Dear Madam / Sir,
My name is Andrea Lack and I am participating of the Nepal Trek called TREK FOR SOMEONE WHO CAN'T organised by the Muscular Dystrophy of Western Australia, the Research centre for neuromuscular diseases ....
As the name of our Trek says, me and my friends are trekking for the sake of children affected by Muscular Dystrophy ..or as in my case, Spinal Muscular Atrophy ,,,genetic disease which killed my 11 week old baby boy Alexander..Genetic disease which doesnt have cure ..... so Im trekking in the name of my son, to help the sick children in Nepal living in very bad conditions, so money we are raising are going to help to finish the project which will help disabled children in Nepal to live a more bearable life...this includes school, hospital and care centre
The Trek for someone who Can't will take place in Kathmandu from 17 th March to 1st April. All participants of the trek have a target to fundraise AUD 5000...just to help those children. I would very much appreciate if you could support me in any possible way.
For any further information, please, check the website...
I would like you to consider me in participation of this year’s rally as in any way you can. Donations can be paid to the address listed below....
Www.everydayhero.com.au/andrea_lack
Thank you for giving this your consideration
Yours Sincerely
Friday, January 20, 2012
Friday, January 06, 2012
This is the story of little Alex Laxa
Alex was born 10.8 2008 at 18.08 hours, a completely uneventful pregnancy. He was nearly born in the shopping mall, because upon our arrival to the hospital my contractions weren’t so strong, so I was recommended to walk it through, and come back when they are cime of birth loser apart...so my husband Steve took me to the nearby shopping centre to get some necessary shopping .waking around worked real well, with frequent stops when I had to bury my nail is the shopping trolley handle to keep up with contractions which become stronger...later I told him, that we really should come back to the hospital before it’s too late.. With his quick stop at Mc Donald’s to get some food, my water broke and we had to rush to the hospital which was luckily just 5 mins away I had really just time to climb on that birth bed, and in about 20 minutes, Alex was born... the nurse, when she marked the time of birth mentioned how many EIGHTS he has in the time of his arrival...it was 8th of October.2008..18.08...how lucky he will be in his life...When Alex was born, his cry was rather quiet, but I wasn’t worried, Madison, his sister wasn’t particularly loud baby herself I immediately checked his tiny face.. I passed the magical year of 35, when the genetically problems are more frequent, but I wasn’t recommended amniocentesis as my risk of Down syndrome wasn’t even increased. But looking into his beautiful, creased, frowning face my fear completely stopped.. Then we moved to the maternity ward, where Alex just slept and ate, if he cried, his voice was so quiet unlikely other babies and I was congratulating myself to such a contended baby..... Wrapped up constantly in the blanket so his head with cute bunch of black hair sticking out was visible...just a perfect baby boy....my happiness was complete, everybody around us was happy, grandparents proud of their first grandson.... Around his 4 weeks I noticed that his legs are barely moving, but he was my first baby boy, so I assumed that boys are a bit slower than girls. But I kept my eye on that. But after few more days I started to search internet, where I found the word HYPOTONIA, which indicated his problems, something like lower muscle mass...that was quite a shock to me, but then I thought, oh well, not everybody can be champion... his name AlEXANDER TERENCE LACK indicates something more...like a politician :)..I didn’t want to check which diseases are connected to hypotonic.....I didn’t want to know... I mentioned my worries to my husband who told me to calm down and relax, he is OK.... but it didn’t help me at all. I become obsessed with his legs, helped him to move them, to lift them... my sweet boy was looking at me smiling, not knowing what am I trying to do to him... My depression of not knowing what is wrong with him just hit the complete top. I needed to find out. So next day I took him to the local Health Nurse, which looking after babies in local area....when I got there in the waiting room was already a parents with their baby, which was pretty restless, crying kicking and wiggling.. Complete opposite of Alex, who was lying motionlessly in the pram, looking around...I found out the baby was even one week younger than Alex....and that was it..I knew, there is something really serious with him, which I get confirmed by the nurse who looked at him and told me, that she b=never ever saw anything like that... I run home and immediately rang my GP, for the earliest appointment. I managed to get one just the next day.. My GP, when I told her about Alex's lack of any ir very limited movements, was very confused. She even took some medical book of the shelf, look in there for a while, and