This space. This blank page. Waiting for my thoughts to get out on the crisp white background. Yet, it’s remained blank. Almost the entire month. The greatest month. The month that I could be writing about all the amazing things that are Down syndrome and how it has changed my life. And yet, I haven’t.
Believe me, I’ve tried. I have sat down time more times than I can count to write about all the wonderful things I have experienced in these past couple of years that make Down syndrome so special to me and to our family. Something inside of me though, has kept me silent.
Maybe it’s fear. Maybe it’s the idea that I am not confident in my role as a mother across the board. Maybe it’s because of all the many things that have come up throughout the past couple of weeks with Bernadette that have me wading through more unknown territory. Maybe even part of it is comparison or FOMO or whatever.
Either way, whatever “it” is, I am done. I want to reclaim this space as the space that has been my own. The space that has become therapeutic to me and a space for me to shout the worth of my daughter and to help change the narrative around Down syndrome. My very own corner of the internet to tear down old stereotypes and encourage others along a similar journey to my own.
I want other mamas to read this and feel encouraged when they find themselves at the end of their rope. They are not alone and there are other mothers out there cheering them on. I want other mamas with a new diagnosis to have the courage to push back those feelings of isolation and to know they are not alone in their feelings either. The thoughts and feelings that are consuming them are ok to have and experience. There will be a day they will look back and see the unanswered questions present at the beginning of their journey when first hearing the words Down syndrome now have answers. The unknown will begin to become known and life will continue on pressing forward.
There will be hard days ahead. There will also be days where your heart will know more joy than you ever thought humanly possible.
You will learn how to laugh and cry simultaneously. It just becomes a part of life as you celebrate the milestones and cry over the hard work it took to get you to that place. And, it’s ok to have every single one of those emotions.
Some days, you won’t feel like doing any of the work your kid’s physical therapist had said to do each day that week. Other days, you will buy all the ingredients to make the new recipes your kid’s feeding therapist said to try out that week even though knowing your child will take one look at it and cry. It’s all part of the journey forward.
I’m rambling a bit, I know. But I also know that in this hot mess of thoughts, there is so much clarity for me. The encouragement that I can do hard. I have been doing hard for quite some time now whether I like it or not. There is also the thought knowing that I can make this space to fit my needs and you are all welcome to join me as I figure out what that looks like.
I also know that there have been plenty of days I have scoured the internet searching for answers like, how to get your child to wear a CPAP mask or what in world are adenoids anyway? And if they aren’t that important and can just be taken out in 15 minutes or less, why do we have them to begin with?
Being a mom is hard work. I am only six years in and only two of those have been as a mom with a child with different abilities. It’s a learning curve, that’s for sure. One that I am overjoyed to be on and yet simultaneously freaking out about.
Please know, you are welcome here too. All your thoughts and worries and concerns. The hardships and the celebrations. It may not be all tied up with a pretty bow, but it is our own journey. One that that we can encourage each other along the way.