Losing my father

It is nearly a month and a half.  A month and a half since my father left us.  Left our life absent of his presence.  Left us with the most aching and hollow feeling that ever existed.  It was not a shock to us because his health has been declining since March 2016. He suffered from Emphysema and Idiopathic pulmonary fibrosis.  This diagnosis was made a year before I fell unwell.  This is the disease that also took away my father’s younger brother, my only paternal uncle who was only 50 years of age.

My uncle too passed away while I was suffering from liver failure.  In fact my symptoms were more prominent after he passed away.  Every time I look at pictures of my father and my uncle, I feel like someone is tugging at my heart.  That horrible suffocating feeling creeps in and I find myself in a moment.  A moment where it is hard to accept the truth that both my father and uncle have left us.  There is no one now to look at and find a part of them in them.  If my uncle was here, I’d at least find it comforting looking at the way he talked and smiled which was similar to my father.  The way they made some facial expressions, it was just unique to them.  Gosh I miss them both so much.  It is easy to sit with family and laugh at the funny memories my father and uncle left us.  But it is hard, when all alone and your surroundings are filled with silence. No sound. No movement. Just you and your thoughts.  And your pain.  The pain is unbearable.  How do you undo so many years of habits?  How do you suddenly learn to live without your father? The most integral part of your family's life?  How do me and my siblings just carry on?  When you are adults, people think it is easier for you to move on.  They think the pain is OK because your father was in his 70s and he lived a good life.  He definitely lived a good life alhumdulillah.  He was a content man. He did not chase wealth, neither did he chase large dreams.  His life was, prayer, mosque and his family.  He would be in and out of the house 4 times a day to go to mosque and then come home.  I miss that. I’m sure my siblings miss that too. Sometimes we’d be walking down the local roads and bump into him or see him walking (fast without looking left or right at times – one direction man) and run to catch up to him and tap him on his shoulders.

They were our beautiful days.  Amazing days. This is what my dad gave us.  His time and attention.  As a child he was not the sort of father that took us to amazing places because my dad couldn’t drive.  His instructor really wasn’t going to risk his life to teach my father.  He just was not made for driving (neither was I!).  However he did the most sweetest and adorable things for us.  He had a hobby to save pound coins and he would save that in a piggy bank and when summer would arrive, he would take us to the big weekend in Cardiff along with my cousins.  He would let us go on unlimited rides.

He had the biggest heart ever.  When we were growing up, he did spoil us but also disciplined us.  He bought us what we loved and he bought for us what he loved for us too.  But he taught us to value money.  I still remember when I got my first job, he would pick me up from the bus stop on shorter days.  He told me, earn money but don’t be greedy with it.  I’m not sure I took that advice well because I spend it mostly on buying people gifts.  He used to secretly admire that about me especially when it was father’s day and he was all prepared to hint at his DAUGHTERS what he wanted. Sometimes me and my sister would pretend and tease him that we did not understand his hints.  Then he would get like a child and say ‘you buy your mother everything and nothing for your father’.  He was such picky person.  You could never meet his taste.  Everything required exchanging except that last gift I bought my father.  He spent so much time in his bedroom since March that I bought him a digital Quran and sent it to him.  I was waiting all day like a little girl for him to call me, eager for his happy reaction. Instead, he for some reason believed an East London Mosque had sent him this gadget and he was happily praising them and listening to it.  When I told my sister in law that I had sent it she was laughing and went upstairs to my father's room and took a few clips for me where my darling father was shocked in one clip that he wasn’t such a famous celebrity after all and that East London Mosque hadn’t sent it to him.  But in the second clip he had a huge smile on his face and he said to me ‘thank you goh zee, khoob Shundor ektah zeenish deesoh' (thank you dear, you sent me such a beautiful gift).  I knew when my sister in law sent this video clip, that it would be something I watch every day and cry especially after he was gone.  It was going to become like a lifeline. I am forever grateful of my sister in law for sending me this video.  It was my aim to one day really give my father something that would gain me his praise.  But guess what? The digital Quran became faulty after a few weeks and then my funny father was after me to exchange it and we were having funny fights where I kept saying ‘you’ve damaged it by pressing it too much'.  It was only to get a reaction out of him.  Sometimes his loud voice was funny and other times he was a bit scary.  The replacement journey was another mission bit in the end we got there. He was even more happier with his upgraded version along with a little holder that I had to look for in mobile shop so his gadget would have a place to sit in.

How can you live without such a father?  He never failed to keep us laughing and entertained.  He made us feel we were so important.  He always had a wide smile when he was after Madeira cake from marks & spencers.  He loved collecting charity from us but he loved approaching me for this task.  He knew I was always ready like him.  Before even Ramadan would start, he would call me a month before to get my zakat and later my missed fast money ready to give to poor family members and distant relatives in Bangladesh.  He was such a simple man.  He knew how to treat his wife and his daughters.  He showed so much love to his daughter in law and his 3 sons were his life. Of course we had doomy gloomy days where we had to stay away from him. That’s OK though.  That is love.  Happiness and sadness.  He let us enjoy every emotion with him but in the end his love was unconditional.  He would look at his 3 grandsons in awe when they were wrestling.  He especially found it funny when my son took part in it because he loved Isam.  Isam was his little teddy, in his eyes there was no other perfect grandchild. Isam will never remember any of this.  He will never remember how my father fed him when he was a baby, when he put him to bed when I had my transplant and we were living in Cardiff, how my father clipped his nails.

Such gentle and precious memories and I’m glad I have them captured in video and photo forms.  His grandchildren will miss him.  Aleena talks about him everyday.  Most days he picked on her but she would do the same too. It is sad that my children do not have their grandfather from both sides left.  They will miss out on the way my dad used to give them Eid gifts, Birthday gifts. Older generation just had a unique way of giving money and gifts in our culture.

