My Liver Clinic Update

Finally, I have managed to sit down to type my update on my liver clinic appointment that I was dreading.  First of all though, I am typing from my little laptop (very tiny) that my husband bought for my birthday!  I haven’t typed on a keyboard in so many years and I’m struggling.  I used to be so fast at it too and on top my eyes are struggling with the screen as I suffer from keratoconus.  But I will have to make do with it.

If anyone follows me on Facebook, you’ll know that I have been really nervous about this appointment.  The previous appointment was very dramatic as I came across a very obnoxious doctor who made me cry which in turn forced me to leave the room.  I could feel myself shaking this time as I was really worried which doctor I’d come across.
Fortunately, I met a lovely Hepatologist who is also a Gastroenterologist.  He was very knowledgeable and humble at the same time and can I say, normal?  He listened to me and didn’t fob me off with, “when we see you next time....”, which I have been dealing with for over a year.  I think his panic alarm set in when I informed that the diagnosis I received was bile reflux and that I had seen a private surgeon through Bupa for a very big surgery called Duodenal Switch so the bile would flow downwards without causing me so much pain.  He, however has restricted me to no surgery and that they do not want anyone outside of QE touching me to perform surgeries.

I need further tests to rule out many other problems but also referred me for all these tests and also a nutritionist at the same time.  My kidneys are not doing great unfortunately and this has been the case for the past year so I will also now be seeing a nephrologist.  Between Aleena and I, I think we have got the whole NHS covered!

My kidneys do not concern me.  I do not even panic over abnormal liver results but this mysterious pain has really taken the life and soul out of me.  I avoid social circles because I cannot eat and drink everything.  My diet is extremely limited.  And I always worry when the pain will strike.  I have been in pain in family members home and even ended up vomiting in their home.  It isn’t pleasant and can really bring your confidence down.

I do not expect anyone’s life to stop for me but sometimes I do expect a little sensitivity towards my limited diet and what I am going through mentally and so sometimes avoiding parties and family functions is the only ideal thing for me.  I do not want to burden anyone with my sufferings and although I never have an unfriendly face, pretending to have a fake smile also upsets me.  My life takes a lot out of me and I’m not complaining but some days are hard.

I feel like I’m carrying a broken body around with me which the doctors are gluing bit by bit.  My liver, my kidneys, my stomach and let’s not get into the side effects of the medications.  The worst of all is, I forget things.  Sometimes I genuinely cannot remember certain things and it has been irritating me but apparently Prograf can cause some memory issues.

Some days are so hard to get out of bed when I have debilitating tiredness and get my children ready for school.  My son comes home with weekly homework and at least 2 books a week to read. Trying to keep on top of everything within the house and managing the children is becoming tiresome.  Aleena has finally started respite which gives me a few evenings to catch up with Isam on his reading but also some evenings I just rest in bed.

I stopped this blog in the middle and just getting round to finishing it up.  My liver doctor called me and well, I’m very anaemic hence the breathlessness and feeling suffocated and really exhausted. I have to have another endoscopy and a barium swallow test and maybe an angiography to see if there are any blockages. Let’s hope that’s what it is and they can treat it and I can be on my merry way to a healthier life.

Winter is wrapping itself around us and I hope it will be pass by soon and spring will be on its way.  I do love the beautiful decorations and all the happy and cheery people because of the festivities. It is nice to see people smile.  Just being around happy strangers can bring warmth into my heart and life. Let’s hope soon I will be one of them too!

Beating half term/fall break

It's half term! It is day two of half term.  I can’t explain how much I have been stressing about this school break.  We usually pack our bags and go to my parents so I can get some rest and the children can have company with their uncles and aunts and cousins being around. However, my family have gone away and so I have had to stay home with both my children.  It isn’t that I have never stayed home with them previously, it’s just with my chronic pain issues, I have limited energy and patience to entertain them now.  I try to avoid all the messy play as it includes a lot of tidying which my children completely avoid regardless of me screaming like Tarzan to get them to clean up.

