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Mummy and Raj

Life after losing my superhero

“The Book”

I keep getting asked. When is the next blog post? When will your book come out? I thought you was writing a book? Hmmmmmmm…….(big sigh)

I have been wanting to write this book about my experience and most importantly about the amazing and couragious boy Raj was. What’s holding me back? (Big sigh….again) To tell you all the truth. The real truth of what life was like and the real struggle I faced will mean delving into the details of my past life. A life I have physically left behind. Sharing the true details of how tough life was means, writing some things that will shock alot of you and will also shed light on some things people may not want shared or known to others. Am I ready for any backlash it may bring basically is the real question? Maybe……Time will tell.

Oh and Hello December πŸ™‚

Hello to the the month in which my amazing baby boy was born. If my monkey was still with us, he would have turned 10 this month. 10! Wow. I keep thinking, how tall would he have been?! The first birthday without Raj was huge. The build up was absolutely huge and the worst. This year, of course Im broken but It would have been such a happy and big milestone for him. I find myself smiling and thinking how can I make it special for him. I asked my lovely family and friends to donate a gift in Raj’s memory this year. I think I received around 40-50 gifts!!!! Wow. They are all so bloody amazing. What makes it so special is these gifts will go to sick children in John Radcliffe hospital. I remember Raj’s face when he received gifts on the wards. That huge smile! Those who have donated, thankyou so much. You done something really special for these children. You will bring a smile to their faces on the hardest of days.πŸ₯°

Its a big big month. A big big one. I will be spending it with my family, my amazing husband and my dearest friends. I just decorated my tree and put up Raj’s bauble. I also found his Transformer tree decorations and added them. It wasnt a tough thing to do this year. Well not as much as last year. I cant describe the feeling. There are moments in life where some days life seems full. I feel content. I feel like it all fits. Those moments…I find myself thinking. Raj is around. For me to feel like that. He is around. Its a warmth I feel. I find myself smiling and just saying it out loud. “Raj, I love you.” At that moment something in my heart tells me he can hear it. Decorations were out and I had Youtube on shuffle on his Xbox as I put the tree up. The 2nd song to come on was All The Way Up (Oh just his fave tune 😊). I knew he would join me. 😊

I love the month of December. Raj loved December. I find myself being able to unwind and reflect. My thoughts? Life is so very very short, so please make the most of the ‘time’ we have off to enjoy our families. Take a tonne of pictures and videos too! Oh and share them. I love seeing pictures 😊

Still thinking about this book. I get told so often….you are so strong Suki. I once wasnt. I really really wasnt. I would like to give others hope and the courage to face their own challenges. We all have them in life

Right. I think I have made my mind up πŸ’₯.

Time to put pen to paper. Any suggestions for a title?!

Love to everyone who supports me. Truly grateful guys. Stay blessed ❀

How Am I supposed to do this? πŸ’”

The first year after Raj’s passing life was filled with so much. First birthday without him, first Diwali alone, all the firsts. The build up to these days was absolutely huge. The actual days seemed to pass by uneventful. I’m there again….the huge build up to his birthday next month. My lil man would be turning 10! Wow. 😊 I sit here and imagine how tall he would have been. He was always tall. Years ahead even in clothing sizes. He used to stand against me and we would say lets see how tall you are. We laughed, he would be tall as mum so soon. I am already thinking about how I will spend this day. I have already told Raj’s cousin Remi, we will celebrate with a cake and playing Raj’s favourite games like last year. I have already bought him his birthday pressie…just like I would have done if he was here. 23rd December, the day I learned what love truly was.

