My Spirit in the Sky

Part 1; Kicky Kid

When I was confirmed pregnant in October 1997 for the third time after going through two missed miscarriages just on four years ago, I was ecstatic. At the time, it had not bothered me........much. Now they seem to play on my mind. This time I made the decision I was going to have this much longed for baby. Aaron however, took a few days to get used to the idea. He reasoned that this was all very unplanned. We had just purchased and moved just 10 months earlier into our first home (the home we still live in to this day!). He felt the physical, emotional, and financial stress and the pressures it would add to our lives were problems we just didn't need. After a few very emotional discussions over many long sleepless nights, we agreed that maybe the time was right and maybe it was meant to be. We immediately told our respective families who were a combination of shocked, concerned, and hesitant about our talks of bringing a child into the world and their belief that we should get married.
So, we had a ‘family meeting’ of sorts, we invited our parents over and we talked it out. I don’t think Aaron wanted that discussion, I wasn’t exactly comfortable with it. Don’t get me wrong like any typical young female I had dreamed of my wedding and how it would be…..4 months pregnant with a huge mortgage and apparently unsupportive parents wasn’t in that dream. There was also a proposal, not necessarily fancy, but a memorable proposal, thought up by my new fiancé. Yet here I was, at the back of our house, outside ‘Aarons Shed/Mancave’ discussing the pros and cons of getting married before or after the birth of our 1st child with our parents.

I guess we were talked into it, or talked ourselves into it and I found myself busy planning a wedding to happen in just 3 months’ time! After many interstate phone calls to our relatives our wedding date was finally agreed and set for Saturday the 17th of January 1998.

I need to pause here and ask do you have any idea at all WHAT WERE WE THINKING? The answer is, I don’t think we were! Think about this; now we were getting married in mid-January when it is a) HOT in Australia, like the hottest it gets! It was likely it would be and it was a 40 degree days with no shade and the sun beating down relentlessly make a wonderful image for a wedding. Particuilarly awesome combination when you are a fair skinned 4 months’ pregnant redhead! And b) It’s the middle of summer school holidays, there are kids and families everywhere. Every resort, every hotel, ANY available accommodation is booked up waaaaay in advance, even the ‘Honeymoon suites’!  Remember that point as we continue with the story!

I wasn't too well for the first few months of my pregnancy with morning sickness and dizziness on and off during the days and restless uneasy nights, however I was so happy to be pregnant that it wasn't anything I couldn't handle. Our wedding plans were coming along well and the extra time at home was turning out to be quite handy. Within two months I had our wedding organised and aside from a few small details the day was coming together.

Our first ultrasound was to be at 18 weeks, just 1.5weeks before our wedding and I waited patiently for the day. I remember reading that the first kicks or movements often occur anytime from around 16 weeks on but are more often than not missed until the baby has grown a little more. I distinctly remember the first time I felt a kick, it was about a week before my ultrasound and it certainly eased my inquisitive mind. I was so excited I begged for the tiny being within me to do it again and he did. From then on we would play all the time and our baby was affectionately known as our Kicky Kid. I would poke at him and he would kick or poke back, sometimes he would be so active that Aaron would whisper to him 'Hey buddy, stop kicking your mum' and he would! I had a feeling that I was having a boy, Aaron didn't want to believe it, even after our ultrasound technician confirmed my suspicion by 90%. Aaron just refused to believe, he so much wanted a son that he thought if he didn't believe it then it might be so. At the time it was logical to him :)

Our ultrasound went fine, aside from the technician complaining that our bub wouldn't stay still long enough for her to measure him. I can still remember the proud look on Aaron's face as we watched our baby wriggling around on the screen moving his arms and legs around. It even looked as if he gave us a big wave, with his hand way up over his head. They estimated our babies gestational age at 17.5 weeks and I was given an expected delivery date of 13/06/98.

In the following week and a half, I did stress myself out a little more than necessary with last minute wedding panic's but nothing that seemed to cause any ill side effects.

Part 2; The Wedding

Although we had been living together 6 years already we decided to be traditional so Aaron stayed at home with his groomsmen and I stayed at my Mum’s, the home I grew up in.
Early in the morning of my wedding we had a phone call that would change the course of the day in a way no one expected. At 6 am the phone rang, it was the ranger in charge of the park at which our wedding was being held. I answered the call and initially he asked very calmly and politely if he could please speak with the Mother of the Bride. I told him he was speaking to the bride and he again repeated that he would like to please speak to the mother of the bride. He was still calm but I could tell something wasn’t right. I asked calmly if he could please tell me what was going on and that my step-dad was getting my mother to come to the phone (we only had cord phones in one or two rooms back then!). The Ranger calmly and slowly informed me that there had been a break in at the park overnight and that sadly vandals had destroyed the large marque we hired to accommodate our reception. Turns out they were more than simply destructive; they had spelled out two rude words with the remnants of the broken wood from the marque supports across the ground.....Imagine if you will a 19-week pregnant bride being told all this, at 6 am with her wedding ceremony due to start in 5 hours. All I could think was that there was no marque and therefore no reception, so there would be no wedding..........I panicked.

After around 30 minutes of me running around as if the sky was falling, my maid of honour and bridesmaid (who was also my sister-in-law) arrived. They managed to calm me down just in time to leave for the hairdresser's. With us out of the way my step dad, acting in his ever naturally cool and calm self, arranged for a new marque to be erected immediately.

I was ready to arrive on time, we had a new marque, Aaron and the boys were waiting at the monument and the cars were ready to collect us, then there was another glitch in communication after the mornings delays meaning we had to start the ceremony an hour late.