So here we are today.  No more father.  We are all struggling and we aren’t good at expressing it because personally for me, if I started saying I’m missing him, I’ll cry.  I will not be able to stop the wave of tears that will follow.  I don’t want to cry too much because before my father passed away he looked at us one last time and signalled at us to not cry and he had tears in his eyes.  But what do we do with all this time? Yes of course we pray and so on but when we walk into his room and see his things, it feels like he’s with us.  When we open his wardrobe door and see all his clothes and smell it, we feel that urgency to have him right next to us even if it was him telling us off.  The need feels so strong to just have him in the home amongst us.  He loved huddling us into his lovely bedroom which he was so proud of and see us talk. That was his highlight of the day until he would get fed up and  say ‘you’re all breaking my room, leave now'. Not that we ever left.  He was too cute to leave and he created so much drama and made us laugh.

Since after my transplant I moved to Cardiff temporarily, my parents bought me a bed and put it in their room and a little mattress for Isam.  I loved sleeping in the same room as them.  Me and my father would talk about life and our health.  Sometimes he made it like everyone was conspiring against us because we were unhealthy and he would say we need to just sit together and avoid them as we are not useful.  This is what I mean, he was full of drama and he never meant any of them. It would make me laugh so much.  The funniest was when he discovered I use my phone all night.  He asked me what on earth I do on my phone all night.  Then I started hiding my phone under the duvet but the next day he said he caught the light and I was thinking I’m clever.  I was 34 years old then and my father was treating me like a teenager.  I can write about my father’s stories with me and my siblings and there will be no end. We all have funny stories with him that make us laugh until our tears come out.

This empty feeling will never go away. There will not be another man that will love my family unconditionally.  There will be no more me stressing about my father while being in Telford.  But we are forever grateful for having had the most amazing father in our life.  He taught us well. Even before he passed away, he explained to us to be good to people and kind to them.  To look after each other.  To make sure all his grandchildren are pious with good imaan and that they also acquire a good education. He told us to never miss our prayers because he never did. He was passionate about his prayers.  We were lucky to have a few weeks where he just spoke to us.  We will eternally be grateful for this time.  I just hope he was happy with us and that we could keep his legacy going and manage to instil some of his values in us.
Life is never going to be the same but we will make sure to live it well and contently as my father and be grateful for the little and big moments in our life.

A picture of his little gadgets he used to listen to Quran recitation and Islamic lectures. The black little gadget is the digital Quran sitting in a gold display chair my father made me buy 

Trials and sufferings....

I find myself talking about my transplant in this blog a lot and sometimes I also mention my daughter Aleena and her condition a lot. When I initially wanted to start a blog it wasn’t to express my experience or the daily things I go through in life. Initially it was started to give other parents hope and encouragement. It was so they could read the worst part of this madness I went through and then how I came through it at the end. I find it hard to believe myself the things I’ve been through in my rather small life and if I look back to the days I was a young adult, there was no way I was anticipating all of the trials I was about to go through in the future. How naive we are when we are young and how we believe that because our life is safe and secure at that stage that this false sense of security will remain all throughout our lives. I mean, we are all going through tough times one way or another and to us those trials are massive. It requires a lot of courage and patience for us to overcome them.

It is Ramadan, sadly another year that I cannot fast. I have to take my anti rejection medicines on time and really there is no messing about with them. I have also been told to drink plenty of water, at least 3 litres to make sure my kidneys are healthy as one of the side effects from the medications are kidney failure. So if you see me eating outside, then please do not judge and think how greedy I am or how I am not modest. I had diabetes straight after surgery and I was on insulin 4 times a day. Luckily for me the diabetes was resolved while I was in hospital but still if I do not eat on time then my sugar level does tend to come down quite quickly. I find myself hungry quite often! I miss Ramadan tremendously. The unity we have as Muslims during this month is so magical. Millions or billions of Muslims are fasting throughout this month and it makes it so beautiful. We have the same targets, the same love and affection for our Lord. We are all praying for each other too which is so beautiful.

Today I was listening to a lecture by Nouman Ali Khan and he talked about sufferings and trials. I just felt so overwhelmed the way he interpreted himself and linked it back to the Quran. It made me feel really happy but also quite speechless. I know that we are given tests in this life and all the tests that are given to us mounts up to how much we can bare and handle. We are never given more than or less than we can handle and there is always, always ease after every trial in our life. But today Nouman Ali Khan explained it even more beautifully than I could have imagined. He said that, every suffering or trial is custom made for us according to our capability. We should embrace these trials and believe we could persevere through it. I sometimes find myself saying how tiring I find it looking after my 8 year old daughter who needs a lot of physical help but also a lot of mental help. Recently I have been feeling exhausted by it all and I sometimes I wish she didn’t have to go through some of the problems that she goes through. As a mother, I find it really painful. But I push these thoughts out of my mind only for them to resurface a bit later.

Let me tell you a little about my beautiful girl. I had a lot of complications with her when I was expecting. Specialists couldn’t find anything wrong during the scans and not even after she was born. The day she was born, my grandfather passed away. It was such a bittersweet moment. However, every time I looked at her, I could sense something. I didn’t find her features typical. It's hard to explain this part because she was my first child but every time I held her, that horrible feeling was there. We bought her home and she would only drink a very small amount of milk every few hours -15mls every 2 hours. She cried quite a bit but the midwives kept saying that some children take a while to pick up and because the birth was quite long and then it turned out to be a C-section that it affected feeding. After 10 days my daughter had lost a lot of weight and was dehydrated. She was hospitalised in the children’s ward  and from there on, we started seeing her going downhill. She couldn’t keep 60mls of formula down and she would projectile vomit. It was horrendous the way she would vomit, it would just come gushing out like a hose pipe and it would be all over the room. This didn’t just happen once a day but it happened every half an hour! Then NG tube feeding was introduced with high calorie formula until they tried to find out what exactly was happening and why. We slowly found out that Aleena had abnormal heart defects, low muscle tone – she was very floppy. She had loose lax skin and her facial features were very distinctive. Luckily a geneticist had come to see Aleena and she had worked with or diagnosed a few children with Costello syndrome. She showed us pictures of many other children with these similar features but also discussed the symptoms. I can’t even tell you how lost and in denial me and my husband felt at that time. Our time of joy was turned into this never ending emotional roller coaster. I was fighting an infection from the surgery but also having to stay in the children’s ward but come home to wash the endless amounts of clothes that accumulated each day from Aleena’s severe gastro oesophegul reflux. We had to learn this new way of feeding Aleena via ng tube that required a lot of preparation each feed time which only resulted in her throwing it all back out. She cried, cried all night and day without a moments break. She was in pain from this horrible reflux. We were also trying to come to terms with that she belonged to a group where children had similar features and similar problems and deal with the sadness that Aleena wouldn’t grow up to be a typically healthy child. She was born very large but due to failure to thrive she never really kept up with her growth chart. It was so difficult to take in so much information. This syndrome is very rare that there are only a handful of children in the UK with Costello syndrome. So the next battle was trying to find out more and then we were educating the specialists because they knew so little. Eventually after 3.5 years Aleena's reflux got better but she was fed over night via a pump. That pump was so annoying. Apart from Aleena not letting me sleep for the first 3 years, the pump would always be there to break whatever minimal sleep I got because of its bleeping sounds! She’s had such a great team of therapists who supported us and still keep in touch with us. When I fell ill, they called and messaged. When my son was born they came to visit him and hugged me with tears of joy for experiencing happiness which we couldn’t enjoy with Aleena because of all the medical problems. But here we are after 8 years! We managed to get her off the bump at the age of 4.5 years. That was a journey that required so much patience. It took me a whole year to get her to eat and understand what hunger was. Some days I felt hopeless and other days hopeful! Her speech therapist guided me all throughout and encouraged me with so much positivity. She felt I should have written a journal to help other parents but that time I was so busy that I never got round to it.