Year 2 is a huge struggle. Seems harder than the first year. Its the constant reminder, he genuinely died. It’s not a bad dream…it actually happened. Its been soooo long since I saw him, yet it feels like yesterday at the same time. My world stopped moving for me and I’m still there at times. Wanting to make him his toast and tea. Wanting to get his school bag ready. Wanting to cuddle up on the sofa with a blanket. Walking through the shops still remains a massive trigger. Seeing all the marvel clothes I would have bought for him. Last week I walked through the toy aisle in Asda with hubby and it bought back a memory of Raj. Raj used to say as we walked through this aisle….”mum just wait, just wait. Just wait a minute.” I knew he was obviously scouring the shelves to look for what toy he was going to ask to buy, but it always started with that…halting me and “mum just wait” 😊. That was a happy memory.

Year 2 feels horrendous. I find it harder to shake the bad days off. Often resulting in physical manifestations of grief creeping up. I felt completely floored last week. What started with a tonne of anxiety, feeling sick and feeling like I couldnt breathe resulted in me lacking energy, drive and even wanting to not talk to people. My body showed me it was fighting, but I ended up being run down and ill. I don’t want to stay in that sad place of solitude and this year I find myself searching for new ways of understanding and ways to cope.One of the things thats truly has interested me is moonology and how it can play a role in behaviour, moods and outlook. It’s something that has come to me via my manager and its been massively eye opening to look at correlations between life and moon phases!

Honestly, I find myself wondering how much can your heart truly take. Raj gets bought up less and less in conversations now…and that breaks my heart as he is all I can think about alot of the time. I have some amazingly special friends who allow me to talk about Raj often and that truly feels like the most special gift anyone can give me. Some days I sit and wonder how the hell am I meant to get through this life without him. I dont understand how I am meant to just go on but then it just happens. Another day goes by. Another day without him. Then I sit back and change my mindset. Its another day closer to being with him again. That is the only thing I can hold onto. I will see you again one day Raj. Mummy will….I promise you from the bottom of my heart. We just got to be patient baby boy. What a roller coaster of emotions!

Year 2, bloody fucking hard I tell you.

Suki. x

Show your love and support and GO GOLD πŸ’›πŸ’›πŸ’›

I don’t write consistently in terms of frequency. I just write as and when my soul feels the needs to spill what is going on inside. I am writing this post sat by the Amstel River in Amsterdam with coffee in hand. I was taking a moment to reflect and just think about life. Raj……everyday his face lights up my life. Nothing can make me smile more than thinking about the fun and jokey relationship we had. Then at end of these moments, the deep sinking feeling kicks in. Warm moments of love, coupled with complete dread and pain. That is what I have grown to accept. Sadly, that is my reality.

What I love this morning is my timeline on facebook being flooded by Go Gold pictures. September is childhood cancer awareness month and the theme is to Go Gold. Gold ribbons are attributed to childhood cancer. You may think why do we need to raise awareness of childhood cancer? We know it exists, right?

Here is why, 1 in 5 children going through cancer treatment wont make it through 5 years. Raj did. He is seen as a successful cancer patient….but he still died. He made it to 6 years post diagnosis. I am grateful but it’s still not good enough.

12 children a day are diagnosed with cancer. These 12 children are going to be treated with drugs that were made for adults! Their small bodies will have to endure the side effects that are difficult even for grown people to handle. In the last 30-40 years only 3 drugs have been developed to be used specifically on children.

You may see so many campaigns out there. Cancer research use children in approximately 40% or their campaigns yet put only 2% of funds into childhood cancer research. I have had my fund set up for Raj for a number of years now. Raj’s fund now only goes into research for childhood brain tumours. Be aware of where your money goes.

I know statistics are sometimes just numbers…but if you look around you will notice the reality. Before Raj was diagnosed one of my friends nephews died of a brain tumour. He was 5. He collapsed and following emergency surgery he never woke up again. Crazily, Raj’s surgeon was the same man who did his surgery. Another friends niece died of a brain tumour also before Raj. I knew childhood cancer before I was in the midst of it myself.