The day was beautiful but hot. The sun shone brightly all day and there was not a cloud in the sky. We were married by the celebrant and then went to have photos in the garden (even as I write this I hear myself not saying ‘photos in the garden’ but ‘get terribly sunburnt and dehydrated’).

By just after 2.30 p.m. when we finally sat down for 'lunch' , I began to feel a little faint. It had been a long day and being that I had just gotten into my dress that morning by breathing in, the time had come to change my outfit. Luckily my ever observing Mother had noticed how tight my dress was becoming and we had been to the shops and bought a 'leaving outfit' in anticipation :) The day went so quickly that and I am so very glad we had it video recorded from start to finish. Ah the finish........… As far as a traditional wedding goes we had pretty much broken most of the rules and leaving was no exception.

Most newlyweds are seen off by their guests in a vehicle loudly decorated by the best man and groomsmen. Not us! My stepfather who had organised and arranged all the equipment etc. and had been MC for the day had arrived early in the morning in our car. The plan being that we would leave in the car and he would go home with Mum. Well as the guests started to thin out and the bouquet had been thrown, my step dad began packing our car with the accessories he had brought in the morning. Before we knew it almost everyone had gone, the marque was being pulled down and there was my step dad about to leave in our car LOL. We managed to stop him and repossessed our car but not before reloading all his things into another car :) The next day we had a BBQ at my mother’s, so we could spend a little more time with all our relatives that had travelled to be with us. Again it was a great day filled with much discussion of my impending motherhood. After another long day we returned home to pack for our one week honeymoon for which we were due to leave for early the following morning. Our honeymoon was shorter than we planned. I was happy to be pregnant but disappointed that we weren't able to do all the summer activities available at the resort we stayed in and because of it Aaron became bored. So, we decided to return home early where it was free to sit around watching movies and eating food :) We spent the last few days of our honeymoon together at home. I am glad we did as during that week we spent more time than before talking about our baby, about who he would look like, how tall Aaron wished he would become (of course only if he WAS a boy!) what we would do together. We talking about our future as a family..........… The next few weeks were pretty normal with the Kicky Kid being regularly active, quite often just as I was trying to get to sleep :) There were no noticeable changes in my pregnancy other than I was finally beginning to show, which for me was pretty exciting. Although I was nearly six months along, being just over 5 ft tall, a fairly small build but wide hips, I did not begin to show too obviously (unless you knew me or saw me in certain clothes) until just after the wedding. It was as if our baby had waited just for that, just for me so that I would just still fit in my dress! I was proud to say I was pregnant and wished I had shown more but at the time I was glad that I didn't look too pregnant at our wedding.

Part 3; It's not time

I will never forget the 22nd of February the beginning of my 24th week of pregnancy. We had arranged a BBQ at home for our friends that weren't able to join us at our wedding. My day started early with a trip down to the supermarket with a close friend for supply's. This was followed by us preparing the food etc. while the guys set up the yard and chopping wood for the BBQ . At about 12.30 everyone started to arrive. By 1 p.m. the meat was out on, drinks dip and chips were shared and short stories were being told. At about 1.30 I commented to another pregnant friend that I was experiencing some cramps in my lower gut, sort of similar to constipation. She brushed my comment off replying that they were probably Braxton Hicks contractions. I also commented to Aaron on the pains and he told me I was probably hungry as I hadn't eaten yet that day and that the food was just about to be served. So I ignored the pains passing them off as just that, hunger and maybe a little wind. I continued to be a good hostess, serving out all the food, making sure everyone had a plate full and a drink and then sat down myself. It was at this time, when I finally stopped that I realised I had been having constant pains quite regularly now for maybe an hour or so. I remember looking at my watch and it was 2.05 p.m.. I put my plate aside on the wall, asked a friend to keep his eye on my food and headed inside. On my way through the kitchen I passed a friend getting a drink "You don't look too great Sam, not feeling good?" I quickly replied no and hurried past to my ensuite. By now the pains were starting to get worse and were coming more often. After I had been in the house for what seemed like forever but was maybe 5-10 minutes Aaron noticed I was missing from the group & came to find me. What he found was his wife in shear agony, he took one look at me and knew something was terribly wrong. He grabbed the telephone and phoned my Mother telling her that I was having bad pains and that I thought it felt like I was constipated (which is how it felt to me at the time). While Aaron was talking to Mum about getting her Doctor to come up to the house I began bleeding quite heavily. Aaron was relaying what was happening to Mum on the phone and I was having urges to push. Aaron was trying to tell me to calm down and pleading with me not to push. I too was pleading, crying and begging our baby to hang on, screaming that this couldn't be happening. I have never seen Aaron so calm and together, he describes it very differently, saying that he was pacing backward and forward and felt like he might as well have been banging his head on the brick wall. Neither of us could ever have imagined the life shattering experience we were about to encounter. All of a sudden I felt a huge rush of water and then a steady flow of blood I screamed at the top of my lungs "NO"..............one of my friends heard my scream from the backyard and rushed in to see if she could help. I told her what had happened, she told Aaron he hung up from Mum to call an Ambulance. It felt like an eternity that we waited for the 'taxi' ( For some unknown reason I have referred to the ambulance as a taxi since each time I talk about it) however it was only about 12 minutes since our call when they arrived. The ambulance officers were very sensitive to the situation but needed to ask a lot of questions to know what was happening. Within 5 minutes they had me on a trolley with a drip being inserted into my left wrist and oxygen "for both you and your bub" to keep us going. They rushed me into the Ambulance, Aaron jumped in the front and two friends followed closely behind. My Mother, who had left her house as soon as she hung up from Aaron, drove the 30 minute drive and beat us! On arriving at our local hospital, the midwife asked me another set of questions, poked and prodded me a bit and then gave me a steroid shot for my baby's lungs. They kept me on a Ventolin drip and oxygen and told me that the doctor on call had been phoned and would be there soon. The midwife checked my babies heartbeat, which was still easily detectable, and it was beating strongly. I was still losing blood, but the drip had suppressed the contractions and the realisation was starting to hit. We had started to discuss the facts of what was happening with the midwife and about the decisions we were going to need to make. The Doctor arrived and examined me thoroughly confirming what I already knew. I had lost all my amniotic fluid and therefore my baby was no longer protected from disease and infection and chances of survival were very thin. My cervix was dilating and I was well on my way to delivery. I was told they would be transferring me to a larger hospital where if my baby was born alive there would be the equipment to possibly keep him alive. I was to go over and over my babies chances of a normal life, should he make it through, with all the doctors and nurses that came into my contact for the rest of the night But even then, at 5 p.m. both Aaron and I knew that this was natures call and for no explainable reason our baby was not going to survive. It was around this time that I had an experience that still scares me even to recall. I was lying in the hospital bed and for just a moment I was alone, I remember looking up to the painting on the wall and the chorus to the song that goes - "Going on up to the 'Spirit in the Sky'" started repeating over and over in my head. In a way it was calming but still sends a shiver down my spine to this day.

