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Mummy and Raj

Life after losing my superhero

Signs Signs Signs πŸ˜ŠπŸ’š

This will be a brief blog but I wanted to share a really happy moment I had.

Today I had a business meeting with someone and a few minutes into the meeting Raj somehow came up. I explained how I had lost Raj to a brain tumour. The lady I was meeting with asked me a few questions about Raj. How old was he when diagnosed and what treatment he had had? A few minutes later she said well I will tell you something about me. “I also lost a child. I lost my daughter when she was 5 to a tumour also.” That was 30 years ago. Her daughter same as Raj had chemo and surgery but in the end they couldnt do anymore for her. She went on to explain she feels they will be there waiting for us when it is our time but we just need to live and try and be happy until then. She said she likes to think family gone before us are all together.

Before I left she printed something for me. It was this poem.

Somedays I need that sign. Today felt like it was a sign from Raj or God to say he is ok. Its ok to live. He will be there waiting for me. Sometimes its hard to share our thoughts or private life. But we are all vunerable and hurting and if we open ourselves up it can lead to beautiful things. There we were 2 strangers, and just being open led us to share something so personal and beautiful.

This lady made my day. I looked at her and thought…..she is right. We will meet our loved ones again. I cant stop smiling right now. We are all human. We all have problems, and need help once in a while. Its ok to share. Sometimes sharing leads to understanding and solutions we didnt think exist. A problem shared can help lighten the load. I needed that today. The signs are all around us. We just need to be open to them πŸ˜ŠπŸ’š.

31st January 2018. πŸ’”πŸ’”πŸ’”πŸ’”

It’s coming up to that day. 1 year ago the day that I lost all control. The day I had to face reality. The day I bought my son home from Great Ormond Street having been told they could no longer help us. I cant seem to think about anything else at all. My mind is clouded with so much…..work and charity events BUT its so clear. Right at the front of my mind all I can think about is that day.

We had been told in December 2017 that it wasnt going well. A MRI had been scheduled for Jan 31st 2018 to see if our prayers, science or even luck had played a part in trying to get Raj’s tumour to reduce. I knew the risks were high and I knew the chance of a miracle were getting bleaker day by day. I however never let Raj see this. I was his mummy and I was always by his side smiling, laughing and enjoying every given moment with him. I would never let him be scared.

On the 30th January 2018 I took Raj into London, one day before the MRI. Its not something I have chosen to share publicly in big way, but someone hugely special to me and Raj was there with us. Every step of the way. Someone who was there very early on when Raj relapsed who was given the opportunity to walk away before things got ‘ugly’. He chose to not only stay and take care of me but Raj also. Our time was nothing but smiles, silly videos a lifetime of memories 😊.

That day we went to London Zoo. It was fairly empty so really easy to get around. It was so much fun. Raj was smiling and so so happy. He posed with every animal he could. He seemed to be full of energy this day. Even though it was January it was dry. Honestly it was the most perfect day. A day I will never ever forget.

Later that day we headed off to the hotel. We had a lovely meal in our room and cuddles in bed with Raj. πŸ’—πŸ’šπŸ˜Š.

In the evening we weren’t given a choice. We were having TGIs for the 50 millionth time πŸ™„. I say this but…gosh what I would do to sit and eat TGIS with Raj again.

We went to bed that evening in our hotel room content. If only for that moment in time. Life was amazing.

By the 7.30am the next day we were in the hospital. Raj was ready for the ‘pictures’ of his brain to be taken. Just like maybe the 40 other times we had done so. This time…this time everything was different though. I was expecting to see some of Raj’s other family to come to the hospital that day but in the end it was just the 3 of us. Raj went in for his scan. He was gone an hour or so. He had barely been back 30 minutes when we were asked to meet the doctor in a small room on the ward to discuss the scan. We left Raj with a nurse and we walked into that room. Nothing had worked. πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”πŸ’”

They said they were so sorry but they had no other options for us to take. We sat there sobbing…tears flowing like they would never end. They left us alone for a bit. The head research nurse called Ammi came and saw us a little bit later. She was a lovely nurse. She was Sikh so we spoke about this from a point of view that he would be safe no matter what thereafter. I was sat there thinking omg Raj will be thinking where is mum but Ammi told me my best friend Lauren had arrived while we were in the room with the doctors and was outside with Raj in his room. We sat and just cried and then we got up. Wiped our tears and with a big smile went back to Raj. We made some jokes with Raj and packed our stuff up to go home.

