Feeling out of place...

I miss the old me. The one that laughed so hard and made others laugh. I miss myself as a child where I could hide a tooth brush in my pocket and hope that my uncle will force me to stay the night down their house. I loved staying over my uncle's places. As a child I longed to just live amongst a large family which I did. I had a huge family and I LOVED it. As a child, I'd wish that all my uncles and aunts lived on the same street so my cousins, siblings and I could play all day and I'd never have to have that aching feeling of missing them.

I miss my life as a teenager where I could drop down to any of my relatives and know that I'd get a million dishes to eat whether it was after college or work, my mamani was always ready to feed us like my mum. There was never a shortage of love and warmth in my life.

I miss just knocking on my friends' door and just parking myself on their sofa and ordering my favourite biryani and watching horror movies. I miss making them walk me home arm in arm.

Here I am now, away from all of that. Not a door to knock on when I feel like some company. No aunt or uncle forcing me to stay the night. I don't need to carry a tooth brush anymore. These days everyone has spare toothbrushes but a welcoming heart is always difficult to find.

I miss my childhood completely. I miss my city. I miss my dad. I miss his phone calls. I miss not being able to talk about my feelings with him.

I have great people in my life but we are plodding along with hardships and struggles. This is the real life. The life away from our childhood. But I miss carrying a tooth brush and I wish those days would come back to me. Why couldn't I remain that tooth brush girl that made all her loved ones put a lipstick kiss in a notebook so she could put it under her pillow and feel closer to them when she missed them?

Warning: these are just my feelings and has nothing to do with anyone. It's good to reflect sometimes and appreciate the beauty of childhood.

Feeling defeated!

Today I am feeling very hopeless with being in pain. The pain isn't as bad as other days but it makes me realise and feel quite isolated that there are no doctors I could turn to to help take away this pain. That leaves me feeling quite scared and isolated and I really do not feel like carrying on further.

I saw my liver consultant on Thursday and it happened to be the main consultant I am under. He explained everything thoroughly and he was truthful but at the same time I felt he shattered my tiny bit of hope that I had within me. He said that there may never be a diagnosis because our digestive system is so complicated and unfortunately doctors do not have answers every time. He was worried that I've had so many tests with no conclusion and that I was going to see ANOTHER doctor privately to seek answers.

I get what he meant. That I should look for management rather than a diagnosis at this point but who will help me manage it? I've tried various medications and it did nothing for me. I'm already on limited amount of food. Who do I ask help from? Where do I go? The last consultant was going to make a referral to a dietician and another gastroentorologist but the main doctor didn't feel I needed one?

So today I am feeling quite crap. I feel angry that I cannot eat normal food and eat like a normal person. Today I do not feel like being alive or being a mother or wife. I feel like wallowing in self pity and I wish everything would stop. I crave isolation from all my duties as I do not have any energy. I'm always so exhausted and so tired. I get overwhelmed with small things like attending two appointments a day or attending appointments everyday. This week it has been full off hospital appointments everyday. I do not feel like speaking to people and want to sometimes shut down.

But I get up and pray everyday even though my heart isn't always in it. I very rarely have the energy to make 'dua' for myself because I think what's the point. But I try everyday to find a bit of hope somewhere and continue for my childrens sake. They deserved a better mother. Not one that is always looking to rest or avoid them some days.

I pray that Allah swt hears my duas and cries that are building up within me. That He gives me sabr because without His help we have nothing.

Please keep me in your duas sincerely this Ramadan that there's some miracle that happens for me. That I can be a happier mother and a happy human. Not just paste a laugh and smile on my face because it is easier than moaning or crying.

This is what chronic pain does to a person and family. It destroys their inner peace and happiness.

3 years on after transplant

This time 3 years ago, I was in ITU, in severe pain on my right side and coming in and out of consciousness due to hypoglycemia.  My sugar levels were as low as 1.5/2. I remember muttering Aleena's name as I felt I was slipping away. I'm not sure how loud I spoke out her name but the patient next to me who I adopted as a sasa (he was Bengali and gave me lots of courage in my very very dark hours) he kept telling his nurse to come and check on me.

I feel like I fought with every fibre in my body for my daughter.  I kept worrying who would look after and her needs without me. Having a child with special needs and disabilities really makes you realise how it is important our health is for their sake.  I also kept making dua and crying 'la illaha illalahu, muhammadur rasulallah' because I truly felt like those were my last moments.

One way I felt scared but another way, I just wanted all the hardship to end. In that moment I left all my trust in Allah swt. But I could not stop picturing my childrens faces and especially Aleena's face. Isam was so young and he had gotten used to his new routine. In the beginning when I got hospitalised he would look for me but then slowly he adapted to everyone around him.

