![Br[eat]he by Rohini Contractor](https://substackcdn.com/image/fetch/$s_!iNbz!,w_80,h_80,c_fill,f_webp,q_auto:good,fl_progressive:steep,g_auto/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fa163bdf0-87e0-4a45-8f8e-d94de8382550_1200x1200.png)
The Labour Government has announced a swathe of cuts from axing NHS England to cutting PIPs for disabled members of our nation. The idea that all these benefits are easy to access is a myth. Anoushka’s rare presentation resulted in her not meeting the criteria for a care package and my husband and I funded her care through our life savings. By the time a care package came through, Anoushka was extremely poorly in hospital and she could not benefit from it.
Moreover, the real issue is not about money but skillset. It takes a special human with a genuine will to serve others to make a difference to a high dependency child and their family. We are fortunate to have had four incredible nanny carers join our family over the course of Anoushka’s journey. I say join our family because I saw them as members of our unit and felt a deep connection to them. I still hold them in my heart for all their support in enabling me to mother our children against the odds. I will introduce you to them in this post but before I do, let me take you back to the summer of 2015.
I have talked about the exploratory investigations Anoushka had at the Chelsea and Westminster and how the investigations triggered deterioration. It’s important for readers to understand that “deterioration” is not just a medical term but to really absorb the word. Here “deterioration” signifies a change across physical, mental and emotional aspects of life. The latter two factors “mental and emotional” are destructive for the human spirit. The “deter” in the word becomes operative. You see, you are deterred from fully engaging with life, a decline in your faculties becomes a barrier to participation. Imagine a 30 month old child retreating from the world.
It was a critical time for us. I was pregnant and bouts of threatened labour left everything in the balance. Facing the enormity of the mountain before us we decided to find someone to help us through. A beautiful woman Anoushka named “Nanny Laura” supported us whilst we waited for our son, eager to come out from 26 weeks. He held out till 38 weeks and emerged in water, healthy and calm. He settled well into guzzling his milk and packed in cellulite as he drank me dry!
The Five Carers
At 18 days old, our son’s life changed forever as Anoushka deteriorated following a lung biopsy. One night, I returned from hospital and wept as I held our son in my arms. Anoushka was fighting for her life and our family was split between our home and what was to become our second home, The Brompton. Laura had a quiet way of supporting me. She made me porridge and sat with me. Her quiet presence, without judgement without presumption, held me. Those moments are crystalised in my mind and I am grateful to have been in a position to afford the help but moreso, find someone who was right for our family.
When Anoushka returned from her 3 month biopsy, our home turned into a pressure cooker. I was drowning in a sea of tubes, they were everywhere, three metres of oxygen tubing throughout our home and a metre of tube feeding. Anoushka was literally chained and traumatised out of her brains from the hospital admission. I called the community nurse and said, “We need help now, I am going to have a breakdown!” They sent a nurse over who quietly observed and concluded that we were ok. I wondered if rolling around on the floor or getting blind drunk would have worked better?
You see herein lies the challenge of time. We were left at our most vulnerable, without adequate support. This timeframe is important, in the days post discharge, we needed 24/7 support to adjust to our new reality instead we were left to drown and both our children suffered.
I was exhausted and angry with life. We had sought medical advice to improve Anoushka’s life and instead she had suffered irreversible deterioration and had returned home a completely different child, physically, emotionally and mentally. And what of our newborn? It was a turning point in my understanding of vulnerable parents who had walked this road before me and no doubt continue to do so. I developed an acute understanding of how parents could be driven to ending it all.
Eventually help did come through a wonderful woman called Alison, funded by the Prince’s Trust . She did play therapy sessions with Anoushka to help her recover from the trauma.
You cannot buy this type of play therapy because the type of trauma Anoushka suffered was specific to medical intervention and therefore the trained therapists were only available through the “system”. You see, this is the call to arms for our country’s healthcare, our nation needs to skill up. We have a medical system that needs holistic care, if not, the greatest doctors in the world are of no use to us, we need this care to see the patients through to a point of independence but more importantly a recovery of their sense of self.
