Almost 2020

This past year we have seen so much improvement with Audrey’s mobility. We have also seen her frustration levels go up due to not having an effective way of communicating. It’s hard. Really, really hard.

It’s hard to see my friends and family watch their kids grow into these little humans that are able to experience so much more than my precious girl can.

It’s hard to give up on the traditions you thought you would do as a family.

It’s hard to accept that no matter how much you want to go to that holiday event, you probably can’t swing it.

So you choose the important ones carefully with escape routes mapped out, early exits and food planned.

My circle has gotten smaller. Some days this makes me sad but other days I know that the ones who have stood by us and consciously still make the effort are the ones I want in my life.

To these close family and friends: I encourage you to continue to include us even when 90% of the time we have to say no, or come solo.

Please know that we want to be there. Please know that sometimes the logistics that go into accommodating Audrey’s needs don’t make the actual event worth it. We have to choose wisely.

Prioritizing our marriage and our own hobbies usually take the back burner these days. We know it isn’t good but that is the phase of life we are currently in (as most parents are).

As always, I am not saying any of this for sympathy. We have a beautiful, silly and medically healthy child who

loves exploring this world and continues to make small gains. Unfortunately, the world isn’t always designed to let her navigate it appropriately.

Big changes will be happening next fall for Audrey so I’m looking forward to soaking in this last half year of preschool.

Kinder is a whole new ball game… one I’m terrified of. One that I know very little about.

So many new programs and staff.

I know we will get through it though just as we have the last four years.

Happy holidays!

Hoping for a healthy new year where we continue to #kickCASK.

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