Our unique ordinary
Our normal may not be anyone else's.
I'm not scared to say, there are moments when my husband and I envision our lives without the added challenges, or have a quiet split second of sorrow when we mourn the fact that we probably won't get to see our beautiful boy ride a bicycle, participate in a sporting event, or get married and have our grand babies. Despite those tiny moments, we still consider our lives enriched and blessed beyond measure.
The strength our son (now 12 and a half years old) has instilled in us is imperishable. The lessons we have learnt as individuals, as a couple and as a family, are lessons that can never be taught. These are "lived" lessons. Ones that we didn't even realise we needed to learn, but have certainly helped in navigating our unique journey.
Our son Steele was born with a rare chromosome disorder, called Ring Chromosome 13.
"Ring Chromosome 13 is a rare chromosome abnormality in which the ends of chromosome 13 join together to form a ring shape. When a ring forms, there may be missing genes where the chromosome's ends fuse together. Therefore, the severity and symptoms associated with ring chromosome 13 vary from person to person, depending on the number of genes, and specific genes, involved."
Definition credit: https://rarediseases.info.nih.gov/diseases/6069/ring-chromosome-13
I have also included the link to a Ring 13 information booklet that was shared with us, all those years ago.
The compelling reason for me to start Mummabilities, was to share, connect and grow. It would be selfish of me not to share what I have learnt when I know that there may be someone travelling a parallel road to ours. My purpose is beyond the person I know I am today. As I discover this, I plan to share our experiences (past and present), the products that have worked well for my son (and us as a family) and any other ability that ventures into our path.
If an outcome of our ordinary can help just one person, my purpose will be realised.
Our beautiful Steele, age 5.