My baby has Laryngomalacia.

Lockdown walks.

My daughter has Laryngomalacia and I wanted to bring some awareness to the condition. Me and my partner were both very unfamiliar as we haven’t experienced this in our families. There was also no indication of her having this in the scans.

It has taken me almost three months to come to terms with this and even then I haven’t fully accepted it. I feel scared for her at times and all I want to do is shout from the rooftops in anger because she has it. I haven’t really openly or publicly spoken about it, until now. I have tried to make my peace with it by sharing it with family and friends that are close to me, but I haven’t quite got the right words to express how it makes me feel knowing that my three month old daughter has moments where she struggles to breathe. She will grow out of it, but it can take up to two years. I find it frustrating because we don’t know when it will strengthen; it’s a waiting game. However, if her larynx doesn’t strengthen on its own she may need it operated on. As I sit here and try to write down how it makes me feel I know there is sadness, anger and frustration. I feel that its important to acknowledge all feelings because ignoring the unsavoury feelings leads to invalidation.

With her comforter.

Laryngomalacia is a congenital condition where the laryngeal structure is floppy, which causes the vocal cords to fall in towards the airway causing an obstruction. In our case it wasn’t hereditary and from the vocal cords doing this it creates stridor (noisy breathing which in our case has been mistaken for whooping cough by medical staff). The noise itself can vary from baby to baby and can also sound similar to a trumpet noise. Alongside this, babies with Laryngomalacia are more likely to get develop reflux (GERD) which can cause further discomfort and in some cases they would need to be medicated.

I suppose a major positive in this situation was that we were still in hospital when she was diagnosed with Laryngomalacia. During our hospital stay, we stayed in three different wards as we both had contracted an infection and were put on antibiotics. I had sepsis and my baby had GBS. (That’s a story for another post, comment below if you interested in reading about my birth story).

Since our baby was born my husband had been taking baby to neonatal every day at 12pm and 12am for antibiotics. It when she was five days old during his 12am trip that a nurse mentioned to him that ‘it sounds like she has a chest infection’ or ‘that her airways could be blocked’ and how we should have it checked by a paediatrician. Before this incident we had noticed she made a noise whilst sleeping which I described as being a low moan but we thought it was normal. The midwives had been monitoring her every four hours and hadn’t mentioned that this was abnormal either.

Day 8: During her hospital visit with a cannula, which was put in both hands during her stay.

We spent the next day waiting for a visit from the paediatrician. He didn’t arrive until a midwife panicked at the distress our baby was in. It was around 11pm as I was walking to the toilet that I noticed that her breathing and sounds were unusual. I was trying to be calm even though inside, I was afraid. I didn’t know what was going on with her. It seemed as though she was struggling to breathe due to the loudness of her stridor (at the time I didn’t know it was this). Her stridor was incredibly loud. Crying seemed to make it worse. My husband ran out of the room, and got a midwife who came in looking very concerned. She checked over our baby and decided to get an oxygen machine to check her oxygen levels. We stood helplessly, hearts racing as she put the strap on her foot. She told us to ignore the numbers, but how could we? I was alarmed. My body was in fight and flight mode, I was trying to hold back my tears. I couldn’t let myself collapse because I had to stay strong and get through this. It felt so surreal, my mind went to upsetting stories I’ve heard and seen. Our midwife was very young and you could see the sheer panic in her eyes, even whilst she was trying to reassure us.

She called for a paediatrician, who arrived promptly. He checked her over and told us that she had a mild form Laryngomalacia. He was very professional, calm and reassuring. As he was talking, I couldn’t help but feel annoyed at her having Laryngomalacia. I was already angry and upset that she had contracted GBS streptococcus. I was angry, that she had to have a lumbar puncture – meningitis check via injection in her spine. I was sad, that my tiny little baby was only a few days old and had to go through this. I just wanted to take her home. He informed both my hubby and I that we would need to monitor her for blue lips, apnea and retractions and would need to call an ambulance. My mind clung onto the possibility of having to worry about this for potentially the next two years. The thought of having to be on alert was daunting. I was exhausted at the thought of it, as all I wanted was for her to be okay and not worry about her. His diagnosis gave me some comfort in knowing what it was; my next thought process was to find out how we could manage it. She had already endured so much and she had only been on earth for five days. I was angry, upset and confused as to why she had a floppy larynx. The doctor was from East Surrey hospital and was incredibly sensitive as he was informing us of this condition and answered all our questions. I struggle with knowing that I can’t do anything to help her, her body has to work extra hard whilst she feeds and breathes.

In order to make sure she has the best care we were advised to keep her sitting upright during her feed, give her smaller feeds more frequently and keep her up for 20 minutes after every feed. Surprisingly, before the Dr had informed us of these adjustments, we had already been doing this.

Her Laryngomalacia also impacted my feeding plans. Whilst I was pregnant I was adamant that I would give breastfeeding a try. She was both breast and bottle fed for around 6 weeks, until I decided that formula was best for my baby. I myself noticed that she was struggling with breastfeeding, which normally requires babies to work extra hard. However because of Laryngomalacia I had to sit her up, it just wasn’t practical. My milk supply was already reduced from giving birth where I had lost 750ml blood from birth. Ultimately my main concern was for her well being and doing what’s best for her. So making feeding as easiest and simple for her became our main priority. It also meant that my hubby could be more involved with feeds allowing me time to recover from my vaginal delivery.

1st April: Feeding during our first journey out as a family of three.

Flash forward to three months, and her stridor is quite prominent. It’s a whole new world immersed in COVID-19, face masks and politics. I am also really concerned about the implications COVID-19 could have on her as it can impact breathing and my baby already has a floppy larynx which interferes with her breathing. My baby has had trouble with silent reflux, which we discovered when she was a month old. The hospital had told us that alongside Laryngomalacia babies tend to get reflux. She was prescribed with Gaviscon, which we gave with every feed. She spent many nights unsettled and screaming in pain. Gaviscon made a slight improvement. However, she ended up dropping a feed and was still in pain at least twice a day for around 30 minutes. Nothing would soothe her. I ended up spending the entire time, holding her, rocking her and soothing her. The doctors had mentioned that if this isn’t effective they would prescribe her something stronger. I hoped that we could avoid this as the medication would be much stronger and there could be other side effects.

Gaviscon and Colief to bring her some relief.

