One Second at a Time

Don’t compare her to anyone but herself. She will get there. Inchstones, not milestones. Give her time.

So many suggestions and advice (both welcomed AND uninvited) about how to navigate the unknown territory of a rare disease. It has been so kind of those around us to provide us with comfort that it will happen, that they are there as our support.

But the process, the waiting, every mundane minute of each day, feels endless and at times, to be quite frank, hopeless.

I never thought I would be a medical mother. I never thought I would celebrate the smallest of moments. I never thought that when my daughter, sat up unassisted for an extended period of time, I would feel the newest emotion that I have ever experienced in my lifetime. I wish, for once, I could find the words to explain it. As my child nears her second birthday, I find myself hoping that she will officially be an independent sitter.

She IS ALMOST THERE! While there is so much pride, hope, love, and joy watching her explore a new world from a different view, it comes with this new, unexplained sensation and sentiment.

I am sure there is a word to define my innermost, perplexing thoughts out there, somewhere. I am sure there is another person who cognizes this feeling. But until I can express it with clarity and understanding, it seems like an unknown, potentially damaging, emotion.

I am so unbelievably happy for my girl- and in the moments I spend watching her explore, conquer challenges, squeal in excitement, or high five me in delight; there is this other emotion that rounds it out- it is always lurking in the back of my mind, ready to pounce on the blissful feelings.  

Outside of our bubble, of course, reality exists.

She will be turning two years old on February 26. Most parents are busy planning and buying special gifts for their child. Maybe a bicycle, a new pair of sneakers, a new toy that they can run and climb on. You know, the age appropriate things.

But I am not that parent.

And that breaks me.

I am busy researching new beneficial toys- manipulatives that will make her stronger. These are not the gifts that I thought I would be purchasing.

 But again, that prowling sadness is making way- it is overpowering the fact that she is finally able to explore her world in a new seated position.

The all too overwhelming feeling of her not being typical consumes my euphoric thoughts. How do I explain this feeling? Bittersweet? No, that does not pinpoint the exact emotion. Sad? Nope.

Is this an emotion that simply cannot be understood, unless you have lived in my shoes?

While my friends and family celebrate their children’s’ milestones, I am humbly reminded that we are not. Inchstones…it is happening for her, but slowly, at a different pace. It is happening for her. It will happen for her.

I will abstain from using the cliché “one step at a time” because well, we aren’t there yet and she isn’t walking. That almost feels like a slap in the face, because if I were to simplify that idiom, it would be “sitting up one second at a time.”

 And while I often have to change the perspective of how I see things, I know the world will not do so. So instead of teaching Hailey about the world that is around her, the world will learn about Hailey, one second at a time.

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