then started Alex's reflexes. Which I realised HE HADNT ANY of them!! GP made some notes, than looked at me completely puzzled, told me I need to see some neurologist, she doesn’t have a clue what is wrong with him. And she recommended to get to the Princess Margaret Hospital for children, just to go to emergency. They will look at him... SO i did. The very next day, we drove there.. he was weighed and measured, and then e waited for some doctor in duty to have a look at him...when she came, I repeated again all his problems, she checked him...nodding she said she will call a neurologist.. After a while a young Indian neurologist came, and started Alex's reflexes again hitting him in his knee, when the leg should kick immediately. Nothing happened... I was sick worried....I knew he isn’t paralyzed, he just COULDNT move ! then the specialist recommends a hospitalization, so they can run a few tests on him. Funny enough I was very relieved... finally someone is going to find out, what is wrong with my baby. And then we can try to fix that.... They took us upstairs, Alex on a huge bed, I carried his car seat and our things,,,we were heading to the infant ward,. Where they put us in the room with another baby. In the meantime Steve arrived, ( I let him know that we are staying overnight and we need some stuff from home...), I told him quickly. What was happening when our nice Indian neurologist walked in accompanied with another 2 ladies doctors.. they let me undress Alex, straight away I saw something strange in their eyes when they saw Alex's bulging belly...( he had that pretty much always, as long as I remember, poor baby looked like a pregnant)...then they bend over above him and opened his mouth...I don’t know what they saw over there but clearly I could see i their expressions, when they looked at each other...and nodded.. Something was very very wrong... Then one of the ladies introduced herself as a Head neurologist and told us, that she is suspecting Spinal Muscular Atrophy... I remember how relieved I was; finally someone gave a name to his problem... O, I said. So what is the treatment? Lakshmi, the doctor looked at me for a short while, and then told me... sorry, but there is no cure for this....While
I was absorbing what she just said, my husband asked her how much time she thinks he has...and she replied...in his condition, about 6 months...what they were talking about? What 6 months??? He is perfect, he just can’t move his legs, so what are they talking about? Is he going to die??? Why? My brain just suddenly switched off, I couldn’t absorb any more information’s, I couldn’t do anything, I so wished to pass out, or to die.. I was pinching myself in my hand so hard, just to wake up from this ugly, horrible dream. This just couldn’t be real...it just simply couldn’t happening to me...but unfortunately...It WAS....why my brain didn’t do any mercy to me and let me live this through????? Then nurse came and quietly told us, that there is a private room just for us, and she will help us to move. I just walked behind her, not thinking, not feeling, just like a robot... in the room, where there was a hospital co and adult bed, together with a lovely bathroom...so spacey. With a nice view. But didn’t care, I was paralysed myself, my brain worked overtime, fighting depression, looking at our beautiful baby who was smiling at the nurse who changed his nappy, I just wasn’t able to do that, I wasn’t able to do anything....they asked if they should call a psychology, but I refused, I didn’t want to see anyone, talk to anyone, I just wanted to be left alone... They wanted us to keep overnight so they could run the SMA test in the morning which meant Alex couldn’t eat, he just was given some glucose, which he really didn’t like too much. He cried quite often...i looked at him, thinking how am I supposed to look after dying baby? Why me? That was so unfair!!! I remember even having thoughts of not wanting him anymore; put him in some hospice...because how am I supposed to look after dying baby??? This all thoughts speeded through my mind, my brain was overloaded, I even couldn’t cry, couldn’t think straight. I was in the shock.... Later on, when my husband left hospital home to be with poor daughter Madison, I was left alone with Alex in the hospital room, looking out of the window, watching traffic, and I envy all people sitting in those cars their minor, silly problems...thinking what i would do? What to tell all our friends? What it would be like when he will pass away? And WHEN? Will I be strong enough to watch him slowly dying, day by day??? I watched my son in his cot, unhappy with the feeding tube in his nose, he was so hungry, but I couldn’t feed him, as he was supposed to have his test done early in the morning.. The nurses left me alone with him, so I had to look after him by myself...giving him dummy in his tiny mouth; I stared at him, still feeling like in my worst nightmare... When nurse came with the breast pump, I wasn’t able to pump anything, I completely lost the milk. Luckily just only for that day I managed to fall