I continued to research and we decided to try anti-reflux milk. Before changing her milk we sought advice and support from the health visitor and the GP – who both agreed that this would be a sensible choice. Thankfully, since we have changed her milk, she has no more reflux. We have noticed an increase in appetite and are thankful that she didn’t need further intervention. In order to make sure she is receiving the best care and support she will be visiting ENT in the upcoming weeks.

I wanted to write about this and raise some awareness as I had not heard of this before. A lot of research online is not specific enough for babies with Laryngomalacia. We are just thankful that she is hitting all her milestones and developing well. We will overcome this blip together as a family.


Sufism, Rumi and the ‘Modern’ Muslim.


To be a Sufi, one must love all.
One must conquer ego,
before conquering the hearts of others.
Only once,
we have removed the devil
from inside,
can we truly be pure.

Time for another post, and this time on two things which are close to my heart – Sufism and Rumi. Disclaimer: I’m not an expert on Islam or Sufism – these are merely some of my personal views. In order for you to grasp the mysticism and spirituality of Islam, I will be referring to the basic requirements of Islam. I am also going to attempt to briefly explore the relationship between physical movements and verbal recitation in Islam and its significance in relation to Sufism. Lastly, I will be reflecting on the ‘Modern’ Muslim.

Before you start reading, I thought it would be best to introduce the five pillars of Islam as I will be commenting on these later on in the post. The five pillars of Islam are: the Shahada (verbal recitiation), Hajj (pilgrimage to Mecca), Salat (praying five times a day), Zakat (contributing a percentage of your wealth to the poor) and lastly Sawm (fasting during the month of Ramadan). These pillars have been enforced for a variety of different reasons which benefit both the individual and society. For instance, the purpose of Zakat is to cleanse our souls of greed and to ensure we help the less fortunate. The key ethos in Islam is that we are all responsible for one another regardless of their religious views.

One of the five
Our daily routine should include Salat where we must pray five times a day. These prayers are Fajr (dawn, before sunrise), Zuhr (midday, after the sun passes its highest), Asr (the late part of the afternoon, Maghrib (just after sunset) and Isha (between sunset and midnight). Men and women are both encouraged to perform Salat in a mosque (place of worship). This is to ensure we all connect with God on a regular basis and our community.

There is a significant relationship between physical acts and verbal recitation in Islam. In Salat (prayers) we recite Quranic verses in a particular order with a certain movements. The combination of both is believed to build and strengthen our bond with God. These movements are also a form of exercise and meditation which promote relaxation and a healthier body and mind. You could say that another purpose of Salat is to give our lives structure. We are required to leave what we are doing and give our full attention to God. These constant interruptions are intentional and we should be able to confidently detach ourselves from worldly pursuits. It’s a constant reminder of how this life is temporary and that we should focus on becoming good people. For example, the first prayer (Salat) of the day is Fajr, which is at dawn. This is one of the hardest prayer times but religiously the most rewarding as we are sacrificing our sleep to remember God. To summarise, in order to achieve spiritual growth we must be sincere and consistent. Sufism suggests that there is a significant connection between physical movements and verbal recitation which increase religiosity. Islams very practical method of worship, is also prevalent in other Abrahamic religions such as Christianity and Judaism.

I was born into a moderately practising family where we were taught the fundamentals, however ultimately it was our choice to practice. I sadly lack routine and structure in my life which is why I find it difficult to include Salat (I know that this is just an excuse due to my laziness). But, I am currently working on incorporating Salat into my daily routine. It’s mind over matter.

Sufism – Yes, we also have ism’s

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Now, for the complex Sufi part of the post. Sufism is a branch of Sunnism which has been around for many years. To be Sufi, one would have to be a lover of truth and spend their lives on a spiritual path towards God. It’s not something physical, but something which cannot be verbalised, as it involves the inner being. It focuses on the spiritual cleansing and growth of an individual. Generally speaking, most of us grow up fearing God because everyone always focuses on preventing sin and what happens if you disobey Allah. But, surely if we are taught to love God, rather than fear him we will want to obey his rules?  Surely that would make it more genuine and authentic? After all he is the Al-Hakeem (the All-Wise), Al-Ghafoor (the All-Forgiving), Al-Azeez (the Almighty) and the Al-Fat-Taah (the opener, remover of difficulties).

My Sufi discovery so far:

  • We should love God and not fear him.
  • Our biggest enemy is within ourselves – our nafs (ego).
  • Never judge another human being.
  • We should spend our lives building and strengthening our relationship with God.
  • Attempt to forgive others in the way in which we would like God to forgive our sins.

I wanted to give a brief introduction to the various groups within Islam. Islam is made up of many different branches e.g. Sufism is a branch of Sunnism. Regardless of which group we belong to we all classify ourselves as Muslims. According to Muslim scriptures (hadith) there will be 73 sects of Islam and only one will be on the right path. I’m sure some of you may have heard of Sunni, Shia, Wahabbi and Salafi? (If not, then enjoy this is a relatively brief introduction). Each of these groups have their own perspectives and thoughts on how Islam should be practised. These disagreements have sadly led to millions of deaths over the centuries. Although we belong to different groups we are still Muslims and we do have a similar beliefs, for example we all believe in the Oneness of God and his mercy. Regardless of our differences, I believe that all human beings should learn to respect one another and concentrate on building relationships. Our beliefs are our choice, and we should learn to respect others for their choices.

Mystic vs Scholar
The Sufi says, ‘I should mind my inner encounter with God rather than judging other people.’ An orthodox scholar, is always on the lookout for the mistakes of others. But don’t forget, students, most of the time he who complains about others is himself at fault.”(Shafak 2010, p59) The centuries old debate, which exists in all faiths – between the mystic and scholar- the heart and the mind. In my mind I picture this as a conflict between a literal orthodox scholar and the liberal open minded mystic.

The conflict between the mystic and scholar is a metaphorical representation of the relationship between the heart and mind. This predicament is prevalent in our own society, on many different levels, whether it’s externally or internally. Muslims face this inner battle both physically and spiritually. I believe that certain Muslim groups have very narrow and literal minds, which have enabled them to commit disastrous and inhumane acts. Sufism can be difficult to comprehend and apply, as it requires you to think about things from an alternative perspective – something more spiritual. In all truth, I believe that we should use both our hearts and minds to reach our goals, however we must not allow either to individually dominate our thinking. Yes, I’ve attempted to simplify a hugely complex matter, but one, which I’m continuously attempting to understand, adapt and develop.  However, this does raise the question of how do we differentiate between the two and how can we apply this in our thinking and in our lives?

