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Great Expectations

Great Expectations

I have really struggled with letting go of the image of the typical childhood I would provide for my daughter. 

As another year passes, we set aside space in her bedroom for more things appropriate for her needs.

Her pastel mermaid themed bedroom is filled with a mixture of stuffed animals and heavy medical equipment.

When you open her closet it has frilly dresses and syringes.

It all feels like a huge juxtaposition, and nowhere near what I anticipated my child’s room to be. 

We opted for a toddler floor bed, but I can feel the time coming near for needing a medical bed more suited to our situation.

It is getting harder and harder to place her down for bed as she grows.

Also, she needs a lot of the safety elements a medical bed can provide, as opposed to a typical bed.

We have procrastinated moving in this direction because honestly, having a typical toddler bed for the time being felt like a tiny slice of normalcy; if only for a fleeting moment. 

We are also in the process of getting her a wheelchair. Bittersweet is the only word I can say to describe the emotions I feel with this.

I am not the type to bury my head in the sand, so from the time she was a small baby I knew this would inevitably be a part of our lives.

It is still a tough pill to swallow. Something feels very finite about it.

Of course we always want to move forward, and we know a wheelchair is another stepping stone towards independence.

It is still a hard fact to come to terms with all the same. Something about it just makes the reality feel more concrete.

With all this being said I don’t want this to come across as if I am disappointed in my daughter in any way.

She is perfection in my eyes, which is why this all hurts so much more.

As a parent we want the very best for our children. We want them to have better and to live without struggle.

I would give anything to be able to fix this all for her. 

I have to learn to be able to differentiate between the image of a “happy childhood” and the tools I will need in order for my child to live a more fulfilled life.

It’s hard not to be affected by the stark contrast of our family and those around us, but it is a reality I must make peace with.

The cards are stacked against us, and I have to give her all the tools she needs to thrive. 

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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