Rainbows, Recovery Steps and Reflection

Today is a rather emotional day for me, because it would have been my Dad’s 70^th and he wasn’t around in my growing up years, but we got to see him every month or so. However, in adult years, more often and in the last six or so, he enjoyed a really lovely relationship with all three of his grandchildren and they adored him.

So, I was already feeling a tad wobbly this morning and when I wandered round to the Parent’s Room, I joked under my breath, asking him to send us a rainbow today, just as my sister and I had seen on the day he’d passed last year. It was a bright and sunny morning and I had a good feeling.

Ben has been managing tiny amounts of food in the day, but mainly rolls and has already stated to the staff that he will not be eating any of the hospital food, despite it being made fresh here on the BMT Ward! I had mentioned this yesterday to Doctors and Nurses, feeling that Ben may take a while to progress, if he’s just nibbling rolls and apples every so often.

Auntie Kirstie visited this afternoon and Ben enjoyed chatting to her about Marvel and film theories. Our Consultant popped in while I was still up at the house sorting the laundry and said she was so impressed with how Ben was looking today, that she would see if there was a gap in his medication long enough for him to get off the Ward!

Before we knew it, at 4.00 pm this afternoon, we were in a cab up to the house and he ate a proper meal! I literally couldn’t believe it! He has to be really careful, as he has been nil by mouth for a fortnight and not eaten properly since mid way through October. He surprised and delighted my sister and I and managed some pasta, rocket, cheese and dough balls with some water to wash it all down.

We enjoyed a good hour of Harry Potter, before having to head back to the Ward for 6.00 pm for more medication, but I feel so immensely proud of Benny for trying so hard today to make positive steps forward. He’s beyond exhausted now and has barely walked thirty metres.

It is so hard to describe the milestones like this after almost six months living in hospital. I feel like I’m able to be mum again to my boy and my girls – and my goodness, they have been waiting such a long time without mummy around so much and it’s because I see a flicker of light at the end of the very long tunnel we have been strolling down and live in hope for the day we are told we can actually go home home.

It may not feel like a big thing to those who haven’t been in this position, but to see him eating is such a massive step forward in his treatment and such a relief. Having a transplant for a person is a milestone; it’s part of the journey, not the end. Ben will be on medication for the rest of his life and there will always be certain restrictions and worries for him, but we are remaining positive for a full recovery and all the blessings that will bring.

The incredible children we have been so fortunate to meet during this journey have continued to motivate and astound us with their inner strength and determination to succeed. We have been right at the edge of life and to even begin to reflect on that experience as a mum, as a family, is hard to put into words.

For now, I am living in gratitude; for my children, my husband, my sister, my wider family and friends – new and older friends and the incredible staff of the NHS who continue to support us through this experience.

And whatever your beliefs, I happen to believe in signs and there have been plenty through this extraordinary experience and so to my Dad up there in the blue sky, Happy Birthday. Thanks for sending me and Kirstie that rainbow today. I know you’re checking in and making sure we’re doing okay and I am really grateful for that xxx