asleep, just for an hour, when I woke up, Alex was next to me, in his cot with those tubes all around...no it wasn’t dream after all, just ugly reality....I felt sick.... Nurses kept coming, checking his temperature, checking all those machines, whispering to him, how cute he is, special boy.... In the morning Alex was taken for is tests, head nurse came to tell me the social worker will come to see us, also the head of the ward came to ask if we are ok, if there is anything, they will do whatever possible, and gave me a big hug...they were just all too nice My husband came in the midmorning, forced me to eat something. Food was the last thing in my mind; my jaws were just locked together. Then all the people started to come... the social worker was the biggest help. I told him all my feelings, my though. He said all that is normal, from now on I should just live day by day, not to plan anything, just enjoy every day...forget the future..... Which I did eventually Nurse took Alex's blood and they wanted us to stay another night at the hospital, to provide a nerve biopsy, which would give us the 100% results..... Next night in the hospital was as bad as the first one, Alex was taken to the biopsy, and Steve took me out of the hospital, for lunch and shopping...out there I felt like an alien. Walking amongst all those people who were enjoying lovely spring day, having fun, chatting to each other....nobody knew how huge sorrow I had in my heart, nobody could feel what I did... I felt so alone.... I so wanted to be in anyone else skin. Just to switch my brain completely off...possibly forever... We get back to the hospital, Alex was brought back a while after us....his eyes red and wet, he probably cried a lot, at that test..my poor baby... Lakshmi, the neurologist told us, that the tests confirmed SMA 1, but the 100% assurance will come from the blood tests...and we were offered another night at the hospital. Which I refused, I had enough of that place, full of "just normally sick" babies, which would eventually get better, will get home, ..will continue their life.... at that moment, that was too hard ... Weird feeling to take your baby away from the hospital, baby which seems perfect, but was already given the death sentence... weird listening to the peoples compliments about how beautiful your baby is. We left for home in absolute silence. But when we reached home I felt much better. I felt stronger, I wanted to give my dying baby the best time of any baby life, and he would be showered with love, people, and actions. He will not be left alone for just a single minute...as we didn’t have a clue how much time we have.... together.... ENDING 30th December 2008 .that night was very bad, Alex didn’t sleep at all, kept me awake all night...day before we decided to go to some animal pace to keep my daughter happy, Alex had a big problems with feeding..(.which started already beginning of December...but now, it was quite critical, I fed him a half a bottle for about 2-3 hours! Last bottle he finished was exactly on Christmas day, that seemed like he wanted to make me really happy, which he did...that was my best present...and since then.. He just didn’t eat. His feeding and drinking was the only thing I could think about. Especially drinking...the day temperatures reached 35C, so drink was really important... Day before I wanted to keep him cool, so I decided to bath him outside. Then my sister in law came over, seeing him, she busted in tears...she apologized for that, but then I realised, how horrible he looked... he was so pale, his breathing really rapid, his chest lifting up and down, so so skinny... looking at him, I decided if he is not better the next day, I will take him to the hospital...I realised now it would be the time for the feeding tube. Or tube straight into his tummy. To get better... evidently his sucking muscle were giving up ... So the next morning after the horrible night I announced my mum and my dad, who were just visiting from Europe, that we are going to the hospital. My mother in law went with me, keeping me company...and we were heading to the Emergency department of Princess Margaret Hospital.... At the waiting room we expected a long delay as usual, but we were taken straight away. I had to tale clothes off Alex to weigh him, while waiting for the doctor...Then I found out that my baby weights just a 200g in his nearly 3 months.....more than he was born!!! He lost so much weight I just didn’t realised!! Doctor who came asked about his problems, and about any know condition, I told him he is SMA baby. He didn’t seem bothered, just asked if his breathing is normally as fast as that...I said yes, he has SMA... and then of his belly is always as big...I got really angry, I told him yes, he is textbook SMA baby.. the doctor simply didn’t have a clue, what SMA IS !!! They found out that Alex's breathing is really bad and he was given an oxygen mask. Suddenly there was a crowd of doctors and nurses All running around. And I felt so relieved; finally someone is taking proper care about my baby..... Suddenly