That final journey out of the ward. Its like everything is in slow motion. You notice everything. The walls…the signs…peoples faces. We forced a smile as we pushed Raj’s wheelchair out of there. Our eyes and gazes meeting every nurse and our research doctors as we said bye. Just a normal goodbye as far as Raj was concerned but us adults had that look….where your soul is bare and there is that connection for a milli-second which is filled with love and empathy and although its only a glance, they know every part of your body is screaming in excrutiating pain. We knew we would never meet again. They knew I was taking my baby boy, my world, the most important person in my life home to die. πŸ’”

I dont remember the car journey home. All I remember is on the 31st January I accepted my son was going to be leaving me soon and there was nothing in this world I could do about it.

And now? Im broken inside. Part of me will never be fixed. I asked my other half recently…crying in a heap on the floor in Rajs bedroom. How can you love someone so broken? Crazily he does and I love that I had those moments with him and Raj. Love which is true lasts forever. I will never stop grieving for Raj because I will love him forever. He will alway be my favourite boy. πŸ’šπŸ’šπŸ’šπŸ’š

I try to keep myself busy. Today I attended a lunch at a golf club in Henley to talk about Raj and my experience with The Brain Tumour Charity. I dont want other families to ever feel this pain. Im also busy trying to make my Charity ball in May a success. I want to remember Raj with everyone who is willing to come and listen and raise money for a cure. It is too late for us but if I can be part of this journey to helping other families…my soul will rest easy one day knowing I tried to make a difference. I hope many of you will be part of this journey with me.

To my darling Raj…..just know how much mummy loves you baby boy. I cant wait to see you again. Im gonna smother you with so many sloppy kisses monkey! You will always be my favourite boy in the whole wide world. 😊

πŸ’šπŸ’šπŸ’š

New Chapters

What a year. 2018 started off tough. We were fighting. Fighting so hard for Raj. We were making our last attempts at conventional treatment. By the end of Jan 2018 I had been told that was it. In Feb 2018 I proceeded with cannabis oil. This was probably one of the scariest times. I was very open with Raj’s medical team and they all understood my need to keep trying. There is no medical guidance, or dosing instructions. It was a lonely time but I started the oil with the help of another amazing oncology mum. I personally believe this is what kept Raj so so well in his last days. He did things differently for sure! My soldier 😊.

The year has been full of firsts. First birthdays without Raj, first occassions. What hurts most is doing and seeing things Raj would have loved. When I go Asda, for some reason I gravitate towards the childrens clothes aisles. I look at the marvel and dinasour tops. The clothes I would usually be picking up for my baby boy. Thats what hurts most. New memories and moments without Raj.

This year also showed me who really cares about me. I mean truly. This year unveiled all the good souls in my life. The people with great energies and warmth. These people are part of my family….if not only in this life, I believe in past lives. The world can be a really beautiful place if you allow yourself to see what is good. At the same time you have to let go of what is draining. What is not serving your best interests. Alot of this is more in my mind vs physically letting go of people. I have family members who didnt even acknowledge my son died. Random strangers across the world and internet reached out to me yet people who were meant to be so close closed their eyes to my pain. People dont even think about what they say often which is really frustrating. I have one family member who is not happy in her marriage and when I saw her recently she said to me you are so lucky Suki. You are so lucky you are divorced. Me lucky? My son died but yea I am lucky? I get it. I was in an unhappy marriage for years but still…….think before you speak! I spent alot of energy and gave up over Β£100k to end my marriage. I live everyday without my son, my lil buddy, my best friend. Lucky…I dont think so πŸ™„πŸ™„πŸ™„.

Others text me here and then and ask ‘how are you?’. I reply….’im ok but its hard. I miss Raj ‘. Often their response is ‘yea, it must be so hard. Well take care and see you soon. ‘ Will I see them soon? Nope. These guys are not truly interested in how I am. Personally I feel like they text to feel better about themselves. Like somehow they have checked in on me and ticked that box. I am always polite though and I always respond. The ones who do care, push to see me. They knuckle me down to a date to meet. They talk to me about Raj. They allow me to talk about my son.They actually take time to send me a well thought out message. I love these people. They know I am not ok. They remember my sons birthday. They include Raj in their messages and well wishes for Christmas etc. They are the good people I will keep close and make an effort to spend time with.

