My mummy My World

Today I cried with my mum. Inside my soul, I feel my mum is connected to me, and therefore also connected to Raj.She came over and we sat down. I feel so drained and she did what she always does when I am feeling unwell. She massaged some oil into my head. We spoke about Raj and she said I never stop thinking about him either. Today I woke up and thought I saw a little boy standing at the door. I think we both believe he is close and he will come back to me eventually or I to him. She said I know you are always thinking. She is right. I work on the road in a sales job and I cry every other day while driving. Long journeys give you nothing but time to think about the people you love or your problems. Mentally Im exhausted, and trying real hard to stay afloat. I have been going and going since last year and even my counsellor is keeping a close eye on me. As things slow down, will I fall? Truth is I am strong and I will do my best to continue to make Raj proud of me but it is a massive struggle everyday.

Today I feel robbed. I have spent some time thinking about the years with Raj. A week or so ago I spent my birthday again without Raj. It made me so so sad because although Raj was here 2 years ago on my birthday, the last time I spent my birthday with him was in 2016. In 2017 Raj was at his dads house and meant to come home at 12pm but he got taken out by his dad. I kept ringing and my calls were ignored. I was told by his grandma at the time why was I so annoyed, Raj would come home eventually. Eventually came at 9pm. Raj used to go to sleep at 8pm so soon as he got home I had to put him to bed. My last birthday with my son was stolen from me 😞. I found myself thinking do I share this? I have always hid the abuse….should I start sharing now? The truth is I get so many messeages from people I do not know who say, thankyou for sharing your story. You have helped me and I feel so close to you even though I do not know you. If I can help even one person with my truth, It’s worth sharing.

Truth? I want my old life back with Raj. I want Raj back. Waking up to hearing “morning mum”. I would do anything in the world for that. I talk to Raj constantly, I just want to hear his voice talk back Baby boy, I love you so so much, with every ounce of my being.

Change is often hard to deal with. Change following a death where it feels like you must somehow let go of the person you love is gut wrenching. Raj’s medicine cabinet is still as it was 425 days ago. The last day he took a breath. I can’t come to move these things. I dont know if what I am doing is ‘right’ but I like seeing his name on his bottles. Looking at the long syringe we used to give him his keppra (anti- seizure meds) with. I cant even come to spill the bottles yet. Today mum used the oil I used to use with Raj. The last time I used that bottle I was sat in front of Raj. Massaging his legs with that oil. He used to love his pamper time with mum. I remember saying to him, “mum takes good care of you dont she monkey?” He was like “yeah!”

Not a single day goes by where I dont wake up without Raj on my mind. I welcome the pain some days, as It makes it all real. Watching the videos and photos, takes me back to happy and sad days but it makes me feel alive and a reminder HE DID EXIST. I want people to share Raj’s pictures with me. Talk about him with me. I crave talking about my baby boy. Today my soul is tired and I’m sat here with my other half. These are the days he props me up. Im grateful for the people who love and support me. Today I am tired but tomorrow is a new day and Raj’s mummy does not stay down for long. My boy taught me that’s not the way πŸ’š.

Rajvir Singh Rana

For those who don’t know who I am, my name is Manisha and I’m Raj’s cousin. My guest blog entry came about after a particularly tough counselling session and crying to my aunty (Raj’s mum) straight after it.

I’ve spent the last year concentrating on everything else in my life and avoiding dealing with Raj’s death which I can confidently say was absolutely not the smartest idea I’ve had in a long while. I’m going to be honest, I don’t know what to write. When my aunty suggested I write a post on this blog, I jumped at the chance because all I want to do is talk about Raj but here I am, and I don’t know what to say.

I suppose I’ll start with my earliest memory of Raj and the moment I fell in love with him. Raj was only a couple of weeks old when I, aged 17, first met him. We were at our grandparents’ house and he was bundled up in a white knitted blanket with the cutest matching hat, I remember his little face and button nose clear as day. The first time I held him, I walked over to a row of photographs and told Raj who was who in each photo and stopped to look down at him. In that moment, I thought my heart was going to explode into a million pieces with the love I felt for this baby who I’d only just met. I didn’t think it was possible to love someone unconditionally the way I did with Raj.

Whether it was watching Disney Channel (read: Special Agent Oso) or Oscar’s Oasis or simply playing with his huge collection of toys, I cherished the time I spent with Raj.

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We found out about Raj’s cancer a day before my 20th birthday and in that moment, at around 10:30am on a beautiful summer’s day, our lives were turned upside down. I cried like a baby. The next 6 years feel so surreal. The highs of when his results came back with news we wanted to hear versus pulling the plug on immunotherapy as he had not responded to it as well as we had hoped. To say it was a rollercoaster seems like an understatement of the century.

I remember the day Raj passed away like it was yesterday. It was a Friday and the hottest day that week. Driving into work it was around 20c and I was due to attend a customer meeting in London that afternoon. I was on the phone prepping for my meeting, when my boss came over, grabbed the phone off me and told me I needed to get home right away. I knew Raj hadn’t been well and driving home, I didn’t once think that he would have left me already. Raj lived opposite me. I pulled up and ran to his house and despite seeing him in his bed with my aunty hugging him the tightest I have ever seen; the penny still didn’t drop. Or maybe it did, and I was in denial. Those next 2 weeks were awful. I hated it. It was like everyone was on auto pilot; making sure the funeral plans were sorted, ensuring people who were paying their respects knew whose house to go to, checking in on one another and simply trying to get through each day.