All those feelings and thoughts I had when she was first diagnosed, they all slowly disappeared. I found myself loving every day with my daughter even though it was tough. I eventually realised that she had her own personality even if some of her features and problems were categorised by Costello syndrome. I realised she is actually a mini me. She is vocal and her speech is great although not clear and most of the things I can only understand! She finds it hard to walk without her special shoes and splints and has so many other problems and cancer risk but overall, this little madam has achieved so much more than I probably have in my life. She has taught us patience and has taught us to always have hope. Her personality shines through. Anyone that has come across my daughter, they’ll know that she is such a kind, caring, sharing, empathetic, compassionate and happy child. She is so wise and never says anything hurtful to a soul. When my son was born, there was no transition. She accepted him as if he was part of our life forever. She is so in love with her little brother.

So today when I heard what Nouman Ali Khan said about trials and suffering, I could relate to it instantly and it bought some comfort to my heart. I never would have thought I’d be able to go through such a huge trial as a young adult. Tube feeding a child with Costello syndrome? You must be kidding me. But I did. Allah knows what we are capable of. He knows that each and every one of us have a deeper side to us and even we do not know this side or dimension exists in us. We have no idea how much we are capable of handling emotionally and physically until we are not in this situation. Life will be hard for everyone and for some it will be harder but know that you will be able to manage it. Just believe that God has a better understanding of your abilities than you do yourself.
I thought Aleena would be my biggest trial and achievement in this life but when I fell ill, I felt shaken to the core. At that point, I really didn’t think that I was going to be able to handle any of this. I felt once I was out of hospital, I’d never live a fulfilling life. I was scared this experience would scar me for life which it has but in a good way. It is a reminder for me that I may plan so much in my life but only God plans for us and only He will help and support us in our time of need.

Here I am, looking after my children, being a mum and living my life happily. I am doing things differently from before but I’m appreciating everything which I probably did not earlier. Just starting a new day is a gift for me. I’m here for my children and this thought gets me through until my next day. However, now I will always remember Nouman Ali Khan's words and embrace every trial and believe I am capable of whatever sadness or happiness I am given.

It was a bit of a long post and maybe a bit spiritual but we all need to hear it at times! Here is a link to the Costello syndrome website if you are intrigued by it. There was so much more we went through and it would require many posts to tell you all about it! www.costellokids.com

Below are quite a few snapshots of Aleena. Enjoy looking through them.

Making memories...

It has been a while since I wrote a blog post! I’m enjoying this beautiful weather which I missed out on last year. It's amazing how the weather reflects your feelings, behaviour and attitude. I live in a beautiful place where I am surrounded by nature. I have a beautiful lake outside my house with ducks and geese. I have huge trees outside and at the moment they are blossoming and the colours are amazing subhanallah!
Well, we were just finishing up with half term and it has been a very exhausting but fun packed week with my family. I visited my family in Cardiff for a few says as my father is very unwell and is slowly deteriorating. This is a very difficult time for my family. However, I am trying to visit him often as I can as making the most of time is important in life. I do not like wasting this precious time that o have been gifted with because of a lovely donor and their family.
We visited a local farm with the children which was lovely. Although when I walk too much my sciatic pain gets quite difficult to manage. However it was amazing to see my son so taken by animals. He fed the sheep’s and goat and just really enjoyed himself but my daughter wasn't so pleased. She was too preoccupied about visiting the gift shop! She definitely is my daughter because I love souvenir shops even if it is just visiting the local farm.
We also managed a trip to Cheshire and visited the ice cream farm there. I really loved it. If you haven’t been, you really should visit this place with children. It is like a little hidden treasure and the children will love it. It has a beautiful play area which is free, a huge ice cream parlour with so many flavours, you can also pay for other rides like the JCB diggers and golfing. The weather was perfect and it was amazing.
We celebrated my husband's birthday. My daughter had instructed me to make a cheese cake for her dad whilst she was at school. I made the cake with my son and then my daughter helped me decorate it.
We also celebrated my niece’s birthday and that meant more cake and more fun! Aleena loves my niece and is always excited to spend time with her older cousins.
Finally, today we had family friends over and the children enjoyed themselves playing in the garden and sharing their toys. I had a lovely time catching up with friends and it was a lovely end to our half term.
These are the simple things I missed last year when I was unwell. You appreciate all these little things in life that are worth celebrating. It is important to take time out and appreciate all people in our lives who help us and support us in our happy times and sad times. It is hard not to fall into sadness when we go through huge tests in our lives and believe me, I still have bad times. However overall, I try to enjoy my time with family and especially my in laws as they live closer to me so I see them more often. I’m glad we always have a good time and that we always make time to laugh and appreciate one another.
I had my clinic a few weeks ago and that went well too. I’m still on quite high doses of anti rejection and I’m still going through quite a few strange side effects which I’m hoping one day will leave me. It isn’t so bad as I’m getting used to it but isn’t it amazing how long it takes to recover from a transplant? It is hard to believe that even after a whole year, my surgical wound still hurts a lot. I feel a lot of tingly sensations as the nerves are slowly healing. I still cannot get up from the lying down position to upright like I used to, I need to hold onto something for support which makes it a little less painless. Apart from that, I’m doing good. I think sometimes I overdo everything as it feels exciting that I can do more and more. Some days though, I still find it hard to get out of bed and face the day as I’m so exhausted but it is difficult to rest!
I tried potty training my son but that was an epic fail! Instead of potty training him, I hurt my back by carrying him and that pain lasted for a month. I’m hoping to try again soon and hopefully this time I’ll be successful!
Life can be tough and not many people will know how hard it is for me. Lately, I’ve been physically finding it difficult and tiring to look after my daughter who is a special needs child. She’s over 8 years and we have to look after all her personal needs. We are waiting on some news from the occupational therapist to come and give us some tips on how to bathe her easily without injuring our backs. I have to look after my health as well as my daughter’s and it is hard.
It annoys me when people call me lazy when I have to hand over some of the care to my husband. People really think once you’ve had a transplant that you’ve had this miraculous cure and that physically you are able to do everything and anything. For a healthy parent it is a challenge to look after their child that has disabilities so can you imagine how hard this is for me? Me and my daughter have found ways to make life safer and easier for us and sometimes I really have to hand over the care to my husband because if I overdo it, I will only end up making life harder for everyone.
My daughter does make it worth it though as she is the most sociable, friendly and caring little child that I’ve ever come across. She has come on leaps and bounds and we are hoping this summer we can try and get her out of night time nappies. This will mean though, lots of night time trips to the bathroom half way through the night as she cannot get herself onto the loo. But it will be worth it! She’s ready to give it a try and so am I!
I hope the weather keeps on staying this way and we get to enjoy more days out and enjoy experiencing fun times with the children. Enjoy looking at the snaps below and I’m hoping to write up some future blogs on ramadan which is starting on Monday and sadly it is another year that I cannot fast. I will miss out on the excitement! I may also write up a blog post on our journey with my daughter Aleena and share some cute pictures of my daughter.
Enjoy the weather and hope those who are waiting for a transplant that your wait comes to an end and you are given the gift of life.