It feels incredibly sad to be going into a new year without Raj. In 4 months it will be a year since Raj passed away. A whole year! I have no idea where this year has gone. It feels like yesterday I lost Raj. Although he is gone. Raj is around everywhere. In the things around the house. In the way I live my life. In my heart. I still talk to Raj. I feel so close to him. Its the physical touch I miss. We used to be so close. He would act like he was a big boy and didnt like kisses from mum but he was always so cuddly with me. He used to sleep on my arm the last few months at night. If I was sat next to him he would nudge towards me. These memories make my heart smile. 😊😊😊😊

Raj’s birthday came and went also. The build up to his birthday was tremendous. It was all I could think about. We played his favourite games. I bought Raj some of his favourite marvel characters that will go in his bedroom. His family bought and did things in his memory also. I really think he would have approved of the day.

I love my Raj so much. More than I will ever love anyone. He is the most special boy. Thankyou to each and everyone of you has helped me honour and remember Raj. From friends, family to his school, nurses, and the special charities we have had in our lives. We thank you. Raj is infinity. I hope you will continue to help remember Raj with me. I appreciate you all. Wishing you all happiness and good health in 2019. Let’s push each other to be amazing and strong individuals. To give love and exude good energy to all who cross our paths. Much love, Raj’s mummy. πŸ˜ŠπŸ’š.

Happy Birthday Baby Boy πŸ’šβ€

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Message to my monkey:

Happy 9th birthday to the most beautiful boy I know. I love you so so much baby. Im so sorry we cant be together properly. Just know that mummy misses her monkey every single moment of every single day….especially today. Today is your day. I love you to the moon and back and I cant wait to be with you again. I hope you come join me today. Everything is set for your Ant Man party just like you wanted. Your cousins will come later and there will be cake, music, some xbox battles and some more of your favourite games. I hope you enjoy your day.Β  Huge huge hugs and a million kisses monkey. I am so very proud of you. See you soon. Love you always, Mum❀

9 years ago Raj made me a mummy.
I never knew I could love someone so deep.
From the very 1st days motherhood came as 2nd nature to me.
We started our journey of love and so many giggles. Raj had that cheeky smile since day one. A hugely infectcious laugh that would make everyone who heard it feel warm and fuzzy inside.

Life was amazingly normal but somewhere along the lines things got complicated.
We had to face into a huge problem that threatened our time together. Over the years we fought…nothing was going to stop Raj living his life. I saw him laugh so much and I sat back and thought…you got this baby boy. His strength and zest for life was amazing to watch. He taught me about strength.

Life and God had other plans and our days were cut short.

Today is a happy happy day but also one where my heart bleeds. I wont get to see Raj’s beaming face. His beautiful smile will be missed today. I am grateful for the beautiful years we spent together. Today I celebrate for Raj. Today I celebrate the day he made me a mummy. A day I will cherish forever. ❀

Forever Sad πŸ’”

I know I wasn’t planning to write any more blog posts for the near future but I am missing Raj so much recently. I wanted to write about him.

It is now December. Raj would have been 9 this month. It’s all I can think about. I would have been planning his birthday well in advance. Buying bits and pieces. Party bags, invites etc. I feel so very fragile at the moment. I am constantly living in this sad world right now. I can laugh and smile but deep inside my soul is so unhappy. I cant escape the hurt. I never will. That hurt is my love for Raj. I cant stop loving Raj. I therefore know I will forver be sad. I will forever be in pain.

I thought I was over the worst of my tears but the last few weeks, I feel like water just flows from my eyes like someone left the tap on. Grief really is so unpredictable.

Last year Raj told me he wanted a party. A certain themed party. On his birthday I will have this party. I wont let him down. Ever. I know he will come visit this day. I want him to come see his mum still honouring his memory and his wishes. I have bought all the decorations and I am excited because I know he will love it. 😁

The past few months have been busy. We took part in the Twilight Walk in Windsor and we reached the Β£50k mark for The Raj Rana Fund. That was a proud moment. My family and friends have been amazing in helping me achieve this. I will still continue with this work. I want a cure. No parent should feel this pain. I often hear from people they know my pain. Through the loss of family. Parents mostly. Honestly unless you have lost a child I dont think people know this pain. Losing a child is wrong on every level. Losing a child is the most heart wrenching thing you could feel. I cant lie. It has made me think, why do I even exist any more. That is a scary thing to think about. Your mind wonders why do I need to be here. All these are natural thoughts for any parent who has lost a child. The healing starts when you accept you must exist. There is no choice on this one. The toughest thing is accepting this is my path in life. Raj took his path. Our paths will cross again. We will reunite again. I know deep within my heart that moment will come.

