Church this morning at Windsor Park Baptist church in East Coast Bays ... afterwards I had two very lovely ladies pray for me and then a meeting with the leader of the care team who is going to co-ordinate some assistance for our family ... practical things like finding a reliable babysitter, helping with meals, prayer visits and maybe some occupational therapy and other social activities to assist in our rehabilitation and setting goals. In essence it's starting over and attempting to get somewhere close to what I had last year. Seems impossibly hard but with God's grace and some extra assistance from others I just have to keep putting one foot in front of the other. Maybe I had to have this huge fall to learn not to put so much pressure on myself - so that when things do improve I will savour them so much more and know when to stop pushing myself.
In 2010 I visited the Church and went on some play-dates there that I drove myself to and felt completely 'normal' at the time - Noah was there for a Christmas party getting his face painted so some very happy memories. It was weird to re-visit in my current raw state. One of the women who prayed for me emphasised the importance of forgiving myself for so many things - she's right - it's just hard to let go when you think you could have done things to prevent a re-lapse. But I absolutely do know I did the best I could under very trying circumstances.
In a bid to make friends last year for myself and Noah I put myself into some pretty pressured situations like play-groups in un-fenced areas ... with a 'runner' that was putting a lot of stress on myself. So for my new baby-step goal it might just be meeting someone at a fenced cafe where I feel more confident. But that's probaby a way off. Home visits would be easier for now.
Last year I tried several avenues to get babysitters and would end up in bidding wars ... I would call a reference to check on the prospective babysitter - they would then get scared of losing their sitter and then offer them more money and work - frustrating. The competitive world of mothering, eh?!
Noah stayed at his granparents last night so we could have the meeting this morning. He is chocka full of cold still ... the conjunctivitis is looking a bit better. Just need his appetite to improve.
I haven't started any of the account of my real medical story yet ... but again just pleased to be typing at the moment. Still only managing about 3-4 hours sleep so my concentration isn't what it used to be.
My request tonight is for prayer for the best route to persue medically. I am booked for another IV Vit C tomorrow ... really want to have some confirmation that this is the right direction to go in - it's so hard to know sometimes and I've certainly had no big signs from God. I really envy people who say they pray about something and things just seem to fall in place that seem to not just be co-incidental. My mind is probably a bit too cluttered at the moment to hear God's voice so it's going to be a question of patience and perhaps trusting the team who is going to enter our lives soon.
Goodnight to you all and God bless you and your families.
Saturday 2 July 2011
Thursday 30 June 2011
Conjunctivitis, clothes and other matters
Well, firstly the day began with a more sleepful night - albeit still very vivid, surreal dreams full of conversations with people - oh, how I long for a normal sleep like I had before this all began and to just feel the natural state of tiredness and a yawn coming on - when you just 'feel' you are ready to go off to bed - instead of the nighly vigil I go through which is worth a blog in itself one day.
On a less-moaning note ... the winter sun was beautiful today - the air had a South-Island feeling - crisp and dry. I got a couple of new clothes in some nice, bright colours. I am really drawn to the colour 'orange' ... it has such good energy. I used to be interested in fashion before all this happened, that was re-kindled last year when I made a 'come back' and yes, even accessorised - then I'm afraid it was track suits and a more grunge look this year which even Kurt Cobain would be envious of. It certainly was not by choice but just because of feeling so lousy. As for my hair - well, that's another matter. My once shiny, brunette mane has turned into a drug-frizzed distinguised grey as it can't withstand any chemicals.
Unfortunately on our drive home from getting the clothes, we had a call from Noah's day-care to say he had conjunctivitis - so we have been busy this afternoon sorting that out. He's just on the tail end of a cold and ear infection - the winters certainly don't agree with him AT ALL. After all we went through last year with GPs, homeopaths, cranial-osteopaths etc we had hoped his immunity might have improved. He is a bit like me and feels the cold really quickly and has to be dressed like an Eskimo during the cooler weather.
Last year before he was in day-care my husband and I cared for him full-time - you would think that because two people were on the job it would have meant rest for us but honestly it was January of this year before we sat down one day during the day for a break. It had been round the clock nappy changes (his skin is very sensitive so prone to nappy rash) and he would delight in pulling his cot apart so sometimes I would be making his bed 2-3 times a day. He loved making 'snow' - as he described it, which was trailing toilet paper around the house. He was a very messy eater and we had carpet (advice to parents-to-be - choose a home with a tiled dining room!) so I would vacuum at least twice a day. Somehow even though there were only 3 of us in the house there were up to 2-3 laundry loads a day etc. Noah started walking before 9 months so has never been one for just sitting there and observing - he wants to do everything an adult does and refused to go in a stroller past 2 years which made life very interesting when in shops or out walking. I got a monkey backpack in the end with a tail/reins for his own safety as he was a road-runner but he struggled with allowing me to hold them although Dad was allowed to. I was constantly reassembling things in shops too which he had dismantled. I look at parents with 3-4 kids and am in awe ... I know they haven't been through what we've been through but nevertheless it's hard to imagine the co-ordination required - maybe they just had more networks and babysitters or more sedate and healthy children!!