One year on...

One year. How quickly time flies. I was told around 12am that a donor liver was found but had to be tested to see if it was healthy. During this time, I was very unconscious as my blood sugar levels were so low. I could pick up on some conversations but not all of it. That night I was extremely scared because I was experiencing a high level of pain, I was drowsy but I was screaming in agony in ITU. The nurse that was looking after me said that pain killers can prove fatal for my condition. I was praying and making lots of duas for my family because as much as I was suffering, they were having to face the fear more than I. They all had to keep my children safe and happy. I hear now that the day I collapsed in Queen Elizabeth Hospital and the night before my transplant, my children were extremely restless. They were both not sleeping and crying a lot and my sister in law just couldn’t comfort them and both of them wouldn’t settle down.

When I was told about the donor liver, I suddenly became oblivious to my pain. I was sad for the family that has lost someone precious but at the same time, I was so relieved. I felt I was already better! Around 6am my parents, sister, husband, nephew, uncle and aunt and my grandmother came to visit me. Immediately I felt really upset because it was so early and they obviously hadn’t slept or eaten breakfast. But the look on their faces! This huge smile that already showed their hope that I’d get better now. They all smothered me with hugs and kisses. My dad, he hugged me and said ‘you’re going to be better now'. When my dad gives me reassurance like that, I feel sure that I will be fine. I find so much strength and blessings in his words. My mother, she looked very worried. I can imagine her worry as a mother because she knew how unwell I was and how massive this surgery was. My husband and mum followed me to the anaesthetist where the doctors made me sign more papers. Every thing they were doing looked so complicated. I was smiling all the while but as soon as my husband and mum left, I cried. I couldn’t let the tears out in front of them because that would make everything so real and so much more scary. I didn’t know what was going to happen in surgery but I wanted them to remember me with a smile rather than looking scared if that was going to be the last time they all saw me. I kissed my children’s picture and off I went into another world.

I was so poorly during the surgery and after it that I was kept sedated for quite a few days as I was crazily pulling on so many wires. I was so delirious and I do have flash backs now of threatening the nurses because I felt so scared. Heavy on sedation on new drugs, it was all too much for me. I remember being somewhat awake during the election day. I think for a good 3 or 4 weeks everything was so blurry and dark. I was still hallucinating. It took me a good 3 weeks to be more alert and aware of my surroundings.

However the election day I can remember because the nurses put the radio on for me. I was still drowsy. In my head I kept thinking David Cameron winning the election was everything to do with my transplant! That he was trying to kill me and stop my transplant. My sister was saying good bye to me and I felt so scared and I just couldn’t tell her ‘dont leave me, David Cameron will kill me'. I couldn’t even move myself to my mouth! The next day, I was listening to the background sounds of the radio and again this time I felt that I was part of David Cameron's success ha! I was waiting for him to announce my name on the radio and I was feeling so pleased and thinking to myself ‘my parents will be so proud of me'. These memories make me giggle at times! This is what a cocktail of general anaesthetic, sedation, morphine and other new drugs do to one person!
I can’t believe how a year has gone so fast but I am feeling good. I am lucky that I have not caught any type of infection that has taken me back into hospital. Although, Queen Elizabeth is an amazing hospital and I miss the nurses so much! I was in there for so long and my nick name had become ‘babs'! They were so wonderful! Some of them would give me a hug when their shift ended or when their shift would start they would come and knock on my window and wave to me cheerily.

One year on and I always wonder what my donor family are doing. I still haven’t managed to bring myself to write to them but this is on my agenda before I go to my next clinic. I just shiver when I think, what if they hadn’t said yes to organ donation? I wouldn’t be here today. I wouldn’t be doing the normal day to day, to most mundane chores in my life. I wouldn’t be screaming my lungs out at my toddler boy, or wrapping them both up in a hug.

