Rainforest Ward…Otito’s final home. (A thank you letter to all the teams that made his last year special)

It is a time in my life that I can never forget. I first walked through those doors 4 years ago when my son Otito was born. He had gone straight into coma and our world was shattered. A simple birth has turned into a nightmare. At a time when we were trying to make sense of the diagnosis, we walked into the loving and welcoming arms on rainforest ward.

It’s a ward unlike any other at GOSH because I have been through many wards along the way with my boy unfortunately. There is a personal touch to the care you get on Rainforest ward. The culture and atmosphere is exemplary. The staff there are a team. There is a feeling of peaceful coexistence and healthy rivalry. Not the usual cut throat competition that is quite common in some female dominated professions.

In the last year, it became my son’s home- our second home.

He was looked after and loved on Rainforest ward. I often wondered if he would ever adjust to life at home after being spoiled by the nurses who loved him to bits. Now and especially at this time, I look at those doors behind me with fondness. Although he never made it back home, he was at home there. When he was there, he was less of a patient and through the year that was to be his last and in their care, we saw more of the happy little boy that he deserved to be. That gives me peace.

The interesting thing about hospital life is the unintentional intertwining and inter-mingling with so many people. You learn to get along with them and adjust to all their qualms. In the end, a peaceful coexistence ensues.
I remember good times and sad times in equal measure. I resist the urge to sway towards being stuck in the sad times. Instead, I deliberately swing the bias towards the happy times. Otito brought these wonderful people into my life. Had I not birthed him and nursed him through the roller coaster years, I would have remained oblivious to the reality of the wonderful team existing behind those doors. For this I am thankful.

When Otito passed away, I saw all the pain and I watched the tears flow through their eyes and I felt very lucky to have them all in my life. Sharing the pain with these team of love made it easier to bear. No epistle can convey how tough the last year has been. However, in the company of the staff on the ward, I felt like they witnessed my struggle and no explanation was required. Therefore I could just get on with trying to make sense of what had unfolded.

Rainforest ward was our ward. I made and formed new friendships with many parents that I can never forget.
You see, there is one privilege of having a tumultuous life as I have had. You begin to see that many things are overrated. “Friendship” is one of those. Sadly, many long formed relationships fizzle to a trickle. Phone calls reduce to faded chat lines until they become history.

This is usually not intentional but it happens anyway. Having a sick child can take you into a different league. You begin to have less common interests with old friends until you drift apart. Old friends cannot identify with your new reality. Trying to get their attention may keep you spinning until you are saddled with so much emotional baggage at a time when you need less stress.

I had a friend once think that I was lying when I said my son was sick- again. My supposed friend in not so many words said “Like seriously, how can someone be so unwell?” before ending the statement with the usual “bless him”. On the other hand, I also experienced the helplessness from friends who would have loved to help but did not know how or were too far away.
I made new friends on rainforest ward. When I did, the gap was filled. I did not mean to make them but they happened because they could feel my pain. We were in the boat together. Somehow they got it! It was a comforting relationship. We all were united in the struggle and pain we felt for our children. We were fighters and pulled one another along the way. We shared tips and tricks depending on what we had learnt.

I am sitting on my sofa now missing them all.

Somehow like before, I know that no matter how I try, life will happen again and the calls will fade because we are now in different worlds. We will begin to have less things in common. My day will probably begin to have different events. I may start to feel insensitive when I call to moan about my new challenges and you may start to call less because you do not want to disturb me with your Parent Caring challenges. But it doesn’t have to be that way because no matter what happens, I will always get it.

If you have walked this path, you are never the same. It changes your life positively if you let it. You become more sensitive to things you never could have thought you would even notice.

One of the mums gave me a life time membership of the Parent carers club. Like an invisible alumni. It was comforting because it really feels strange being “normal” again. I feel like a bit of a cheat- being relieved of my duties so suddenly!

For the first time yesterday, I experienced something weird. Before I tell you what it is, I will take you down my lane of memory to help you understand why it felt wierd….

In 2012 when I watched the London 2012 opening ceremony, pregnant, I saw a display by “Drs and nurses at Great Ormond street hospital” and thought -Awwww, bless. God help “those” people. After that, I began to notice the charity appeal advert for GOSH on the TV and even though I would not like to admit it, I mostly scrolled past the channel.

Now after I had my son, I could not believe it when I was told he had to be transferred to GOSH. I will never forget the day I walked through those doors….

You know you see these things on the TV and never imagine that it may land on your doorstep. It was what my British brothers and sisters call “surreal”.

As the years went by with a sick child, I paid more attention to those adverts for GOSH charity. I watched them till the end. I prayed people responded to them because I was too exhausted caring for my son to do anything about them.

Now I think you are ready to hear about the weird thing I was talking about before the preamble….

Well, I watched that advert yesterday and I felt a different feeling. As I watched,
“I was happy to see the wards in the video, I smiled, I experienced a realisation that now I could finally do something to help the charity”. I hope to pay attention to that feeling as time goes on. It was a very happy and comforting feeling honestly.

GOSH depends heavily on charity funds. I hope that people can try to respond to this without waiting to experience the hospital as I did.
I will like to think that I am a better person now after this experience but only time will tell.

I joked about “riding off into the sunset and living happily ever after” when I finally “checked out” of Rainforest ward” last week. I really choose to see the end of my hospital life journey that way it makes it feel more “mills and boons-ey” (It was a love story after all only a different typeπŸ˜€).

Thank you to all the staff on Rainforest ward- Nurses,Drs and consultants, all the various teams that cared for Otito- CVL team, surgical team, Intervention Radiology team….. The play team. The Dieticians. The hospital chaplaincy who were my source of strength- I shall miss our coffee mornings. Thank you to the Lagoon cafe especially those who gave me very large portions- you know yourselvesπŸ˜€. I am also missing my ward domestic and cleaner. I also thank the PALS team for all their mediation during times of disagreement. Family Accommodation services, Social work security, porters and last but not least the PICU, Family liaison and “end of life” team downstairs.

You all keep saying I am strong but I could only stand strong because of your support for my family these past four years. You promised that we will be supported and you really did. You should all be proud.

The outcome may not have been what we all wanted but you did your absolute best. Otito will be humming and stumping in agreement ( I will love to think that πŸ˜€πŸ˜€πŸ˜€πŸ˜€).

Hopefully this is not goodbye but Bye….for now.

Thank you.