Part 4; Deafening Silence

I was then transferred to a larger hospital about an hour’s drive through the city where a room in the delivery ward was available. My Mother followed close behind the whole way and we were even spotted zooming down the highway by Aaron's mother and my Aunt. Who commented that she stopped to watch the ambulance and then saw a car very similar to my Mother's following in close pursuit behind! Again more questions and examinations while another midwife checked my baby's heartbeat. This time it was harder to find but was still beating strong. It was then that the Doctor at this hospital asked us to make the hardest decision of our lives. She too had fully examined me and told us me that she could feel my baby's hand above his head and that it would quite likely damage his arm when he was delivered due to this position, I was also already very dilated and well into Labour. She explained the ramifications of having such a premature baby, of the struggles that at 24 weeks gestation a baby would have now and possibly for life. She asked us if we wanted the team who specialise in this area to be at my delivery to assist our baby on arrival and keep him alive if it was possible. She was very sensitive and caring and would continue to support us throughout the next 12 hours. Over the next few hours we talked with my Mother who had been with us since my transfer and a close friend of the family who had come to offer support. I was kept on the drip and given gas for the pains. The Doctor finally needed our decision at about 9 p.m. as the team would need to be notified. It was with tears in our eyes and the biggest pain in my chest that I can ever remember that we gave the Doctor our answer. We told her we were prepared for our baby to be born naturally and accepted that he would quite possibly die within moments of birth, if he made it at all. After what felt like the longest night of my life, with Aaron right by my side the whole time, I survived listening to the lady next door go through a 5 hour, very loud labour. All the time I was thinking that her baby was probably being born at full term and would be healthy and mine wasn't. I knew that my baby was slowly dying within me. The rest of the night and early hours of the morning I spent having massages and taking breaths of gas whenever I felt necessary for the contractions. At about 6 am with sun beginning to rise throughout the buildings I felt the need to get up and use the bathroom. I woke my Mother who was sleeping in the chair next to me and she pushed me down the hall in a wheel chair. From being vertical for the first time in hours my baby's entry into the world was put into top gear and within minutes of returning to my room I was having more frequent contractions. The midwife asked if I wanted an epidural and I responded very firmly that I had already told them I didn't want to feel the pain as I was already in enough. The next two hours went like two minutes and at 8.25 am after only four big pushes our son came silently into the world. The silence was deafening as it told me my son had been born still. The midwife asked if I wanted to see him and I all I could do was shake my head and quiver through my tears 'not straight away'. The nurse told me to give one last big push to see if I could deliver the placenta naturally and I didn't have any problem with that. The midwife took our son away to clean him up, weigh and measure him. Aaron held me and didn't let go for what felt like forever. He kept telling me it wasn't my fault, that it was going to be OK and that we would try again as soon as I wanted to. It didn't take me much longer to decide that I did want to see my son and I wanted to hold him. The nurse brought him in and they had dressed him in a tiny blue dress with white dots and had a tiny white bonnet on his head and tiny white booties on his feet. He was wrapped in a baby blanket and was so tiny it engulfed him. For the first time I held my baby boy and together with Aaron we took in every feature of his tiny body. For just a moment in time I really felt like a real family. Sitting up holding our baby in my arms with Aaron's arms around us both. It was at this time that Aaron asked me what we were going to name our baby. I looked deeply into his eye's searching for what to say, but before I could whisper a word he blurted out "Aiden, with George as a middle name after your Grandfather ... ok??" We had talked about names a few times in the last few weeks and Aiden was the name Aaron had marked in the many naming books we had. All I could do was nod my head as I looked down at Aiden lying in my arms. He was so silent and still, this was not how it was supposed to be. He was to me and forever will be my perfect baby. Aside from a badly swollen right arm from his position during delivery he looked beautiful and was just like his father in every way. Aiden weighed 660 grams/22 oz and was 34cm/13 inches. His hands were perfect and his feet were already large like his Dad's measuring over 1.5 inches. I looked at every feature of his body, trying to take it all in and to lock the memories safely away in my heart. Aaron didn't want to hold him but my mother did and as she rocked him and walked around the room talking to him she said she felt him smiling down on us. I vividly remember her looking to Fran who had also stayed close all night, they smiled at each other and Mum said, "He says he'll be back again, it's just the time wasn't right" and Fran nodded. For a moment I felt a small amount of peace, that at least Aiden had not suffered. No reason was ever given for his death, other than they think he died of hypoxia, a lack of oxygen during labour. Even after our permission for an autopsy, the results of which we didn't receive for over 6 weeks we still have no answers. An autopsy report is such a cold and technical document I only recommend it to those who will not mistake the terms for worse than they can sound to the layman. We will never know why. Which has been one of the hardest things of all to accept, whether Aiden's death could have been avoided. I was moved to a private room in the maternity ward, which to me felt like punishment. All around me I could hear baby's crying and cooing. New Mothers were nursing their newborns or bathing them for the first time. Precious moments that I would never experience with my baby. One nurse was very insensitive, she inspired me to design a wooden teardrop, to donate to the hospital where Aiden was born. She barged into my room and without even looking at me loudly asked "Have we finished feeding bub in here yet? Ready to go back to the nursery?" My Husband gave her with the worst look I had seen him make in the past 24 hours, it was the look of death. I think she sensed it too as she just backed out the door without saying another word. I read weeks after about a hospital that put a heart on the door of any mother who's baby was stillborn or died shortly after birth. Thus informing anyone entering the room that they need to be sensitive to the new families situation. I wanted so much to stop other bereaved parents having to endure the same experience. The whole thing upset me terribly and I started to feel even more cheated and started blaming myself and doubting my own body. I was given a sedative to help me sleep that night and the following morning I awoke in even more pain. My milk had come in and I was very swollen, this was so for some weeks after. I had to wear nursing bra's and maternity pads, another of nature’s cruel tricks. The hospital social worker came to our room and talked to us for an hour or so, giving us some brochures and contact numbers for a support group. I asked to see Aiden one last time before I discharged myself from hospital and enrolled in the early discharge program. A midwife would then visit me at home for the next week to monitor my condition. They had offered us a camera to take photographs of Aiden and I regret not doing this, having photos taken with me and Aaron. Thankfully the nurses took a few photo's for us and although they are not the best I am so very glad that I have them. I carry one in my wallet and have one displayed with all our other family photos. The day after my son Aiden was born still I returned home and refused to talk to anyone other than Aaron or my Mother for over two weeks. I was filled to the breaking point with pain and there was no room for anything or anyone else. Aiden consumed my thoughts and I was filled with anger, I wanted to know the impossible question all bereaved parents ask ....... WHY??