My life has changed, of course the fear of rejection remains within me. I’m forever checking my eyes to see if they are yellow and I am more aware of my body. I still have pain on my surgery site but this is normal for a very long time to come.
But I am grateful for still standing and being able to do everything independently again and being able to look after my children and their everyday needs. I am so grateful and thankful for the prayers and love from all my family and friends. I always know that I can never thank them enough. I will never be able to return all this love ever in my whole life.

But I’ll still say it to everyone. Thank you. Thank you for praying so hard for me and showing me and my family so much love. Please keep the prayers coming and I will always keep you in mine.

A year since ITU....

These past few months has been really difficult which I mentioned in another post. I have been trying to not concentrate on the nightmare I went through during these months last year. Reading all my status updates on Facebook has been upsetting but at the same time I have been extremely grateful for being where I am today.

This time last year, I was being taken down to ITU after collapsing suddenly. It was such a confusing experience. I came out of the bathroom feeling really uneasy and so restless. I felt sick for the millionth time again and usually when I was really sick and uneasy at home, I'd pour a jug of cold water on my head to calm myself down. I remember feeling very panicked and the junior doctor as just sitting in the chair asking me questions. It was my first morning in QE hospital after being transferred from Shrewsbury where I stayed for 8 days! The junior doctor kept asking me how I was feeling and was I in any pain and her questions kept making me even more anxious. I stood up to tell her to leave the room and I suddenly fell onto the bed. Strangely, I wasn't actually totally unconscious. I could hear the rush of feet in the background and the nurses stripping me off and putting on the hospital gown on me and attaching a million things onto my body. I could hear so many voices mostly belonging to a few doctors and so many nurses.

I remember this doctor, she kept saying 'poor young girl' and then the other doctor's corrected her to say I was 34 years old with two children. She was so shocked because she thought I was around 17/18! A bit of humour here. She was lovely and kept reassuring the other doctors that they wouldn't lose me, I'll be OK. I was very close to ending up in a coma. I kept wanting to sleep and these lovely nurses kept making me speak and making me frustrated so I wouldn't sleep!

My eldest nephew, I remember he was one of the first people coming in to see me so early in the morning. He was standing next to me crying. Then came in my mum and aunty, uncle and grandmother. This was then followed by my siblings and dad and and husband. It was really hard seeing everyone so upset. They had received a call early morning when I had collapsed. So you can imagine how scared they were.

A year on, and these memories are still very raw. They don't stop me from living my life but of course, it is a natural process to remember where you were this time a year ago. I woke up today feeling very tearful and holding my little daughter. She had come to visit me in ITU but I actually didn't let her see me. She would have felt really anxious and scared so I decided against it.

I was asked by someone, do I feel like me again after nearly a year? My answer was, no. Something so huge changes a person forever. No, I'm not like before. I go through really hard and rough days sometimes and all I want to do is feel rested but that isn't easy with two little ones. I sometimes forget to take my medication which is life depending so I've had to put in alarms on my phone to make sure I do not miss the doses. Some nights I hardly sleep because some of the medications has caused insomnia. I still experience pain on my surgical site and I feel a lot of pressure and tingly sensation there which means I have to sleep in certain positions. I suffer from so much pain on different parts of my joints. At least I can walk now but a few months ago I was finding it hard as my ankle would be in excrutiating pain.

But there are also a lot of positive things in my life. I don't let all that stop me from trying to live my life. I really hate it when people have say 'be grateful', 'move on' or 'someone's worse off than you'. Yeah maybe, but when you're going through a hard time or have been through it, these remarks are very hurtful. Have you been through health problems that nearly killed you? Have you had any form of transplant?

To feel sad and upset about your journey, doesn't mean we are ungrateful. Life isn't about feeling positive all day long. You're allowed to feel sad but then try to bring yourself out of it.

I love my life and I am so grateful and happy to be here today with my children, my amazing family members, and my amazing friends! They have really pulled me out of this nightmare. Lastly, my donor and their family.

What do I say about this family? They gave me life when it was being taken away. I haven't even got in touch with them yet because I do not know how to put it in words yet but I'm definitely planning to do this really soon. They deserve to see what difference their decision has made.

This brings me to the radio interview that I did on Monday! I was invited to tell my story although most of it was cut off to help raise awareness. Before falling ill, I really had no clue about organ donation or how that even made such a difference in someone's life.

I'd like everyone that reads this blog to realise how this affected me and had a donor not been found on time, then the consequences would have been different. I probably wouldn't be here typing up this post. So please, read about it, educate yourself and sign it. Your organs can save a life and a family from being devastated from such a huge loss. If someone else has the chance to live because of you, isn't that amazing? Would you take an organ if your life depended on it? Of course you would. As humans, we are desperate to live when we are so close to dying. So if you'd take it, you should also give it!

Anyway, I'll end this here as motherly duties call me! I have a lovely little toddler to clean up and do some cooking!

Enjoy your weekend :)

A year after

Exactly a year before

Give up or give in....

Well it has been quite a day since I opened my eyes this morning. It started with my daughter who is 8 years old and suffers from a rare disease called Costello Syndrome not wanting to go swimming. This syndrome affects the quality of her life pretty hugely and has since she was born. She was on tube feeds for many many years and it took us over a year to finally wean her off from it! Anyway, she's a wonderful little child and honestly is the most polite and well mannered little lady. She was never a rule breaker but maybe because she broke the norms when she was a tiny little one. I mean, no parent anticipates they'll be feeding their baby via a tube and on special paediatric feeds to up her calories! Anyhow, she was a well behaved child.

Of course she usually loves swimming but from what I know, it isn't the fun splashy lessons she used to have and of course in order to teach her, they have got her doing lots of exercises which Aleena isn't liking at the moment. It took me a long hour to pacify her and she was eventually happy to go to school all happy and ready to get into the pool.

Then my lovely nearly 3 year old son decided today was the day he will cry until I gave up or he gave in. Since 8.30am he has been crying to go and play outside in the garden when it has been raining profusely. I haven't been well and so I wasn't planning to live the moment and go in the garden drenching myself in rain and definitely not so early in the morning. My son usually gives in after half an hour but today this tantrum lasted the whole morning into the afternoon. I had bought him a pair of sandals/shoes to wear outside in the garden when playing and so since yesterday he has been walking in them shoes inside and really wanted to wear them outside.