Lakshmi, our neurologist came, she was just informed about our arrival, so she rushed to see us... looked quickly at Alex and told me to follow her...that we need to talk. ..in one of the close by rooms we sat down, she had very serious expression in her eyes. Telling me that Alex's time may have come, or is quite close. And we need to discuss what is your decision...if he is about to pass away. Will you want to keep him alive at any cost with the help of breathing machines or just let him slip away, as we agreed to that before.. (We discussed this question before, and me and my husband agreeed that we dont want to prolong our sons misery, breathing machine wasnt an answer ..it would just prolong his..and our helplessness)..and was still positive about that...I couldnt watch my son suffer anymore, just watching him lying at the bed, so tiny, so sick..was tearing my heart apart....) she had to ask, even when she knew our decision form before, but now...the situation got more real....so I said no..I dont want him to suffer...he had enough.... She kept some otimism though, she said so far it will definitely looks like a feeding tube AND a breathing machine, which MIGHT be temporary..if he starts breathing on his own again...but we we will definitely leave the hospital with the oxygen tanks...and he has to stay hospitalized as he is very dehydrated, which I agreeded immediately.. They took us to the infant ward again, we got another private room, not the previous one, but right the next one.. they parked Alex next to the big bed and left,,and we stayed alone just with our sweet little boy, who was finally sleeping, probably being sedated....They put his head into some clear plastic box with oxygen, instead the breathing mask, which he hated so much..he was allowed to be taken off the box, but he needed to have the oxygen musk right in front of his face, lying on he pillow..all the time, with us...later on my mum in law left for home, talked to my mum who was persistent to be with us, so we arranged her to come the very next morning...so the last day of the year, instead of heavy celebration we will spend oin hospital...The nurses were coming all the time, checking if we are ok, especially two of them Beth and Amanda were just amazing...I knew straight away, whatever happened they will never forget us... We had one of the last nights with Alex ahead of us.... 31st December The night at the hospital was horrible, ALex was very uncomfortable, kept crying, which hurt me so much...to be unable to help is the worst feeling... In the morning my husband came, together with my parents and Madison, m mum and dad were stunned when the saw Alex, their eyes teary straight away, mum hugged me... While they were around, I and my Husband were taken to the Respiratory department to be shown how the breathing machines works. Our neurologist organised that for us. We were shown a HUGE heavy oxygen tanks which we were supposed to take home, Alex would use them constantly while at home, one of them should last 2-3 days, we were supposed to take 3 of them...and if we want him to take him for a walk, there were a smaller ones, which could fit the basket under the pram, just about...each of them lasted a few hours..5 of those The doctor showed us everything, how to use that, how to operate, and we were staring in disbelief...this is what we DIDNT want for our son, we wanted as much quality life as possible,, anyway, the transport of all these tanks were already organised on our discharge...free delivery, free usage...brilliant. When we get back to our room, Alex was up and unhappy, not crying but moaning. I couldn’t bear that anymore, I asked the nurse to give him something so he doesn’t suffer, so he doesn’t feel the pain....he finally fall asleep on the pillow, being cuddled by my mum, with the mask in front of his tiny face...... Then Stephanie, lady from Palliative care came. And that was the break thru... she looked at Alex and told me straight away, that he looks really bad, an she thinks that he will not be able to make it.. i looked at my baby.... he changed so much, he didn’t look like himself anymore... I knew, she was right. THE time was coming...very fast....and suddenly I realised that my daughter didn’t know what is happening...we didn’t have chance to tell her...so Stephanie did. She explained that Alex is very sick baby. So sick that he cannot live anymore...it was so emotional, poor Madison was so confused, hugged me and told me she doesn’t want her brother to die, that she loves him...OMG, that was so so hard, so unbearable....luckily my husband took her away. To some toy shop and the they left.. My sister in law came with her husband. To say good bye to Alex as we told everybody that we will not bring Alex home with us anymore.. They stayed all night with us, we "celebrated" incoming New Year..... Day of Madisons 6th Birthday...and then everybody left ...together with Alex's car seat, which was obvious we will not use anymore, my baby will never sit in it anymore....just me and my mum stayed that night ,,the very last night with Alex
THE END...