As we settled into our new reality, my husband and I wondered what we were going to do after Alison’s 6 week placement of two hours a week. My search unearthed an interesting state of affairs. Nurses from Australia and New Zealand were flocking to the UK but their license was non-transferable to the NHS. They were happy to work as nannies through an agency.
We couldn’t believe our luck when Andi, a cardiac nurse joined us. She brought a detailed eye to Anoushka’s care and we collected data throughout the day on her respiratory rate and other vitals to help us understand how her body was processing her day. All this data was fed back to her medical team as we struggled to feed Anoushka and keep her going. Andi arrived at our home every day with bright eyes and a generous smile. She encouraged me to go for a walk but I was paralysed with fatigue, existing tube feed Anoushka and breast feed our son. (Typing here, I feel so pathetic against Anoushka’s incredible will to walk with all the tubes streaming out of her). It was such a difficult time, you could feel the pressure in our home as we all strived to survive. Andi’s skill was supported by another incredible woman who entered our lives, set to become a pillar of strength for our young family. Fiona Rankine, from the Rainbow Trust brought decades of experience, in special educational needs, counselling and life-limiting childhood illnesses. Together they held us as we fought to improve Anoushka’s quality of life.
With no care package in sight, my husband took the opportunity to return to work. I had weaned our son off the breast and was in a position where I felt I could manage on my own. I had a rigorous routine but there was a real risk of things falling apart.
An, a theatre nurse joined us. A calming presence, she took the pressure off all of us. Our son loved her and she had a way of coaxing him as he charged around like a puppy. In many ways, she buffered my anguish whilst I entered the valley of despair, fighting for Anoushka and fighting to stay sane. Looking back An held us through the most challenging part of our journey. In August 2017, I experienced a huge personal blow that impacted our family unit and our sense of place in the world. I was vulnerable and An was part of the team of souls who closed ranks around me. In that period, I reached the brink of destruction and to this date, I am indebted to her for her calm disposition. She supported without judgement. Her silence and her presence was enough to help me find my way, helping me grow stronger and reclaim my sense of self and identity.
An returned to Australia amid the crisis of Anoushka’s first pneumothorax (lung collapse). My husband and I worked as a team as we faced a reckoning on Anoushka’s care. A teaching assistant at Anoushka’s school, Tara, joined our family. She saw us through multiple lung collapses, our wait for a lung transplant, an ECMO run (coma), COVID, a lung transplant and finally Anoushka’s recovery which was to last but days. A compassionate soul, Tara grew with us as we all learnt to take care of Anoushka. She learnt about non-invasive ventilation, tube feeding and holistic care. An early years practitioner, she supported our son through the formative years of his life. For me, she was not just our nanny carer but part of the family. In another life she could have been a daughter to me. Tara left us before Anoushka’s last birthday to return to Ireland to take care of her own family.
There is one more person who cared for our beloved daughter in a unique way. Miss Norman was Anoushka’s teaching assistant at St Mary’s School in Hampstead. Funded by Camden to give Anoushka access to a mainstream education, Miss Norman became a constant in her life. It was her first time in such a role but I believe she was destined to be Anoushka’s guardian at school. She took care of Anoushka from the age of 3 and became her educator, advocate and carer. After the first term, I cried tears of gratitude for the respite she had given me. Anoushka had someone who could help her Breathe and Eat at school and I could finally Br[eat]he too.
Life is hard with any level of disability. Money cannot solve all the challenges a family faces but what it can do is give you the basics so you can Br[eat]he. Breathing and Eating are the basics tenets of life. Human life cannot be sustained without it. To breathe and eat is to survive. Once you start breathing and eating well, you can start to thrive. Imagine that this Mother’s Day! With love to all those who help me mother against the odds. There are many.
In loving memory of Anoushka Rohini Mistry With love to my husband and son Without whom none of this would be possible
I truly appreciate your kind words. Anoushka’s strength was a true reflection of yours. Happy Mother’s Day, Rohini.
Your words are generous, they carry love and meaning that is so touching. Thank you for sharing your heart and including me in your reflections. Anoushka’s light shines through your writing. Sending love to you all. Feliz día de las madres xxx