My aunty asked me to speak at Raj’s funeral on her behalf and I felt so honoured. She trusted me to do him, and her, justice. I did it. I practiced so much to make sure I got it right and I didn’t cry. I wanted everyone to hear what my aunty had to say about Raj. He was awesome.

I miss Raj every day. I think of him all the time. In the times where I’m laughing and joking with people there is a little voice at the back of mind reminding me of what I have lost. I miss his giggly laugh, it was so infectious. I miss hearing him call me Meeshi. I miss his smell. His touch. His hugs. His warmth. His smile. His anger. His impatience. His correcting me when I got the names of dinosaurs wrong. My heart physically hurts. It’s a pain I cannot and do not know how to describe.

I’ve named this entry with Raj’s full name. He was so proud of it and loved it when people asked him what his name was.

I will love you forever and always.

Meeshi x

I miss him πŸ˜ž

What a high this weekend was. We hosted a glamorous event for over 200 people in Raj’s memory. We managed to raise Β£5k for the Brain Tumour Charity! I’m proud and hopeful as all the money raised will go into research for high grade tumours like Raj had. The night included amazing food and lots of entertainment. We had a generous and fun crowd and I was really proud to tell people about my beautiful boy. The run up to the event was tough but I had lots of help for which I am so grateful for. I really loved seeing Raj’s consultant and his nurses who also attended the event. They are so amazing and I have so much love for them. Raj loved his nurses too. Remembering how he used to joke around with them makes me smile.

The last day though has now been a bit low. I have such a horrible feeling inside me. The event kept me busy…so busy. In the run up I faced the first anniversary of his passing and his funeral which were so tough but I knew I had to keep focused on his event. Now I have no event or no firsts coming up. I will continue to fundraise through the charity but I have nothing left to work towards which is all about Raj and that breaks my heart πŸ’”. It’s like I now have to live my life. That’s it. Yes he is with me. In my heart always but I am forced to face the reality again that I have to live on with out him for the rest of my life. I would love everyday to be all about him but I know that cant be. 😞 I really really miss him.

I really do have some amazing support and my bereavment counsellor even attended the event. We discussed how there may be a low after all the busy period settles so I was aware this may happen. Its still not easy to prepare yourself for these things though. Even though you know they may come the ‘lows’ hit you so hard.

I cant express how proud of Raj I am. He touched so many people in his short life. His teacher is getting married this summer and instead of wedding favours will be making a donation to us and sharing pics and Rajs story with their guests. This makes me so proud and happy that so many people continue to love and remember him. I am so grateful.

It’s really sad that life does go on though. No matter how hard I will it to stop or take me back to happier days with my baby. Tomorrow although it brings me happy thoughts of new times with my family and those I love, is also a sad place for me to have to be without Raj.

Mummy misses you monkey. x 😞

One year on. I have survived.

I dont quite know how but I have survived.
I have survived the hours and hours of tears.
I have survived the days where I struggle to put my phone away, because all I want to do is look at your face.
I have survived the days where I cling to your clothes, your socks and your teddies just trying to smell you once again.
I have survived the the emptyness and the silence that living without you brings.
I have survived the days where no one speaks your name.
I have survived the days where my heart doesnt want to beat no more.
I have survived….and I will continue to. You showed me how precious life is. How precious love is.
I will survive beause you show me the way.
You speak to my heart.
I am so proud of you Raj. You are a soldier and as brave as they come.
I survive because I am YOUR mum. I survive because you are teaching me how. πŸ’šπŸ’š

Countdown

I am sat in Raj’s room as I write this. I look around and there are so many happy memories in this room.

Raj’s little Bob the Builder Hat made me smile. He dressed up as Bob the Builder in school once. Armed with his tools, hard hat, checked shirt and a pair of dungarees from our trip to Oklahoma. He looked so cute 😊.

I come into Raj’s room often. I have a picture of of his face up on the wall and I kiss that picture good morning and goodnight every day. I still leave his dinasour lamp on at night also. It’s hard to let these things go. One thing that always strikes me. The room stays tidy. No one comes to play with all his toys and teddys. Anyone who knew my boy knew when it came to toys he was messy! I hate it being so tidy. I hate it.

Next month it will be one year since Raj passed away in my arms. A year since I last heard him call me mum. A year since I last felt his warm face aginst mine and I really really dont want it to be a year. Time keeps passing by. So quickly too. I really am not sure how I have managed to survive all this time without Raj.

The countdown to that final day has begun in my head and It all feels so fresh again.

I find myself asking again. How did it all go so wrong? Raj always did so well. Emotionally its tough…..really really tough. I am a happy soul. Laughing is what I enjoyed most with Raj. I struggle with sadness because it goes against the grain of who I am. I want to be happy. I know there is lots to be grateful for in life. The amazing 8 years I had Raj being the most important gift to me.

At the moment, it just feels like I have a huge mountain to climb towards ‘that’ day.

I just miss him. I miss my baby boy πŸ’šπŸ˜ž

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