I was absorbing what she just said, my husband asked her how much time she thinks he has...and she replied...in his condition, about 6 months...what they were talking about? What 6 months??? He is perfect, he just can’t move his legs, so what are they talking about? Is he going to die??? Why? My brain just suddenly switched off, I couldn’t absorb any more information’s, I couldn’t do anything, I so wished to pass out, or to die.. I was pinching myself in my hand so hard, just to wake up from this ugly, horrible dream. This just couldn’t be real...it just simply couldn’t happening to me...but unfortunately...It WAS....why my brain didn’t do any mercy to me and let me live this through????? Then nurse came and quietly told us, that there is a private room just for us, and she will help us to move. I just walked behind her, not thinking, not feeling, just like a robot... in the room, where there was a hospital co and adult bed, together with a lovely bathroom...so spacey. With a nice view. But didn’t care, I was paralysed myself, my brain worked overtime, fighting depression, looking at our beautiful baby who was smiling at the nurse who changed his nappy, I just wasn’t able to do that, I wasn’t able to do anything....they asked if they should call a psychology, but I refused, I didn’t want to see anyone, talk to anyone, I just wanted to be left alone... They wanted us to keep overnight so they could run the SMA test in the morning which meant Alex couldn’t eat, he just was given some glucose, which he really didn’t like too much. He cried quite often...i looked at him, thinking how am I supposed to look after dying baby? Why me? That was so unfair!!! I remember even having thoughts of not wanting him anymore; put him in some hospice...because how am I supposed to look after dying baby??? This all thoughts speeded through my mind, my brain was overloaded, I even couldn’t cry, couldn’t think straight. I was in the shock.... Later on, when my husband left hospital home to be with poor daughter Madison, I was left alone with Alex in the hospital room, looking out of the window, watching traffic, and I envy all people sitting in those cars their minor, silly problems...thinking what i would do? What to tell all our friends? What it would be like when he will pass away? And WHEN? Will I be strong enough to watch him slowly dying, day by day??? I watched my son in his cot, unhappy with the feeding tube in his nose, he was so hungry, but I couldn’t feed him, as he was supposed to have his test done early in the morning.. The nurses left me alone with him, so I had to look after him by myself...giving him dummy in his tiny mouth; I stared at him, still feeling like in my worst nightmare... When nurse came with the breast pump, I wasn’t able to pump anything, I completely lost the milk. Luckily just only for that day I managed to fall asleep, just for an hour, when I woke up, Alex was next to me, in his cot with those tubes all around...no it wasn’t dream after all, just ugly reality....I felt sick.... Nurses kept coming, checking his temperature, checking all those machines, whispering to him, how cute he is, special boy.... In the morning Alex was taken for is tests, head nurse came to tell me the social worker will come to see us, also the head of the ward came to ask if we are ok, if there is anything, they will do whatever possible, and gave me a big hug...they were just all too nice My husband came in the midmorning, forced me to eat something. Food was the last thing in my mind; my jaws were just locked together. Then all the people started to come... the social worker was the biggest help. I told him all my feelings, my though. He said all that is normal, from now on I should just live day by day, not to plan anything, just enjoy every day...forget the future..... Which I did eventually Nurse took Alex's blood and they wanted us to stay another night at the hospital, to provide a nerve biopsy, which would give us the 100% results..... Next night in the hospital was as bad as the first one, Alex was taken to the biopsy, and Steve took me out of the hospital, for lunch and shopping...out there I felt like an alien. Walking amongst all those people who were enjoying lovely spring day, having fun, chatting to each other....nobody knew how huge sorrow I had in my heart, nobody could feel what I did... I felt so alone.... I