On another note, a nutritionist who is one of the best in the country asked my GP for a series of tests to be ordered in, which should have been done back in 2008 ... they are fairly standard tests related to food allergies, cortisol and hormone levels and the like and my doctor has refused to co-operate so we are hoping another doctor will assist us. I have had a history of things like serious Salmonella and Irritable Bowel etc so the nutritionist has a feeling that has affected the gut and liver - hence my increased sensitivity to pharmaceutical drugs.
I am so thankful for all the people who have emailed me - sorry I haven't had a chance to send individual replies but your encouragement, prayers and love are truly appreciated.
I have written to many Miracle Healing sites around the globe and enlisted support from many prayer chains - thank you to all those people who continue to pray for me.
On Sunday we are getting together with a Pastoral Care assistant at a Baptist church who is going to try and co-ordinate some more assistance for us. It would have been fab to have had them last year when all the house repairs were going on etc but nevertheless we are very grateful. When you're in the midst of so much busyness you just don't think of who could be available to help with certain tasks. On top of everything else last year I went through a real faith crisis ... I have been a cradle-Catholic raised by a very obsessive Catholic father so the idea of leaving the church is kind of as radical as having a sex-change for me. I went to a couple of Anglican and Baptist services - I certainly see God in all people - it's just been a challenge to find the right fit when you are so used to one way of worshipping.
I haven't really even begun to tell my story yet about what happened when I started medication ... it's going to be an arduous task and probably very unpleasant but ultimately hopefully cathartic and helpful for others.
Well, off to sip some peppermint tea and to try desperately hard to not delve back in to the past nor future catastrophise .... when you read more in the next few days you will understand why that has become such a problem.
Goodnight and God bless any readers.
On a less-moaning note ... the winter sun was beautiful today - the air had a South-Island feeling - crisp and dry. I got a couple of new clothes in some nice, bright colours. I am really drawn to the colour 'orange' ... it has such good energy. I used to be interested in fashion before all this happened, that was re-kindled last year when I made a 'come back' and yes, even accessorised - then I'm afraid it was track suits and a more grunge look this year which even Kurt Cobain would be envious of. It certainly was not by choice but just because of feeling so lousy. As for my hair - well, that's another matter. My once shiny, brunette mane has turned into a drug-frizzed distinguised grey as it can't withstand any chemicals.
Unfortunately on our drive home from getting the clothes, we had a call from Noah's day-care to say he had conjunctivitis - so we have been busy this afternoon sorting that out. He's just on the tail end of a cold and ear infection - the winters certainly don't agree with him AT ALL. After all we went through last year with GPs, homeopaths, cranial-osteopaths etc we had hoped his immunity might have improved. He is a bit like me and feels the cold really quickly and has to be dressed like an Eskimo during the cooler weather.
Last year before he was in day-care my husband and I cared for him full-time - you would think that because two people were on the job it would have meant rest for us but honestly it was January of this year before we sat down one day during the day for a break. It had been round the clock nappy changes (his skin is very sensitive so prone to nappy rash) and he would delight in pulling his cot apart so sometimes I would be making his bed 2-3 times a day. He loved making 'snow' - as he described it, which was trailing toilet paper around the house. He was a very messy eater and we had carpet (advice to parents-to-be - choose a home with a tiled dining room!) so I would vacuum at least twice a day. Somehow even though there were only 3 of us in the house there were up to 2-3 laundry loads a day etc. Noah started walking before 9 months so has never been one for just sitting there and observing - he wants to do everything an adult does and refused to go in a stroller past 2 years which made life very interesting when in shops or out walking. I got a monkey backpack in the end with a tail/reins for his own safety as he was a road-runner but he struggled with allowing me to hold them although Dad was allowed to. I was constantly reassembling things in shops too which he had dismantled. I look at parents with 3-4 kids and am in awe ... I know they haven't been through what we've been through but nevertheless it's hard to imagine the co-ordination required - maybe they just had more networks and babysitters or more sedate and healthy children!!
On another note, a nutritionist who is one of the best in the country asked my GP for a series of tests to be ordered in, which should have been done back in 2008 ... they are fairly standard tests related to food allergies, cortisol and hormone levels and the like and my doctor has refused to co-operate so we are hoping another doctor will assist us. I have had a history of things like serious Salmonella and Irritable Bowel etc so the nutritionist has a feeling that has affected the gut and liver - hence my increased sensitivity to pharmaceutical drugs.
I am so thankful for all the people who have emailed me - sorry I haven't had a chance to send individual replies but your encouragement, prayers and love are truly appreciated.
I have written to many Miracle Healing sites around the globe and enlisted support from many prayer chains - thank you to all those people who continue to pray for me.
On Sunday we are getting together with a Pastoral Care assistant at a Baptist church who is going to try and co-ordinate some more assistance for us. It would have been fab to have had them last year when all the house repairs were going on etc but nevertheless we are very grateful. When you're in the midst of so much busyness you just don't think of who could be available to help with certain tasks. On top of everything else last year I went through a real faith crisis ... I have been a cradle-Catholic raised by a very obsessive Catholic father so the idea of leaving the church is kind of as radical as having a sex-change for me. I went to a couple of Anglican and Baptist services - I certainly see God in all people - it's just been a challenge to find the right fit when you are so used to one way of worshipping.
