Birthday waves

The Oxford dictionary defines the word birthday as “the anniversary of the day on which a person was born, typically treated as an occasion for celebration and the giving of gifts.”

My child doesn’t care about gifts or balloons.

Age isn’t the same in our world.

Society views age with progress. A 3 year old does more than a 2 year old, a 5 year old can do more than a 4 year old.

Neurotypical children can’t wait to be a “big kid” and do “grown up things.”

Although birthdays in our home are filled with joy, the birthday song and a treat she loves, they are also filled with grief. A reminder of the milestones not met, the cognitive age and the skills we never imagined we would still be working on.

The world has expectations and societal

norms as you grow older. It is expected that a baby cries in a store when they don’t get what they want. But the looks given when that individual is no longer a baby aren’t met with the same grace and compassion by most.

Gifts are another hard part.

Audrey can’t tell us if she likes a new character or wants new clothes or a game. Her interests don’t change that often and when they do, it’s usually because we have exposed her to something new over and over

again.

Do we want to celebrate her, Of course! We celebrate her every single day!

But the actual days leading up to her birthday are filled with mixed emotions. One step closer to a future that we aren’t quite sure how to prepare for.

We will continue to celebrate her in ways that work for our little family.

Next Tuesday we will shout it for all to hear that our silly, sassy, beautifully amazing girl is ✨9✨

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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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