so wanted to be in anyone else skin. Just to switch my brain completely off...possibly forever... We get back to the hospital, Alex was brought back a while after us....his eyes red and wet, he probably cried a lot, at that test..my poor baby... Lakshmi, the neurologist told us, that the tests confirmed SMA 1, but the 100% assurance will come from the blood tests...and we were offered another night at the hospital. Which I refused, I had enough of that place, full of "just normally sick" babies, which would eventually get better, will get home, ..will continue their life.... at that moment, that was too hard ... Weird feeling to take your baby away from the hospital, baby which seems perfect, but was already given the death sentence... weird listening to the peoples compliments about how beautiful your baby is. We left for home in absolute silence. But when we reached home I felt much better. I felt stronger, I wanted to give my dying baby the best time of any baby life, and he would be showered with love, people, and actions. He will not be left alone for just a single minute...as we didn’t have a clue how much time we have.... together.... ENDING 30th December 2008 .that night was very bad, Alex didn’t sleep at all, kept me awake all night...day before we decided to go to some animal pace to keep my daughter happy, Alex had a big problems with feeding..(.which started already beginning of December...but now, it was quite critical, I fed him a half a bottle for about 2-3 hours! Last bottle he finished was exactly on Christmas day, that seemed like he wanted to make me really happy, which he did...that was my best present...and since then.. He just didn’t eat. His feeding and drinking was the only thing I could think about. Especially drinking...the day temperatures reached 35C, so drink was really important... Day before I wanted to keep him cool, so I decided to bath him outside. Then my sister in law came over, seeing him, she busted in tears...she apologized for that, but then I realised, how horrible he looked... he was so pale, his breathing really rapid, his chest lifting up and down, so so skinny... looking at him, I decided if he is not better the next day, I will take him to the hospital...I realised now it would be the time for the feeding tube. Or tube straight into his tummy. To get better... evidently his sucking muscle were giving up ... So the next morning after the horrible night I announced my mum and my dad, who were just visiting from Europe, that we are going to the hospital. My mother in law went with me, keeping me company...and we were heading to the Emergency department of Princess Margaret Hospital.... At the waiting room we expected a long delay as usual, but we were taken straight away. I had to tale clothes off Alex to weigh him, while waiting for the doctor...Then I found out that my baby weights just a 200g in his nearly 3 months.....more than he was born!!! He lost so much weight I just didn’t realised!! Doctor who came asked about his problems, and about any know condition, I told him he is SMA baby. He didn’t seem bothered, just asked if his breathing is normally as fast as that...I said yes, he has SMA... and then of his belly is always as big...I got really angry, I told him yes, he is textbook SMA baby.. the doctor simply didn’t have a clue, what SMA IS !!! They found out that Alex's breathing is really bad and he was given an oxygen mask. Suddenly there was a crowd of doctors and nurses All running around. And I felt so relieved; finally someone is taking proper care about my baby..... Suddenly Lakshmi, our neurologist came, she was just informed about our arrival, so she rushed to see us... looked quickly at Alex and told me to follow her...that we need to talk. ..in one of the close by rooms we sat down, she had very serious expression in her eyes. Telling me that Alex's time may have come, or is quite close. And we need to discuss what is your decision...if he is about to pass away. Will you want to keep him alive at any cost with the help of breathing machines or just let him slip away, as we agreed to that before.. (We discussed this question before, and me and my husband agreeed that we dont want to prolong our sons misery, breathing machine wasnt an answer ..it would just prolong his..and our helplessness)..and was still positive about that...I couldnt watch my son