I have been trying to mentally prepare myself for this break because let’s admit it? Children need entertainment.  And so the past few days I have been letting my children make a mess (I was in OCD heart failure can I just say) and explore their skills and well, you know, also make a mess but I’ve been really patient and I haven’t let the lioness within me wake up.  You see, my children LOVE playing with absolutely everything and I never deny them their right to be as creative as they want to be.  There are times I’m cringing and I know I will most likely have to clean up after them because it takes up more energy to literally beg them to do anything.  My 4 year old son has a way of making me feel like I’m at fault for his mess? He has a tactful way of saying, “mummy you will have to help me too”.  Yes, that’s right my four old has a way of making me do the work.  Do not get me wrong, they really don’t get away with much at home.  I am that mother that can listen to my children cry for hours and not give in to their demands but sometimes, my children just ignore me.  They completely blank out my emotional speeches regarding caring and sharing and helping.  My four year old just walks off really.  I do get offended but I pretend I haven’t taken it to heart.  Then there are days I’m trying give a motivational speech but I can feel my jaws hurt from all that fake laughing and my throat hurts from the way I’m trying to deliver this oh-so-heartfelt speech.  I cringe inside really because I can’t believe it has come to this? I’m sure other mums can relate. Truly you have my sympathy!

I wrote a blog post about Aleena last week and I mentioned how there is another side to this life with Aleena and to Aleena herself.  She very conveniently brings out toys which she rarely plays with for 10 minutes.  Her concentration on one activity doesn’t last long and the most frustrating part is, she casually leaves the activity saying, “I’m really tired mum, my legs hurt”.  How funny that her legs didn’t hurt when she was sprinting around the whole room on her tippy toes dancing just a few minutes ago but sitting down and playing has tired her out? So, during those times the lioness within me does make an entrance and we all know what happens when a mother turns into a lioness – God save the neighbours because even their ears will hurt!

And so I have been really worrying how I will let my children walk all over me while I try to keep my home together.  I’ve had OCD since I was a child and usually my habits changed depending on the circumstances and situation during those years.  However I have always been a meticulous person and as years have gone on some habits have remained with me.  Yes, I love my home to stay in order and have a place for everything but I do sometimes slow down and allow myself to breathe in the chaos.  I absolutely love for my children to draw, colour, build things with Lego’s but I avoid things like gluing and sticking, and play doh - the bane of every mother’s life who has a home that is carpeted (although after years of pain I realised cleaning the doh up after it has dried saves a lot of struggle).

Our first day, I prepared my children for a surprise with a rather palpitating heart I must say.  I decided that I will let them do a collage.  Aleena loves collage and Isam has not really done any so I felt generous and took out my beautiful shiny and glittery (I really hate glitter but I didn’t as a child) scrap papers and cut them into small pieces.  I took out the children’s scissors too and arranged the table for them and called them into the dining room.  Their little faces were full of smiles and their voices were so exciting and they were giggling and thanking me.  I actually didn’t bother wrapping them up in cellophane can you believe? I joke.  However if anyone follows me on Instagram or Facebook you will see how I wrap my children while they even eat ice cream – that’s how I help the environment by saving a load of clothes to wash.

We had a great few hours and I was able to leave them in between to complete a few chores around the house because clothes do not wash themselves and dishes do not dry themselves and anyone that says to live a little, well I prefer not having to cram in a million chores when I can plan my time and have lots of time to spend with my children.

After they completed the task they were so eager to help me clean up and so I announced in excitement that they can have a play doh session the next day (I should have waited on that because children do not forget promises but they forget the ones they make everyday).  I realised that they were both so content and proceeded on to helping me clear up all the mess and they finished their lunch nicely (I will ignore the mess Aleena makes when she even eats a lolly) and even watched a movie in peace while I ironed and watched with them.  They didn’t kill each other all day however I will ignore the fact that Isam's slight touch did make Aleena go, “ooowwwww”, a few times.  That’s just a done deal and she’s got into the habit of doing this which is annoying and then other times Isam could be treading all over her and she will be giggling and encouraging him – I am still trying to figure this out myself but I suppose some days they are just typical siblings at war.

We really enjoyed making masks the first day and it just made me realise that allowing such pleasures now and then isn’t so painful.  The clearing up is not so bad and I myself studied Art & Design for A'level and they were the most enjoyable years. I will minus the stress out of the equation but those years I was a stressed out teenager/young adult and so I loved getting myself busy and learning various art mediums/media.  My favourite was screen printing.  It was amazing to see the stencils I created come to life.  There was a certain satisfaction and joy in seeing your work come to life.