Aleena however, she's too attached to me and I knew inside, she'd be broken and distraught even if she didn't show it.

That night I kept crying to Allah swt to give me life for her sake. I can't explain what a scary position I was in just that night. The medical team had explained to me about the likelihood of inducing me into a coma but also that my INR was dangerously high to the point that transplant may not be an option.

I remember the team coming in and discussing that the transplant needed to happen asap but there were no donors.

At about 12am the junior doctor came to tell me that there was a likely donor but tests needed to be ran to see how healthy the liver was. I was told at around 4am that the transplant was going ahead early morning and the nurse would prepare me.

The sasa (uncle) next to me gave me so much encouragement before my family joined me at around 7am! I wasn't actually expecting anyone and I was hoping no one would come so early without sleeping or eating breakfast to visit me.

My dad gave me this beautiful wide smile and everyone gave me a hug and kiss. I'll never forget my A team which consisted of far too many people! They really pulled me through and kept up my spirits when all I wanted to do was close my eyes and just sleep forever.

Three years on and here I am. Thankful for organ donation. Thankful for all the donors and their families who are even more brave to make such a strong decision during the most weakest time in their life.

Thank you to all my beautiful family members, everyone and my beautiful friends. For as long as I am alive and breathing, I'll know who got me through this stage of my life and everyone that showered me with duas and prayers and love and positive thoughts. From the deepest part of my heart, thank you!

P.s. forgive me for all errors. Silly phone is lagging.

Originally written 3/05/18

Tranquility and peace

This prayer room at #QEhospital is so very special to me. When I was in hospital, my parents would go to the prayer room at least 4 times a day to offer their prayer but also they would cry to Allah for me. I wasn't physically well to ever go and visit the place when I was on the ward even after transplant. My dad spoke to the Imam there who came and spoke to and gave me words of courage and duas to read. My parents were so in love with peace and tranquility of this place amongst all the chaos they were experiencing. They would go and reflect and recite Quran as well and Friday's when it was Jummah day (a very special day in Islam) my dad would go and pray in congregation and ask people to pray for me.

When I go for my appointments, I always make it a point to go and visit this place. It makes me feel so close to my parents and I can picture them crying and making dua for me. Today my dad isn't with me and I'm going through some really tough time with my health. Last week I had a terrible wobble and I just wanted to hear my dad's voice and my mum's too (she's currently in another country). I felt really lost last week and I had no idea who to cry to as I felt hopeless and that I'd never come out of this test. No one can give you that comfort but I was lucky enough to have one of my lovely uncle who listened to my crying and really uplifted me spiritually. I managed to get it out of my system.

The hard times will always reveal the great people in our lives. No one will quite understand how hard it is to scroll down facebook as fast as you can avoiding pictures of food or trying to ignore people conversing about food even when they know your diet is so limited. It baffles me sometimes but I guess people have to live on. I'm grateful I can go to this place and feel some connection with my parents. I wish I could run to my dad and tell him to make dua for me. Gosh I was always harassing him but his duas always made me feel better. Sometimes I'd secretly stand outside his door and listen to him just speaking to Allah swt and when he'd mention his Childrens names I'd feel all the goosebumps and tears rolling down my cheeks. I miss my dad.

Brother and sister

He was so excited to see his sister pick him up after school. Forget about running to me, he ran to his sister and hugged her and held her hand. He told her about his day and Aleena was gushing like a proud big sister. This is the second time this month she went to pick him up. He said he gets 'ecited' when he sees his appi. I just loved the way he put her hand in his and guided her. May Allah swt always keep them united like this.
I had a few name options for him before he was born. However when he was born, I leaned towards the name Isam more which has the perfect meaning- 'protection, security'. It totally fits in with his younger brother role but in many ways, I hope he will be his appi's security and protection inshallah.

As he is getting older, he is understanding about his sister's needs. When she has a tantrum (he has them too), he will offer her comfort like her towel and dummy.
He's so concerned about her feet and keeps asking if she will be able to put them flat like him after her surgery. He showed me yesterday that his appi will run upstairs like him too. Such heart melting moments in my life I get to see.
The other day he was asked what he will be buying his appi for her birthday and he said 'a Queen'. He just knows how to impress people with his talk.

Sometimes he gets very frustrated when she can't take part in everything or cannot do all the physical things he can but he loves her so much. They equally share such an amazing bond alhumdulillah BUT also has his moments. He truly can be the perfect Isam for Aleena.

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.