Facebook is full of happy homes right now. I love happy homes. That’s how life should be. Right now my christmas tree and decorations sit downstairs in a box. Raj helped me every year. He loved Christmas and especially wearing a Christmas jumper. I know I have to put the decorations up. I know Raj would want them up. I know he visits me. I got to do the things he loved.

I watch the videos and pictures back. Raj was so beautiful 😊😊😊. Even when the steroids made him put on so much weight. That gorgeous smile shone through. I am so truly blessed to have had Raj in my life. He is an amazing soul.

23rd December….his birthday. Its going be so so hard. No more sending Raj to bed the night before and getting the decorations up. Watching his face so lit up in the morning as he saw the room. GOSH I love him so much.

I just wanted to write about my baby. Thankyou for reading my thoughts. Maybe I will continue to write for a bit. Sending out love and light to all. ❀

Missing Sunday cuddles πŸ€—

Sundays are always so chilled. It’s the day I chill and just lounge around the house. Binge watching tv. A real family kind of day. Sadly the most important boy in my life cant spend Sundays with me. The Lego Movie is curently playing in the background. Yep, Raj would have been watching this. Giggling away at the funny bits. He had the cutest giggle. Β His laugh and smile was infectcious. Its the thing everyone says about him. He was always smiling.

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So September is Childhood Cancer Awareness month. I was really happy to see my family and friends share lots of my posts and acknowledge the month. There were alot who didnt though.It does confuse me as someone famous dies and people go mad posting RIP etc etc. Such a great actor/ singer but people struggle to share posts about awareness. I know it’s a sad subject but I was once a normal mum. My son didnt have cancer. Young children are dying every day. We need to make a difference now. πŸ˜”

 

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This week has been one of mixed emotions. I have been kept busy with work mostly. I have had some low points during the week too though. I do however feel connected to Raj. I’m not quite sure how to explain that and I’m sure some people may choose not to believe that is still possible. I respect those people still as we all have differing beliefs and I suppose thats what makes all so diverse and interesting. I can feel when Raj is around me. I feel he is here as Im writing this post. Its also very obvious to me when he is not ‘here’. This week I feel like I got 2 really clear messages from Raj. I went to the Gudwara (temple) this week and I was sat thinking about Raj. I got a strange feeling he wanted me to do somethibg for him. It was giving someone a gift. I chose to fulfill that wish. It made me feel good like I had done something my baby wanted.Β  The other strange thing that happned to me was less of a feeling but something I was shown. I went to go run on my treadmill and took a picture (to post as you do πŸ™„). Something appeared in that pic that was not there…..clouds πŸ€”. The picture was taken on Snapchat app and the app has lots of filters but this one did not exist. I tried to re-create it and asked others to check but no one could get any such clouds to appear. Soon as I saw the pic I thought of Raj. It bought me a warm feeling. Like…”I’m ok mum”. 😊 Again some will think i’m stupid whilst others will take it as I did. For me…its a sign.

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I was umming and aaahhhing in my last post about this and I’m pretty sure I will now be doing this. I am going to write a book. I’m not sure what direction it will take so while I take some time to think about the content I will pause on my blog posts. I am excited and ready to let my creative side come through (well I hope it does)! Thank you to all those who have read the blog so far. Once I know what it is the heck I am doing I will let you all know!

Much love as always,

Suki aka Raj’s mum πŸ˜ŠπŸ’ž

 

 

Some storms DO last forever🌩

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I just saw a quote about dont worry, no storm lasts forever, but it truly feels like the storm i’m in will never shift. Yea I can smile and laugh but there is a sadness deep in my soul. It will always be there. Raj was my world. It’s like someone took my best friend away from me.

