29 October 2015

For A Brief Moment In Time, My Life Was Normal

Picture courtesy of Acorn & Leaf

It's been a while, a long while since my last post. Let's get to it........

Today, I had a moment, actually, several moments that were filled with joy. Yesterday, my mind was filled with angst and worry and I felt extremely overwhelmed. It's funny how two days can differ so much. Yesterday, FSCD (Family Support for Children with Disabilities) did a presentation for our staff. They talked about funding, supports, services, resources, who to contact, what not to expect, what you won't receive and so on and so on and so on. 
The word 'typical' was used numerous times. The word 'disability' was used numerous times. I found myself feeling overwhelmed and the fears and anxiety set in. I almost had to leave and go take a break, so that I could gather my thoughts. In that moment, I saw a life filled with challenges and a life where we would have to fight for everything that we know Adele deserves and is entitled to *sigh*. It was a difficult two hours. The presenters weren't aware that we receive services through FSCD, they were talking to a room filled with professionals, those who go into the preschools and homes of families who receive services and funding. 
I learnt that it's imperative that we are so mindful of our audience and that we all need to be aware that we are all on our own personal journeys. Yesterday, I felt defeated.



Today, I met a friend at the Best Western Port O Call in Calgary. After our visit, I decided to take the girls for lunch. I don't typically take them for lunch on my own, they both need my attention and truly, I end up with indigestion because I eat so fast and it's usually not enjoyable. :) The girls and I sat at a table in Sky Harbour, separated from the rest of the patrons (my request) because Adele is a screamer! She randomly lets out giant, wall vibrating screams. We got our drinks and of course Brinley knocked over the full glass all over the stroller and floor. The waitress came over and cleaned it up. She graciously offered a snack from the buffet, just to keep them happy and occupied. As we sat and ate our meals, at least five waiters and waitresses stopped at our table to talk to Adele. It wasn't a forced visit, it was a genuine and sincere moment for each of them. They didn't point out just how cute she was, or that she was dressed in super adorable clothes, they talked to her, they laughed with her, they joked with her, they treated her like the wonderful little girl that she is. There was no talk about Down syndrome. There was no pity in their eyes. There were no comments about our life, the future, the hardships, the developmental delays. For a brief moment in time, my world was 'normal'. I didn't think about supports, resources, therapy, appointments, the future. For a brief moment in time, I forgot about yesterday and focused on the beauty of today. 
I don't expect for people to come up to us and reassure us that our journey will be beautiful. I don't expect for people to treat Adele differently. I don't expect special treatment. When I am out with my family and the world around us gives us hope, it brings me peace and comfort. Today, my world was filled with contentment and joy. 


Picture courtesy of Acorn & Leaf

James loves Adele beyond any love that I have ever witnessed. He has a soft spot for Adele. She tests his limits, she lets him know who's boss and she looks deep into his eyes and lets him know that she loves him so madly. James doesn't talk about Down syndrome, he doesn't talk about his fears, he focuses on the present and loves his time snuggling, playing and laughing with Adele. He keeps me grounded. 
After work today, I could tell that he wanted to talk. As he was feeding Adele, he told me about the boy with Down syndrome who works at the Wendy's by his work. James loves that the boy enjoys his job and that he is making a difference in his community. 
James asked him how he was doing, the boy answered but James couldn't quite make out what he said. 




James had a moment. He felt defeated. He thought about Adele's future and the fears took over. He had a moment where he saw Down syndrome, he saw a disability and not the ability. He thought about how Adele will struggle and how she will be faced with challenges. His heart ached. As he told me this story, he cried. James has never let down his guard. He is strong, but today, he showed me that he is vulnerable. 

We will continue to travel this journey as a team. We will feel defeated. We will rise above the challenges. We will confide in each other. We will argue. We will laugh. We will love and savour the beautiful moments.We will struggle to see eye to eye. We will worry about our children. We will push on. 




7 comments :

  1. I bookmarked your blog many months ago from FB or something, and every few months I click over here and read. Your family and ours are on different journeys (13yo son with intellectual disabilities), with different twists and turns, but I recognize in you the same feelings... those days (weeks...) of defeat, and then days of totally 'normal' (funny word! it has such a new meaning to me!). My husband and I are almost always on different parts of this road of acceptance, denial, frustration, joy, strength. I just wanted to thank you for sharing yourself on this blog and to encourage your efforts. I suspect you write because it helps you (which is certainly a good enough reason!) but thought you should know that it helps others, too. Thank you for being vulnerable within the internet's sea of false perfection. In sharing your feelings, it somehow helps validate mine. From one mom to another: you're doing a great job!

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    1. Tina,
      You made my whole night. Thank you for taking the time to share your thoughts and a small snippet of your journey. I haven't written a post in a while, life has gotten in the way, as it does sometimes. I miss writing; it is so therapeutic for me. I need to get back at it. I would love to keep in touch with you. By the sounds of it, you're doing a great job. Thank you again. Xo Krista

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    2. Yes! Please keep writing! Find me on FaceBook and we can keep in touch.

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    3. I am on Instagram....A Perfect Extra Chromosome and our Facebook page is Adele's Over the Rainbow Baskets. :)

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