I haven't really even begun to tell my story yet about what happened when I started medication ... it's going to be an arduous task and probably very unpleasant but ultimately hopefully cathartic and helpful for others.
Well, off to sip some peppermint tea and to try desperately hard to not delve back in to the past nor future catastrophise .... when you read more in the next few days you will understand why that has become such a problem.
Goodnight and God bless any readers.
Wednesday 29 June 2011
A tribute to my husband
Yesterday's Vitamin C infusion was difficult as I suffered yet another prick in the arm - I am beginning to feel like a human pincushion. Horrible to be around cancer patients and the clinic is right next to where my Dad's funeral was held so brings back awful memories. Usually I get to go to another room but the chairs were all taken so I had to go to the room facing the church.
Last night was awful with a terrible night's "sleep" - maybe 1-2 hours and up half the night urinating and drinking coping with a dry mouth.
Very weak in the morning and beside myself. I managed a walk with my husband in the sunshine - only reminded me of how I bounced around last year pushing Noah in his stroller - looking at all the birds and cats and teaching him about shadows ... oh to be back there again with the knowledge I have now. The continued regret of not knowing that life was challenging then but so sweet in comparison to the last 8 months of living in Hades.
I went for a blood test today to check electrolytes and other things and cried there as I looked at the photo of small children on the wall and thought of my son and my longing to be his Mum for a long, long time.
We walked along to a prayer room and a sweet man prayed with me and also told me the horrors his daughter encountered on prescription drugs.
When support was so hard to find last year and I felt so ready to have a day out with just my husband, I thought about how I wished I'd gone to more places like that and how they and other support groups could have found us babysitters and supplied meals when my husband was so tired of cooking. It would have perhaps given us a chance to get our "heads straight" and some structures in place to make life less demanding. No woman or man is an island but that's what we were.
God has got to have some massive miracles to pull me through this.
Yesterday I shared two poems for my son. Today I wish to write about my husband. He is truly the saintliest person I know. Over the last nearly 3 years he has collapsed a business on his own, has not worked and been my full-time caregiver. He has been to over 200 medical practitioners with me, nursed our son and me through many sleep-disturbed nights, cooked hundreds of meals, dismantled the garden to try to make it safer for Noah. He has walked with me when I had adrenaline so bad I could walk for four hours without tiring. He has listened to my ranting over and over. He dealt with all the house issues I spoke about in another blog. He had to sell cars, deal with burying pets. In 3 years he has only had about 36 hours off in total. He has never left my side at hospitals, A & E's, doctors, alternative practitioners etc. He has sorted all my supplements and meds and tried to make sense of all the differing opinions/info. He has had no social life or breaks and dedicated his days to caring for me and Noah and the myriad of problems we have faced. He has held my hand through the many sleepless nights - often even sleeping on the floor beside my bed or a cramped couch - sometimes we would re-locate around the house 4-5 times trying to find a place for me to sleep when insomnia was at its worst. He has driven miles to seek help. His own health issues have taken second place ... he wears a mouth guard at night because he has ground his teeth so badly from all the stress. He walks with a limp, has a twitching eye and body ticks, skin disorders, a bad back etc. All of this the result of prolonged stress beginning with the collapse of our business and then proceeding through to all of the tragedies his wife and son have been through and the demands placed on just one human being.
Aaron, I love you with all my heart - thank you for believing in me, encouraging me and never letting go. Your persistence and belief in my recovery and in the injustice of the medical world has given me time with you and our son that would otherwise have been lost. Last year in spite of all the odds I achieved driving, reading, walking, writing poetry, caring for our son - buying him clothes, walking to feed ducks, taking him to parks and playgroups, teaching him colours and the alphabet, cuddling him, laughing with him and admiring all his new skills and words. In spite of all the pain, those times were the happiest of my life and I owe it all to you. In fact I made such good progress you would often say then that I was better than you.
My husband is my hero ... he is handsome, brave, strong, sensitive, a gifted artist, funny, charismatic, cheeky, adventurous, determined, a hard-worker, forgiving, loving and intelligent. He is gifted with languages and can do well at just about anything he applies himself to - he is so practical and mechanically-minded.
Here is a poem I wrote for my husband which appeared on our wedding invite:
Blue eyes meet green
and journey into the ocean
Thoughts meet hearts
I smile at your smile
A sacred revelation
No longer afraid
I have found my home.
I love you sweetheart ... people will learn more about your superhuman sacrifices and challenges and may God richly bless you with more support, comfort, rest and a long time as a much-loved Dad and husband. I hope one day if it's God's will we will start a foundation to help others ... it will be called "Lily-Boh" after the daughter we hoped to have had.
Last night was awful with a terrible night's "sleep" - maybe 1-2 hours and up half the night urinating and drinking coping with a dry mouth.
Very weak in the morning and beside myself. I managed a walk with my husband in the sunshine - only reminded me of how I bounced around last year pushing Noah in his stroller - looking at all the birds and cats and teaching him about shadows ... oh to be back there again with the knowledge I have now. The continued regret of not knowing that life was challenging then but so sweet in comparison to the last 8 months of living in Hades.
I went for a blood test today to check electrolytes and other things and cried there as I looked at the photo of small children on the wall and thought of my son and my longing to be his Mum for a long, long time.