We all seem to think we are scholars and that we’ve mastered the art of being Muslim. But sadly, we haven’t, we are instead feeding our nafs (ego). Social media has become a platform where people are able to attack others through ‘virtual’ public humiliation. This has become a common trend due to arrogance. I could go online and find some examples, but I’m sure you are all familiar and there’s no point in me sharing such negativity on my page. Shafak (2010) highlights Sufi ideology quite successfully ‘inner encounter with God rather than judging other people’ which is something that I’ve tried to implement into my own life and would like to encourage others to do the same. The question is, are we the mystic or the scholar?

As I’ve grown older I’ve realised we are human, therefore we are flawed and we will never be perfect. Even though we will never be perfect, we should aim for perfection in all that we do. We are human and that’s why we make mistakes, but it’s what we do with our mistakes, that defines us. Our inner battles with our nafs (ego) should be one of our main battles. We shouldn’t dictate to others how they should dress or live their lives – after all it’s their choice – we all have freewill.

My mum introduced Rumi to me in 2012, through Elif Shafak’s ‘Forty Rules of Love’  and I was hypnotised, mesmerised and hooked. Rumi (1207-1273) is a famous Sunni-Sufi Muslim poet. His work has been translated into many languages and is available on Amazon and eBay.  His writing has attracted spiritual seekers from around the world, regardless of their religious background. If you haven’t heard of him before, it’s probably because he isn’t British – but let’s not go into that! His ideals are universal regardless of his religion, race or background. He is known to be one of the greats like Shakespeare.

Through this discovery, I feel as though Islam was reintroduced and it became more mystical. I saw God, the world and people differently – I become more open minded and accepting. ‘Forty Rules of love‘ is about the friendship between Rumi and Shams of Tabriz, and it because of Shams – Rumi became a poet.

“I love my friends neither with my heart, 
nor with my mind. 
Just in case my heart might stop, 
mind can forget. 
I love them from my soul”
– Rumi.

The ‘Modern’ Muslim
I wanted to talk about Sufism and its relevance to the Muslim identity and its role in today’s society.  We all have inner battles and struggles we try to overcome on a daily basis regardless of how wealthy, famous or popular we are. Our spirituality is somewhat supernatural – I know, a strange choice of word, but I am merely playing on the idea that it is beyond scientific or rational understanding. We are all on our own individual paths of self-discovery and rather than be critical of other people’s lives, we should aim to be supportive. Religious conflicts and disagreements have always existed and sadly will always exist – unless we all come to a mutual understanding. It is a personal choice, which in its purest form cannot be extinguished. The Ummah, our Ummah (the Muslim nation) is in tatters, if we look at the Middle East all we see is anarchy, division, hatred and blood lust. Our family is hurting and broken- when we learn to rise above? The majority of us living peaceful lives – lets promote this face of Islam.

Being a practising Muslim in recent years has been incredibly challenging. We are a widely feared group and are often demonised because of a small group of fanatics. The way we dress and practice our faiths has isolated us. When we practice our faith people begin to fear us and think we have been radicalised. They’ve begun to stereotype us – they’re connecting us to who they see on the news. It’s becoming one big blur. Who are we? What have we become? Why has the media distorted our image? After all, we are your neighbours, teachers, doctors and cleaners – we are just like you.

The way, in which some groups have enforced Islam on others, is not Islam. It’s their mutilated version of Islam which they have interpreted based on their own personal beliefs (e.g. if they have sexist views, they will interpret Islam to support these views). I honestly can’t understand why they do, what they do and I doubt I will ever understand. But, as Muslims it’s our duty to respect and love others regardless of their faith. We shouldn’t attempt to control or dictate to others because of our own individual beliefs. We should respect them and their decisions and accept that we are all different. God is the ultimate judge of our actions, as he knows what’s in our hearts. If we have hate in our hearts and use it, to hurt others, he knows. If we have love in our hearts and base our actions according to that, then we should be at peace with the idea that he knows and he will serve justice to those who have been wronged.

“There is a candle in your heart, ready to be kindled.
There is a void in your soul, ready to be filled.
You feel it, don’t you?”

Shafak, E (2010) Forty Rules of Love Penguin.

A Pandemic Mama…

Sarah’s Story

“I’ve struggled with anxiety for as long as I can remember but when I fell pregnant it was like it just went away. It was a really positive experience for me and I stopped stressing about the small things. I gave birth to my daughter roughly 4 months before the pandemic started. I do feel really lucky that I got to have my partner with me throughout and everybody got to meet her when she was born, however I didn’t realise how mentally challenging I would find it being a first time mum once we had gone into isolation – it was even more challenging.

Me and my partner are both very close to our families so for them to suddenly not be able to see her or give her a cuddle was really tough. I felt enormous pressure to keep her in a good routine and keep her entertained whilst struggling with the anxiety of what was going on in the world. I also have been really cautious that she could also be picking up how I’m feeling, (the mum guilt was real). Even a daily walk became scary because of the thought of her catching anything. I never got to do any baby classes with her either or got to meet any other new mums which also made me feel really lonely.  I remember when the pandemic first started I was struggling to buy her essentials such as formula, baby wipes, Calpol etc, and I just broke down. I had enough to think about with a new baby let alone worrying about not being able to feed her or keep her clean.

The longer it went on it did get easier and became our new normal. We recently completed buying our new house which got delayed due to lockdown, so that was a massive achievement for us (especially juggling an 8 month old). I was also really fortunate my partner got to work from home so he was able to be there for all of her milestones, so there are some positives to being in lockdown. I did worry she was going to struggle with being around everyone again and be too dependent on me and my partner as we have only ones she’d been around for months.

Being a first time mum means that everything is so new and you have so many general worries everyday, that the pandemic just highlighted them and made them much worse. It has been really testing for me and made the whole new mum experience so much more stressful but, I’m just really grateful she’s happy and healthy and she’ll never remember any of this.”