Part 5; Time to Grieve

When I first returned home my depression and withdrawal were made worse by the very first midwife who visited. She introduced herself, got out my charts and proceeded to ask my Mother and Aaron to leave the room so she could have a talk to me and do her examination. It was with very worrying looks that they both went out into the backyard leaving me alone with her. Now I have nothing against midwives, Aiden was delivered by a very sweet and caring midwife. However this lady had a way about her that made the hairs on my neck stand on end. She proceeded to tell me that she had read my notes and considering that I had been through two termination's and a D&C it was apparent that I had a weak cervix and that was why my baby was born prematurely. Of course the reality was very different but she had me convinced that it was my fault, that had I had a stitch earlier it might have been avoided and that for my next pregnancy I should ask for the stitch to stop it happening again. After she had left and I told my mother what she had said to me Mum went into a frenzy. She immediately called the hospital where the midwife had been sent from and cancelled the visits, advising them that her doctor would be taking over my care and would they kindly transfer my records to her surgery. Over the next few days Aaron, my mum and her Doctor reasoned with me that the midwife had obviously not read my whole report. She was not at the delivery and she quite obviously had her facts wrong. My labour had been at least 20 hours, we estimated the time my contractions had begun as 12.30 p.m. the day before delivery. The following Tuesday we buried Aiden at the cemetery on the hill behind my mother's home in the Baby Lawn area. It still amazes me how many baby there are buried there, in Aiden's area alone I would estimate that there are nearly 500 Babies. I had decided to only have a small ceremony with only immediate family, however I was touched that more of my relatives asked if they could attend. We had a viewing before the ceremony and Aiden was dressed in a beautiful little dress that Aaron's mother had handmade especially for him. He truly looked peaceful and I wish so much that I had a picture of him in his outfit. I was given the original outfit to put in Aiden's keepsake box and thankfully Aaron's Mother took photos of the outfit he is buried in. The next three weeks are a blur to me. I would spend the days and nights crying from my memories and from the pain and loneliness I was feeling without Aiden. I am still surprised that the people I expected would support us didn't and those whom I never imagined would did. I found it hard to face some friends after their desertion of us at our time of need and we haven't seen them since. We have lost a lot of friends through our grief yet made a select handful of treasured friends to whom we will be forever grateful. I was soon to learn that a lot of my friends were to become strangers and stranger were to become friends. I was able to bring myself to attend a support group meeting around one month after Aiden's birth but unfortunately that was not what I felt I needed at that time. For me there was too much grief under one roof and too many multiple losses, too many up front reminders all too early for me to handle. I knew that talking about my experience and sharing my feelings and thoughts with others who had also been there was very important in my healing process. I just didn't feel comfortable in a group. So when my mother offered me the use of her computer to search for information and resources on the Internet I began the healing process I found Pen-Parents and I haven't look back since. I found other mothers with similar stories and shared my story with anyone who would listen. This became my life, I would wake in the morning, shower and drive straight to my mother's house. I wouldn't even stop for fuel, leaving it for my husband to do. I wanted to remember every dream I had for Aiden and every plan. I wanted the world to know who he was and what he meant to me. It was through this that I met Katie a true friend in my time of need. Katie had also experienced the loss of her 24 week old daughter Carly Shane only two weeks prior to Aiden's unexpected arrival. Our experiences were so similar that we formed an everlasting bond through our grief. We helped each other by sharing our pain and sadness, but we also learnt to laugh again together, and all from different hemispheres. The loss of a child is not something you ever get over. I slowly learnt that with the help of friends who are willing just to listen and from dealing with my grief in my own time and in my own way, it eased the burden, if only a little. I also designed this very memorial page dedicated to Aiden for the Internet. As well as a my home site with poetry, quotes, helpful resources and links for bereaved parents, family and friends it is a way of expressing my grief and also my love for my son. Even just surfing the sites helped make me aware of others grief and observe other ways of dealing with a loss as tragic as mine. I stayed off work for another six weeks but eventually had to return part-time as we were suffering financially. Returning to work was a shock to my system, I felt as if everyone was staring at me and whispering about me. Some were even asking if I was over it yet. How could I tell them that you never get over the death of a baby, you get over a cold or a broken leg. One lady was very insensitive and even commented that I had deserved