Who am I?
My name is Abigail Burton, I am 29.
My husband, Luke and I have been married for nearly 9 years.
Our children are Shane 8, Matthew who was 5, Mackenzie 4 & Baby Burton who would be 1.
Our Matthew had signs of issues right from the 20 week scan, abnormalities they couldn’t explain. Quickly, specialists did more tests, deciding the ultrasound report was wrong. The doctors did diagnose Matthew with Club Feet, which is completely treatable.
But, at 9 weeks old he had several specialists:
- a speech therapist,
- a dietician
- & lactation consultant.
It took Luke and I a long time to see the signs that something was very wrong.
Subsequently, the Palliative Care Team were referred for Matthew’s care when he was just 12-18 months old.
He received a diagnosis: HDAC2. After that, it was just 9 short months before he passed away. Matthew’s condition was so rare there were only 2 other cases in the world.
Why take on something else?
I was a happily running a bookkeeping practice from home. Unfortunately, I had to sell the practice sometime after Mackenzie was born to care for Matthew full-time.
As with many special needs parents, self-care isn’t something that came easily to us. When we started making different choices, we realised we weren’t looking after ourselves. The changes we saw after taking One Life Saving Step were enormous.
Before, I was between falling asleep at the wheel with my other two children in the car going back and forward to hospital. Then afterwards, I was better able to manage my stress, I was able to get out exercise, to build & maintain relationships, which I was neglecting before.
We want to see some of the same results for other special needs families.
We want them to know that they don’t have to stay in survival mode. You can start to grow and thrive in whatever circumstances you find yourselves.
I have begun this page as a way to share what I have learnt along the way. To spread the legacy of my little boy, and to help me process as I go.
I’ll share what came from my journal –
Why a blog?
A couple of reasons;
1. Journaling and writing is something I have always done at varying levels, since my teenage years, is highly encouraged by all of my grief counselling type people, that I have all around me, our Very Special Kids Family Support Worker, our Palliative Care team.
2. In the last 3 years I have been passionate about helping other parents through this journey, I was worried when we knew Matty didn’t have long, that when he was gone everything that came with him and the necessary lifestyle e.i. all my new friends and support networks and teams, would just disappear.
I suppose supporting those families coming along in the same journey we had, helps me to stay connected. Makes me feel like everything that I learned, went through and understood from Matthew’s life isn’t useless. Matthew’s journey can continue to impact people’s lives.
The ultimate goal; to help more families get more good things. The good moments, the good emotions, the most victories that they can from the journey. Including, that there is more to this journey than just survival.
When I was doing the hard yards and really struggling, I wish I knew earlier that there was a way to make a difference. I wish someone had been able to communicate what I would gain if I reached and built a community around my family and I. There is another way and I wish more people out there were sharing that story with me.
In other words, I’d love to help and support you. So go ahead, please leave comments, ask questions, and let me know what I can do to help you.