Second Baby – This Time During A Pandemic

“I feel dramatic when I say that this pandemic has stolen so much joy from my pregnancy especially considering people have died during this unfortunate time. But I still can’t help but feel heartbroken over it. Although this pregnancy was very much a surprise, just like my first was, I really wanted to fully embrace it this time round. As I definitely put so much shame onto myself during my previous one as I was only 18 and I had not been in the relationship long enough to feel comfortable within my own skin. I had the add pressure of being with a partner whose family had very old fashioned values.

This time however I am older and wiser as they say, not to mention being with a different partner who I have been with for the last 6 years and married to for a year. I was looking forward to being more confident within myself during what is supposed to be such a beautiful experience in life. However, all the things that would have allowed me to feel like that were suddenly taken away, when lockdown happened. I had not long turned 20 weeks and we had just found out the sex of the baby and we really began to get excited about this new life, when the world turned upside down. Instead of spending my time and energy planning my baby shower and buying buying colour coordinated clothing, all the shops were shut and we were told that we could only see people within the same household as us, which made life very scary and lonely.

The fear of bringing such a fragile little life into the world began to creep into my mind, it didn’t help that my days were filled with horror stories. The worry of what would happen if either my first child or my husband caught the virus were also quite overwhelming and made it hard to look forward to the future. I feel like I was more consumed with keeping my baby in my tummy forever, than the intense feeling of wanting to hold them in my arms which most expectant mothers get.

As my firstborn was quite diddy when she was born, I was sent for further observations and growth scans, which at first I was quite pleased about, as it meant I would get to see the baby before we actually met him. I had planned to take my daughter, mum and best friend to each of the planned scans only to be disappointed as I had to go alone because of COVID-19 precautions.

However at the 32 week scan they told me that he was not growing as expected, this  was such a shock considering everything had been perfectly fine at the previous scan. I felt devastated that something could be wrong and facing this information alone was tough. I was then referred to a hospital which was risky because of COVID patients. This was daunting, but after further examinations I found out that baby is healthy and I have nothing to worry about in regards to that. If however something changes in the meantime, I know I would have to change my birth plan.

So far I am planning to have a home birth which was my original plan as I wanted the most comforting environment. With the risks of COVID-19 still lingering, I really hope I can still have a home birth. The idea of giving birth without my husband being allowed in the room is simply unbearable, so I’m praying that our baby keeps growing.”

Racism is complex.

“About me is the hardest part of any writing. We all try to present ourselves in the most desirable way as it makes us feel strong and in control. I don’t think I am any more unique than anyone else, but I know for sure my life experiences are not of an average middle-class British Pakistani. I was in year 2 when I left my primary school in North East England to migrate to Pakistan, to stay in a village with my granddad. I am the eldest grandchild in a Pakistani family, so I was treated like royalty. My first school in Pakistan was what they call the Urdu medium. We would sit on the floor and all subjects were taught in Urdu. It was a crash course for me, to bring me up to scratch with the language, which became my norm for the next 8 years.

After a year in that school, I moved to one of the most elite private schools and then later to one of Pakistan’s elite boarding schools. I was in Yr 9 in Pakistan, (which is equivalent to Yr 10 in England) when my parents decided it was time for me to reintegrate in Britain. I was finally comfortable with my studies in Pakistan, and I was about to go into my penultimate year of secondary study when I was told to pack my bags and get ready to fly back to Yorkshire. When I came back to the UK, speaking English became a hurdle. I knew the English language as I was taught it in Pakistan, but my confidence in speaking it was zero. Fortunately for me, I got a place in a school, which only had 4 Pakistani students so using Urdu wasn’t an option.

My first racial discrimination experience was quite fascinating. To set the scene, it happened when I was 3 months into Yr 10 and I was chosen to represent our school in an intercity school-enterprise event. The event was based on ten teams of ten, from ten local high schools and we had to put together a meal tray for an airline to serve their customers. All of the members in my team were Caucasian. The majority of people at this event were Caucasian. I only remember there being one other girl of African descent, amongst the 100 students that attended. At this point, I was still struggling with the language and often kept myself to myself. I was reserved and I worried that people would laugh at me. This was also when I first learned of the racial slur – ‘p*ki’. 

A few members of another team had been calling me p*ki’ all day, and I was oblivious to its history and relevance. While working on the project, I suggested that we put curry on our menu. This lead to someone from a competing team use the racial slur (p*ki’) to mock me which resulted in someone from my team defending me by throwing a tray at the boy. I was totally clueless, as to why this guy who was usually always polite to me had turned so aggressive. The next thing I remember is my team comforting me, but I was still totally clueless. We were then pulled out with the other team by the organisers with both our head of schools also called. I didn’t make anything of him using ‘p*ki” and then my whole team had been pulled out, because they had defended me when I was not even aware that I was being attacked. It was a strange experience, which even today I can’t fully understand, but it had a deep effect on how I came to perceive racism. I was targeted by a group of Caucasian people and was defended by another group of Caucasian individuals. When I speak to friends who grew up in the UK and are people of colour, they see racism as always being Caucasian vs people of colour. I have also experienced Caucasians standing up against other Caucasians, to defend and protect me (even when I didn’t really understand it).

My ethnicity is important to me and I strongly think it’s not so much because I stayed in Pakistan for 8 years and had the opportunity to learn culture and tradition first-hand but more because of the above incident. I think I can never thank my fellow students in school enough as not only did they help me gain confidence with the language again, but also encouraged me to be proud of my ethnicity. They encouraged me to wear my ethnicity by making a protective shield around me on a number of occasions. Above was one of many incidents I experienced throughout my school and college life, but people around me always came to my rescue.

Also, its worth mentioning that I am from Yorkshire and Yorkshire has a strong divide between South Asian and Caucasian communities. Most areas are dominated by one or another. So going to a school with hardly any Asian student was a very big issue within the family. But I thank my stars for guiding me there, as maybe if I went to a predominantly Asian school then I might have had different views on people. My experience encourages me to be proud of my Muslim and Pakistani background; it showed me that there are people in the world who will like you for what you are. Above is a fairy tale of people coming to defend me how utopia works. But life is not always fun. I have been stopped 9 times at Heathrow in one day by authorities from leaving the plane till collecting luggage. Spending 4+ hours at immigration at US airports is normal for me. I have even spent 6 hours at Singapore airport immigration desk and normally have British consulate on speed dial to assist me in getting clearance as I have been twice denied entry all because of my surname. I was once detained overnight for helping someone in a European country just because I am of Pakistani descent. I used to report these events as I thought reporting helped, but then I realised it doesn’t especially when it’s against formal authorities. Racial profiling is huge among some institutions. A immigration officer in Singapore apologised to me, when I was denied entry for 2nd time and was referred to the consulate of Singapore. It was his words, “I am denying it not because I don’t trust you, but because of your surname”. I have travelled extensively around the world and I have realised it’s not necessarily the people who are racist, but at times it’s the institute and their culture. ” – anon.