We walked along to a prayer room and a sweet man prayed with me and also told me the horrors his daughter encountered on prescription drugs.
When support was so hard to find last year and I felt so ready to have a day out with just my husband, I thought about how I wished I'd gone to more places like that and how they and other support groups could have found us babysitters and supplied meals when my husband was so tired of cooking. It would have perhaps given us a chance to get our "heads straight" and some structures in place to make life less demanding. No woman or man is an island but that's what we were.
God has got to have some massive miracles to pull me through this.
Yesterday I shared two poems for my son. Today I wish to write about my husband. He is truly the saintliest person I know. Over the last nearly 3 years he has collapsed a business on his own, has not worked and been my full-time caregiver. He has been to over 200 medical practitioners with me, nursed our son and me through many sleep-disturbed nights, cooked hundreds of meals, dismantled the garden to try to make it safer for Noah. He has walked with me when I had adrenaline so bad I could walk for four hours without tiring. He has listened to my ranting over and over. He dealt with all the house issues I spoke about in another blog. He had to sell cars, deal with burying pets. In 3 years he has only had about 36 hours off in total. He has never left my side at hospitals, A & E's, doctors, alternative practitioners etc. He has sorted all my supplements and meds and tried to make sense of all the differing opinions/info. He has had no social life or breaks and dedicated his days to caring for me and Noah and the myriad of problems we have faced. He has held my hand through the many sleepless nights - often even sleeping on the floor beside my bed or a cramped couch - sometimes we would re-locate around the house 4-5 times trying to find a place for me to sleep when insomnia was at its worst. He has driven miles to seek help. His own health issues have taken second place ... he wears a mouth guard at night because he has ground his teeth so badly from all the stress. He walks with a limp, has a twitching eye and body ticks, skin disorders, a bad back etc. All of this the result of prolonged stress beginning with the collapse of our business and then proceeding through to all of the tragedies his wife and son have been through and the demands placed on just one human being.
Aaron, I love you with all my heart - thank you for believing in me, encouraging me and never letting go. Your persistence and belief in my recovery and in the injustice of the medical world has given me time with you and our son that would otherwise have been lost. Last year in spite of all the odds I achieved driving, reading, walking, writing poetry, caring for our son - buying him clothes, walking to feed ducks, taking him to parks and playgroups, teaching him colours and the alphabet, cuddling him, laughing with him and admiring all his new skills and words. In spite of all the pain, those times were the happiest of my life and I owe it all to you. In fact I made such good progress you would often say then that I was better than you.
My husband is my hero ... he is handsome, brave, strong, sensitive, a gifted artist, funny, charismatic, cheeky, adventurous, determined, a hard-worker, forgiving, loving and intelligent. He is gifted with languages and can do well at just about anything he applies himself to - he is so practical and mechanically-minded.
Here is a poem I wrote for my husband which appeared on our wedding invite:
Blue eyes meet green
and journey into the ocean
Thoughts meet hearts
I smile at your smile
A sacred revelation
No longer afraid
I have found my home.
I love you sweetheart ... people will learn more about your superhuman sacrifices and challenges and may God richly bless you with more support, comfort, rest and a long time as a much-loved Dad and husband. I hope one day if it's God's will we will start a foundation to help others ... it will be called "Lily-Boh" after the daughter we hoped to have had.
Tuesday 28 June 2011
Poem for Noah
I have just returned from an Intravenous Vitamin C / Magnesium injection in a bid to help fight the harmful poisoning of the prescription drugs I have been on and to alleviate some of the severe symptoms.
Anyway, it is a hard day today as I keep returning to thoughts of last year when things were better and some of my days were filled with creative ideas, some laughter and the joys of being a Mum involved with her son's activities. Now all I do is get stuck in a thought quagmire of what supplements to take, when to take them and a question of "How the hell am I going to get through this, this time?"
However last year was certainly not all rosy .... it was filled with huge challenges too. We had a leaky home, a rat, cockroach, ant and spider invasion. All of the hinges in our house had to be replaced. Our fence collapsed. We had a fight with the Council to get a tree cut down. Our gutters needed repairing. The tiling on our deck lifted. Electrical appliances broke down repeatedly. One trip away ended up with a misplaced handbag, a Tsunami warning, a vomiting child and a house alarm that wouldn't stop. In another trip we had an earthquake at 2am - not good for someone suffering from anxiety and a sleep disorder. Our son was repeatedly ill with colds and flus to the point of requiring all-night care with a home-nurse. He developed a chronic cough which my husband and I caught. Our rabbit was attacked by a rat and our dog required major surgery. My husband had bowel problems, requiring a colonoscopy. We had spent so much money on my health problems at one point we went to a shopping Mall and melted our gold and silver to get enough money for groceries. How I thought I could keep to a fairly strict Valium detox plan is now beyond me. Throughout this time we continued to keep Noah at home trying to get his two naps in per day whilst working around unreliable and noisy tradespeople who were here all the time. We handled the above largely on our own - sometimes with little to no sleep at nights. I wish I had strategised more on how we could have enlisted more help - from emergency services or Church groups - then my husband and I wouldn't have become so worn out and I would have perhaps had more time to relax and think more carefully about how to do my detox off drugs. It was just so hard to think clearly when contending with all the above and I probably clung to the detox as a way of controlling things when everything else seemed quite chaotic.
