Hope

From the second I found out we were pregnant, I tried to do what I thought would be best for our child. I tried to be healthy, I tried to be safe, I tried to think about all the experiences we would have that would make her a well rounded individual.

Then I became a special needs parent. SURPRISE!

Throw almost every idea out the window on what you thought you would worry about. Now my focus is on raising awareness, therapy goals and things like her calorie intake, how many minutes a day she should be standing and SO MUCH RESEARCH.

I am constantly researching.

I research sleep methods, medications, supplements of all sorts, toys that promote fine and gross motor development. You name

It, I have probably researched it. This can be so overwhelming and draining for many reasons but mostly because the thing I’m researching usually is a crapshoot.

With a rare diagnosis, we deal with a lot of trial and error. This therapy MAY help, let’s do it. This medication/supplement MAY work wonders why not try?

The downside (and upside) to all of this research is no matter how many times I tell myself that this new “thing” will not be life changing, I still slightly get my hopes up. There is still a part of me that wants there to be a magic pill that would take away all the struggle Audrey has to go through. Reality always sets in (rather quickly) and I know how silly this is. But hope and Audrey’s contagious giggles are the only two things that keep me researching. ❤️

Every parent wants to do what’s best for their child. Learning to shift my mindset on what is “best” for Audrey is something I’m always working on. Learning to accept and be happy with those tiny gains has opened my world and heart in so many ways but like anyone, some days I power through and pat myself on the back for being productive, other days I envy other parents.

Every person has their own journey which has bumps along the way. I guess as a parent, you never really know what those bumps are going to look like. Today I will remind myself to *hope* for the strength to keep hoping so we can 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