8 June 2015

I Am NOT Down Syndrome!


I feel like I haven't written about Down syndrome in a long time. It's funny because I started the blog with full intentions on just writing about our journey with Down syndrome, but it turned into so much more. I started the blog after we found out about Adele's diagnosis, that was around April 2013. I have written just over 200 posts, with over 200 000 views. I am so thankful to those of you who have followed along on this journey with our family.

In the last two months, I have turned a corner when it comes to Down syndrome. Adele is 22 months old and a fiery, spicy little girl. Up until this point, I have focused so much of my attention on Down syndrome and all that it entails, that I have forgotten that she is just a little girl. I have focused my attention on therapy, vision appointments, hearing appointments and feeding schedules. I have forgotten that she is just a little girl. I have focused my attention on the future; school, friends and life. I have forgotten that she is just a little girl.

Recently, Adele has really found herself. She is coming into her own. She is figuring out who she is, what works for her and how she fits in with our family. This is all within the past couple of months. Before this, I was focusing on the delays (although I claimed that I was just taking it day by day) and how we could get Adele caught up, get her to where she needs to be. What I have recently realized, she is where she needs to be. She is content. She is still not crawling and she is not ready to start running around the house, but she is one verbal kid. She is able to express herself, sign what she needs and uses lots of 'words' with her sister. She is not frustrated, nor are we. She is energetic and full of spirit, life and joy.


In these past two months, I have seen Adele transition from a baby to a little girl. Brinley and Adele play together, wrestle together and laugh together. They are playmates and I can see a beautiful friendship and bond forming between the two girls. I didn't see this before because I was so focused on what we needed to get done, where we needed to be and how we would get there.

I have read the saying many times over 'I Am Not Down Syndrome' and to be honest, it kind of bothered me. I didn't think that it was something that we needed to shout from the rooftops. Why would we, as parents, put our child on display and tell others that Down syndrome does not define them?
But alas, some of us need the reminder and it's obvious that I needed it. I think that sometimes we shout all of these things to others, start up Facebook pages, write blogs, but it's us who feels the insecurities. We fear the diagnosis and what it entails. We feel that if we yell at the world enough times, it will make us feel better and more secure and comfortable with Down syndrome. When we join the Facebook groups, we brag, ask questions and reassure others that our world is how it should be, a beautiful and wonderful journey. We put on a happy face for others and tell them that we are ok and that everything is how it should be; yet, behind closed doors, we cry, we confide in our partner that we are scared. As a specials needs' parent, I am not looking to be put on a pedestal or given a hug each time you see me, but I want you to know that it's sometimes really hard. It's sometimes overwhelming and sometimes you fear the worst. I don't always need to be the strong parent, the one who shouts from the rooftops that I have it all together, that I am confident with all of my decisions and that I feel ok when I think about Adele's future. I am not always sure, I am not always ok with the diagnosis, I am not always the best advocate for our children, but I am trying and I feel blessed to be surrounded by an amazing group of moms who are going through a similar journey.


As I move forward, as Adele gets bigger and stronger and smarter, I am learning to face the day with love and patience. I am learning to accept things as they are and to allow my children to be who they need to be. I am confident that Adele will be ok, but I also have moments where the worry takes over and I feel almost breathless and unable to cope with the thoughts about the future. It's such a whirlwind of emotions, with amazing and beautiful moments combined with fear and worry.

I came across a post today that I want to share with you from The New Family ......
"I quickly learned that having a child with extraordinary needs means needing an extraordinary family.....I have always thought of my family as the people you can count on to pull you through in tough times, celebrate the good, root for you when you're going for gold and inspire you to be your best self. Two and a half years ago, I thought all of that had to come from under our own roof, but I've learned since that, at least for us, the opposite is true. There are countless people in our family now and for that, I'm so very grateful. Although, it's Alma that's drawn everyone in, we're all better for it." Melanie Coté


This journey is about working together and supporting one another. We will celebrate together and offer words of encouragement and support along the way, but we will also cry on each other's shoulders and share our fears and worries. I don't want these moments to fly by. I don't want my days to be focused on when we will hit our next milestone. I want to love the time that I have with my two girls and feel reassured that this was the journey that was given to me, embrace it. We will climb this mountain and when we reach the top, I'm going to sit down with the biggest rum and coke and celebrate. We've got this.....most of the time. :)
It will all be ok.
 







2 comments :

  1. Lovely post! Thank you for your candor. I'm so glad you found Melanie's post in the #1000families series on thenewfamily.com relevant. Thank you so much for sharing it with your readers!

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    1. Thank you Brandie. I've connected with Melanie, which is nice. Love the idea of #1000families. :)
      Krista

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