Continued From Part One
Written by Becky Tilley
Finally I found a role that I was appreciated in, at least by the kids. I wasn’t very welcome by the girls I worked with so I decided with the support and encouragement of my husband to become a childminder. That way I could still do what I enjoyed and was good at but as my own boss in my own home. I am glad to say I succeeded and have been supporting so many families for many years. I called it First Steps For Life as I wanted to give children a positive start in their early years and help them build up their confidence. After my own tough start at school, this was something I found a lot of passion & purpose in doing.
Fast forward to the birth of my second beautiful child in March 2020, who was born severely jaundiced and hypotonic. It took 14 months until he and myself were diagnosed with Koolen-De Vries syndrome, and little did I know my precious daughter that I was four months pregnant with at the time was also a rare & wonderful Kool kid. Her diagnosis came in May 2022 after I observed she had hypotonia, was long sighted, and had the same long fingers and toes as her brother. The blood test was really just to confirm what I already knew in my heart.
So having gone before them as a Kool kid with low self confidence and no self belief, I am celebrating my kids every step of the way. I support them with any struggles or challenges but daily remind them of their strength and all they are achieving. Joshua is a very happy, healthy and super active little boy who is so smiley and affectionate, and definitely has a mischievous side too. He uses Makaton English sign language and can say “Yeah” and “more” at two years old. These words are like music to our ears as his parents, and he randomly tries saying other words too, which is always a joyful surprise. Avary is the happiest and smiliest baby we have ever known. She happily rolls every which way, bangs blocks together and when I sit her up on the floor for 10 seconds or so she sit up with her back almost completely straight and hands on the floor. I don’t miss a thing to celebrate progress wise, there is nothing too small.
What I now would like to say to other rare parents is this: pay attention and be the support you need in areas of weakness where they struggle, but always back it up by celebrating and reminding them of their strengths. The words we speak over our children are helping lay the foundation for their identity and what they believe they can achieve. Let us speak the good and the great over our kids daily, so they will grow in the knowledge of just how uniquely amazing they are.
Stay tuned for more contributions from Becky Tilley!