It’s been a while since I posted a blog update. I have taken some time to contemplate what it is I am doing. When I first started writing this blog, I found myself thinking hmmmm who would actually want to read what i’m thinking! I did however discover, that many people did want to know my thoughts and I have had some lovely comments from people who read my blog who say my writing has helped them in their own often different situations. One of my recent thoughts and suggestions from others has been whether I should write a book. Again I find myself thinking who would want to read my book! Several people have suggested I do this. I have also been seeing 2 counselors following Raj’s death. One is via the NHS and the other is through a charity that help families with life limiting illnesses. The NHS appointments are always at the hospital and the same time weekly. The charity appointments are as and when I need them. At Costa or at my house. I can text my counselor at 11pm and she will reply. She said’Β grief is not 9-5′, which is so true and it’s lovely to have that support. They both have said it feels like I am on the cusp of unlocking something creative and it is coming quite organically. The charity counselor has said she feels I should also look into motivational speaking as she thinks I have a way of speaking which resonates with people and draws you in. All such lovely words but I wouldn’t even know where to start! I wouldn’t even know where to start with writing a book, so I have spent some time thinking should I do this and how?

The last few weeks have felt really rough. I have struggled a lot to keep focused and just try and motivate myself to just ‘do life‘ if i’m honest. I can be ready to walk out of the door, and I suddenly find myself sat there sucked into my phone. Looking at pictures of Raj. Next thing I know, It’s 20 minutes later and I’m now so sad. I do things to try and keep myself busy. I try and go swimming, but even doing that Raj is on my mind. I can go get my nails done and Raj is on my mind. How can I not be thinking about the person who is most important to me in the world all the time?

 

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There are a few things I am doing to fill my time. I have signed up to do the Twilight Charity Walk with The Brain Tumour Charity on the 14th October. If you can spare some cash, please sponsor me!Β https://www.justgiving.com/fundraising/rajvir

I am also involved in a event, where we will receive funds for an afternoon tea event for women affected by cancer, directly or indirectly.

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Finally, I secured a date for a memorial event for Raj in May 2019. It will be held at the Thistle hotel in Heathrow and will be a dinner event for 350 guests. I am really excited to be holding an event that will remember Raj and also raise vital funds. So much more research is needed into brain tumours. Being told there are no more treatments is the most heart wrenching discussion you can have with a doctor. I am welcoming any help with event. Whether it be raffle prizes or help selling tickets, please get in touch! I would appreciate any help I can get. This event will be about Raj though and I cant wait to share how amazing my monkey was with all those who attend.

What is also weighing really hard on me, is the fact it’s Raj’s birthday in December. I would have been ordering bits and pieces for his birthday already. Discussing what theme he wanted for his party. My baby would have been 9 this year. Such a big boy. Gosh, I miss him so bad. I don’t laugh like I used to. ALL I did was laugh with Raj. I miss the person I used to be when Raj was here. I am not the same person.I really do hope, eventually I may get back some of that happiness I felt. I appreciate the people around me so much though. My friends, my family and loved ones. They are so patient with me, show me masses of support and try and keep me smiling. I love them for that!

The only thing I do know is, I do still feel Raj. I feel his connection. He is in my heart. He always will be. My counselor keeps telling me, to give myself some credit. It is still early days and I am doing well. Some days I just don’t know what to feel. Some days it feels like I’m just existing.

I do try and be an optimistic person though…so will sign off with a positive. It’s FRIDAY! 2 days rest from work. Oh and I need a holiday, so may just have to book something over the weekend! Have a beautiful and blessed weekend all. Enjoy time with your loved ones. Thanks for readingΒ  😊❀❀❀

 

 

Months of bliss

April 2013 onwards:

In April 2013 we held our first ever dinner and dance for The Raj Rana Fund. 100% of all funds we raised went towards research with The Brain Tumour Charity. It was an amazing event and we sold over 320 tickets. It was a night full of dancing, food and lots of smiles. It was a great way to mark the end of Raj’s treatment.

Following Raj’s chemo we started to return to normal. Raj was doing amazingly well. It was as if nothing had even happened. It could all of been a bad nightmare.

While we had been away in hospital my mum and dad had been back and forth to my house. Taking care of things. When we came out of hospital dad said “your house is too small”! He told us he was investing Β£50k into my house to extend it! Straight into the deep end. We started a building project. Raj and I were spending most days living with mum and dad as the project went on. When it was done though, my lil man loved his new house! There was lots of space to run around in and make a mess in now!

Things were fab. Raj turned 4 and he went into reception at school. I hear all these stories about how hard it was to leave your child at school. How their kids cried so much. Not Raj. I took him in and Im pretty sure he didnt even notice where I was. He walked off and started playing. I dont even remember him acknowledging me as I said bye and left 🀣. It was a very proud moment. I know other parents whose children didnt get this precious moment. People take these small things for granted. You hear parents moan about the school run etc. Honestly, there are parents out there that long for these things. Never ever take them for granted.

