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A work in progress

A work in progress

When my daughter was born, her doctors gave us the expectation that she’d have very little purposeful movement or abilities.

Since that time, she has defied all odds and has slowly improved her cognitive abilities and fine motor skills.

She never ceases to amaze me, but sometimes it still doesn’t feel like it’s enough for the world around us.

Milestones do not come easy for a child that struggles with delays, so when you finally manage to hit one, you want to shout it from the rooftops.

However, often times you are met with the dreaded “what’s next”.

Usually not so directly, but you always know what is being implied.

When she took her first steps in her gait trainer, I was almost immediately asked when she would start walking independently. My heart sunk.

We will always work toward that goal, but I know there is a strong possibility it may never happen. All I wanted was to savor that moment we had worked so hard to achieve before looking forward into the unknown of the future again.

She is also almost completely tube fed. The concept of a toddler not enjoying candy or sweets is a hard one for people to reconcile in their minds.

In all honesty, even if she could eat orally, she would have zero interest in foods.

She has been cleared by her doctors to try eating thicker purees, but due to her extreme oral aversion she has no desire to even try.

We’ve tried every therapy, and even bribes of chocolate to no avail. I’m frequently asked if we are any closer to oral eating. My answer is always “any time between now and never”.

In the beginning, I did a lot of mental gymnastics to remain optimistic.

I envisioned doing the work needed to rehabilitate her and having the story book outcome of a physically abled child, but that is not reality.

As time passes, I’m getting a better perspective of our future. It takes time to come to terms with unmet expectations and to grieve the loss of the life you anticipated, but I feel like we have grown together.

I’m definitely not the same person I was prior to having her in my life.

In a perfect world she would grow up completely independent, but the reality is that she will depend heavily on the village around her.

With every accomplishment she achieves, I want her to grow confident in herself; even if it is not the same achievements as her peers.

I don’t want the world to make her feel as if she is not enough, and her best will always be more than enough for me.

Firefly Blog

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

Sarah Kirkpatrick

Meet Our Blogger

My name is Sarah Kirkpatrick. I am a hair stylist from Alabama. I have one amazing daughter who has quad cerebral, dystonia, and HIE. I love all things art, music and cats.

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