Living by our Mantra

I started a mantra with Elliott when he was a baby that I would say every day before bed and nap time. As he has started talking, he says parts of this mantra with me. These are words I want him to live by, no matter the circumstance. Words I want him to believe to his core, and words, I am learning, I need to believe to my core as well.

I am strong

I am capable

I can do anything

I have said this once, and I’ll say it again, but nothing can prepare you for any of this. I have read recently that grief is like an ocean. Sometimes the waters are calm and other times the waves feel big and overwhelming–the only thing you can do is learn to swim. Lately, the grief of this diagnosis has felt big and overwhelming and I’m just keeping my head afloat.

We are out of the cast phase and have moved into his AFO (ankle-foot orthosis) Brace. This process has been much more difficult of an adjustment than I planned on, especially from a logistical standpoint. The great news is that overall this is not slowing Elliott down much and he is adapting to this new normal much quicker and easier than I am.

The second cast removal was not fun. Elliott knew what to expect and screamed and kicked the entire time. As soon as the cast came off the tech immediately warned me that the blisters on the bottom of his feet were normal and a result of sweat and very little air over the last two weeks. She assured me they would improve almost immediately with fresh air. She was right, but when I first saw it myself, my heart dropped to my stomach.

His poor foot was so dirty and smelled so bad. I was trying to clean it, but he was fighting me, telling me it hurt and didn’t want me to touch the bottom of his foot. It was hard. I didn’t want to cause pain, but it needed to be cleaned. He didn’t want to be touched.

We moved onto getting his brace at Hangar Clinic across the hall and neither of us knew what to expect.

He picked a solid red color for his brace. They showed it to him, but hadn’t cut down the toe piece to fit his foot, so it looked huge! The doctor put it on him while he was sitting on my lap. He started kicking and crying and a single tear fell onto my arm. That tear was the straw that broke the camels back. I was trying to stay composed and collected for him, but this single tear sent me over the edge.

I got choked up and was holding back all my own tears in the world, just wishing that it was me they were putting this brace on instead of him.

The doctor had to do some minor adjustments on the brace to make sure that it fit properly and was not rubbing his skin anywhere it shouldn’t be. While they were making changes to the brace, I flipped him around on my lap and told him I wanted to talk to him.

Without question, he turned around to face me and in a sheepish, quiet voice said, “yeah..”

It was in that moment, I knew how much we both needed some reassurance and encouragement. I told him how proud I was of him, how hard I recognized this appointment was and how awesome I thought his super red power brace was going to be.

I reminded him of our mantra, and we said it together while we sat alone in the room.

I am strong

I am capable

I can do anything

I felt a weight lift off of both of us in that moment.

Immediately after we said those words together, he pulled the mask down off my face and gave me a smile. I responded with a, “yeah get this thing off my face!” I ripped it off my face and he started laughing.

I gave him a long hug and didn’t let go until he pulled away.

There is A-LOT to still figure out. It’s easy to play the ‘coulda woulda shoulda’ game over and over in my head. I wish I would have known that this brace process would have been a bit more exhaustive. I wish I would have prepared more so that I wouldn’t feel so blindsided. I wish I knew that this is not as simple as putting a brace on his leg and calling it a day, especially when he only has an AFO on one foot. I wish I would have planned for the right shoes, known how this would impact his walking, known that I need to keep a constant eye on red spots and blisters under the brace, or known that the new gait of his walk can cause pain in his hips. I wish, I wish, I wish.

I am still very much in this process of figuring out our new normal. I will eventually go into more of the details of what I have learned, what we have done, and what is working. However, right now I don’t have all of those answers. What I DO know, is that although this is not easy, it is doable.

Time and time again I see Elliott’s resilience, support and love from our friends and family and other moms from the CP community navigating similar situations. I am reminded that I am not alone in this process and truthfully, that is what means everything right now.