Managing Two

Morsal’s Story.

“My name is Morsal and I have lived in Norway for the last 6 years. I originally lived in Holland but moved here when I married my husband, we now have 2 beautiful kids, a 3-year-old son Masih and Liza who is now 7 months old. My husband works in healthcare with patients, so he often works different shifts. In Norway the maternity benefits and leave are really good and I was making the most of my time with my daughter at home whilst my son was attending kindergarten. This would give me time to do household chores like cooking, cleaning and of course taking care of Liza. I could also relax and had a chance to try to recover from lots of sleepless nights and prepare for when my son would come home from kindergarten.

Everything was working well, until corona happened. We saw that 600 people were infected in Norway, so we decided not to send Masih to kindergarten, which meant I would always be busy with my kids so my coffees and food all grew cold and showers became non-existent! It was going well for about a week, until my son started to get bored, as we couldn’t go out as much because of quarantine. We just about managed to go to the playground behind our block. My daughter really began to suffer, as she would sleep less because of all the noise my son would make. I would ask him to be quiet, but it never really worked. Making dinner became difficult, because just as I would put down Liza I would be lucky if she slept more than 10 minutes. My son became fussier with eating, so I would have to take my time to get him to eat dinner. This meant that my dinnertime would end up being around 9pm.

I really began to struggle because I had absolutely no time for myself. I previously had postpartum depression, straight after Masih’s birth, which lasted a year. I then got it during quarantine as I had both kids at home on my own for the whole day. I would cry a lot because I was tired and overwhelmed from dealing with a bored yelling toddler. Masih is very energetic and is sometimes too much to handle. I was so tired from the sleep deprivation and I often would have to deal with two screaming children at the same time on my own. Masih if not crying or bored spent the day continuously asking me for snacks! He also stopped taking naps in the day (which honestly I really needed him to take).

I was feeling mostly depressed and unhappy, but happy when I would look at my children especially when they would smile but, I did not feel complete. Whenever I had a second to think I was thought about how it would be without kids, or how it would be if I didn’t move to Norway, then I would feel so guilty. How did I dare to even think like this? Luckily I had some family members who I would talk to. It made me feel better but I still felt that people don’t understand me. Most nights I would just cry myself to sleep because all the emotions and thoughts would overwhelm me.

It was getting harder and harder to get out of my bed. I was struggling and felt that I just need to get through this day! Because of both mine and my kids, I felt that I was not made to be a mother. I am not patient enough and I am not made to do all these tasks. But somehow mother’s are strong and we manage to stay strong, because its what we want for out children, like they say children don’t need a good mom they need a happy mom. These hard days will pass and I am hopeful that it will get better with time.”

We had tickets booked for Holland before corona changed everything to get support from my family. But flights were cancelled, as there were a lot of people infected in Holland and so we decided not to travel there. It would have been great to get some help from my family with my two kids. I really didn’t expect to spend the majority of my maternity leave like this. But as these last few weeks have passed my daughter has grown and has begun sitting in her high chair. This has meant that I can now take a shower with the door open while she’s in the highchair and Masih plays independently. Masih is better at eating dinners, which is a major lockdown positive! He is now back at kindergarten where the days are shorter and the groups are smaller. I now fortunately have more time to breathe. I can focus on my daughters sleep routine – her naps now last longer than 2 hours! Liza is also better at sleeping at night, which I feel deteriorated during quarantine because I was stressed whilst breastfeeding her – a mother’s wellbeing really does impact her baby.”

Being Mixed Race and Dealing with Racist Nuns.

I am half Sri Lankan on my mother’s side, our surname is from someone in the olden days of missionaries who converted people to Christianity. On my fathers side I am supposedly Italian, but we did a DNA test and it turns out we are a mixture of lots of things on his side, West Asian features prominently. I didn’t grow up with him and I don’t know him properly or his family. I spent my holidays in Sri Lanka and running around with my cousins out there.

Christmas 2010

As an adult I encounter discrimination from all sides. I am not dark enough to be seen as Asian, not white enough to be English. I am too mixed to tick PoC but too dark to tick Caucasian. I am constantly asked what fake tan I am wearing and in the winter I am asked where I went on holiday. But this is my natural skin colour which as a natural yellow undertone.

In primary I was bullied at mainstream school from Reception to Yr2, both by the teachers and the students. I don’t know if it was racism, being poor or just they just wanted someone to hate. The school uniform was anything as long as it was purple – I turned up in a Victorian looking Laura Ashley gown, maybe that’s why I was a target? Free meal kids also had to wait till last to pick lunches, which meant that we always stood out. I was dyslexic and both the school and my mum saw me as stupid. I left and went to nun run school. There were 20 kids in each year group and in the whole school there was just 1 black kid. She was in the year above me and asked me where I was going for Yr6. I was confused because my school was up to Yr6, why would I need to move? My Yr5 teacher checked in on me to see if I was going to go into Yr6 at school. The Yr6 teacher was racist and not afraid to use this on kids. I felt that she was harshly marking to prepare is for secondary school as I was smart but made spelling mistakes, which made my grades go down. When we got our first multiple-choice exam – we had to circle the box so spelling and grammar was marked down – I failed. I checked my paper with the girl sat next to me and we 100% had the same answers, but mine been marked with X’s all over, and I had failed.

I spoke to the teacher to ask why mine had been marked as a fail and she was so angry and yelled at me. I was embarrassed because of her reaction but I remember feeling proud I had stuck up for myself. When my mum came in, she wouldn’t talk or look at my mum. The head teacher was also a nun who did nothing to help the situation or remove the teacher. My work went unmarked and class exams were ungraded for the rest of the year. That was the moment I realised why I was being treated like this and it was because I wasn’t white like my classmates. It made me realise the way people looked at my mum when she was there or how they would explain simple tasks to her as if she was a simpleton. I was angry and confused as my mum was English like them, why did they act different.