We had our play doh day today and it was a disaster.  I think I secretly threw out some of the play doh tools a while back and so I had to actually show them how to manually make things (we had plasticine in our days so these children have no idea what real kneading and moulding is).  Again, I let them get on with it.  I closed my eyes and pretended I can only see the good things so it wasn’t so bad and I’ve even gone and promised them some play doh tools if they have a good week.  I’ll have to remind myself to not store them in the wheelie bin where it gets collected every week.

I’ve noticed a great change in them in the past two days.  The more I nag them to do things and to complete their little chores the more they fight to not do it.  The more I tell them that they HAVE to clear up their mess, the more my son especially pretends he can’t hear me. It has made me realise that maybe we haven’t had some relaxing time in a long time.  They have picked up on my stress and daily battles with my chronic pain.  They’ve seen me literally lay around in pain and cry even when I try to avoid these situations but some days it is unavoidable.  Life does get in the way.  I probably haven’t let them do some messy play for a long time because of the fear that I’ll have to pick up the mess.  Truthfully, I haven’t been a confident mother and I’ve lost myself somewhere in the past two years. Appointments and daily life has taken a front seat and I’ve been trying to manage all that on top of everything else.  We always make sure we leave the weekends to go out to the library, visiting family or taking them out to eat but I rarely let them do messy play like gluing and sticking and painting and so I hope I can continue this now that I have faced my fears and realised, it isn’t so bad.  That things will fall into place if I am calm and less stressed and so far the past two days have been great.

We hope to do more creative things tomorrow as I have saved some yoghurt pots (I’m going all out, I know ha!) and I have been browsing through Pinterest for ideas.  My children will go back to school and tell all their friends what an amazing break they had hopefully and I will feel satisfied that for once I was a fun mother after a long time.  We have our share of happy days but lately they have been lacking but I hope we have plenty more of happy moments to come in the future and my chronic painful days will be a distant memory for my children and I.  The four of us deserve to have some happy times in our lives.  It has been limited in the past two years but here’s to happier days to come and surviving parenthood and if I do not write another blog post regarding positive school breaks, I’ve either eaten my words up or I’ve drowned in all our artwork!

Enjoy some pictures of my children's work.

 The above are my birthday cakes as I turn a year older on Friday.

An update into Aleena's journey....

Yesterday we had a meeting at Aleena's school where we discussed a lot of things like her progress and what we are expecting when she actually finishes her time at the special school. There’s a long while left until we get to that day but still they wanted to see what our aspirations are for Aleena.  Usually, when I attend these meetings we all become a little teary and emotional at her achievements and how far she’s come from the day she started at the school.  However for me, I feel so proud of Aleena's smallest of milestones because I know how far she’s come from the day she was born. Yesterday however the teacher started crying when discussing Aleena's kind and caring nature and we both cried together.  She’s a precious little girl and I’m definitely not biased as a mother because anyone who comes across Aleena will instantly notice her kind and unselfish character but also a very humorous side to her.

At school she is progressing so well on her targets but as a little human she’s developing such a beautiful and empathetic character that everyone loves.  She’s selfless in her support towards her peers who are developmentally behind and she’s always motivating them and cheering them on as her teachers say.  If she realises one of her peers are upset or poorly, she will go out of her way to support them in the way she can.  There are days she comes home and will tell me how one of her bus friend's or school friend's have been poorly and will feel really concerned and anxious for them and this goes for her teachers too.  She loves bringing home ‘star of the day' awards and at school she eagerly awaits them but if one of her friend receives the award instead, she’s just as happy and she will scream their name in excitement.

I’m not surprised at all because she reflects all these qualities wherever she is.  She’s full of love and support for all the people around her. She is like a little mother hen to her brother who also will go to Aleena when he’s in trouble and hold onto her and cry.  Aleena's life isn’t about the superficial and material goods, she really thrives on love.  Just one little kiss or hug from her brother brings her so much joy and she'll scream in excitement saying, “mummy I think Isam loves me a lot. What do you think? Look he gave me a kiss. He’s such a cutie pie”.  I love seeing this part of the bond between the two because it really brings out the joy on her face.  All she wants is love and acceptance and this isn’t always easy when you are developmentally behind and cannot keep up with your peers physically and mentally.