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Raj was a majorly happy child. He just enjoyed laughing and giggling. His giggle was infectcious. Raj was loving school. He made new friends so easily. Raj’s cousins used to attend the same school. It was so easy, me or Raj’s grandad would grab 4 of the boys together. Life was just as it should of been. I was working away as normal. Raj was at school.

We were having scans every 4 months. All coming back as clean. No tumour 😊😊😊😊. It was an amazing time in our lives. Raj’s dad and I were still together at this point also. It was so normal.

 

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My lil man was a cheeky cheeky lil monkey. Scans continued….then I got the worst call in July 2014. “We can see something on the scan” πŸ˜”

Faith πŸ™

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I am a Sikh. I believe in One God. I get told often, keep faith. The truth is I always have. I know many people talk about losing faith. They often say how can God exist because if there was a God, why would a child like Raj die? Why do I believe in God? Throughout this entire journey I have always felt protected. Raj went through a shedload of treatment but it never affected him. I literally felt like there was a shield around us. Throw what you like at us. We were protected. God protected us. On this earth, I almost felt like Raj was my guardian angel. I remember Raj was 3 years old and he saw someone push me once. I remember he kicked this person for hurting me. He was 3! That was the point I thought wow maybe he was sent to protect me.

Im going to write a bit about the day Raj died, so please stop reading if you dont want to know more. I understand some may not want to hear about death. Me? I think it’s important to discuss. To understand what can be improved and also to understand and make sense of it in some way.

3 nights prior to passing: Raj was mostly ok but he started experiencing a bit of a back ache. During the night he struggled to sleep. He said to me, “mum my throat really hurts when I swallow”. Then he started shivering loads. He felt really cold. I remember hugging him so close, rubbing his arms trying to warm him up. I was thinking, he is getting a cold. He is going to end up with a temperature. It was an uncomfortable night for both of us. I ended up giving Raj a little morphine as his back was really aching. In the morning I woke up but Raj managed to get a few hours sleep in. I rang the hopsital and said, I think Raj is getting a cold. Can I just take him to the GP instead of going into the local hospital to check him over. A trip into the hospital would have meant around 3 hours of wating around etc! The GP was great. Dr Sadrah, said come in the next 20 mins I will see you asap. We went into the surgery. Dr Sadrah checked Raj over. He said throat all clear, ears clear etc. He probably is starting to get a viral bug. Raj told him his back ached. Dr Sadrah, said continue with morphine for pain. He joked with Raj. “Raj, im old I get aches and pains too!” When we left the surgery Raj laughed and said “mum he was a funny doctor”.

2 nights prior to passing: The night was really really uncomfortable. I was massaging Raj’s back. He was hurting. We used to sleep together on a double sofa bed downstairs by the end. During the night we moved from bed to sofa, sofa to bed. I was absolutely shattered. I topped Raj’s morphine up. That made him sleep. I however I was sat up at 3am in my kitchen crying my eyes out that night. I was absolutely shattered. I was sad Raj was going through this. This was the one and only time. I told him (even though he was asleep). “It’s ok to let go Raj” πŸ’”

In the morning I phoned Raj’s nurse. I said Raj is in pain. I think he has pulled a muscle in his back. After speaking to Raj’s consultant, they asked me to go into the hospital so they could check him over. I rang Raj’s dad and said Im going hospital with Raj if you want to come. He met us at the hospital and at 3pm the day before Raj passed, Raj saw his local team for the last time. The doctor checked him over. Raj was extremely sleepy from the morphine. The doc agreed Raj, had pulled a muscle in his back. She said keep the morphine regular. Other than that, we went home. Raj said his pain had gone from a 10 (high) to a 5. The morphine was working.

That evening I had been invited to an event for The Brain Tumour Charity. It was an awards dinner to thank fundraisers and researchers. I wasnt sure If I should go. Raj wasnt too well, but after he said his pain was subsiding and the doctor saying it was just a pulled muscle I felt comfortable going. I actually thought maybe I will hear of something new that may help Raj. I knew there was going to be researchers and doctors there. I was always looking for a solution. I never stopped looking for Raj. Only weeks before I had contacted Duke Childrens Hospital in the US. They told me sorry, there is no cure for a high grade glioma. I also contacted a centre in Turkey. They used thermo-chemo options. I knew there had been some success with their techniques. They told me sorry, we only treat adults. I never stopped trying. I also needed a few hours solid sleep. I couldnt do 3 nights without sleep.