what had happened to me as I had smoked during my pregnancy. This played on my mind for weeks until I was able to discuss what she was saying with a professional councillor. Not that I wasn't coping with my grief, I felt I was doing quite well. I just needed an outlet once I returned to work. I was becoming a pretty good actress both at home and work. I was even having to hide my pain from Aaron, as after some weeks he had commented that seeing me so unhappy all the time was a continual reminder to him. He was hurting he just wasn't showing his emotions as openly as I was and his coping mechanisms were very different to mine. We have both grieved in our own ways and only recently have been able to talk about Aiden again. The journey is far from over and I will never 'get over' losing Aiden and neither will Aaron but we are learning to live with the pain. I know that nothing in my life will ever erase my memories of what happened the last night of Aiden's short life but sometimes it all seems too unreal. The whole scene is indelibly imprinted on my mind and will remain so for the rest of my life. I have learnt a lot of lesson in life and I believe I have become a stronger more compassionate person through my pain. Aiden has shown me I can love more than I knew possible and can forgive people more readily. I have learnt to appreciate life for the delicate and precious gift that it is. Day by day it is becoming easier to smile at the thought of Aiden and of our short but precious time together. The sound of his name no longer brings tears to my eyes every time I hear it, although there are still times when I am overcome, and I do cry, sometimes uncontrollably. I still visit his grave site regularly and have the photograph of him in my wallet and on display with my other family photos. I am proud to say I am a mother and will tell anyone who wants to listen my story in the hope that more people can be made aware of how often this type of tragedy is occurring ................... all over the world.

I have just one photo of our sweet baby boy - that and his hand and foot prints. I will cherish them forever x

What makes a Mother

I thought of you all I closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.

A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?

Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay

I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.

I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say...

"We go to earth to learn our lessons
Of love and life and fear.
My Mummy loved me oh so much
I got to come straight here.

I feel so lucky to have a Mum
Who had so much love for me
I learned my lesson very quickly
My Mummy set me free.

I miss my Mummy oh so much
But I visit her each day.
When she goes to sleep 
On her pillow's where I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mummy don't be sad today
I'm your baby and I'm here."

So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.

They'll wait for you with Me
Until your lesson there is through.
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.

Through some on earth may not realise
Until their time is done.
Remember all the love you have
And know that you are a special Mum!

~ Jennifer Wasik ~

.

Poetry & Quotes

I read this poem at my son Aiden's funeral on the 3rd of March, 1998

~~• All Those Months •~~

Your little heart beating so strongly

All those months is silent.

Your little arms and legs

Moving so vigorously are still.

Milk falling like tears from your mothers breasts

Will never nourish you.

Your eye's will never sparkle

Your little voice forever silent.

Your mother holds you in her arms,

Timidly kisses your soft, smooth cheek

Caresses your tiny fingers

And whispers your name with tears.

She dreams of holding you

Of watching you smile and grow

Her love is always with you

A love only a mother could know.

by Margery Cordukes

~~• Whisper of an Angel •~~

The whisper of an angel Can open Heaven's gate,
A glimpse of faith and courage A love strong enough to wait,

Whisper you are safe Whisper softly, angel love,
My heart is aching so Needing comfort from above,

Tell me you are with me Whisper gently in my ear,
"You will always be my mommy" In the quiet I will hear,

My heart still aches to hold you I close my eyes and see,
Your beautiful face now And who you were to be,

Through dreams I once held close In the distance now, so far
Still you're more than just my child You're the twinkle in the stars,

So I'll hear your angel whispers "You never need let go,
Hold me, mommy, close within" Though the pain and sorrow flow,

One day we shall reunite Angels whisper words of grace,
to Angels whisper words of grace,

And I promise I will hold you In another time and place.

by Joanne Cacciatore (C) 1998-from the book Dear Cheyenne

To see more of Joanne's beautiful work
and to learn more about her daughter Cheyenne
Please visit the Cherish Corner link provided on my Links page.

~~• ONLY THE BEST •~~

A Heart of Gold stopped beating,
Two shining eyes at rest.
God broke our hearts to prove
He only takes The Best.
God knows you had to leave us,
But you did not go alone ~
For part of us went with you,
The day He took you Home.
To some you are forgotten,
To others just the past.
But to us who loved and lost you,
Your memory will always last.
~ Anonymous ~ 

 "Some people don't seem to realize that doing what's right
is no guarantee against misfortune"

*William McFee*

"We are each of us angels with only one wing
and can only fly embracing each other."