I say mentally but I do not mean it as intelligence level.  Aleena is extremely intelligent and bright, that we know of. However, Aleena perceives the world in a very black and white way.  She’s isn’t into what today’s 9 year olds are interested in.  She feels everyone is similar and sometimes doesn’t realise that people are taking advantage of her sweet nature where she will share everything just to be accepted into the fold of friendship.  I observe from afar and I can easily just intervene but it always intrigues me how far Aleena will go just to be acknowledged as an equal.  She will give up her tablet time so someone else will feel very pleased with her (she does the same with her brother). Sometimes as a mother, I feel my heart breaking into tiny pieces.  I find it hard when she feels rejected by children or she doesn’t quite understand what they are playing hence automatically she feels isolated.  This is when the realisation hits me that my child indeed is starting to feel different and is asking me questions on why other children do not want to play with her.

We have found her crying a few times on her own because all she wants is to play with other children.  As a mother, this is such a difficult journey and challenging for me to answer her questions.  I don’t want to tell her she is slightly different in terms of her needs and developments but I also want her to understand that situations like these will arise and I want to prepare her and make her resilient and independent.  I could easily cover her with my love and affection but I don’t want to turn her vulnerable and hence we are finding ways to explain to her what to do during these situations.

Aleena finds these rules maybe too rigid because she is just a soft and warm person that wants to offer everyone her friendship and love but as a mother, I have to teach her to stand up for herself and identify when other children are not welcoming her and even being rude to her.  She also attends mainstream setting once a week which we are hoping builds her confidence but also makes her understand that we are all different and it is OK to be different.

Aside from her kind side, Aleena is probably one of the most humorous little people I’ve come across.  She will sometimes say something and laugh at herself and say, “it's so hilarious mummy” or “I’m so hilarious mummy”.  A few weeks ago she went into a chip shop and asked a lady at the queue, “why are you here?” and the lady replied saying she wanted chips and Aleena proceeded to ask, “do you not cook at home?”.  It may not sound so humorous but Aleena uses a very sweet inquisitive tone to ask questions.  The lady laughed and up to this day, every time I think of it, I laugh on my own.

Another example is when she noticed one of her teacher was expecting and she casually went up to her and said, “you’re going to need to buy a cot soon won’t you?”.  The teacher was so surprised and said she couldn’t stop laughing about it later and even asked Aleena to help her make a list of what the baby will need.

This is our Aleena.  Full of sunshine and rainbows like the unicorn or ‘nunicorn' as she calls it.  If ever anyone is having a bad day, Aleena is sure to brighten up their day and bring a bit of happiness and laughter into their lives.  When some family members are feeling sad, they love having a hug from Aleena and they know she will comfort them and make them happy.  In a quiet room, Aleena will fill it with her belly laugh and loud giggles. Does she ever get sad? Yes she does but very rarely.  Life for her is fun even if that is just visiting Cardiff which she LOVES or her Aunty’s house around the corner.  If we have visitors, she’s so excited and will want to know if they will eat dinner at ours as it means they’ll sit longer.  This is my beautiful little girl.

I love that she can go to a school where she let’s down her guard and enjoys being there everyday.  I love going into these meetings knowing that I’ll always hear Aleena is a happy and confident child in that setting.  I’m so glad that Aleena goes to a place where she can be who she is in her full glory without having anyone take her for granted.

We are blessed to have Aleena as she has taught us to be patient and kind to people.  It isn’t an easy ride being her parents as there is another side to this beautiful journey but I’d rather concentrate on the positive and happy side. I am glad that we have had this opportunity to start this journey of parenthood with Aleena.  We are excited to see how she develops into a teenager and then to an adult and we are hoping the ride gets a bit easier for her health wise and remains stable as it has been for a few years.

A collection of Aleena's stickers she brings home from school.  She proudly sticks them on my wardrobe.

Mental Health Awareness Week

I have been away from my blog for quite a long time now and I just haven’t known what to write about. I feel like I don’t want to speak about the negative things in my life and I want people who are waiting to have a transplant to come here and take away some hope.

This week has been mental health awareness week. I’m about to write a personal blog about my situation and how I’ve been fighting with myself to keep on going for the sake of my children and my family.