That night I went to the ceremony in London and Raj’s dad took him to his and grandma’s house. Around 8.30pm Raj’s dad rang me. He said “Raj said he is in pain. It’s too much. When I say that to mum she knows what to do. Ask mum. ” I asked his dad what meds he had had and told him what to top him up with. Now I was sat there worrying. I text his dad 40 mins later. I heard back a short while later. He said he is going sleep now. Still a little worried, I text his grandma (he slept with his grandma when at dads). At 11.10pm she text saying he is fine. He is asleep. Then I relaxed. Raj is ok.

20th April 2018

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The plan was to pick Raj up at 9am as his grandma had work. In the morning I rang his grandma. She told me she was staying off work so I didnt need to get Raj straight away. I said to her I need to come get some urine off Raj though. I had a nurse coming at 10am to take a sample (they just wanted to make sure there was no infections following the hospital visit). Then I heard Raj. “Mum, I want to come home”. I said “Im coming to get you baby”.

Soon as I arrived and saw Raj, I knew Raj was dying. His grandma said he has a rattle in his chest. It started a little while ago. That rattle is known as the death rattle. I exptected we had 1-2 days left. I took the urine sample and went to the bathroom to compose myself. Raj’s dad looked at me and said is he ok? I said “No Aman, nothing is ok” with tears streaming down my face. I knew this was it. I thought, I will take Raj home, speak to the nurse and then tell Raj’s dad come over. Raj was struggling. He couldnt walk. We had to get the wheelchair to take him to the car. I strapped him in and we started the 10 minute journey home. His grandma also came with us in the car. Raj kept asking, “mum are we home yet?”. I think he asked 3 times.

When we got home I forgot Raj couldnt walk. I opened the door, and he got out and started walking in himself. I stabalised him to the door. We walked in. Raj got straight into bed. I said shall I turn you on your side baby. He said “yes”. I then saw Danni ( the nurse) pull up. I said to Rajs grandma. One second. I ran out and said “Danni Raj is not right”. In the 2 seconds I was outside Raj asked his grandma for Oso (his fave bear). She handed it to him.

Danni came in quickly. She looked at Raj and said “Raj are you ok?” Raj started to gasp. He said “my back, my back”. Danni said “Suki hug him right now, right now”. I jumped on the bed and hugged Raj so tight. I told him over and over I loved him. 30 seconds later my beautiful baby boy stopped breathing.Β  πŸ’”πŸ’”πŸ’”πŸ’”

His grandma hugged me as I hugged him. It took seconds. Just seconds and he was gone. My baby was gone. Grandma rang dad and my mum and dad and told them to come straight over.

My baby came home to me. At home in his favourite place. In his bed, safe with mum and Oso. With his grandma and a nurse there. I know Raj would have felt so so safe. You have this great notion, that your final goodbye would be so peaceful. The truth is if I had had that chance, it would have meant Raj had died slowly. Shutting down. Non responsive almost. I didnt want that for Raj. I didnt want to watch him not eating , not drinking, just sleeping, and on pain pumps. 4 days earlier we had gone out to see Dinasours In The Wild In London. We enjoyed every moment we could.

The doctors and nurses said they have never had a child die like Raj. His head nurse said in 40 years, 1st time she has seen this. She couldnt believe Raj had walked in minutes before dying. He was hardly on any pain meds. Usually, they have to administer a pain pump. Which is constant. Dr Sadrah the doctor we saw 2 days earlier came over to pronounce Raj officially. He looked at me and said you never know. He didnt see this coming as didnt Raj’s consultant and nurses the day before. He said, when I saw Raj I was pleased he was so so well. He had told the surgery staff, Raj was amazing well despite all the treatment he had.

That was my boy. He was a soldier and I am extremely proud of him and grateful. Grateful he came home to me. Grief can destroy you. I have sat and thought I should have kept Raj home that last night. The truth is though, I would have been so tired I wouldnt have been able to care for Raj. I would have been angry. Angry at the situation and I would have been short with Raj.Β  I would have then felt so so guilty that I wasnt at my best with Raj. His consultant also made me see something. Grandma later informed me Raj had been hallucinating during the night. Had Raj been with me, I would have rang the hospital. They would have asked me to take him in. The likelyhood is Raj would then have died in hospital. I didnt want that. Those last moments were so traumatic though. I have watched it happen over and over in my head again. Watching him gasp and just pleading with him in my head, “just breathe baby breathe. Take my breath but just breathe”.

