Progress over perfection

When I found out I was pregnant, never in my wildest dreams did I imagine a non speaking child, a child that needs mobility devices, orthotics, specialists in almost every area of development. I call that privilege. And being naive. If you haven’t experienced it, why would you imagine that world? I even worked in special education a few years before having Audrey and I still was in complete denial that this world could be my reality.

No doubt it is hard, it takes great strength to press on each day to fight, educate, advocate. Sometimes I wonder what it would be like to not have these obstacles (okay maybe more than sometimes…).

But one thing I have learned about being a parent to a disabled child is that growth in MYSELF is more important than any milestone my child may or may not meet.

Each day, I learn to embrace navigating this unique world we are living just a little more.

My precious, beautiful, funny and resilient child has taught me more than I could have ever imagined these past seven years.

I strive to be a better human for her. Some days that is easier to do than others but none the less, I am always working at it!

Progress over perfection is a great motto to have especially in parenting.

If you would have told me at the time of Audrey’s diagnosis that we would be getting her a feeding chair with all the “extras” on it at the age of 7, I would of been heartbroken, probably would of cried for days.

But yesterday when her chair arrived and the nice man helped me adjust it for her, I smiled with pride!

Knowing that we have a secure, safe place for Audrey to eat and take a rest makes me so happy and relieved!

I was actually excited to put her in the chair this morning for breakfast and wheel her up to our island.

This is progress for me and I will take it!

This parenting gig sure is a rollercoaster, one I am so lucky to be on.

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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.

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