In spite of the above description, 2010 was so much better than the previous year and I gained the ability to read, write, do some cooking, play with Noah and bath him, even go to some mother&child groups though I was often driven there. No one knew about my situation. I could go for walks on my own and take Noah for small walks too. I managed to go to the library and get him books and would do all sorts of play activities with him. I dreamt of another child although it seems illogical now given our health and financial status but at 38 I knew I didn't have much time left and so hastened my Valium detox which as you will learn later had massive side-effects. I am sure Noah would much prefer to have a Mum than a sibling and I have been on death's door many times now.
Here is a poem I wrote for Noah towards the end of last year when I was feeling a lot healthier and hopeful - although it still sounds rather bleak!
WON'T STOP
My son, my sun
Is two
Is so worth
Each labour day
And night's wrestlings
Traumas, pills and unwritable things
Will not stop me from seeing him grow
Tall like the trees he climbs
Each walk I dedicate to him
and his eager enquiries
Eyes darting like birds we watch at the window
He delights in water
A naked vision of untamed pleasure
Running through sprinklers
Swimming in the bath
At night I listen quietly outside his room
As he dialogues about the day
His early murmurings aren't hard to decipher
I understand each hungry word and marvel at his hungry mind
In the mornings he wakes
singing melodies that rise into my room
I don't know how I will rise from bed but
I do
No one will love him as I and my breath won't stop
Til he is old enough to remember me
at least
I thank God every day for the incredible gift of Noah ... I so much want to survive so he can hear my story and know how much I did to try to stay alive. Apart from my husband he is the best thing that has happened to me and you realise how everything else that you once thought was important means absolutely nothing. I just want to get my health back so I can enjoy being Noah's Mum and a better wife for my husband. I would love to join a really good Church that I feel part of and to sing in a choir one day when I am not so ill.
This is another poem I wrote for Noah when he was younger which I would sing when putting him to bed at night.
NOAH'S LULLABY
Goodnight, goodnight
my precious one sleep tight
May angels and Jesus watch
over you tonight
Goodnight, goodnight
It's time to go to sleep
Know that you are blessed from
your head to your feet
Goodnight, Goodnight
Leave your cares behind
Know that in the morning
there's wonders to find
Goodnight, goodnight
There's disappearing light
Grab on to your Arthur and
snuggle him tight
Goodnight, Goodnight,
My son you are our light
May angels and Jesus
Watch over you tonight
Many angels and Jesus watch over you for life.
Love you Noby, Mum xxx
Please continue to pray for me everyone!!!
Anyway, it is a hard day today as I keep returning to thoughts of last year when things were better and some of my days were filled with creative ideas, some laughter and the joys of being a Mum involved with her son's activities. Now all I do is get stuck in a thought quagmire of what supplements to take, when to take them and a question of "How the hell am I going to get through this, this time?"
However last year was certainly not all rosy .... it was filled with huge challenges too. We had a leaky home, a rat, cockroach, ant and spider invasion. All of the hinges in our house had to be replaced. Our fence collapsed. We had a fight with the Council to get a tree cut down. Our gutters needed repairing. The tiling on our deck lifted. Electrical appliances broke down repeatedly. One trip away ended up with a misplaced handbag, a Tsunami warning, a vomiting child and a house alarm that wouldn't stop. In another trip we had an earthquake at 2am - not good for someone suffering from anxiety and a sleep disorder. Our son was repeatedly ill with colds and flus to the point of requiring all-night care with a home-nurse. He developed a chronic cough which my husband and I caught. Our rabbit was attacked by a rat and our dog required major surgery. My husband had bowel problems, requiring a colonoscopy. We had spent so much money on my health problems at one point we went to a shopping Mall and melted our gold and silver to get enough money for groceries. How I thought I could keep to a fairly strict Valium detox plan is now beyond me. Throughout this time we continued to keep Noah at home trying to get his two naps in per day whilst working around unreliable and noisy tradespeople who were here all the time. We handled the above largely on our own - sometimes with little to no sleep at nights. I wish I had strategised more on how we could have enlisted more help - from emergency services or Church groups - then my husband and I wouldn't have become so worn out and I would have perhaps had more time to relax and think more carefully about how to do my detox off drugs. It was just so hard to think clearly when contending with all the above and I probably clung to the detox as a way of controlling things when everything else seemed quite chaotic.
In spite of the above description, 2010 was so much better than the previous year and I gained the ability to read, write, do some cooking, play with Noah and bath him, even go to some mother&child groups though I was often driven there. No one knew about my situation. I could go for walks on my own and take Noah for small walks too. I managed to go to the library and get him books and would do all sorts of play activities with him. I dreamt of another child although it seems illogical now given our health and financial status but at 38 I knew I didn't have much time left and so hastened my Valium detox which as you will learn later had massive side-effects. I am sure Noah would much prefer to have a Mum than a sibling and I have been on death's door many times now.
Here is a poem I wrote for Noah towards the end of last year when I was feeling a lot healthier and hopeful - although it still sounds rather bleak!