Luciano de Crescenzo.

"Like a fingerprint, each person’s journey with grief will
vary somewhat. But the general reality is this:
One cannot go around, under or over grief. One must go
through grief by leaning into the pain to work it out.............
Grief work is in essence a thorough and on-going review process. 
It takes a long time. It is never fully or finally accomplished.

Dr. Terry O'Brien

Be not forgetful to entertain strangers,
for thereby some have entertained angels unawares.

Hebrews 13:2

"Worry is interest paid on trouble
before it falls due"
Dean W.R. Inge

"Start treating yourself as if you are the most important
asset you'll ever have.
After all, aren't you?"
Author Unknown

"A deep down really hearty laugh now & then
is better than any medicine."
W.G.P.

"You can clutch the past so tightly to your chest
that it leaves your arms too full
to embrace the present."
Jan Glidewell

"Never mistake knowledge for wisdom.
One helps you make a living:
the other helps you make a life."
Sandra Carey

I have been lucky enough to have been given the gift 
of learning how to love more than I ever thought possible.
And have become stronger and more
compassionate through my misfortune.
I carried my firstborn son within me
right beneath my heart.
We shared six precious months together until
he was called to play in the Garden of Heaven.
I didn't get to know Aiden like a mother
should know their baby :(
But I loved him all those months.
I had dreams of his future, of what he would be
Aiden was even with us for our wedding :)
He was my little spark, my "kicky kid"
I am a Mother.
The Mother of an Angel in Heaven and one here on Earth

My second born son Jacob was born 10 weeks prematurely.
He is 2.5yrs old now and doing great.
Please be sure to visit his site to see how he has grown
from a tiny 3lbs 7oz to the big boy he is now!!

In Loving Memory of

Carly Shane Ingersoll

February 11, 1998 - February 12, 1998

Carly came into our lives almost as quickly as she left. Some may think that because she only lived such a short time, that the pain would be less. When we went to the doctor's office and heard her heartbeat, my husband and I would look at each other and smile. When I would lay down for bed at night, she would start kicking and moving as if to say "Hey mom, you didn't want to sleep now did you?" We had loved Carly and had hopes and dreams for her long before we ever saw her. We will never forget Carly and we know that even though she was only here, for what seemed like a few seconds, she will be in our hearts forever. Whisper of an Angel The whisper of an angel Can open Heaven's gate, A glimpse of faith and courage A love strong enough to wait, Whisper you are safe Whisper softly, angel love, My heart is aching so Needing comfort from above, Tell me you are with me Whisper gently in my ear, "You will always be my mommy" In the quiet I will hear, My heart still aches to hold you I close my eyes and see, Your beautiful face now And who you were to be, Through dreams I once held close In the distance now, so far Still you're more than just my child You're the twinkle in the stars, So I'll hear your angel whispers "You never need let go, Hold me, mommy, close within" Though the pain and sorrow flow, One day we shall reunite Angels whisper words of grace, And I promise I will hold you In another time and place. (by Joanne Cacciatore (C) 1998-from the book Dear Cheyenne)

Amen - I'm Alive!

21st October 2015

I posted a video the morning of Aaron’s 1 year Transplant Anniversary, the title and the words of the song I used described our situation almost perfectly “I Will Try to Fix You”….. I have done everything within my power (and tried some things that were not in my power), I have done everything I can think of to try to fix Aaron, to try to get the help he so desperately wants and needs....to try to stop the aggressive progression of his Primary Progressive MS. Our fight is not only against a debilitating disease that has stolen Aaron’s life, his son’s life and my life. It has stolen our hopes and our dreams and all our plans for the future. But against a system that is not in favor of those that are suffering.

Our fight to get Aaron follow up chemotherapy to support the HSCT he had in Russia has been far too much stress for our young family. Dr Fedorenko has assessed Aaron’s condition and insisted that he have follow up chemo to give the HSCT a chance to work…..to give Aaron a chance to join the 80% of successfully transplanted patients…. But no, Bureaucracy, Ethical Committees and Legal concerns have become big brick walls standing in the way of Aaron making his own life choices. NO ONE in Australia, the supposed ‘Lucky Country’ will prescribe and administer the required Chemotherapy – a treatment that is given to hundreds of people in hundreds of hospitals across Australia daily. It is a medication that is on the PBS that HAS and CAN be prescribed for MS…… why won’t any Doctor give Aaron the choice to make his own decisions in regards to what treatments he is prepared to try????? Where do I go now, what do I do? My head spins just thinking about it and my heart aches that after everything I have already done I cannot find a way to help my husband :(

On the day I posted for Aaron’s ‘1 year Transplant Anniversary’ we ventured out for our 1st ‘relaxing’ trip to the shopping centre since returning home almost a year ago. Aaron has not been comfortable or able to travel, things have been challenging beyond what I can describe. But as hard as the morning preparations were and the short trip in our ridiculously small car was we were excited for a relatively carefree day out together…… We started with a haircut for Aaron, visited Lowes for some comfortable clothing for him being that he is in the wheelchair 100% of the time now, and we headed into K-mart. We browsed the isles, joked around, looked at a few handy things we needed.

