Different

As I lay here putting my almost 5 year old to bed (still on my chest), I can’t help but reflect on the day.

I dropped Audrey off at school, picked her up, fed lunch and headed out for a long walk to the park where she only wanted to swing. (We are in a big swing phase)

At the park there were two little girls about Audrey’s age. I watched as they laughed and swung together on the “big girl swings.”

Audrey instantly lit up when they came over, she loves watching other children play. As I pushed her on the bucket swing, I couldn’t help but wonder what she was thinking. Was she trying to talk to those girls? Was that what the giggles and smiles were about?

After a particularly loud squeal from Audrey, one of the little girls said to me “ I have a baby sister.” I asked her how old and she said “she’s two.”

This broke my heart a bit because I realized she was telling me this thinking Audrey was a “baby” just like her sister.

There were no follow up comments or questions but I felt the urge to explain that Audrey wasn’t a baby. That she was swinging in the bucket swings because she loves them and needs a little extra support. That her squeals weren’t baby squeals but that was how she was letting us know she was happy.

Of course I didn’t do any of that. All I did was smile and wave at them as I put Audrey back into the stroller.

On the walk home, I couldn’t stop thinking about what that little girl’s day might look like. How different it must be from ours.

When we got home, I spoon fed Audrey her snack and then got her changed for her afternoon therapy session.

The level of support my child still needs is something I never pictured as a mom but here we are in this different world of ours.

The world of teaching self help skills, researching therapies that may help, appointments for new orthotics, watching the same two shows year after year and very little sleep.

But it’s also a world filled with so many snuggles, park dates on the bucket swings and endless dance parties.

My hope is that one day I can share with others that different is just that. Not better, not worse, just different ❤️

Author: Rachel Alves

Hi there! I am a special needs mom to a beautiful, sweet girl. Audrey has a mutation on her CASK Gene. This is a rare genetic disorder that effects her globally. It has caused a seizure disorder as well as gross motor, fine motor and speech delays. A Microcephaly diagnosis comes along with it as well. Our last 8 years have been filled with therapy, learning about our daughter's disorder and also learning to cope while finding joy. Thank you for taking the time to read about our journey. For more information on the CASK Gene, please visit my Instagram @alvesmomkickingCASK. View all posts by Rachel Alves