Raj held on, he came home to me. I love him so so much for that. Not only was he my son. He was like my little best friend. We had the funniest reltionship. So much fun. This is as sad as it will get. I wanted to share this as it helps me to write about it. Get it out, but also I hope it gives others hope and faith. Raj was protected until the end. He didnt suffer the way he could of. God made his journey smooth and Raj is now safe. Thankyou for choosing me to be your mummy Raj. β€πŸ’š

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I have visions of him laughing and running around crazy. Being so so cheeky! My posts from now on I am going to try and show you what a funny guy my lil man was, because thats why all of this was worth it. Raj lived a good good life. I want to share how happy he was. Next post…I will show you my crazy child more! ❀

p.s That urine sample I took that morning, I couldn’t come to throw it away. I mentioned this to someone I know. She looked at me and said “omg, that’s his piss though”. That’s a typical response from someone who doesn’t get it. It was from my son. I couldnt get rid of it. I told Raj’s nurse could she take it. It will feel like I done what I was meant to with it. She told me Suki, It will sit on my desk as I dont want to throw it away too! She suggested I put it in a plant pot and grow something. That’s exactly what I did. This plant pot has been lovely named Raj’s piss plant by his cousins 😊🀣❀.

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Work? πŸ€”

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It’s hard to believe this now, but I honestly thought I would be OK when Raj died. After all, I had known for months that his condition was terminal. Unlike some parents, I had been given time to prepare for this loss. I convinced myself I could deal with it.

I knew I would have no regrets about the way Raj had lived his short life, or doubts about whether I had tried everything possible to save him.

In the days and weeks after he died, I was kept busy. We had prayers at home followed by Raj’s funeral. I carried on. I made plans to raise more money for The Brain Tumour Charity through The Raj Rana Fund, which we set up after Raj was diagnosed.

And then it happened. About three weeks after Raj’s funeral, I felt my heart explode. Smashed into a million pieces. It was a physical sensation as much as an emotional one.

I struggled to comprehend how I could be feeling so terrible. I kept thinking:Β β€˜Come on Suk….you spent so much time with Raj. You made the most of everything. You tried everything you could. You knew this was going to happen.’

It was then I realised what grief really is. It can’t be controlled or planned. You can’t rush it. The realisation hit me. Grief could be a forever thing.

My manager had attended Raj’s funeral and I’d said to her there:Β β€˜I’m coming back soon!’

She told me:Β β€˜Whenever you are ready, Suki.’

Β 

I realise now that rushing back to work would have been the worst decision. This is the hardest and most important time of my life. I need to heal and my mental health at this time is so important. I’m so grateful I had the opportunity to take time off with pay. I didn’t need to worry about finances. Bills will always have to be paid but at a time like this, it’s the last thing you need on your mind.

My employer, Mars, had been hugely compassionate through Raj’s treatment. There was flexibility around appointments and a mutual understanding of what was required from me and them but I know that others have very different experiences.

I’m part of a forum on Facebook for bereaved parents of children who died from cancer and when I discussed with them the issue of going back to work, I was shocked by what I learned. Some were sacked as they took time off to care for their children. Others had to rush back to work as they were not paid.

One mum said she worked in GP practice and didn’t even get the three days of compassionate leave she had requested following her child’s death. Others, like me, had support and agreed it was needed most at this time.

Losing your child is just wrong. I realise I will need to be kind to myself and work through this slowly and so I had my first counselling session this week via the NHS, after six weeks on the waiting list. I’m not sure what direction counselling will take but for now I will continue with the sessions.

This week, Parliament is discussing plans to give parents the legal right to two weeks’ paid leave following a child’s death. I can’t stress enough how important this Bill is and how much I hope it becomes law. We need to support anyone in this position.

Two weeks is not a long time at all to grieve. To be protected financially is just somethingΒ that would allow you to have peace of mind in the darkest of days.

Rushing back to work is not good for anyone. I know of parents who went back too quickly and then had to take time off months later. I’m now back at work on reduced hours. My days and workload are guided by me. That’s the kind of support parents like me need. In return, I will give my job 150% effort.

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None of us in this β€˜club’ wants to be a part of it. To help protect us financially is just a little weight off our shoulders, from the huge mountain-like burden we already carry.

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