We were on our way out towards the registers when my phone rang. Aaron motioned that he was going ahead to look at something around the corner and I spoke to my Mum on the phone. It was a brief chat, I filled her in on what we were doing and mentioned we were about to go get lunch, only she didn’t hear that part, I then thought I said ‘Mum I don’t feel right’. Next thing I remember I was screaming out in pain, calling for Aaron and had no idea where I was or what had happened. Aaron filled in the gaps ….. he had continued around the corner and was looking at razors, he then heard a loud ‘thud’ and turned to see our trolley rolling towards him but no me…he turned the corner to see me lying on my back in a pool of blood. An RN had luckily been shopping at the same time and was not far behind me when I collapsed, she was right there with me as Aaron threw himself out of his wheelchair onto the ground to be with me. I was unconscious for a period; I had 2 convulsions and was bleeding from the head. The Paramedics cannot be faulted however the system let us down and we waited over 45 minutes for the Ambulance to arrive. All the while Aaron was watching me go in and out of consciousness and having fits. To say he was scared would be an understatement. I recall him calling out to me pleading me not to leave him …. I was just as scared as him!!

I presented to Hornsby Hospital Emergency, my head was stitched up (5 stitches and thankfully no shave) and I was put on monitors and had head scans, blood tests and was ‘watched’. Due to my young age and no pre-existing conditions or family history there were no initial concerns for heart condition or health and I was transferred to a ward on monitors. 

ICU

I can’t remember how long I was on the ward but I do recall feeling very sleepy and then everything faded and then went completely black. My heart stopped again (they now believe this was possibly the 3rd stop, the first being when I collapsed in K-mart). I woke up surrounded by people once again dazed and confused and not knowing quite where I was or what had happened. I was immediately transferred to ICU with more monitors and telemetry pads there were wires everywhere and two big electrically connected pads front and back of my chest …. I remember sitting up at one point and within seconds I had the worst shock of my life, like a pro footballer had run at me from behind and tackled me against a brick wall, it really hurt and I am sure I jumped a few feet off the bed as the pads shocked me….. The pads going off meant my heart had stopped again. After it happened I do kinda recall the lovely Dr mentioning as he was fitting them that if they were needed and did go off it would most probably really hurt…… well hell yep it did! I was then rushed straight into ICU high care and had an external pacemaker fitted as well as a pic line and more telemetry and monitoring pads. I was placed on the surgery wait list for a Permanent Pacemaker and monitored in ICU. It wasn’t a pleasant few days and it is still all a bit blurry to me. My amazing Mum rushed straight to K-mart as soon as she re-established contact with Aaron and my Father drove the 750km’s from his home to be with us. The temporary pacemaker kicked in once during its short stay in my heart, doing its job and keeping me here – 5 heart stopping moments is more than enough I’d say! 

ICU - Temporary Pacemaker

Surgery was not pleasant – they attempt to do pacemaker insertions under local anesthesia and you must stay completely still for the entire procedure (while they poke wires thru veins into your heart). I was in pain and concussed (and I still am) from my initial collapse and splitting my head. The compacting stress of the 72 hrs just past on top of the already stressed and high demands on me as a carer and in our ‘MS’ life…. plus the worry, concern and anxiety I was experiencing not being there for Aaron and Jake meant they had to put me under a general.

I spent the next 24 hrs being closely monitored and was then transferred to the ‘Cardiac Ward’, which is located on a mixed ward in a 30+ year old run down building. It included patients with dementia and other chronic illnesses and I was in a room with 1 other elderly female and two elderly males. It was not pleasant nor relaxing, I got very little rest or sleep. I was in pain, emotional, upset and at 42 had just had a pacemaker fitted and was now facing a lifetime of worries and heart concerns.... I had constant lights & noises, wandering elderly male patients trying to get into bed with me or convince me to sneak out with them for a smoke as well as the dear in the bed next to me having panic attacks requiring ventilation every few hours…. Discharge home the following Friday could not have come sooner!

Wandering Joe

I am home now with my boys, no better place to be! I am still recovering from my concussion and the pacemaker surgery; I am tired, sore and emotional. I am on restrictions and medications and need to follow up with more tests with my Cardiologist. This past few weeks/months/years have taken their toll on me physically and mentally and has given me time to stop, reassess and accept the help we so desperately need.

As I look back, the words of the music behind the first video I made as we were fundraising to get Aaron to Russia are even more prominent for myself as well as for Aaron 20 months later – “Amen I’m Alive”!!  https://videopress.com/v/wZ5htyk1

Our fight is far from over…. It is a daily fight for Aaron, his Primary Progressive MS is unforgiving but I cannot give up on him nor can I give up on his want, need & desire to try ANY and ALL ways he can to stop the progression of his horribly emancipating and disabling MS.

Takes more than my heart stopping 5 times to keep me down….. I just might need a little more help to keep up the fight this time round…….

Russian HSCT Comrades

Our journey to Russia for HSCT was daunting but as we headed off for a major medical procedure in a foreign country we had the benefit of knowing other brave HSCT Warriors that had forged the way before us. Through blogs and Facebook groups and private messages we learned about so many amazingly courageous MS’ers from Australia and abroad that had already paved the way. It takes a certain person to open their lives up, to share their journey and their experiences, we are so very grateful there are people that have and still do. The tips, hints and tricks that are shared have made the whole journey so much easier for us and the many others that follow us.

One of those amazing people is Kristy Cruise. Kristy not only inspired us but hundreds of people worldwide to take control of their own health and in particular to seek HSCT. She invited the world into her life, her family’s lives and shared her journey to fight for the right for the chance at halting MS. She has been an inspiration to us since we first came across her story as it was unfolding in real time back in 2013 on a Facebook group. Months later when the ads aired for her 60 Minutes ‘Russian Roulette’ story we finally took the plunge and after 18 months of research we followed hers and others very brave steps. 