suffer anymore, just watching him lying at the bed, so tiny, so sick..was tearing my heart apart....) she had to ask, even when she knew our decision form before, but now...the situation got more real....so I said no..I dont want him to suffer...he had enough.... She kept some otimism though, she said so far it will definitely looks like a feeding tube AND a breathing machine, which MIGHT be temporary..if he starts breathing on his own again...but we we will definitely leave the hospital with the oxygen tanks...and he has to stay hospitalized as he is very dehydrated, which I agreeded immediately.. They took us to the infant ward again, we got another private room, not the previous one, but right the next one.. they parked Alex next to the big bed and left,,and we stayed alone just with our sweet little boy, who was finally sleeping, probably being sedated....They put his head into some clear plastic box with oxygen, instead the breathing mask, which he hated so much..he was allowed to be taken off the box, but he needed to have the oxygen musk right in front of his face, lying on he pillow..all the time, with us...later on my mum in law left for home, talked to my mum who was persistent to be with us, so we arranged her to come the very next morning...so the last day of the year, instead of heavy celebration we will spend oin hospital...The nurses were coming all the time, checking if we are ok, especially two of them Beth and Amanda were just amazing...I knew straight away, whatever happened they will never forget us... We had one of the last nights with Alex ahead of us.... 31st December The night at the hospital was horrible, ALex was very uncomfortable, kept crying, which hurt me so much...to be unable to help is the worst feeling... In the morning my husband came, together with my parents and Madison, m mum and dad were stunned when the saw Alex, their eyes teary straight away, mum hugged me... While they were around, I and my Husband were taken to the Respiratory department to be shown how the breathing machines works. Our neurologist organised that for us. We were shown a HUGE heavy oxygen tanks which we were supposed to take home, Alex would use them constantly while at home, one of them should last 2-3 days, we were supposed to take 3 of them...and if we want him to take him for a walk, there were a smaller ones, which could fit the basket under the pram, just about...each of them lasted a few hours..5 of those The doctor showed us everything, how to use that, how to operate, and we were staring in disbelief...this is what we DIDNT want for our son, we wanted as much quality life as possible,, anyway, the transport of all these tanks were already organised on our discharge...free delivery, free usage...brilliant. When we get back to our room, Alex was up and unhappy, not crying but moaning. I couldn’t bear that anymore, I asked the nurse to give him something so he doesn’t suffer, so he doesn’t feel the pain....he finally fall asleep on the pillow, being cuddled by my mum, with the mask in front of his tiny face...... Then Stephanie, lady from Palliative care came. And that was the break thru... she looked at Alex and told me straight away, that he looks really bad, an she thinks that he will not be able to make it.. i looked at my baby.... he changed so much, he didn’t look like himself anymore... I knew, she was right. THE time was coming...very fast....and suddenly I realised that my daughter didn’t know what is happening...we didn’t have chance to tell her...so Stephanie did. She explained that Alex is very sick baby. So sick that he cannot live anymore...it was so emotional, poor Madison was so confused, hugged me and told me she doesn’t want her brother to die, that she loves him...OMG, that was so so hard, so unbearable....luckily my husband took her away. To some toy shop and the they left.. My sister in law came with her husband. To say good bye to Alex as we told everybody that we will not bring Alex home with us anymore.. They stayed all night with us, we "celebrated" incoming New Year..... Day of Madisons 6th Birthday...and then everybody left ...together with Alex's car seat, which was obvious we will not use anymore, my baby will never sit in it anymore....just me and my mum stayed that night ,,the very last night with Alex
THE END...
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