I choose to not eat meat or fish, but not for religious reasons. People assume its for religious reasons and tell me its ok to eat the meat they cooked as its not Pork or not Beef, so its fine for “my people to eat” which happened to me at a party. I’m given strange looks when drinking alcohol and I am reminded it contains alcohol. People also tell me how I remind them of someone off their favourite show and when I have Googled to see what character it is always the terrorist! Even going to the airport whilst wearing light clothing and slip off shoes and with extra time, I am often randomly selected for a search or for questions. I would think is it because I look like the terrorist from a TV show? Or do I look shifty? Could it be because a shoe bomber was Sri Lankan? I often don’t smile, as it could make it worse.

Graduation – me and my mother.

Since leaving university I have heard it’s gotten better as it is based in an area with high rates of unemployment and school drop outs. It was a breeding ground for hate and mistrust. The people voted BNP in. In university walking out of campus at night was not safe with people shouting at me “ Go back to where you come from” or “Go Home P*ki”. Fellow white artists would try block out my experiences by saying “you don’t look Sri Lankan/Asian/South Asian”.  

My first rude encounter about my race and background happened at a shoot for a glossy magazine. The catering team brought out the menu and on it was Jack Fruit Sri Lankan Curry! Which is amazing! I turned to the lead hair stylist exclaiming that this is my favourite; I need to tell my mum! She narrowed her eyes and asked, “How do you know what jack fruit is?” I explained it’s my favourite and then realised she meant how would someone of my colour know. I explained I am Sri Lankan and it’s something I eat till I burst. Her response was “Well your only half” and walked off to join the other artist and exclude me from their chat. Suddenly I was excluded from PoC at the shoot and it really knocked me. This encounter made want to be stronger and prouder of my background.

I contacted Dharma schools and various Facebook groups to find adult classes. The Temples were amazing and both East and West wanted to help me. Whilst living South East London I started to go to the temple for language classes. I was invited to the National Day celebrations by my mum didn’t want to come with me so I knew I would be alone and would stick out like a sore thumb. Thoughts about not being fully Sri Lankan and being too white came to mind and I have to say I was so thankful when the storm hit and meant I couldn’t leave my house.

Trying to fight racism is hard, especially when you feel unaccepted by the race you were born into, as I am too fair even though fair skin products are plastered everywhere in Sri Lanka and are sold as injections or creams. Marriage proposals in the newspapers list fair skinned individuals looking for fair skin individuals. The other side of this is that I am not white enough as I am too dark, have “exotic” features (this constantly annoys me as I am not a bird). I can quote Bollywood movies, I definitely didn’t have the freedoms of my white friends and I had my Kotahalu Mangalya/ Poopunitha Neerathu Viza (Google them!) with my mum, sister and my very elderly white neighbours Enid and Ralph (who were probably very confused). I had to listen white people shouting at me and my mum ‘to go home’. I am lucky though; I was born in the UK and in London. I get to shout at authorities, to express anger and wanting change for BLM, PoC, BAME and fight for LGBTQ+ rights. These are issues in Sri Lanka, which aren’t acceptable to speak about, where in order to even raise a glass I would have to send someone else to the shops because women aren’t even be allowed to buy alcohol.
– Sara Perera Sordillo

Everything Happens For a Reason

Charlotte’s Story

“When I had baby Ezra six months ago on 7th December 2019, me and my husband were ready for our exciting new chapter of life to begin with our gorgeous baby boy. We couldn’t wait for all the family gatherings, going to the swimming pool, trips to the zoo, strolls on the beach, and picnics at the park and parent and baby groups. We had it all planned out, and we couldn’t wait! Skip to the 21st March when Ezra was just three and a half months old and all of this was taken away from us when lockdown began. 

I am so disappointed that we’re unable to do any of the things that we had planned, but honestly the main reason I am so extremely sad is that our parents and brothers can no longer see our beautiful boy grow, as he is changing daily! They have missed a lot of firsts – him trying solid foods, being able to munch on his toes, taking a dip in the paddling pool, rolling over (and now rolling from one side of the room to the other every time we look away), becoming a little chatterbox and his laughing fits. I expected to do all of these things and to be able to share with those I love around me, but no, these firsts were just for my husband’s eyes and mine. Our families are all just as devastated as I am.

Now, with all of this in mind, I am a strong believer in everything happening for a reason. God doesn’t make mistakes, whether we understand it or not, and so even though there has been a lot of disappointment and fear for our families (and all families) during this time, there are positives to be taken from the situation and I need to keep reminding myself of this. I am so lucky that my husband is able to work from home for the time being, and this is a massive help for me, as Ezra is a boy who needs constant stimulation and never sits still (something to look forward to when he’s a toddler!). And so my husband is able to spend so much more time with Ezra than he would of if not for lockdown. If he was still at work, he would have probably missed most of Ezra’s firsts too! I definitely do not take for granted how lucky I am. 

During almost three months of quarantine, not being able to do the simple things like popping to my parent’s house, to get out if Ezra is having a grizzly day has been very challenging. But on the other hand it has given me the opportunity to bond with my baby without any distractions. It’s just our little family, day in and day out, and I’ve grown to truly love it. Don’t get me wrong, I cannot wait for our whole family to come together again regularly like we used to, but at the same time, I have learnt to soak in all of the one to one time I am currently getting and making the most of being able to selfishly keep him all to myself. I don’t have to share, and its great.

When all of this is over I will be so glad, but until then I am refusing to waste this time that we have been given and use it to strengthen the love between me and my son and reassure him every day that my love for him is beyond measure and that all he needs is me and his Daddy, everything and everyone else is just a lovely bonus. After all, once this is all over and his grandparents, aunts and uncles can see him again, I’m not going to get a look in, so I had better squeeze him extra hard now before he gets passed around!”

Called for an ambulance because my baby’s breathing changed.

Last night felt like a nightmare. I have decided to not include my baby’s name as it feels strange sharing it on public blogging space. For now I will just refer to her as baby. We had just returned home after isolating at my mums and I was in the process of settling in again, organising our clothes and thinking about the ways in which I can establish a routine for my baby. We returned from my mums because Azar was due to go back to work after being furloughed for three months. He began to get organised for work and started trimming his beard in our en-suite, it was around 11.30pm when I went into the bedroom with baby. I was ready for her to be unsettled as she’s at the 4 month mark of regression and has been unsettled from 11.30pm-1.30am for the last few nights.