Kristy Cruise -
our HSCT Queen

We contacted Dr F and booked Aaron in as a patient at The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre in Moscow Russia – the start of the long journey we are on now. 

Kristy may not have been in Russia with us physically but her advice and support prior, during and after has been and continues to be priceless. We hope that by following her selfless example and sharing our story we might reach just a fraction of those Kristy has. I also hope that by being a Warrior Wife I not only paid it forward in Russia a little but also through writing Aaron’s blog and sharing the entire journey on the net.

Back to my Russian HSCT Warrior Family – my comrades in Russia for 28 days :) We were so blessed that there were Aussies already in Moscow when we arrived. Our very first night we were welcomed to the Vega by Libby and her Friend Jenny. Libby’s daughter Emma was another Aussie already in Russia for HSCT. They invited us to dinner where we met two other carers that were just about to leave Moscow. It was a warm and friendly welcome to a foreign country and made the first night a whole lot less daunting.

Jenny Libby & I at the Vega on the day they departed Moscow

Emma, Aaron, Me with Mary Kaye's Brother & sister in Law

The first Monday as Aaron admitted to Pirogov we were welcomed to the hospital by Emma. Em and I met online, we followed each other’s fundraising, and we shared our tips and hints supporting each for the months leading up to setting off for Russia. We were all anxious to meet in person and big hugs were had that day. I will be forever grateful to Em, Libby and Jenny for their friendship & support as well as the important role they played in our journey in Moscow on so many levels! My first day traveling to the hospital alone Libby & Jen showed me the ropes which set me on path for transport for the remainder of the month – I was only too happy to pay it forward and show those that followed the same ropes.

HSCT Warriors Aaron & Emma

There were also 3 other Aussies ladies already in Pirogov including Irene another online HSCT friend and Mary Kay from Michigan.  Meeting some of our ‘HSCT Warrior Family’ in person gave both Aaron and I strength in the early days and it was lovely to have familiar voices to speak with each day. (There were also another 2 ladies on the ward, Louise and Cheryll from Australia, who were on the same schedule as Irene). We were so lucky to be included in Em, Mary-Kay, Irene, Louise and Cheryll’s New life Birthday celebrations.

The day after we admitted Aaron to Pirogov we were joined by Troy and his carers Neil and Marilyn. Again we had been speaking to Troy online as well as on the phone in the months leading up to Russia and I have been online friends with his Mother Anne for a few years now – our connection being through MS. Aaron and Troy would become Stem Cell Buddies as their treatment took on the same schedule. They experienced everything from testing to stimulation shots to Apheresis (stem cell collection) at the same time as well as sharing chemo days and the big transplant day. Experiencing the traditional New Life Birthday celebrations side by side highlighted their journey to HALT MS together.

 

Neil and Marilyn would become my travel buddies, dinner companions, supporters, helpers as well as my friends during the month we spent together. We were all staying at the Vega, we traveled to and from Pirogov together and we even took a little time out to enjoy Moscow as tourists together. I will be forever grateful to Marilyn for almost insisting we attend the Bolshoi Ballet & Red Square by Night – truly a highlight of my time in Moscow and an experience I will NEVER forget. I would have had many more lonely nights and been by myself for a lot more of my time in Moscow had I not had their companionship.

Marilyn, Neil & I on our way to Red Square on the Metro

Neil, Marilyn, Frank & I in front of St Basil's Cathedral

 On my first weekend in Russia I was joined at the Vega by our new friends and fellow HSCT’er Natalie & her husband Paul. I met Nat & Paul briefly in April when I attended Kristy’s 2^nd HSCT Forum in QLD. We have chatted on line a lot since then and it was lovely to catch up with them again. This time in Moscow just as we had planned 6 months earlier… when it all felt so far away! It was like seeing old friends and meeting new ones all in one xx We spent the next three weeks together bonding and sharing a unique experience in a unique part of the world. All while learning more about each other and sharing stories about our respective families. I missed Nat & Paul for the first few weeks home, actually I still miss them! They are such special people and I was blessed to spend such an intense time of my life with them. I hope they know how important they were to me during our time in Russia and that I still carry the strength, wisdom, advice and friendship they shared with me now.

Libby, Jenny, Paul, Natalie, Me, Marilyn & Neil

Warriors Aaron & Nat with their Azza Straps!

The day Nat admitted to Pirogov during Aaron’s 2^nd week we were also joined by Matt & his girlfriend Laura from the UK. They had not been expecting a support crew and it was really nice to welcome them to Pirogov and adopt them as ‘honorary Aussies’ showing them the ropes. A few days later our support group extended again when Matt’s brother Bryn arrived from Dubai and was also welcomed into our ‘HSCT Pirogov/Vega Family’. For a few days there were 13 Aussies and our 3 honorary Aussies in Moscow for HSCT.

Paul & Laura

Aaron visiting Matt in ISO to say farewell
on our last day

During my time in Russia I shared all the highs and the lows with my new friends. I was emotional on a whole new level in a whole new world and I was blessed that they welcomed me into their lives and supported me in so many ways. Our new friends made our time in such a foreign land that much more comfortable and a lot less daunting than it could’ve been. The bonds we formed were strong and I am sure we have made lifelong friends.

Marilyn, Paul, Aaron, Laura & Bryn
on our last day at Pirogov

If I didn’t say it enough before I left -
Thank you from the bottom of my heart Warrior Family xx