*Sigh
12 years of moments, memories and milestones. Deeply carved into my heart… Some have wounded me and some have healed me. But you see, it’s hard to put into words this exact feeling I’m having right now. It’s a mix of: “Yeah! I survived… look how far we’ve come!”, meshed with “Where did the time go, what is next for us?”, and sprinkled with “Puleeeese stay small forever.” .
These double-figures heading into puberty come with quite a fear. My disabled daughter is growing up and to be honest, deep down I am terrified. As Bella ages, so do expectations. Schools and therapies encourage independence and autonomy, that is the end goal right?
I recently had a meeting with her IBI clinic to discuss her progress and next steps. Big Horray’s! all around, as today she can eat at a table using her utensils, request to go to the bathroom independently, and even say "Good night" on her iPad to us. Later in the meeting I was caught off guard with the comment, “At the age of 17, Bella will be discharged. We should start thinking about what will be next in her future.” ... FML
I am often reminded that there are many basic living skills that still require 1-1 support and supervision. Bella is still cognitively at a toddler level, and fully dependent on others for her own personal safety. Despite so many successes, my humility seems to run out when I attempt to think about what the future may hold for Bella and our family. What will Bella’s future look like? Will I be able to continue to care for her?
Deep breath.
The reality is, the information for parents of children with disabilities and ‘news’ slowly become less, and the opportunities to be involved in slow down. Today, on her birthday I am reminded that who and what I rely on will inevitably shift and change as Bella grows up. It hurts to learn that support organizations for children and teens with disabilities will eventually have cut-offs, and families like ours may not be able to receive the assistance depended on for years.
This week was Spring Break, and I decided to do a massive clean-up and overhaul of toys and clothes that Bella and Petie have outgrown. Through my rampage of decluttering, vacuuming, mopping and chucking (my favourite part)... I found a book that I bought for Bella when we got her first diagnosis of Global Developmental Delay at the age of 12 months old.
On The Night You Were Born, Author: Nancy Tillman
My heart continues to swell as I work through these growing pains, but truth be told, Bella’s birth and her disability has and will continue to have profound effects on me and everyone around her. As I sat down to read this book again, I found myself smiling within the first few pages. I am reminded that Bella has helped me invite the positives into my life...
My Dearest Bella,
Life is complicated, day-to-day is that much tougher. You continue to teach me that growth is endless, and our lives change and change us beyond anticipation. Nobody prepared me for the emotions that come with parenting you. It is full of questions, self-doubt, and eventual acceptance for who you are, as you are; a path that should never be seen as a straight line. You continue to give me your determination. You continue to give me your strength. You cultivate a kind voice in my head. This voice will continue to get me through the dark days, the medical appointments, the IEP meetings, and whatever your exceptional life will toss at you. You taught me to be self-compassionate as it provides me with a much needed kind of attention to help me enjoy and celebrate today. 12 years of moments, memories and milestones. Happy birthday Bella. To our overwhelming journey!
Love, Mom
Petie decorated the kitchen for Bella last night, as waking up to a special breakfast is a birthday ritual in our family. We made crepes smothered with chocolate for a nice kick-start to the day! It’s never been a challenge to think of a good gift for Bella as you can never go wrong with anything that bangs, shakes and makes loud noises... hopefully Prime comes through and her 2 metal cowbells get delivered soon! I also love personalized gifts, and my friend Jo connected me with her sister Kerrie. Please check out Kerrie’s Quilting Creations, you can find her on Instagram or Facebook. Kerrie made Bella a personalized pillow, and what’s nice is that there are openings in it for us to put a weight as she loves deep pressure on her body. The front of the pillow also has a few front pockets for us to slip her blanky inside and another one for pictures!
Thank you all for sending Bella your HBD wishes, we are surrounded by so much love :)