After extensively researching co-sleeping we decided that it was the right decision for us. We also had other factors to consider as the first 2-3 months of her life were spent with her being in constant pain from silent reflux. She suffered, every-singe-day – twice a day! This also meant that she was often very unsettled, clingy and didn’t want to sleep in her Mose’s basket or Cozee. We resolved this issue without the need for medication from researching how to prevent reflux, we came across Aptamil Anti Reflux milk. We immediately saw a huge change in our baby and were relieved she was no longer in pain.

Anyways I went slightly off topic, but it’s necessary information. But back to last night. I have a few tactics which I use to put her to sleep, their effectiveness however is totally dependent on her mood – so I started with patting her gently, which didn’t work. I lay next to her and put her on my arm, holding her in an embrace and patted her on her back, whilst I rocking her. This is one is more strenuous and sometimes effective – as I write this it also sounds quite comical. This began to settle her and she fell asleep. So, my next mission was to get her off my arm and into a safe sleeping position. Just as I relaxed my hold, she started to cry. This cycle continued of putting her to sleep, moving her safely and then her waking up for about an hour or so. My partner came out of the bathroom looking concerned, as it was unusual for this to happen for this long, so we began to go through this list, of what could be wrong with her – nappy change, hunger, sore bum, teething, reflux and then we realised it was trapped wind! We began to remedy her discomfort with tummy massages and bicycles – which brought us a few minutes of peace and her some comfort. In the end, nothing we did helped and she was crying from being in pain and we decided to give her Calpol with the support and advice from my mum.

She finally fell asleep, this time she was knocked out. I walked back to the bedroom and crept into bed, trying to not to disturb her. She was utterly exhausted and so was I. I lay with her on my side, and she was on my right arm. I was preparing to move her into a safe sleeping position, when I noticed her breathing had changed, she seemed distressed at first and was whimpering. But then she began to hold her breath, I monitored it for a few more minutes and mentioned it to Azar. He grew extremely concerned. I suggested we call my mum, so that she could hear her breathing. Upon hearing her, mum said call an ambulance.

So we did just that.

I felt so scared and confused, I tried to stay calm. Azar called the ambulance, who asked him a variety of questions about her colour, breath and movement. We were told to keep her awake.They sent an ambulance. Whilst the ambulance was on its way the lady on the phone said she would stay with us, until she arrived. I think it was 2am by this point, I’m not sure. Time became unimportant. Questions and fears filled my head as to why she had done this. We felt scared as her Laryngomalacia impacts her breathing, so we speculated as to whether that was the cause?

The next few minutes dragged on for what felt like hours. Azar began to get things ready, whilst I was with baby – monitoring her and keeping her awake. She was alert and didn’t seem to bothered. At this point I began to think, am I wasting time by calling the Ambulance? I didn’t want to waste their time, when there could be more serious cases. But then, I began to focus on prioritising her health and making sure she got checked over, because if it was life threatening and we left it – what if it lead to something worse?!

Azar had to go collect the paramedics from the floor door – which can only be accessed by a fob. Two ladies came into our bedroom with very caring demeanours, I felt at ease. I knew then, that baby was in safe hands. They were both wearing emerald green trousers/top, black boots and light blue masks covering their mouths and nose. When we had called for an ambulance I had completely forgotten about COVID-19 risks and changes. This made me feel uneasy. We told them what had happened, one of the paramedics was typing information on an electronic device and the other began to unpack equipment. They checked her oxygen saturation levels and took a sample of her blood. Everything was coming back as being okay. I was still calmly panicking whilst trying to keep composed. It just felt as though, so much needed to be said and done. They recommended that because she’s under 1, she should be seen by a paediatrician at the hospital. Azar had already packed her bag. I was dazed and didn’t comprehend how we would get to the hospital, the paramedic told us me and baby would need to go via Ambulance and Azar would follow in his car. I got the carseat and the paramedic volunteered to carry her changing bag.

The whole situation was just surreal. I wanted to find out why she did what she did, but I was also petrified and hoped it wasn’t anything serious. In our COVID-19 world, hospitals only allow one person to go in with baby – so it was just me. The paramedic helped me strap in baby’s car seat and the ambulance reminded me about the concussion I had when I was 10 or 11 at school, which was the last time I had been in an ambulance . But, I didn’t remember what it looked like or what it had inside. I definelty won’t forget it this time.

In truth I needed Azar’s support and help, and he wanted to be with us. I understand all the precautions and the reasons for them, but they made everything more stressful. I just wanted him with me. Whilst leaving my flat with urgency, I forgot I needed to pee or I deprioritised it as my baby came first. So on my way to the hospital I became focused on me needing a wee. We arrived and I was given a mask. We were greeted by a nurse, and the paramedic handed us over to her. I noticed the nurse had to sign the paramedics notes as a handover procedure. I couldn’t help but notice the nurses stiff approach towards me and warm towards baby. She showed me no warmth, potentially because of COVID-19 stresses. As the paramedics left I thanked them for their help and support. The nurse checked over her oxygen saturation levels and everything looked good. I was relieved, but now we had to wait to be seen by a paediatrician.

We were then moved to a single room with a hospital chair and bed. We had to wait. In the meantime I comforted and fed baby. It must have been around 4am at this point, she was exhausted. I focused on keeping my eyelids open and was fighting off sleep, baby was fortunate enough to drift into the deepest sleep. The paediatrician came and assessed her, she checked her chest and oxygen levels again. She was all okay. I communicated my concerns about the Laryngomalacia, her history and her upcoming appointments. She said that babies can hold their breath and its a concern if they do it for longer than 20s. If it becomes a regular occurrence there could be an underlying issue. I informed her of baby’s upcoming appointment with the ENT (Ear, Nose and Throat specialist).

I still don’t understand why baby did it, but I am glad we took the measures and precaution that we had because our baby’s health is important and matters. As first time parents we had to make sure we do right by our baby especially with her the added pressure of Laryngomalacia, which we have very little experience with. In reflection, she is doing well. These pivotal moments are testing as parents. Whilst growing up and even now I look to my parents for comfort and reassurance. And now, whilst we have our own child – who wants our support, comfort and reassurance – I see myself turning to my parents. I am fortunate enough to have a great support system and I intend to utilise it, to make life easier and better for me and my family. More often than not, we try to conquer life alone – but this is unrealistic. You can be the most independent person in the world but you will still need support from your parents.

