A mom in armor holds a shield and a sword and stands in front of her child in a wheelchair

Tough Days

Last updated: July 2022

Some mornings you wake up and you just know the day is going to be tough.

You want to stay in bed, in the warm comfort of your home, and in my case, with an 18-year-old grumpy cat laying on my chest, keeping me hostage. Going out to face the world, and the information it’s going to throw at you, seems so daunting and exhausting.

Dreading a doctor's appointment

My daughter has an appointment in a few hours with an orthopedic spine surgeon. Her scoliosis has progressed rapidly in 6 months. This change was picked up by chance a few months ago in a lung x-ray that was checking for pneumonia.

A few months ago. It took that long to get an appointment to see the spine surgeon to evaluate the next steps. Have I been in a fight or flight panic since then...yes?

Hard to be proactive

I advocated to get her x-ray sooner than immediately before her appointment today. She had it done a few weeks ago, and then we were able to discuss the changes in her mini-muscle clinic appointment.

Clinic days happen twice a year, we meet with all her teams back-to-back, eliminating the need to come in for 8 separate appointments. It’s a LONG day, but effective and efficient.

However, the orthopedic scheduler didn’t understand my need for the X-ray to be done sooner. She was very firm that no one would discuss the results with me prior - even when I shared the urgency, and the need for more information prior to going to the annual SMA conference. To her, my child was just a number, the next in line.

Advocating for an appropriate timeline

So with X-rays complete at my insistence, all her specialists were able to review them while we were with them. They had the information they needed to be pro-active with our appointment time.  Advocating for your own timeline is important. You know your child. You know what is time-sensitive.

With our SMA kiddos - it is ALL time-sensitive. Rapid progression on anything can put them on a track that they may not recoup from.

It is urgent

Speak up, insist, be confident and respectful, but relay the urgency, find a solution.

Prepared for today's worst

Back to today. It’s meet the orthopedic surgeon day to discuss progression. But I’m ready. I’ve gathered information on the spinal rod surgery options, I’ve watched sessions and listened to specialists to educate myself. I know my daughter's previous scoliosis percentages, I know what they are now. I’ve learned what has caused this progression.

I am ready and I am prepared. I will not be caught off guard. I know what the worst news is that I can hear today, and I know the best news. I'm ready for either.

It’s time to get out of bed. To put on my momma armor, load up the car with the wheelchair, the car potty, the snacks, and tablet. I’m ready to listen and not panic. I’m ready to stand up for her. I’m ready to model for her how we handle tough days and tough news.

Let’s go.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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