When you’re living a life that is not quite typical
By Heather Cox
My daughter, as you grow you overcome so many obstacles. You’ve beaten so many odds. You’ve achieved so many more inch-stones than I ever imagined you would at this age; your diagnosis has made it harder for you, but some of our worst fears haven’t come to pass. But you are not quite typical…
You’ve amazed me by your ability to overcome your scoliosis, your low tone, you’re even running around now. But you are not quite typical.
We managed to get your tube out and you can now feed orally, I am eternally grateful for the ice creams and food you can eat, for no longer worrying about how to feed you. But you will never be quite typical.
You are talking now – 2-3 word sentences, slowly showing me your wants and desires, letting me know your preferences.
But it’s not quite typical.
You used to virtually live in hospital. We still have a range of specialists, but now we see them mostly for check-ups instead of emergency visits. Still not quite typical…. You can count to 10, know your colours, put 10 beads in jar. There are days when you blend in with every other child, even go unnoticed for a brief while…
But if people stare long enough, they see that you are far from typical. As you grow my expectations for you have grown too, my hopes have grown for what you can achieve… but in the background I know you will never be quite the typical child, and we will never really live the typical life.
Most days I am ok with that, other days I would do anything to take atypical away from you. Many days I am grateful for even being close, far closer than I thought you would ever be… I must remind myself things could have been so much harder… even if sometimes I wish they were easier. But as I move through this journey meeting other amazing atypical kids and their parents I also see that atypical is not less, it’s incredible. It opens people’s hearts and minds. It touches people. It teaches people. It moves people. It’s a-mazing.
About Heather and Arianna
Heather is mum to two girls, Erica, who has developed typically and Arianna, whose journey will be different. Heather writes a blog and has a FB page called Arianna’s Army which she uses to share her journey, educate and raise awareness and as an outlet for her own feelings.
Arianna has an overgrowth condition called Sotos Syndrome, for her it means she is developmentally delayed and has scoliosis, which she wears a brace for. She is showing her mum every day that she is a fighter.