Fortunately baby is all okay and I pray she doesn’t hold her breath again, but if she were to do it again – we know what to do.

Growing up being called a ‘terrorist’ and ‘Taliban’ all because I am a Brown Muslim man.

“Slurs such as P*ki were used as well as terrorist and name calling such Osama bin Laden or Taliban.

My earliest memory of facing any form of racism or discrimination was as a 12 year old in secondary school. This occurred after the 7/7 bombings, I was asked randomly by a white student “Why did you bomb us?” Now at that age it was quite confusing as to why I’m being questioned about something like this, but now reflecting on it in 2020, it makes ‘sense’. It’s largely due to the way the media has presented Muslims etc. Throughout secondary school white kids sporadically racially abused me in my school (funnily enough they all turned out to be EDL supporters and Tommy Robinson fan boys; not surprised to be frank). Slurs such as P*ki were used as well as ‘terrorist’ and name calling such Osama bin Laden or Taliban.

Second form of discrimination I experienced was mostly by people of the Asian community. As a young Asian Muslim man born and raised in South East London, I grew up away from the Asian community (blessing in disguise). As an 18-year-old going to a University in East London, I met a lot of Asian people and made several friends for life. However, during my 3 years in University both in the environment and out of the environment, I’ve frequently been questioned as to why I speak English a certain way. In my eyes, I’ve grown up being able to be well spoken in English (which is normal), but I was often told I speak like a white man, as if only white people are allowed to be well-spoken. I was often told I ‘sound posh like the queen’ (queue the impersonations LOL) or a being a coconut, brown on the outside and white in the inside. These may not seem that harsh, but for me to hear these for quite a few years was extremely frustrating. I was always mentally strong enough to not give a shit, but it made me seriously grateful to God for keeping me away from such a community. This was often said to me my by Asian people of all backgrounds from East London.

The banter between my friends and myself, however was never an issue regarding this. It was people I didn’t know and that didn’t know me who said these ludicrous thing’s that surprised me the most. It’s as if I’m supposed to speak a specific way in East London. I have since often-faced Islamophobic slurs during my early 20s. I believe this is largely due to how often Islam is vilified in the media. White drunk people off and on the train at the O2 would tell me how much they hate me because I’m Muslim, etc.

However, the more became closer to my religion, the more I was able to easily just let go and not hold onto these things. The most important part of my identity for me is my faith. For me, no other aspects matter.

ALLHAMDULLILAH for the good and bad always! 

– Anon.

A Pandemic, Pregnancy and Diabetes.

Robyn’s Story

“Well this pregnancy and birth was completely different compared to my first. As I am a type 1 diabetic we have a higher risk of stillbirths/miscarriages/pre-eclampsia and all round bigger babies. We also have to have our eyes screened every trimester as it can cause complications because of the extra pressure and how quickly our blood sugar levels can change. During my first pregnancy I was being seen every two weeks in the first and second trimester, and then every week in the third. However, at 36 weeks I was rushed into having an emergency C-section at 36 weeks because I ended up getting pre-eclampsia. Even though my son was premature he weighed a whopping 8lbs 2oz.

However, my second pregnancy was extremely different due to COVID-19.

Firstly, this time around I had issues with both my eyes, which needed laser treatment to stop the bleeds at the back of the eyes. My left eye however had further complications and I ended up getting PVD (posterior vitreous detachment), which is also known to cause blindness. This led to me having to get an elected C-section (which I found okay as I had one with my first baby). It was arranged for me at 38 weeks. However, in comparison to my first baby I have had less frequent appointments with all my checks. For instance I had a phone consultation for 45 seconds about my eyes which made me feel very annoyed as I still had no idea what was happening to the back of my eyes. I was also annoyed about the lack of support with my eyes because I’ve had issues with them, and I had already put in a complaint about them before COVID-19 (as they kept cancelling my appointments). They needed to be checked, as I’ve had diabetes for 25 years, they are more at risk – so I wasn’t happy. All my eye checks were done in Harlow but because they were inconsistent my diabetics team based in Rosie Hospital at Addenbrookes, Cambridge said I needed to go to PALS and put in a complaint.

But at 34 weeks my blood sugars started to get out of control. Normally during pregnancy in every trimester my sugar levels should have been getting higher and higher because of insulin resistance, but mine were going lower and lower and the doctors had no idea why which became very dangerous for both me and my baby. This led me to being admitted into hospital until they were back under control. Sadly, because of COVID-19 I wasn’t allowed visitors and wasn’t allowed out of my room on the ward. I was told I had to stay in hospital until I had the baby. I was very upset and depressed as they said that they couldn’t move my C-section! This meant that I was to be away from my first born for a whole month! This put a huge stress on myself, my first and second baby. From the stress my firstborn son started playing up and my baby’s movements became restricted. After feeling frustrated and having lots of arguments with the doctors  (someone who wasn’t actually my doctor) they agreed that the best thing was to move my C-section forward to 36 weeks and three days. This meant that my husband was allowed to come into surgery and was then only to be allowed in with me on the recovery ward for two hours. This again stressed me out, as I knew I wouldn’t be able to walk or move properly for at least six hours, so how would I look after my baby. Luckily the midwives were very helpful, even in their masks and gowns.

I have not been able to have any of the midwife checks, get my daughter registered, or even have her weighed since birth. The first time will be at eight weeks old when she has her jabs at the doctors. I feel very bad for all the new/expecting mums who are in lockdown with no real support or idea what to expect. I am lucky that I had my first child and that I knew about the sleepless nights and things like colic or winding. I also know the signs of my daughter losing weight etc. Some people don’t know what to expect. I am lucky that my mum self-isolated for two weeks to come and help me out, now that my husband is back at work. As having a newborn and a 21-month year old is a handful to do alone whilst recovering from surgery. I am very gutted that my friends and family haven’t been able to meet my daughter yet and have only been able to see her over the phone. It a very odd feeling not being able to share her with them, and when they are feeling upset they can’t meet her or give her a cuddle.”