Sometimes, in the middle of an ordinary life, something happens that doesn’t seem fair. Doesn’t seem right. Thats what happened to Jasmine’s family. This year should have been the first Christmas with their son William. Instead, they will face this and every Christmas, without him.
In their time of need, Jasmine and her family have very bravely chosen to do something that will give back. Their goal is to raise enough money to help give vulnerable and premature babies the best possible start to life.
Below is a blog post written by Jasmine Campbell who is the owner of Tiny Touch Therapy. Please take the time to read Jasmine’s story & head on over to contribute to this very worthy cause this Christmas – Donate here!
Beginnings, endings and life’s in betweens..
Recently our family was dealt an incredibly tough card, one that you would possibly take a glimpse at and curl into a ball. July 2017 was a mixed month, our beautiful boy William came into the world. It was a hooray he’s here moment, followed by silence that lingered. We knew that come July our family would be changing. We were growing to a family of four and we couldn’t be more excited. However, we didn’t know how dramatically our lives would change.
The night William was born he wasn’t able to manage his own breathing – totally unexpected, overwhelming and confusing. Within hours he was transferred to Mater Mothers’ Neonatal Intensive Care Unit. My husband and I were incredibly worried however, our positivity outweighed our feelings of doubt.
Little did we know, that first night we saw the walls of NICU, it wasn’t going to be a short stay. It would become our home for the next nine weeks. These nine weeks were tough, character changing tough. We too’d and fro’d from our home on the peninsula to the city. Daily. Every single day. I gave myself a six week grace period, six weeks till our daughter turned two. He’ll be home in six weeks – max, and we will have a big party. I look back now and I think far out – if I didn’t set that goal, would I have survived?
The days started rolling into weeks, I can’t tell you how many tests were run, the confronting questions we were asked and before we knew it we were running our lives and family from hospital. Oh boy, it was surreal. How are we even here? I had a fine pregnancy. We have a perfectly healthy girl. The questions, so many questions.
I remember in one of our many trips home from the hospital my husband and I had a conversation. Okay, worst case scenario, William will have a disability. We will work with it, we will get him the best physicians in the business.
Our daughter turned two, then fathers day came which landed with, ‘we have a diagnosis’, followed by sinking hearts. On September 1st, our 7th week, we received heart wrenching news. William was diagnosed with a rare genetic neuromuscular condition, that primarily affected his respirtatory system. There was no cure or treatment. We had all been fighting so hard, he had been fighting so hard. But our fight was coming to an end.
Our worst case scenario would have been best, as the worst case scenario was the one you would never dare to think of. The news hit us to the core, but we pushed through for our family, for William and our daughter. William was only to be here with us for a little while. But his little while, nine amazing filled weeks, was his lifetime.
Following his diagnosis the amazing nurses managed to get the equipment we needed to get William outside. The battery life for his breathing support lasted one hour, one blissful hour! To get the sunshine on his beautiful face, feel the wind and feel the world. We will never forget his first time out, he slept through the pram ride out of NICU then opened his eyes while looking at the sky and it was like he smiled the whole pram ride back into the hospital. The best hour we’d had in a long time! He was calm and the whole time and his SATS were so stable. A day, a memory we will never forget. We were so lucky to have such a supportive team at the Mater. They dedicated a nurse each time to help get us outside, whenever we requested the adventure!
William was strong, resilient, wise, gentle and loving. He had a calming nature that seemed to draw people to him by the dozen. He showed us love beyond measure, he taught me I’m stronger then I thought. More patient and appreciative of life. He taught us to be so kind, kind to ourselves, each other and others surrounding in similar situations.
The day William grew his angel wings, the pain was so deep I was ready to throw Tiny Touch away. There are many promises we made to William – one in particular was to live our lives, to fullest, have adventures, do what we love and do all life’s beautiful things, for our William.
James and I can’t help but to notice babies and children requiring extra care now. We want to throw a helping hand the parents way. Throughout our journey with William I met so many amazing new people, we have beautiful new friends and amazing new connections. Our time in NICU has opened our eyes to a side of life that is incredibly tough but we do feel privileged for the knowledge and experience.
To remember and honour William we have set a goal to raise the funds for an equipment upgrade to the power unit, for Brisbane’s Mater Mothers’ NICU. This will help families who fall in to a similar position with a terminally ill baby and require the same equipment. Their baby and family also deserve the opportunity to get outside.
By raising funds to upgrade their power unit, we hope to bring future families joy without limit on their outside adventure. It will allow families time in the sunshine and fresh air. Allow them to create memories, experience milestones and grieve without the timeframe of such a limited battery life.
James and I never imagined being in the position where we would rely so heavily on medical staff and equipment for our child’s life. We certainly never thought we would have to say goodbye to one of our babies so young. However, this is our journey. We have been assigned this mountain and we will show others that it can be moved.
If you’re in the position to donate, even just a little, please consider it. Please help us by sharing our story. Please help us reach our goal to honour William and support the babies of the future.
‘You never know how strong you are, until you have to be’.
We are here for you all, please reach out if you’d like a new friend or to tell me your story.
Thank you for taking the time to read our story.
Big hugs, Jasmine x
If you would like to donate please click here!