~ 2 minute read.
A guest blog …
Apparently when I was little and people asked me what I wanted to be when I grew up, I said I wanted to be a mother. Obviously, I had no idea what that would entail.
When you fall pregnant you have an expectation of how you think things will go based on what you’ve experienced with friends and family, but things don’t always go to plan.
Labour started early and after 8 hours I was holding a beautiful baby girl. Whilst baby and mother rested, dad was out wetting the baby’s head, but not for long. The doctors asked for him to come back as they wanted to talk to us both.
The doctors discussed their suspicions that our daughter had Down Syndrome. A blood test was taken and after 3 days it was confirmed. I had heard of it but what did that actually mean for our daughter and for us as parents? Our emotions were on a rollercoaster.
Information packages were given to us and a representative from a local special needs community came for a chat. Some of this information helped but it was overwhelming. Trying to get your head around what this was, telling people, trying to answer their questions and not really having any answers.
Getting through a day at a time trying not to think beyond the day. Focusing on learning to care for your daughter, meeting her needs and letting the future worry about itself.
Certain conditions come with the standard extra health issues. So began the visits to Paediatricians, Doctors, blood tests, scans and hospitals for surgeries.
Just as we had begun to accept her diagnosis along comes another issue. After a prolonged surgery to repair a hole in her heart an infection caused some damage to her brain. Due to the complexity of her brain, they couldn’t give us any indication as to what damage had been done. So, they told us the worst-case scenarios, she may never see, hear, talk or walk. So, we grieved for the person she had already become as we learnt to meet her new needs. We would continue to do this at various stages of her Life.
The doctors didn’t get it all right. She could see and hear. She managed some steps with equipment assistance and although she couldn’t vocalise, she certainly communicated her point through other means. I often told people that although her body had let her down physically, mentally she was very switched on. She grew into a very strong, determined (or stubborn), cheerful young lady with a wicked sense of humour. She pushed her family, carers and the medical profession to be better and to have higher expectations. She certainly made her mark on the world and made a new path for those following with the same needs.
As a mother I was pushed to advocate for my daughter and at times way beyond my comfort zone.
I learned not to always accept at face value what I had been told as not everyone has all the answers and every child is different.
She grew into a very strong, determined (or stubborn), cheerful young lady with a wicked sense of humour.
My advice to others is:
- Don’t be afraid to ask lots of questions even if others make you feel silly
- Trust your instincts as a mother and don’t be afraid to stand your ground
- You need to make them listen to you as you know your child best
- Enjoy a day at a time and let the things you cannot control in the future worry about themselves
- One of your greatest resources is other parents travelling a similar journey, so reach out
- Things may not always go as planned but sometimes it’s a better plan
As a mother I was pushed to advocate for my daughter and at times way beyond my comfort zone.
I was able to celebrate the joy of her successes and observe the special relationship she had with her brother. The love and laughter of the siblings was pure joy.
There were times when I was really struggling. Somehow, I managed to find that inner strength to face the challenges. To keep going when things got really hard and to push through the tiredness.
As a final note, I would say my courage was most needed when I had to say goodbye to her.
I am lucky to have this person in my life. Why lucky? Because she is strong, courageous, thoughtful, considerate, and she loves truly and deeply. She does the right thing … every time. I have learnt a lot from her over the years, and while I am not a parent, her advice to others above is relevant for each of the roles I (and we all) have in life.
She is also one of the most mischievous people I know. I know where her daughter got her wicked sense of humour from!
Thank you my friend. I look forward to learning so much more from you,
@CourageChick
aka Dinzzo
#celebratingfriends
Leading with courage 