The weeks leading up to the birth of a baby carry so much excitement. Adding the final touches to their room, setting up the car with the car seat and the anticipation, whether it be your first child or fourth, on how this little being will fit within your home and family. But imagine walking through those hospital doors ready to give birth and never getting to leave the hospital with your baby. This was the case for my dear friend Jasmine and her husband James.
Jasmine and James are the kindest, most positive people I’ve ever had the privilege of knowing. You’d be mistaken by their warm smiles when you meet them of all they have been through and the grief they have endured. Jasmine had what seemed like a normal pregnancy. They have a healthy two year old daughter and so had no reason to believe their baby boy would be any different. However, shortly after their baby boy was born they knew something wasn’t right. William was born with a rare genetic disorder that affects 1 in 50,000 boys to which there is no cure and no treatment. William only graced the earth for nine short weeks. And in these nine short weeks Jasmine and James juggled caring for their toddler daughter at home and going into the hospital in the city to be by William’s side. In honour of William, Jasmine and James are raising funds for Mater’s Little Miracles to support families who are going through the same life-shattering journey as they did.
Below is a blog post from Jasmine from her business Tiny Touch Therapy. If you wish to help Jasmine and James raise these much needed funds, please follow the link to their sponsorship page where you can read more about the Brisbane Mater Mothers hospital and how the medical staff and equipment played such a pivotal role in lifting their spirits through this time.
Beginnings, endings and life’s inbetweens..
The start of a new beginning for Tiny Touch-
Some of you may be new to Tiny Touch and others may have been with us from the start..
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 mixed month, our beautiful boy William came into the world. It was a hooray he’s here moment, yet 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 truly, 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 the first night we saw the walls of NICU this wasn’t going to be a short stay, it would become our home over the next nine weeks.
The next 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 have I 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.
Our worst case scenario would have been best, as the worst case scenario was the one you would never dare to think of.
William was only to be here with us for a little while but his little while, nine amazing filled weeks was his lifetime.
He was diagnosed with a rare neuromuscular genetic disorder that affects 1 in 50,000 boys, William was our 1 in 50,000. Boys with this genetic mutation don’t tend to survive infancy as it affects their respiratory system severely.
The news hit us to the core, but in our true selves we pushed through for our family, for William and our daughter.
The day William grew his angel wings, the pain was so deep I was ready to throw Tiny Touch away. I wrote a post that never went live- basically saying ‘thanks guys, but see you later’. Instead I decided to sit on it, post a few things I love and don’t make irrational decision, purely from my pain.
There’s 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.
Instead of closing Tiny Touch down I have decided to change the core of it. Initially made to help and guide mums and dads through infant massage- which is still available- I’m adding some new structure. Including essential oil blends, specifically made for babies through to childhood. Supporting blends for mums, dads and life’s ups and downs. We will also be adding some essential oil holders and including a blog. I will also be housing a very exciting project with Mater Foundation in honour of William. Click here to donate.
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 yet we feel privileged to be allowed the knowledge and experience.
There’s so many families out there who are struggling and are living with loss whether in utero, stillbirth or infancy. There are parents that are now carers and some who are navigating their way through life with a child affected in some way but yet no diagnosis.
We are here for you all, please reach out if you’d like a new friend or to tell me your story. If you’d like to feature on the blog or discuss products available send me an email through the contact page.
Lastly- Thank You- for stopping and taking the time to read our story.
Big hugs, Jasmine x