If you saw me from the outside, I come across as a calm and content person. I always have Aleena’s teachers telling me how calm I am. If only they knew the tumultuous feelings I go through everyday in order to keep the chaos at bay and to carry on as best as I can. I would say the last few years have been really tough for me but when I look back at myself as a child, I have always had feelings of fear, isolation and anxiety in my life. As a child I have always loved being around my large family and I think everyone knows me as the girl-that-cried if anyone left our house too early or didn’t sit until it was time to eat. I always wanted a large gathering and I hated the sound of peace. Here I am, living somewhere that I have very little family and hardly any friends. Some days are really hard and I try to accept my situation but some days I just want to switch off and not think about the isolation I face everyday.  Today was one of those days. My health is letting me down to the point where I feel like I am becoming a burden to my family and this negative person that I hate being. I can’t put my pain aside because physically it takes my breath away. I have been living on macaroni for so many months now and just the thought of eating another meal of macaroni makes me want to not eat. But deeper than that are my other worries. Aleena is getting bigger and I am getting weaker. I feel like I can’t keep up with Aleena some days. My son, he doesn’t want to learn any form of independence because he sees that his sister gets a lot of physical support so he expects the same for himself too. It is really hard to explain to a 4 year old the difference in his and his sister’s circumstances.  He’s started school so now we have homework to complete and I have another set of letters to read, more dates to remember and more energy to put into everything.  The energy that I do not have currently.

As a child, I’ve always wanted to live on a long street with all the houses filled with my siblings and uncles and aunts and cousins. That was one of my biggest dream to have everyone near me and close to me and for us all to have fun everyday.  Now I am 36 years old and you know what? I still want this! I wish I had my own family members near me for the love and support. I wish the days where I couldn’t hold onto my emotions that I could run to one of my cousin or sibling and bury myself in their embrace.  But I have to deal with a lot on my own along with my husband. We find it tough most days with both our children.  Our days don’t always seem fun filled as most days I’m unwell and I want to be away from the children so they will not see me in pain crying. Some days I have to pretend the pain isn't there when I have no choice but to be a mother.

It wasn’t like this. I fought to stay happy when Aleena was born. I rarely felt broken even during those nights that we were sleep deprived and this wasn’t just the usual sleep deprivation that parents go through.  Aleena wouldn’t sleep after 2am and cried all night and never had naps. But we survived those days and we have done great. However with my health declining, nothing feels perfect anymore. I miss the years before I fell unwell and our life came to a standstill. They were the best days!

I wish I was that person that can hold onto someone and cry and let out my feelings.  I wish I could stop thinking that it is OK to not smile everyday and it is OK not to be OK. It is OK to cry to someone and speak about all the worries inside me.  I am learning slowly and I have accepted that I do suffer from depression and everyday I am trying to overcome these feelings. We have finally had funding to send Aleena to respite where she will spend a few hours a week where she will do fun things and I can take a bit of a break and work with Isam but also spend some time with him.  I’ve gone for counselling however it didn’t work out for me but my main problem is my current situation with chronic pain.  I think I will soon get some answers to resolve this situation and I hope my life will change for the better.

One day hopefully these horrible days will be over and there will be brighter days in my life and I will be that happy mother again who will be active and patient.

If you know someone around you that has a lot of responsibilities and you know they are going through hardship, please offer them help.  Offer them a break because they may not exhibit the signs of depression or anxiety easily. They might be like me, good at just getting on with things but could do with a break.  People that go through depression or other mental health illnesses never ask for help.  We always feel we are burdening people with our worries and also boring them with our never ending sadness. Mental health problems can suddenly creep up on us and leave us feeling lonely even in a room full of people.

I just hope there will be more help and support our there for people and more knowledge to help people.  It is hard getting counselling sessions and once you get them, you are put on a timer to express your feelings.  This is something that put me off counselling as I felt rushed and I could never talk about my worries without worrying that my time will be up.

There really needs to be some more support and help for people where it is accessible easily and I hope as time goes on, mental health will be viewed as an important subject like many other illnesses without any stigma attached to it. Let’s hope for a better future and brighter one for everyone struggling with mental health problems.

Rainy days....

