The world runs while we crawl

Today I took Audrey to get fitted for a new wheelchair. We have had a lot of adaptive equipment for her over the years but not yet this specific type.This comes with many mixed emotions for me. On one hand, I’m thrilled to have something to bring with me to appointments and outings that isn’t as big and bulky as our current adaptive stroller. Another bonus is that this will allow her to be able to use it more in public. We can attach a tray which will be useful in restaurants, something we currently struggle with since she’s too long for the high chairs that are provided!

On the other hand, each one of these appointments are like a reality check to me. I know the life we live but afternoons like these really magnify the fact that we are getting deeper into the world of disability.

If you watch us on social media, you may wonder why we are wanting this chair for Audrey. Due to her low muscle tone, she fatigues quickly these days despite always wanting to move. My hope is that she learns that her chair can be used to help her, letting her body rest when she needs it. Audrey is growing taller and too heavy for me to carry around these days. I knew it was coming but can’t believe we are here already. Our reality is something I never could have imagined. These past few months, there has been quite a bit of loss and hard times within our CASK community. This hits hard and way too close to home.

The world seems to keep moving in a way that we just keep falling more and more behind in. Accommodations are harder to come by and there are few scenarios where disability isn’t screaming at the top of its lungs.

I feel like I have grown so much in acceptance this past year but grief always finds a way in and usually at an inconvenient time.

I think the hardest part still though is the lack of communication. It’s hard to know how much of this world Audrey gets but I know she sure has a lot to say about it. I continue to try to make sure her voice is heard but it doesn’t seem to be much of a win lately. There has been lots of frustration for both of us, especially during school breaks.

I always try to end these updates with some positives so here we go :

-The special needs moms I have met this past year across the globe are inspirational people that I admire and truly can’t imagine my life without them now!

-I am attending my first ever special needs mom retreat this coming May which I am very much looking forward to!

-We are headed in the right direction to getting Audrey her therapy dog. We have one last interview this coming April and then should know when we will get a dog after that!

-Last but not least is the possibility of a wonderful school program Audrey may get to attend next year. It’s still in the works and honestly seems too good to be true so keep all the positive vibes coming our way in hopes that it becomes our reality!

CASK seems to be kicking us down a bit lately but we will continue to get back up one day at a time!