I sometimes physically do not have the energy to discipline him the way I probably would have before falling ill. Firstly, I find it very hard to be firm with him and carry a nearly 3 year old to a naughty corner which he really doesn't understand or if he does, he pretends he doesn't. I just let him cry and hope that he will soon get himself together which he does eventually. However nowadays he has grown quite a stubborn personality and at times I find myself giving into his demands because I'm tired. Sometimes managing a breakfast without a million hurdles is impossible! I mean for any mother it is impossible anyway and throw into that a mother who has to deal with a child with special needs, a terrible two toddler and then a mother who has her good days with health and then the bad days. Of course, my husband helps out a lot and he is finding our little rebel of a toddler difficult these days. We are either hiding in the kitchen trying to get a hot cup of coffee with some snacks or we are dealing with this little terror dangling on us or pulling and pushing us. Breakfast is a must for me though as I have medications to take early in the morning without fail and then in the evening. So I have to stick to a good routine and make sure to take my anti rejection medications on time and same time everyday.

Of course he doesn't always behave like that but today was one of those days we had where everything was upsetting him. He was a happy bunny eventually when it got sunny and he was was able to wear his 'pider man' sandals outside!

On the other hand my daughter came back from school asking me 'can I go swimming tomorrow?'. I mean it took me an hour to make her understand how important it was she took part in her lessons and stop her from crying only for her to want to go swimming again tomorrow. What do I say? I have two entertaining souls in my life who make sure that I am never bored! Ha!

So this was my day! Full of humorous moments and me trying to get to my medication on time. It is hard being a mother again after a transplant. Having to regain the physical stamina and mental capacity to help two little people develop and reach their full abilities. I hope I am doing a good job and I hope my children know that I have my struggles but everyday I am trying to be the mother I once was.

Here's hoping to a peaceful day tomorrow. I am planning to start toilet training my son in the next week or so, so I'll be writing up posts on my experience with this little man.

Another little news. I will be coming on BBC Radio 4 on Monday 18th April between 10-11am in the women's hour to talk about my transplant. So tune in and listen out for me!

In his spiderman shoes!

Happy Mother's day!

Like every year, we see super markets and card shops and almost every retailer putting up posters and advertising this lovely occasion. An occasion which definitely should be celebrated all throughout the year because our mother's deserve every bit of love and care for nurturing us, for staying awake most nights when we were babies as our cries caused them heartache, for cooking us nutritional food to keep us growing and healthy and the list can go on. I don't think we can ever sit down and make a long list of what our mother's have done for us because to this day, the list would be endless.

I have two children, and they are only 8 and 2 and I feel the struggle of my mother who had 5 children, four of whom had smaller age gaps. I really cannot imagine looking after more than two children so having that many and keeping up with them whilst they grow and their needs change....well it must be overwhelming. I know some days I'm overwhelmed by so much and other days, I think 'well it wasn't too bad today, I hardly told them off or raised my voice today'.

So hats off to all those wonderful mother's that have raised us and kept us alive! And lots of love and respect to the mother's who are single and living this role every day with little support.

As this day was approaching for myself, I felt quite sad. Actually, since mid January I have been feeling very lost and wrapped up in my own little bubble. This January marked a year since I actually started feeling the symptoms of liver failure but at that point I did not even know it was that. By this time last year, I was literally either in bed or lying on the sofa most days after completing my parental duties. So, this has naturally bought about a lot of pain and feelings of fear and sadness. February also marked an entire year since my uncle passed away and last year I couldn't grieve for him as much because my own health issues had consumed me. His death had put a lot of fear within me because for so many weeks I had ignored my illness but somehow deep down I was really scared about some major revelation about my health. I had wondered so many times that I either had pancreas cancer or some form of stomach cancer because you just do not vomit 20 times a day from mid Jan to february/march. I was struggling to cope with my children when my husband was at work because let's face it, you have to work in order to survive no matter how much goes on in your home life. It was a lot for him to deal with too coming home from a stressful job and taking over with the children - which he did with absolute love and dedication and still does.

I look back now and I just wonder 'how did I do it? How did I manage to look after my children from mid January all the way to the end of March?'. It was just around easter holidays that I had become very yellow. I do remember being yellow beginning of march but I didn't even know what that meant during that point in my life. You hear of babies having jaundice right? I have never really looked into jaundice or serious health issues because I was only young. You do not expect something like that to take place in your life and shake up your entire life.

I spent so many weeks just living in the bathroom vomiting and doubling over in pain. It wasn't something that happened only during the day but it was an entire day and night thing. I was extremely sleep deprived and during that time my son who was a year old, he started playing up with sleep and would cry all night. I just remember running to the bathroom day and night about 20 times vomiting. I would come out of the bathroom and scream to my daughter 'I'm OK Aleena, mummy just needed the loo'. She is an anxious little girl who has had a rough time in life with her own health issues because of her rare genetic condition.

I'd have to paste on a smile before she left for school and after she would come back. She knew though, she knew her mummy was not fine.

So this year has bought back some horrible feelings and memories and it brings me to this subject of 'anxiety'. This is something I have never come across apart from during presentations in university. I was never a public speaker and my heart would beat so fast and I'd become all sweaty and nervous. I actually lost a few marks in university because I had to be excused from these assessments!

Ever since October, I've had quite a bit of anxiety. I suddenly feel that my heart is racing, I start panicking and feel really isolated and scared. You can't really talk to many people about this subject because those that have not suffered it will say 'do something that takes your mind off it' or 'stop thinking about it and it will stop'. The ignorance makes me laugh. I'm sure those that suffer from anxiety will know that you do not wait for it and neither can you ignore it. It is something that comes on unexpectedly without warning. It takes over your life and thoughts and suddenly you feel like the loneliest person on the planet.

For me though, I'm still waiting to see a therapist however in the mean time it has calmed down and I've managed to find my own ways to control it all. It isn't something I actually speak about but I felt today is mothers day. It is hard to be a mother even when you are standing tall and healthy because everyday brings new challenges for us mums. However, to top it with health issues, anxiety, depression....it makes it so much more harder and challenging. You almost feel like giving up but you push yourself up and you just look at your beautiful children and know that you cannot just give up. You have to fight this battle, you have to keep going and finding things to focus on.