This life can be such a burden at times. Where you once felt secure and happy, suddenly that same place or life can start feeling insecure and scary. I've always been a content person with whatever I was given in life. I’ve accepted so many challenges with energy and patience that now I feel a bit tired. I’m tired of feeling tired and I’m tired of waiting for sunny days to re-enter my life and give me some hope and happiness.
I’ve recently been struggling with my health quite a bit. In November I ended up with food poisoning. This was my biggest infection since my transplant and when I had sepsis straight after the transplant. I can’t even explain how much my body had to fight to get over this infection. I was in and out of the bathroom for 4 days until I couldn’t take the abdominal cramps any longer. I ended up going into a&e where they realised I was severely dehydrated that I also ended up with acute kidney injury. Since then nothing has been great. I’ve been suffering from heartburn since July along with chest pains and when I had a scope in July, everything was great. There was no sign of ulcer or anything. I’m feeling a bit exhausted now because my white blood count and red blood counts have been low. I can feel and see I’m losing weight and I’m still waiting to have an ultrasound or CT scan to see if there are any other underlying issues. Sometimes it is frustrating because just a few years ago I was a healthy person. Now here I am, living a life with so many health related challenges and still trying to breathe and be a mother to my children. This is what happens when you have an immuno suppressed life. You’re sometimes completely alone in this journey because no one will understand your pain and struggle to get through A DAY!
I’ve been feeling very isolated and alone recently. I live in a place where I have just one set of family and the few friends I had have moved on. It gets really depressing at times not having anyone to communicate with physically. I have an abundance of friends that I speak on the phone to and through messages but I miss that physical meeting up and chatting face to face. I don’t really have anywhere I belong here sometimes.
My anxiety has unfortunately increased too recently and I’m struggling to fight this off too along with the indigestion symptoms and epigastric pain. I experienced epigastric pain just before Christmas and the pain was so bad that I was on the floor crying in pain. I was close to calling an ambulance but somehow managed to cope with it. This pain has increased in intensity which radiates to my back and chest. Sometimes I feel like the people who work for NHS have become so busy trying to just fit your symptoms into a label that they miss how the patient is feeling. A few months ago when I had visited one of the Liver consultant’s and expressed my concern, he turned around and said I’m looking for ‘perfection'. I was surprised. Yes, I’m looking for perfection because I didn’t go through so many months of pain and discomfort to only live in pain. I feel sometimes they just check the liver side of things and ignore what else the patient is going through.
Apart from that, I feel so alone. As a child, I grew up in a large extended family. I always had people around me for company. I grew up with a large group of cousins and never had the time to be bored or alone. I had plenty of uncles and aunts around me. Me and my siblings were the similar age so we all grew up together like friends. I do remember though as a child and young teenager, I hated a quiet life. I always craved for people to be in our house. I always made my mum cook for relatives so they would eat with us. Every time I went to my eldest uncle’s house, towards the end of break he’d have to carry me into the car because I never wanted to leave them.
As a young adult, I had plenty of friends and I still have the same friends from when I was 6 years old and 11 years old. We have built so much history and memories together. I am blessed that I still have all of these friends in my life. I know a lot of people lose touch with their friends but fortunately we all still make the effort to be in each others lives.
I knew life wasn’t going to be an easy ride after a transplant but I never thought I’d be living with so many different kind of symptoms and that suddenly I would feel so much isolation in my life. But such is life, we plan so many things but life always has something else in store for us. It isn’t easy either to just uproot and start somewhere new. Sometimes we have a lot of commitments and for me, my transplant hospital is closer to my current location and my daughter has the best medical team on board here. We rarely have to wait for too long for my daughter's appointments and there’s hardly any waiting time to see certain specialists. Aleena's consultants always work together with us and it is hard to find such a great team elsewhere.
I am hoping once I get better that I can start doing things more and feeling more energetic with my family. It isn’t like I sit here feeling sad. I try to do things with my children and husband during weekends. I try to go out and get some fresh air. I am hoping this is just a temporary blip in my health and I will get the help I require.
Being a child is such a blessing, we have no idea about some of these emotions. And I had the best childhood ever. I miss my dad too. When I’d visit him, I’d tell him how alone I felt here or how I missed my life in Cardiff. He was always telling me to move back but it isn’t so easy. I just miss talking to him. Most days in my mind I’m talking to him but I try not to because the realisation soon kicks in that he isn’t here anymore.
I would like to say embrace your healthy life. We have no idea what is around the corner and believe me, if you do not have great health then you’re going to be sad, you’ll find it difficult to do things. So enjoy these beautiful days you have with your family and friends.
I still have hope that I will get better soon and will have the strength to do more things that I haven’t been able to do in the last few months....this includes eating. I’ve cut down on a lot of delicious food to see if that helps(hardly). In the mean time, I’ll just read books and pretend to be the positive character from the book.
I’m sorry if this has been a rant of a post but we can’t all positive everyday. Sometimes we all have rough days and phases in life. Here’s to hoping and praying we all have happier times in life.

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.