Well two very personal posts in one week! Earlier I shared my beautiful mum and today I’m giving you an update on how little Myla’s doing. Well….she’s off! She’s finally walking and she’s so excited and proud of herself, as are we. When we found out Myla had Kabuki syndrome, we knew that she probably wouldn’t be walking until the age of 3 or 4. She’s been determined to get going for a while now, so its no wonder she beat the doctors expectations. I cannot tell you how amazingly proud I am of her, as it takes so much more effort for her to have the strength to walk. I cannot stop smiling as I watch her chase Riley around the house now and push a shopping cart in a store, as it feels like it’s taken 10 years to get to this point.
She is so much happier with her new found freedom, pretty soon I’m going to have to get some of those reigns for her as she’ll be gone in a second with her curiosity taking her everywhere. You’ll notice that she doesn’t have a white cane. That’s because her eyesight has far exceeded any of our expectations and she doesn’t need one. Despite only having partial vision in one eye, she gets around really well and is into everything! She will likely be able to read large print also, which is fantastic news.
As for her speech, she has around 10 words that you would probably be able to understand, and a few more sounds that I know what she means. I know that will come eventually, although it can be very frustrating at times for both Myla and me. I am just so grateful that she is still healthy and can finally walk! Being a mum to a child with special needs is only something other mums in the same position can truly understand. There are days where you constantly compare your child to other “normal” kids, and if I’m completely honest, you cannot help feel a tinge of jealousy towards them. But then your child will have the smallest milestone and you’ll be on the biggest high, and suddenly you fill up with pride and joy. A very talented writer friend wrote me this over Thanksgiving and it beautifully describes how we feel.
” I’m thankful for you and your family aswell. You make me feel like I exist, not as a victim, but as a member of a very exclusive lucky group of women who get to experience a world not many get to see. It is a group of strong, powerful people who truly understand love.”