Today, I'd like to dedicate this post to all those mother's who have serious health concerns including anxiety and depression. You're really doing an amazing job because right this moment you can give up but you won't. Yes your emotions are all over the place but you're still controlling them. You're still here and your children are all the more happier to have you here, like mine are happy to have me.

I'd also like to add that if you have friends or family members going through health issues and anxiety problems, don't leave them in the dark. Help them. They may not ask for it but they do need it. Sometimes they may want to just sit there quietly crying so let them. It is a healing process. Don't always think of giving advice or saying comforting words. Sometimes let them cry, you just hold them or listen to them and reassure them that you are there. Some souls go through very tough times and I know I'm one of them.

I've had life changing events which I have never thought would happen and sometimes, I miss my old friends being around me physically. I feel a good cry would heal my soul or just having them around me would lift up my mood. It isn't easy when your life is consumed by medications which are so strong, endless health worries and hospital appointments. Your life that was once-upon-a-time just normal, healthy has become a mountain of worries where you can see the light but it is hard to reach it.

I look at my children and I see hope and happiness in them. I see courage and dreams in them. So for now, I'll take each day at a time and muddle through my worries one by one. It isn't that I'm not enjoying my life or I am not grateful, it is more, accepting that my life has changed and I have to let go of the old me and adapt to the new me - which for now I'm trying to understand who I am.

Happy mother's day to all my lovely friends that struggle like me everyday but manage to get to the next day.

My world

I have so far talked about my transplant and the support I received from my family and friends and how my children were my motivation to keep my will power when there were days I felt like giving up. There were days I just felt like I wanted everything to end because I did not want another day of vomiting 24 hours. I did not want my privacy being invaded by people I did not know. I'm like an open book, I can speak to anyone about my life without hesitation but I'm fiercely independent about many factors in my life. I will not always speak about how I truly feel inside and what goes on in my little head. These things I keep for the close people in my life who understand me. I do not think everyone understands because you'd have to see someone very closely to understand the life they live and I'm a person that doesn't break down very quickly. An example is my daughter.

My daughter Aleena, she is the reason why I love life and why I will not break down. I had a very complicated pregnancy with my daughter and I was not even sure if I was going to have her in my life for too long. She was born on the 17th February 2008 via c-section. My grand father passed away a few hours after her birth. The day is a bittersweet memory. My grandfather suffered from a long term illness. It was a tough day to say the least. I wasn't sure whether I should be happy or crying. We bought Aleena home after 3 days and it was a hard time. So many emotions go through my mind when I think of that time. My daughter had difficulty feeding and could only take in 30  ml of milk

 every 3 hours and she would cry. I used to keep looking at her and I just knew deep down she looked different. I knew there was something wrong. She was hospitalised after a week again because of weight loss and dehydration. This is where the nurses tried feeding her with every given designed teats and bottles but she wasn't planning to make easy for us! We eventually had the speech therapist, a consultant, neurologist, cardiologist and geneticist on board. She was a very floppy baby with lots of loose skin. We luckily had a geneticist who saw a few more children with her condition and clinically she was diagnosed with Costello Syndrome a few months later the bloods confirmed this. I think my world shattered then. I can't remember crying that much because the important part here was we needed to feed her to let her grow. We discovered she had heart issues too and other issues with global development. So for 4 years we tube fed Aleena. Those were tough days. Me and my husband found it so hard with lack of sleep as she would cry and we would have to do certain things before tube feeding her to check her NG tube was in its right place. She had severe reflux so we would have to wait for a vomit shower quite literally after every feed. She failed to thrive sadly because of all these initial problems and so was on high calorie feeds. A moment when we were meant to be happy, we were left feeling really anxious for her future and trying to live this new life and slowly getting rid of bottles and things that Aleena didn't need.

She now eats fine. It took me a few years to wean her off from tubes. I was trained in changing NG tubes and her Mickey button in her little tummy. But she has taught us so much. We worked at her pace and we noticed all her little tiny developments that parents do not always notice because a typical baby grows pretty fast. We enjoyed having Aleena as a baby for so long and we loved her charming attitude. She has the most gorgeous smile and that is a trait of Costello Syndrome. They have this infectious smile and giggle and the most humourous character. Her whole medical team just loved Aleena and they never forget her.

She will be turning 8 years old soon. She still has lots of problems and she will always sadly have these problems however she is my reason of strength. She has the most affectionate and caring and sharing nature. She is never bored of life and even makes a trip to the corner shop sound like a trip abroad! She never misses an opportunity to party or celebrate any event. For her life is just beautiful and exciting. She makes her lunch time and dinner time sound so exciting. All the family know how much she loves food and eating out. How can you feel sad when you have a little person like that in your life? She gets most of her character from me. We are like two peas in a pod and we love eating, celebrating events, going out, having a family get together. She's also probably the most loving big sister someone could have.

My son Isam, he was born on 13th July 2013. What do I say about this little cute monster? He currently rules our house. If Aleena taught us patience, he taught us how to lose it fast enough in a good way. Isam bought a lot of happiness to our lives. Its like we were waiting for the day he arrives because he was bringing lots of joy with him. We experienced for the first time the joy of becoming parents to a healthy child. There was no drama with this little one. Everything was sort of smooth but he taught us to be parents all over again. Because Aleena was tube fed, this was our first time to bottle feed and sterilise bottles. Aleena's tubes came on sterilised packs for each use. He loved sleeping which was a bliss. Aleena did not sleep for 4 years properly. This little monster is teaching us so many new things. Aleena did not get up to the typical toddler naughtiness like Isam. She was always well behaved and never touched anything around the house. When she was told NO, she understood that. At the moment we are hiding things around the house because whatever he gets his hands on, it is either destroyed or all over the house (like moisturiser etc).