WON'T STOP
My son, my sun
Is two
Is so worth
Each labour day
And night's wrestlings
Traumas, pills and unwritable things
Will not stop me from seeing him grow
Tall like the trees he climbs
Each walk I dedicate to him
and his eager enquiries
Eyes darting like birds we watch at the window
He delights in water
A naked vision of untamed pleasure
Running through sprinklers
Swimming in the bath
At night I listen quietly outside his room
As he dialogues about the day
His early murmurings aren't hard to decipher
I understand each hungry word and marvel at his hungry mind
In the mornings he wakes
singing melodies that rise into my room
I don't know how I will rise from bed but
I do
No one will love him as I and my breath won't stop
Til he is old enough to remember me
at least
I thank God every day for the incredible gift of Noah ... I so much want to survive so he can hear my story and know how much I did to try to stay alive. Apart from my husband he is the best thing that has happened to me and you realise how everything else that you once thought was important means absolutely nothing. I just want to get my health back so I can enjoy being Noah's Mum and a better wife for my husband. I would love to join a really good Church that I feel part of and to sing in a choir one day when I am not so ill.
This is another poem I wrote for Noah when he was younger which I would sing when putting him to bed at night.
NOAH'S LULLABY
Goodnight, goodnight
my precious one sleep tight
May angels and Jesus watch
over you tonight
Goodnight, goodnight
It's time to go to sleep
Know that you are blessed from
your head to your feet
Goodnight, Goodnight
Leave your cares behind
Know that in the morning
there's wonders to find
Goodnight, goodnight
There's disappearing light
Grab on to your Arthur and
snuggle him tight
Goodnight, Goodnight,
My son you are our light
May angels and Jesus
Watch over you tonight
Many angels and Jesus watch over you for life.
Love you Noby, Mum xxx
Please continue to pray for me everyone!!!
Monday 27 June 2011
Typing today by myself
Yesterday I dictated my first blog to my husband to type. Today I am writing this myself. My "Type A" personality and former work as a journalist made me want to go in and edit the typos of yesterday's efforts - however I am leaving it because one of the biggest battles I have fought is my perfectionist tendencies and this incredible journey has taught me that there is no such thing as perfection and trying to be a people-pleaser instead of a God-pleaser can lead to real trouble.
Where to start? It would take a book as long as the Bible to document everything that has happened to me but I will try to give a slightly briefer overview!
Firstly, the fact that I am typing this today is a miracle itself as after all I have been through I am astounded I still have enough brain cells to construct sentences.
2007-2008 were momentous years ... my dear cousin - a gifted architect, died in China. This left me devastated and with a feeling of disbelief that he was gone at the tender age of 35. Just before leaving for his funeral we were aware my Dad had some severe symptoms. On my return from the funeral held in Australia I learned that Dad had liver cancer. The recession was on and our 7-year-old business was also hitting the skids. I was also pregnant with our first child and suffering from intense "morning" (lasted all day) sickness which didn't leave until about 7 months into the pregnancy. Treatment by an acupuncturist for the sickness - which led to a near miscarriage - coupled with a negligent midwife only added further stress.
It was expected that Dad would survive long enough to meet our child but things changed dramatically and I decided to move into my parents' home to help care for Dad during his final days as he did not want to be in a hospice. This is something I deeply regret as although I loved him dearly, in retrospect I was already burnt out and should have been caring more for myself and the baby who would kick hard when I was bawling my eyes out while watching Dad's suffering. He refused any pain relief until the last day - and this was hard to come by as we could not locate Dad's doctor and paramedics were not authorised to administer morphine so Dad was in tremendous pain on his last day. Although I knew he was dying, I still held on to the hope of a miracle and would sit by the end of his bed praying through the nights while he was suffering. When he finally died I went into tremendous shock and let out a surreal noise - the family were concerned and had a doctor check me over - my husband comforted me and we managed some sleep that night.
I went into over-drive with the funeral preparations ... writing a poem for Dad, a eulogy, organising all the readers, music, editing the order of service, creating a slideshow of photos etc etc - looking back it was my way of coping with the anxiety and shock of it all. I wish I'd had counselling then and directly after instead of being in my overactive mode to cope.
It was certainly not an ideal pregnancy ... sick, two people dying and a business collapsing. With all that to contend with, we skipped most of the antenatal classes - although I did a separate breastfeeding course. I hadn't spent much time preparing a post-birth plan. I was reading books on grieving at the same time as pregancy books ... desperately trying to get my grieving under control in order to prepare for the baby's arrival. I worked up until about 2 weeks before the birth ... then spent time furiously washing all the baby clothes and preparing the room and baby items.
I was very careful about what I ate during the pregnancy - avoiding caffeine, chocolate etc - all my products were organic and I even had an alcohol-free mouthwash. I walked regularly and managed some yoga classes and did everything humanly possible to assure the optimum health of the baby.
I was very adamant that I wanted a natural birth and did some hypnobirthing training whereby you are able to breathe the baby down the canal and control the pain using several mind and visual techniques. By the time I arrived at the hospital I was very dilated and in a lot of pain but in my usual "downplay the pain" fashion (which I will elaborate on later) I bravely walked up to the birthing room with a smile on my face.
