• Ali Isaac

Life’s Little Victories

Updated: Mar 11, 2020

Me and my girl

I have a lot to be thankful for today. Carys has a new physiotherapist. I really like her because she cares about Carys, she works with her, not against her. She smiles and sings songs to get Carys comfortable. After only a few sessions, she has already found out which was Carys’s favourite nursery rhyme.

When she rang me and said, “I’m ordering a review of Carys’s AFO’s. I’m concerned about the marks they’re causing on her ankles, and she’s not walking well in them,” I almost burst into tears… so I wasn’t a paranoid mother, after all. At last, someone was listening to me. It was a small, but important victory.

Yesterday, we had that review, and the physiotherapist actually came with us. It turns out the fit is not right, and the AFO’s have been sent for adjustment. We have a plan in place; if in 4-6 weeks, she is still not able to use them, she will be recast for new ones using a thinner, lighter plastic moulded to enclose more of her ankle.

The previous physiotherapist had told me that Carys just had to endure them regardless. I wonder how long it would have been before Carys gave up trying to walk completely because of the pain her AFO’s caused her.

As if that wasn’t good news enough, I was also told that Carys is walking well without her AFO’s, and that she must spend part of each day walking without them. The little victories were coming thick and fast.

When I got home, I rang Conor with the good news. He said a lovely and unexpected thing to me. He said, “To be fair, Ali, every time you have had a concern about Carys, you have been right.”

It’s not very often that I’m speechless, but that did it.

The other day, I found a shampoo online that doesn’t need to be used with water. Who knew you could get such things? You massage it into dry hair and towel dry. Last night we gave it a try; Carys lay on her bedroom floor with her head in my lap, listening to her favourite music, and giggled while I massaged this new shampoo into her hair. Five minutes, job done, hair clean and sweetly scented of apples.

This morning, I showed Carys her toothbrush. She smiled and opened her mouth wide while I brushed and brushed and brushed.

In themselves, these are tiny victories, but their impact is huge. The triumph of many seemingly insignificant little battles often win the war.

#CFC #specialneeds #DrBarmanstoothbrush #AFos #anklefootorthotics #toweloffshampoonowaterrequired #sensoryneeds #physiotherapy #flavourlessnonfoamingtoothpaste #physiotherapist #raredisease #CardiofaciocutaneousSyndrome #Carys

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