4 boys, 4 stories of struggle and hope

The Tokley family have had more than their fair share of struggles.

All four boys have been in and out of hospital all their lives. Each child suffers from varying health conditions, in particular young Zayden.
 
I first met Zayden and his family through our Christmas Wish Project 2 years ago at Monash Children’s Hospital.
Through a Story Art competition I ran a few months ago, the the boy’s grandmother won the big prize, a lifestyle shoot and Story Art piece for her grandkids.

 

Their finished artwork show’s each of the boy’s interests in one grand panorama that now sits proudly on their wall.

 

Sarah’s words share more of their story. My prayers are with this family as they continue along their challenging journey. I’m so thankful that I was able to bless them in this way.

 

Sarah Tokley: 

 

Zayden has sent me on a amazing journey of learning differently since his addition to our family. For Vin and myself it was a really hard choice to have a 3rd child as Nathan our second born had spent 2 years in and out of hospital with an unknown diagnosis, he relied on his NG tube, was allergic to the world around him and had more days in hospital than out by his first birthday.

When we thought we finally had given Nathan a quality life and were able to resolve some of his issues, we felt adding a sibling would be timely and positive. My pregnancy turned into a very stressful time and I was admitted multiple times for Hyperemesis, and Cholecystitis. During this time our eldest Liamm was diagnosed with a P8.22 Chromosome Deletion.

Zayden arrived in a fast paced chaotic 1 hour labour. Midwives were very worried as I had haemorrhaged. He wasn’t breathing and being a 32 weeker was tiny. His dramatic entrance into the world was just the start of the new pathway we would walk with Zayden. He spent 9 weeks in special care where the Allied Health had concerns as he wasn’t moving and feeding as should be. Eventually taking him home was the biggest relief. I no longer cried leaving him to go back home and wasn’t crying leaving my other 2 at home to be at the hospital.

Zayden continued to struggle and wasn’t meeting milestones, whilst Nathan had started to thrive, his treatments were working and our hospital stays were a memory. At 8 months Zayden was diagnosed with Cerebral Palsy but hearing those words even though all the assessments had shown he would be diagnosed, was still so hard. To now know what your child’s life would be like, to not have the answers, the normal struggles of a parent.  During the first few weeks  of information overload I found out was 22 weeks pregnant and little Rowan entered our lives a short 9 weeks later after an 18 min labour. He started the special care journey for us again.

Our life hasn’t stopped, the genetics team say its a complete random occurrence the issues between the kids, yet I blame myself as most parents do. I dedicate everything to give them the best possible chances in life.

Liamm is diagnosed with P8.22 Chromosome Deletion and Hypo-mobility.

Nathan has Autism, Rumination Syndrome, Slow Gastric Emptying and ADHD

Zayden has Left Hemiplegia, Cerebral Palsy with Dystonia and Hypo-mobility, Epilepsy, suspected Autism, Sensory Processing Disorder and is PEG fed with Eczema covering over 60% of his little body

Rowan has a Gross Motor Delay with Elhers Danlos Syndrome

Each week is filled with at least 5 appointments, these keep Zayden being able to part time walk, that is emotional regulation. They are able to talk amongst themselves that they have a normal life with school and every day try to create great memories.

The children have taught me so much but I never imagined that I’d have put them through 23 surgeries, countless procedures and 13 medications a day. We have spent so much time in hospital that it’s a second home. Each day we use a wheelchair, do therapy and try to fit into what’s needed between fatigue and sleepless nights, the worry, the heartache seeing them in pain.

Thanks go out to the following people and organisations that helped make this piece possible:

Melissa Wood for filming behind the scenes (on her new Nikon Z6)

Puffing Billy Railway for opening up access for this family to have their photoshoot on the train

Nikon Australia

Wacom Australia

EIZO Australia

Canson Infinity

Epson Australia

Art Defined Framing

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