6 April 2015

The Beauty of Down Syndrome

Recently, I decided to completely clear off my personal Facebook page.
I read a blog post not too long ago; it talked about how important Facebook is to stay connected to groups, friends and family. It talked about how the special needs' community relies on Facebook groups for support, guidance and reassurance.

In the beginning of this journey with Adele, I searched out the groups on Facebook, I added myself to medical groups, I liked page after page, to stay connected. Part of me relied on these groups to take me through the ups and downs of having a special needs' child. They are communities filled with love, pride and way too many opinions. Some of the groups offer medical advice, shame parents for not doing things the 'right' way and criticize others for their thoughts and beliefs.

I was scrolling through my newsfeed one day and came across a post. 
"When did your child start crawling? My little girl is a year old and she has no desire to crawl."
 I stared blankly at the post for some time, wondering if I would comment. I wrote a comment, I deleted it. I rewrote it and deleted it again. I scrolled through all of the comments and realized that most of the children were crawling by 15 months.
I commented on the post and proudly said that my daughter is a healthy 20 month old and she isn't crawling yet. I talked about how we have begun to focus our attention elsewhere, on making sure that we encourage speech and verbal development. My comment received the most likes. I didn't really care if it had one like, I was clear that we were content with Adele's development.

In the beginning, I was focused on milestones and when my children should reach each one. How many words. When they should crawl. When they should walk. The charts, the diagrams the curves, the way it should be.

I was a part of all of these Down syndrome groups on Facebook, groups that should be celebrating achievements, yet so many parents were drawn to these charts and milestones. We live in a competitive world where we ask our friends and neighbours when their children achieved certain milestones and then grumble and show disappointment that our child is developing at their own pace. What's wrong with this? Celebrate each milestone and achievement, instead of focusing on when they should be reached. Relish in the beauty of each moment that makes your heart swell with pride instead of the disappointment that it was achieved months later then expected.

I have decided to take a huge step back. My 20 month old is not crawling yet. My 20 month old isn't close to walking. My 20 month old is behind according to the checklists. I have come to the realization that I am so incredibly blessed that we have a very healthy child. We are thankful that she has a healthy heart and that she looks at us with loving and beautiful eyes. Adele is very verbal; this is where we like to focus a lot of our attention. We love the sounds that she makes and how she laughs with all her might and how she plays so lovingly with her sister. We no longer focus on that she is not crawling. We focus on helping her build up muscle strength and teach her how to achieve these wonderful milestones. She will absolutely get to where she needs to be, in her own time. I used to get frustrated when people would say "oh, she'll get there." It was annoying. I don't need to hear from a mom of a typical child that my child with Down syndrome will get there in her own time. Actually, I still don't want to hear it.  HA! HA!!! Let's move on. :)

I look back at the past 20 months and truly, if I could tell myself one thing, it would be to relax. I feel like I have missed out on some beautiful moments because I was worried. I missed out some beautiful moments because I was so focused on charts and how things would take so much longer with Adele. I forgot to sit and savour the baby moments. I looked at the calendar and planned out vision appointments, hearing appointments, cardiology appointments, respiratory appointments and therapy appointments. I looked into the future with angst and worry instead of watching my baby develop into this amazing and beautiful child.

I am no longer asking others when their child started to crawl. I am no longer focused on when your little one started to walk. I am focused on my child. I am focused on working with Adele to take her to a place where she needs to be. I am working on staying in the moment and being receptive to what my child needs. I am being the best mom that I can be for my children. Adele is this wondrous and remarkable miracle that has shown us that we need to take a step back, take time during the day to breathe and relax and savour these moments. Time goes by so quickly and I am no longer going to let worry and fear take up my day.

Adele will do it all, in her own time. This is the beauty of Down syndrome.

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