Raj’s battle with this is over. I can choose to move away from this world….but I will not. I will always be an oncology mum. I will always know the pain of being told your child has cancer. I will always know the dread of holding your child down so they can be pricked with needles. I will always know the fear of allowing doctors to pump toxic drugs into your child. I will always know how your soul feels like it is being suffocated when you get told your child is going to die. I will always know what it felt like to hear my son gasp for his last breaths. I also know for the mum and dad of the 12 children who will hear today their child has cancer, I will be by their side. I will continue to fight for you and your children.

I am choosing to be a voice for children with cancer. For those here and those who we shall meet again someday. Please help show your support. Change your pics…share our posts and be a voice with me. πŸ’›

P.S Mummy loves you monkey β˜ΊοΈπŸ’š

“I’m happy to see you moving on with your life Suki”.

Last month was full of emotions. Last month I got married to my best friend. The man who was there for me when Raj was at his most vulnerable. Who took care of us both. Who helped me make some beautiful memories with Raj.

A couple of months ago I shared that someone I had met at a business meeting also had lost a child. I wasnt ready to share this at the time but the lady who I met was the registrar when I went to give my notice for marriage. No matter how much I love Raj and he knows his mummy misses him, there is always that guilty feeling. Like is it ok to try and be on some level happy? I wasnt planning a big wedding and I wasnt even planning some of the traditional things we do in Sikh weddings. I just wanted to marry the person who made me feel like life was worth living even after all this pain. Basically, when we went to give notice of our marriage the registrar commented that the then fiance seemed really nice (he was out of the room at the time). I told her he was amazing and had helped me through the hardest time of my life. I told her about Raj’s passing and she asked to know more about Raj. She then said, “let me tell you something about myself. I also lost a child. She was 5 and had cancer too. That was 30 years ago”.She went on to explain that she felt our loved ones wanted us to be happy and they will be there one day when we also move on from this world. She aslo printed and left me with a beautiful poem about God and angels. I was a bit overwhemled and it wasnt until I got home that day I thought how crazy to meet someone who knew my exact pain who had resassured me it’s ok to be happy. I felt like it was a sign from Raj to say “be happy mum. I will be here when you get here”. I reached out to the registry office and requested the email of this lovely lady. We have since exchanged numbers and talked. She was also kind enough to attend my charity event I held for Raj. That is something I do love about life. Those soul connections we can make with complete strangers ❀

People have been so kind to me and allow me so much time to talk anout Raj. I know people mean well and I had a few say they were happy I was ‘moving on’ with my life. The truth is I can never move on though and I dont particularly want to. Why would I want to leave ‘behind’ my favourite boy in the whole wide world? For a bereaved parent we lose our child, every day. Several times a day sometimes. It is so easy to be transported back to the time our children were physically here. A few days ago, I suddenly had flashbacks to the moment Raj died. I was sent back to that very moment and then I was overcome with grief. Grief presents itself in so many ways. Somedays grief means I lose my appetite. Other days, its fatigue. Some days it’s a little more scary and I feel like I cant breathe. So there is no moving on. This is a forever thing.

What I can do is carry Raj with me through the new chapters of my life. I started this by making sure he accompanied me at my wedding. I had a beautiful picture of Raj attached to my bouquet. My wedding was a small affair and my nearest and dearest helped me celebrate a really special moment in my life.

I am definetly having a bit of a ‘Raj’ day today. I have spent some time looking at all my pictures of Raj. Damn, he was such a cute baby 😍☺️😁.

I really appreciate all the love and well wishes following my wedding. I am just trying to survive and enjoy life with those I love until it’s time to see my lil man again β˜ΊοΈβ€πŸ’š

Oooooh before I go. I wanted to share how Vikram proposed to me! I wont share all the details, but he took me to Raj’s resting place by the River Thames and said shall we ask Raj if I am allowed to marry his mummy? He knows exactly how to make my heart melt πŸ’šπŸ’šπŸ’šπŸ’šπŸ’šβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈ.

Love to all. xx

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.

IMG_218414127234840

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.

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