Joshua’s Story

Joshua was our first born. Our beautiful blue eyed boy whom we had longed for.

Born on Halloween in 2012, we felt so proud and blessed to be parents.

Not long after he was born we noticed Joshua wasn't developing like his peers. Limited movement, frog like legs, difficulty feeding, head tilting slightly and low muscle tone, just some of the concerns raised with health professionals.

After a consultation with the GP, and paediatrician at our local hospital, we were sent to the Evelina hospital to discuss the possibility that our then 3 and a half month old baby had Spinal Muscular Atrophy.

Getting ready to leave for London we were so worried, scared and frightened of what we'd be told.

Also Joshua had become poorly overnight, wasn't feeding and his breathing looked different.

Upon arrival at the Evelina, despite being there for a discussion with the consultant we were transferred to a ward. After just 4 hours a decision was made to transfer him to PICU as his breathing had become laboured, where he would be intubated.

We can not put into words how we felt.

The speed, the seriousness, being in an unfamiliar environment with other, very poorly children. There was no time to process anything, we were totally at the mercy of the doctors and nurses.

In PICU they acted quickly, intubating and making him stable, all we could do was watch as Joshua, our tiny vulnerable baby boy received the treatment he needed.

Meeting Francesca

Dazed, distressed and petrified, a voice spoke gently, calmly and reassuringly and a warm understanding touch of my arm. "We'll take good care of him".

We looked up and saw, who we now know to be, Francesca. She explained what was happening, encouraged us to get some rest in the hospital and reassured us that she would call us if there were any changes and that she would be with him throughout the night, making sure he was safe.

We'd never met, but knew we could put our trust in her. Not only did she speak with kindness but also with professionalism, experience and expertise.

The ‘Joshy Possy’

We spent the next month or so in hospital and our paths crossed several times.

There were a few 'favourite' nurses and Francesca was top of the favourites! We affectionately named them 'The Joshy Possy'.

Nothing was ever too much trouble and although in the midst of the worst time of our lives, we were able to make the best memories with him.

It's fair to say Francesca seemed to become one of the family, joining in with bath time and singing him songs.

We feel totally truthful when we say she provided the care and love in a way that we would as parents.

The difference Francesca made is hard to describe. She made the abnormal seem ok, the hardest times turn to positive memory making.

Her focus was Joshua, us and to her, in that moment that's all that mattered. Her kind and caring smile, somehow made everything ok even though we knew it wasn't. We were safe in her hands, Joshua was safe.

When we were given the fateful news that Joshua's condition was so severe, he would not recover, our world fell apart.

We were given the option of transferring to our local hospice. Another nurse encouraged us to look into it, assuring us it would feel calmer than hospital, homely even and we'd be given lots of support.

We were hesitant. We had got to know the doctors and nurses - Evelina was like our home, it would mean an ambulance trip, would that be more distressing for Joshua? Hospices were dreary sad places, we didn't want that for the last few days with Joshua.

After talking it through we decided to go to our local hospice - Demelza.

This was the best decision we could have made, not only for Joshua, but for us and our extended family.

We were immediately greeted with warmth, care and understanding.

Providing a private comfortable bedroom for Joshua which really did feel like home. It was quiet, looking out on gardens, no beeping, no hustle and bustle of a hospital, just calm.

The staff made drinks and provided our food. There was nothing we needed to think about or do, other than focus on Joshua, and what lay ahead. Being able to be with our parents, all of us staying there had a huge impact on our ability to cope. Knowing we were 20 mins from home, in a familiar area also helped. 

We were so lucky Joshua gave us 24 hours before gaining his angel wings and in that time the most precious memories were made.

We spent time in the music room - something he always responded to, used their sensory room, took our time to walk around their peaceful gardens with him, even had his hands and footprints cast in clay and professional photos taken - all arranged by Demelza. We gave him baths and cuddles and surrounded him with love.

Demelza encouraged us to treat the hospice like our home. The communal areas were colourful and light with, comfy seating, nothing was too much trouble for the staff caring for Joshua AND our family.

This is all in addition to their exceptional professionalism and medical knowledge ensuring Joshua was comfortable and not suffering.

The support didn't stop there. After Joshua passed, we could spend time with him in a specially adapted room, just like a bedroom.

We were able to play music and have our own family space and even used their meeting area for a place to gather after the funeral.

There is a book of remembrance at the hospice which Joshua's name is in.

They have provided counselling, and we have attended various memory events throughout the year. These are very important to us as it is a way we can continue to include Joshua in our lives.

The memory events allow space for reflection, and often involve memory making art activities, music and poems. We can meet with others who have experienced a similar situation or just use the time to be with your own thoughts.

There is even a grandparents group, which our parents have attended and for those with other children - a siblings support group too.

I was lucky enough to have music therapy sessions and make a CD full of music that reminded us of Joshua and our journey. This was particularly cathartic and really helped to process what had happened.

The gardens have been extended and there is now a garden of tranquility which we can visit any time. It's a peaceful and reflective spot that we have used in the past to just have a quiet moment. 

A hospice always gave me the impression of somewhere sad, morbid, where people go and don't come back from. This is about as far away from reality as you can get.

It's like home with lots of family rallying round to support and make the absolute best out of life - however short that may be. I know they offer so much more than we needed to use to - respite stays, sensory play, music therapy - a holistic approach for the WHOLE family making the most out of life and supporting way beyond the end.

There is no doubt that losing Joshua has been the most traumatic part of our lives but having the support of Demelza, at the time and still to this day - over 9 years on and having Francesca and nurses like her has really pulled us through. I don't think we would be in the position we are today without them.