Needless to say, it was a hideously painful experience and I should have been flexible enough to see if I could have had an epidural - who knows I may have been too dilated in any case. Our son's chin was stuck in an unusual fashion which was prolonging his arrival and making me weaker and weaker. My husband was an absolute hero massaging and coaching me through the experience. He was essentially the one that birthed that baby - the midwife was virtually just an observer offering very little advice or assistance - just the start of many negligent practioners. When I look back now she never kept to the book of items to discuss at each meeting, she never weighed me, she downplayed a call I made when the baby hadn't moved for some time, she always talked about how tired she was renovating her kitchen and delivering other babies etc. In fact when I rang to say it was time to leave to meet me at the hospital she said just to wait at home for longer and things would be fine but I instinctively knew it really was time to go ... I am lucky I didn't deliver our son in the car as I was nearly 9 cm dilated by the time I reached the hospital steps.
Noah arrived with eyes wide open - and already giving a hint of his amazing interest in the world and what has come to be an astounding intelligence. I had been up the whole previous night in labour (my faithful dog Checkers stayed by my side comforting me) and finally crashed that delivery night around 2am - full of stitches and exhausted. Husbands were not able to stay the night so Aaron left.
I was sharing a room with another woman and the staff were far from attentive - even questioning why I needed assistance putting the baby into the incubator when I felt weak. Suffice to say I figured I would be more comfortable at home and have access to more palatable food! So after two nights I left with our precious son and a very naive sense of what is required to care for a newborn and how exhausting it is when you have lumpy breasts, itchy stitches and are grieving.
After a nervous drive home we arrived with our wee man who looked a bit jaundiced so we placed him near some soft sunlight coming through the lounge window. He went into his new room and slept and before long my niece and mother arrived for a visit. It was during this time that Noah experienced an episode of apnoeia and we frantically passed him back and forth - his litttle face was looking purple and we were gently shaking him trying to see if he was breathing. We were in shock - all that care of a child leading up to the birth - and he might die on the first day home! We ran to our neighbour next door who was a Plunket nurse ... she wasn't too sure what to do so we didn't hesitate and I carried Noah into the car as we sped to the nearest A&E. His oxygen was low and they got some colostrum from me to try to get his blood sure levels up - needless to say I was hysterical. I had just lost my Dad and was starting to think I'd lose my much-loved child! They sped us to hospital by ambulance - I clutched Noah holding oxygen under his nose. They kept monitoring him through the night but he was crying heaps and I was naturally distressed ... my husband again wasn't allowed to stay as they have a no-males allowed policy - ridiculous! Thankfully Noah was given the all-clear and we left the next day - I had been up all night trying to comfort him with very little assistance from the nursing staff.
As the first few days settled in I approached motherhood like an executive ... I had been given a plethora of info - booklets and such and spread it out on the dining table - suddenly feeling very overwhelmed.
More tomorrow into my descent into a prescription drug nightmare that even Peter Jackson would struggle to capture in a film. In the meantime, please pray for a miracle for me so I can return to full health of body, mind and spirit - finally able to use the gifts God has given me for His glory and. In particular I ask for help with sleep and a lessening of intense and vivid dreams caused by drugs.
Where to start? It would take a book as long as the Bible to document everything that has happened to me but I will try to give a slightly briefer overview!
Firstly, the fact that I am typing this today is a miracle itself as after all I have been through I am astounded I still have enough brain cells to construct sentences.
2007-2008 were momentous years ... my dear cousin - a gifted architect, died in China. This left me devastated and with a feeling of disbelief that he was gone at the tender age of 35. Just before leaving for his funeral we were aware my Dad had some severe symptoms. On my return from the funeral held in Australia I learned that Dad had liver cancer. The recession was on and our 7-year-old business was also hitting the skids. I was also pregnant with our first child and suffering from intense "morning" (lasted all day) sickness which didn't leave until about 7 months into the pregnancy. Treatment by an acupuncturist for the sickness - which led to a near miscarriage - coupled with a negligent midwife only added further stress.
It was expected that Dad would survive long enough to meet our child but things changed dramatically and I decided to move into my parents' home to help care for Dad during his final days as he did not want to be in a hospice. This is something I deeply regret as although I loved him dearly, in retrospect I was already burnt out and should have been caring more for myself and the baby who would kick hard when I was bawling my eyes out while watching Dad's suffering. He refused any pain relief until the last day - and this was hard to come by as we could not locate Dad's doctor and paramedics were not authorised to administer morphine so Dad was in tremendous pain on his last day. Although I knew he was dying, I still held on to the hope of a miracle and would sit by the end of his bed praying through the nights while he was suffering. When he finally died I went into tremendous shock and let out a surreal noise - the family were concerned and had a doctor check me over - my husband comforted me and we managed some sleep that night.
I went into over-drive with the funeral preparations ... writing a poem for Dad, a eulogy, organising all the readers, music, editing the order of service, creating a slideshow of photos etc etc - looking back it was my way of coping with the anxiety and shock of it all. I wish I'd had counselling then and directly after instead of being in my overactive mode to cope.
