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. 💗💚😊.
In the evening we weren’t given a choice. We were having TGIs for the 50 millionth time 🙄. 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. 💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔
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. 💔
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. 💚💚💚💚
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. 😊