you think you have ms i politely told her that actually a neurologist and radiologist thought i had ms i politely told her that they thought i had ms because of i symptoms which i had described to him and ii evidence of demyelination shown on a mri of my brain she seemed quite taken aback and then told me that mum hadn t mentioned that it didn t surprise me that my mother hadn t mentioned that my mother knows everything about everything including ms because after all her biological mother had ms what did surprise me is that my sister took my mother s word as gospel without thinking to maybe check with me and again there was no empathy none i learned quite some time ago that people are all different the person we are at any one time is constantly changing and evolving as we experience different places different persons different cultures different events we become different people i guess the gift of empathy is one where we can look at all those differences and yet still be able to imagine and possibly understand what life must be like for someone else someone who has totally different experiences to you the ability to imagine and understand without having experienced and that i m continuing to find is quite rare you don t get over losing a daughter or a son there is no cure for ms try to imagine that posted by mirne at 4 37 am 0 comments o...