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Mastering Goals, in Her Own Time

Mastering Goals, in Her Own Time

From the moment I received my daughter’s rare genetic disorder diagnosis, I wondered if she would ever know her family.

Would she recognize us? Would she understand how deeply she was loved by us?

At age 11, watching her identify her family members on her communication device, I am confident that I have my answer.

Ryleigh absolutely knows her family and she deeply understands the concept of love.

I watch her touch the photo of her Daddy when I ask her, “Where is Daddy?” It’s obvious that he’s her #1 favorite, as a bright smile stretches across her face as she responds to my question.

It amazes me every single time. She can also point out a photo of me and one of her big brother, when asked to.

This feat may not mean a great deal to most, but to us, it is COLOSSAL. She has mastered a goal that we once feared to be far out of reach.

One year ago, we were striving to help her greet others by waving for “hello” and “goodbye.”

A skill that babies learn very early on was a challenging goal that required much motor planning and coordination for our girl.

We practiced with a photocopy of her own hand; a symbol that she could hold up in her therapy sessions to greet her Speech Therapist.

One morning, after many tedious months of practice and repetition, my heart melted into a puddle at what I witnessed.

As we had done countless times before, my husband and I took turns exclaiming, “Hey Ryleigh!” We waited, giving a patient pause.

Suddenly, she raised her little hand and purposefully and methodically moved her tiny fingers up and down.

She was waving to say “Hello” to us! It was a completely magical and beautiful sight. Without any words, she told us so much with this most meaningful gesture.

As a parent of a child with physical and intellectual disabilities, I still have BIG dreams for her. No diagnosis could ever change that.

Our goals and dreams simply look different than those held by other parents. There are goals that we’ve diligently worked towards for many years; they’ll likely take many more years to master.

Progress comes slowly, but steadily.

In her own time. Watching her walk independently someday, without a walker or her orthotics, is a lofty aspiration.

I see it vividly in my dreams. I fiercely hold onto hope that it will eventually happen.

One of my most favorite quotes is, “Believe in your child so much that the world thinks you’re crazy. Then, believe more.” I’ll keep that as my mantra and celebrate every inch forward, as she continues to astonish us.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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