Small steps for some are huge milestones for us when it comes to Kate.
I am grateful that I have Jack who has shown me what it is to be a ‘typically’ developing child – you know – the one who follows (somewhat) the stages of development outlined in all of the many parenting books available. When he was a baby I had underlined and highlighted and tagged pages in my What to Expect – The First Year book. Then as he grew into a toddler, I moved onto The Toddler Years. I marvelled at all of the things he could do, the milestones he met (on cue or ahead of time), and was excited for the things to come. When Kate arrived, I dug out my books and started following along again – ready to celebrate and track and plan out how I was going to guide her and maximize her development with the right toys and playgroups and baby sign language.
When we realized that Kate was not a ‘typically’ developing child. When I started to recognize that something wasn’t right, that Kate was falling further and further behind of ‘typical’, I put that book away and stopped referencing it. Eventually, I threw it out.
And then I got sad and I grieved. And I am ok in telling you this because I am not embarrassed to be sad, to have grieved loss for my child, or to be grieving still at some moments. I have come to learn – my tribe, my special needs and medically fragile parent friends, social workers, some wonderful kids have taught me that it is ok, that being sad is part of this journey.
I still feel sad when I think of what Kate might be missing in life, but less and less do I find myself focusing on what she can’t do and more on what she is doing. Small steps that are huge celebrations.
I love Dora!
Today I bought Kate a DVD for her Christmas stocking. It’s a Dora Christmas video and I was so excited I almost danced at the grocery store. Watching TV, being interested in a show/program, being able to relate what Dora is doing with Boots is huge for Kate. She started showing interest a couple of months ago and it has really caught on with her. Dora videos, games, books, dolls, etc. She is a true little girl with a passion.
I can remember long hospital stays at CHEO – even just recently – when well intentioned volunteers or child life workers would come into our room and offer to put cartoons on for Kate or a video to distract her during procedures. “She doesn’t watch TV” I would say. They would they look at me and not know what to say. What child doesn’t watch TV? What is she going to do for long hours at CHEO? (And it’s funny, because of the parent propaganda out there right now is not to watch TV). I felt like I had to make an excuse or explain that she was behind developmentally and is Deaf, so TV just didn’t interest her.
Well, she’s watching now and I couldn’t be prouder and more excited for her. She sways along to the songs. Claps her hands when the theme song starts and points at the screen when Dora ‘asks’ her a question. She is even signing ‘Dora’, not easy because she has to fingerspell (spell each letter with her fingers).
Yup. Totally proud of this milestone.
Not many people get it. Those that are close to Kate do. Recently we were at our regular appointment with nephrology getting weighed, measured, blood pressure etc. Kate is now cooperative with the nurses (she has gotten to know them) and patiently extends her arm for the ‘squeeze’ as she calls it(“keeeez” she says and signs), and that’s not even the milestone that was most exciting. Being at nephrology, you can imagine that we have to give a urine sample. Until recently, this has meant that I would have to get a sample at home by taping a ‘pee bag’ to Kate as soon as she woke up, wait for her to pee and hope the bag didn’t leak, rip the back off (like a horrible waxing), and then put that sample into a cup to drive into CHEO. This time – a couple of weeks ago – I suggested to the nurses that we might be able to pee in the container that the children typically use in clinic. Kate has been #1 potty trained since August and I thought we could give it a try.
She took that container and marched to the bathroom signing ‘potty’ the whole way. Announcing to everyone in the clinic and waiting room what she was about to do. And she did do it. Peed in that container that we proudly marched back to the nurse. Full display, I felt no need to tuck it away. ‘Yes people, here is our pee, we filled this cup and we couldn’t be prouder!’.
And the best part of celebrating this milestone? The reaction of the CHEO nurses. They danced with us, literally broke into some sort of quick step/tap dance thing and clapped in excitement for Kate. They knew this was a celebration. They knew that this did not follow the book or the list or the guidelines for children her age, but they knew this was special for this 6 year old girl.
And you know what they found to celebrate? Dora stickers!
I am starting to love milestones – as tiny (microscopic) as they might appear to others, to me they are causes for big celebration and joy. Each and every little one.