My two little children were my reason for trying to keep strong until the transplant. I  am not sure if I would have had that will power to carry on otherwise. It wasn't easy trying to live with all the symptoms of liver failure. After the transplant, I'd hate to even have a shower or get out of bed because of the energy it required. However the days I knew they were coming to visit me would give me the ability to go and have a shower and look a bit presentable. I saw the looks on their faces when they came in though. Aleena looked distant and did not always want to talk to me or be in hospital for so long. I know it was more difficult for her than my son. My son completely ignored me for months. That was very hard because I missed out on a lot of things with my son. We are OK now though. We have built a bond again and he is certainly keeping me on my toes. I love seeing the bond my two children share. When I was at hospital, Isam was everything to Aleena. They helped each other out in their own little ways.

Our life is not the same as it was once upon a time. We all do fear the future because of rejection and in case of problems in the future. However I think as a family of 4 we have learned to live a bit more spontaneously and appreciate the time we have together. My husband and me work together to make sure the children are happy first and foremost. I think we will live like this for a long time to come. I want to make the happiest memories for my children and make sure while I'm around they enjoy life. It doesn't mean we have to go and do crazy things. It could be a trip to local corner shop which is exciting enough for Aleena and Isam.

If you have children, enjoy life with them. We never know what is around the corner.  Life can complicated within a second and so it is important to stress less and enjoy more with our family.

If you are going through a hard time with liver failure symptoms or post transplant stress then you can freely contact me. I'm happy to answer questions. I've had quite a few people look through this blog and I know a lot of people look for a happy ending especially when they are parents.

There will be a happy ending for you but you have to try and stay positive. I know it isn't easy living with the liver failure symptoms but you will soon have that transplant and get your life back to normal with the help of your family members.

I'm enjoying my life a lot now and I have a lot of energy. I am able to look after my children now and do things with them. Only a few months ago I went to a soft play centre where there was a party. I was scared to go on one of the long slides with my children in case I hurt myself but I just took the opportunity. Then no one was able to stop me!

Little steps will turn into bigger things slowly.

The pictures above are with my family before I fell ill.

3 of my younger sibling at a wedding 3 months after transplant. I have another younger brother who was missing from the picture.

My mum's side of the family during the Christmas break.

The above pictures are after my transplant.

I have a lot more family than this and many friends to be thankful for.

Stubborn recovery

I still cannot always remember my transplant date and I always have to ask my husband for it. I had my transplant on 4th May 2015. The day that I remember coming around was the election day because the nurses put the radio on for me. I think I was kept under a lot of sedation because I was very restless when I did wake up after 2 days. I was still confused for weeks after that. I was in hospital for 6 more weeks after that transplant due to a few unsatisfactory blood results and fluid around my legs. My legs were so heavy that two nurses would have to lift it up on to the bed. It took me about 6 weeks to even walk with a bit of pace because that is when the fluid came down in my legs. I was constantly breathless and tired. Lying just on my back was making me frustrated as I was in constant pain. Life can be so frustrating when we do not have the gift of our mobility. It is so difficult to rely on people to take you to the toilet, to give you a shower, brush your hair, lift you into a position you are comfortable with. There were so many side effects to the medication. I suffered from constant nausea and vomiting all day. I couldn't even smell food so looking at it or even trying to eat was hard but I had to try to eat. My lovely aunty would send in food most days but even one bite took me half an hour to chew and swallow. I did regain my appetite back after 3 months post transplant.

As much it was lonely to be in one place on my own, it was just as much an experience that I will never forget. It was like being born again and learning how to walk, then learning to pick up the pace without wobbling. Learning how to eat and chew and swallow again and finally learning how to live again. It was such a nightmare but it taught me so much. I learnt how loved I was. We know we are loved but I do not think we get to see how many people come together for us because that usually happens after death. I got to see it in my life time. The amount of love and prayers I have received is beyond my imagination. I have such an amazing amount of people in my life. I have my lovely aunts and uncles who have gone through a tough time thanks to me! But I felt like a little kid again when they came to visit me. My cousins coming in with tears and banters. Our banters do not stop even in a serious occasion but we need to feel light and happy somehow! All my beautiful extended families that I have not seen in years came to visit me. In my heart I was so thankful even if I couldn't say it out loud because of the lethargy. I have such awesome and amazing relatives. I equally have amazing friends who constantly were with me. I'll just never forget this chapter in my life.

How do I feel now 8 months post transplant? I have great days but I equally have very emotional days. Some days I am so happy and the next day I might feel anxious and upset and recently very angry. This chapter has left me quite rattled in many ways and humbled in other ways. How do I manage it? It is hard because where I live currently, I have just my in laws and limited friends who are great. But I miss being around all my friends and family in Cardiff. However even then, I have such great friends who will everyday look out for me via WhatsApp or messages. I have a few lovely WhatsApp group where I can talk about the days I am feeling down and they will read and let me have an outburst. I have amazing cousins who always look out for me and I have one very amazing cousin that is always there! She knows who she is! I have relatives that I can pick up the phone to and cry. I have great in laws and nephews and niece that I can also talk to.

I have accepted this is going to be a year full of mixed emotions. I have to somehow shuffle through it slowly without rushing anything. However I am adamant on being stubbornly happy. Happy for my children. They need to see their mum in the happiest and healthiest form. They are my motivation to not break down and allow the ghosts to take over me. I will get through this anf emerge a better person.

So to those that are heading for a transplant or have had one recently, slow down. Take each day as it comes. Do not ignore the feelings you go through. You will experience anger, anxiety and sadness. It isn't a mile that you have to run, it is a cross country run where you will face harsh terrain and lots of bumps. Take every help you are offered because they are offering it out of love. Take the help of every friend and relative that want to be there and want you to reach your goal to recovery. There will be plenty of beautiful people there to help you because there are good people everywhere. I mean even my neighbours were praying for me and they were just so happy to see me home! But never forget these people because whoever is with us on our tough times especially this type of toughness, deserve a medal!

There may never come a time where we will fully recover because deep scars do not heal so quickly especially when you fall ill very suddenly. It is OK to have sad days but remember we are lucky to be living. We are lucky to be with our family, children, parents, siblings and friends. There are so many awaiting a donor and having to live a life in fear. We are the lucky people to be living and telling the story thank you to the donors. I do not mention my donor but that is because I am still not ready to enter that part of my life yet. However I will get there and I hope one day I can even meet my donor family!