It was certainly not an ideal pregnancy ... sick, two people dying and a business collapsing. With all that to contend with, we skipped most of the antenatal classes - although I did a separate breastfeeding course. I hadn't spent much time preparing a post-birth plan. I was reading books on grieving at the same time as pregancy books ... desperately trying to get my grieving under control in order to prepare for the baby's arrival. I worked up until about 2 weeks before the birth ... then spent time furiously washing all the baby clothes and preparing the room and baby items.
I was very careful about what I ate during the pregnancy - avoiding caffeine, chocolate etc - all my products were organic and I even had an alcohol-free mouthwash. I walked regularly and managed some yoga classes and did everything humanly possible to assure the optimum health of the baby.
I was very adamant that I wanted a natural birth and did some hypnobirthing training whereby you are able to breathe the baby down the canal and control the pain using several mind and visual techniques. By the time I arrived at the hospital I was very dilated and in a lot of pain but in my usual "downplay the pain" fashion (which I will elaborate on later) I bravely walked up to the birthing room with a smile on my face.
Needless to say, it was a hideously painful experience and I should have been flexible enough to see if I could have had an epidural - who knows I may have been too dilated in any case. Our son's chin was stuck in an unusual fashion which was prolonging his arrival and making me weaker and weaker. My husband was an absolute hero massaging and coaching me through the experience. He was essentially the one that birthed that baby - the midwife was virtually just an observer offering very little advice or assistance - just the start of many negligent practioners. When I look back now she never kept to the book of items to discuss at each meeting, she never weighed me, she downplayed a call I made when the baby hadn't moved for some time, she always talked about how tired she was renovating her kitchen and delivering other babies etc. In fact when I rang to say it was time to leave to meet me at the hospital she said just to wait at home for longer and things would be fine but I instinctively knew it really was time to go ... I am lucky I didn't deliver our son in the car as I was nearly 9 cm dilated by the time I reached the hospital steps.
Noah arrived with eyes wide open - and already giving a hint of his amazing interest in the world and what has come to be an astounding intelligence. I had been up the whole previous night in labour (my faithful dog Checkers stayed by my side comforting me) and finally crashed that delivery night around 2am - full of stitches and exhausted. Husbands were not able to stay the night so Aaron left.
I was sharing a room with another woman and the staff were far from attentive - even questioning why I needed assistance putting the baby into the incubator when I felt weak. Suffice to say I figured I would be more comfortable at home and have access to more palatable food! So after two nights I left with our precious son and a very naive sense of what is required to care for a newborn and how exhausting it is when you have lumpy breasts, itchy stitches and are grieving.
After a nervous drive home we arrived with our wee man who looked a bit jaundiced so we placed him near some soft sunlight coming through the lounge window. He went into his new room and slept and before long my niece and mother arrived for a visit. It was during this time that Noah experienced an episode of apnoeia and we frantically passed him back and forth - his litttle face was looking purple and we were gently shaking him trying to see if he was breathing. We were in shock - all that care of a child leading up to the birth - and he might die on the first day home! We ran to our neighbour next door who was a Plunket nurse ... she wasn't too sure what to do so we didn't hesitate and I carried Noah into the car as we sped to the nearest A&E. His oxygen was low and they got some colostrum from me to try to get his blood sure levels up - needless to say I was hysterical. I had just lost my Dad and was starting to think I'd lose my much-loved child! They sped us to hospital by ambulance - I clutched Noah holding oxygen under his nose. They kept monitoring him through the night but he was crying heaps and I was naturally distressed ... my husband again wasn't allowed to stay as they have a no-males allowed policy - ridiculous! Thankfully Noah was given the all-clear and we left the next day - I had been up all night trying to comfort him with very little assistance from the nursing staff.
As the first few days settled in I approached motherhood like an executive ... I had been given a plethora of info - booklets and such and spread it out on the dining table - suddenly feeling very overwhelmed.
More tomorrow into my descent into a prescription drug nightmare that even Peter Jackson would struggle to capture in a film. In the meantime, please pray for a miracle for me so I can return to full health of body, mind and spirit - finally able to use the gifts God has given me for His glory and. In particular I ask for help with sleep and a lessening of intense and vivid dreams caused by drugs.
Sunday 26 June 2011
Prescription drug nightmare
I am lying on the couch dictating this to my beautiful husband I am so weak at the moment that all I can say is I have been the victim of nearly a three year journey of the most in describable mental and physical pain caused by medical malpractice in the administration of prescription drugs.
There pyscho active qualities and failure to get informed consent or notify people of there addictive qualities has nearly killed me over a hundred times I'm a Christian and praying for the ability to stay alive to tell my testimony to the world so that no one else will have to suffer the same agony.Please pray for me my husband Aaron who has not left my side for close to three years and for my beauitiful son Noah who is nearly three.
I have quite literally been experienced the horrors equal to a concentation camp and have fought so hard to stay Alive for my son.
There pyscho active qualities and failure to get informed consent or notify people of there addictive qualities has nearly killed me over a hundred times I'm a Christian and praying for the ability to stay alive to tell my testimony to the world so that no one else will have to suffer the same agony.Please pray for me my husband Aaron who has not left my side for close to three years and for my beauitiful son Noah who is nearly three.
I have quite literally been experienced the horrors equal to a concentation camp and have fought so hard to stay Alive for my son.
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