I had this one to write awhile ago. It had depth and substance. It was relevant. Marley wore a glove from her elbow down to her fingertips. A type of compression sleeve that helped keep the new skin attached to her skin substitute layered over her muscle and bones. When she got her ace bandage and gauze wraps off she went into a co-wrap bandage that put compression to keep the fluid from filling up her arm and swelling. We wrapped so intricately around each individual finger then down her wrist to her elbow everyday. It was a lengthy ordeal and she didn’t like it. I usually had to nurse her while using both of my hands as fast as I could to wrap and rewrap until it fit snug but not too snug then nestle her in for sleep.
Then at OT Nicole said it was time to order the glove. She took precise measurements and we got to choose the color. A few short weeks later we were back at OT and it had arrived. A teeny tiny pink glove with navy blue stitching. I remember my heart bursting with excitement as she unwrapped Marley and stretched the fabric over the arm. It was so tight, but beautiful. I held back the fear that crept in that it was too tight and wouldn’t work. Nicole reassured me it would stretch out and be perfect. She was to wear the glove all day except in the tub and when we were stretching her or doing sensory touching. It became a part of her.
I ordered matching converse chuck taylors and this became our way of life. A simplified way to keep her arm covered and secure day in and day out. Sometimes I’d take it off and lay it down. Only once did I lose it for hours and pray and pray and pray that I found it. It had its place on my night stand or in my side pocket of my bag. It stretched out perfectly and she grew with it. Then one day months later it didn’t fit so well. And Marley kept trying to pull it off. She’d get ahold of the elbow and pull it down. I’m not sure if she didn’t like it or if she was just as curious to pull on anything touching her ie: hair bows! I found myself leaving it off a little more throughout the day. I loved when she touched my face with righty. I loved how slick her palm skin was. Smooth with fingerprints not present. It was twisted backwards but it was her and I liked seeing just her. When I had her 6 month pictures taken I forgot to take it off and I regretted it when I got the pictures back. They turned out so beautiful, but none showed that true part of her.
As summer strolled on she wore it less and less until come August and she didn’t wear it at all. It became this thing that consumed us. Did someone take it off to put on some lotion? Had she had it off since she woke up? Did someone put it on her after the bath? It was a stress producer and we all felt it. I started to notice how much she had grown. How once there were only divets where nails were not present and now she had three tiny little nail nubs. When we stopped putting it on she would stroke that arm. Perhaps she was aware it was different the way she grasped at her elbow skin- her most sensitive part. And thus we didn’t put on anymore. When we went to the doctor apt mid August they asked if she was wearing it and I said no. Did it not fit? I think so. Why? I didn’t have an answer. We felt it. In our hearts it wasn’t the cure. It wasn’t this “thing”. It was a tiny piece of stretchy pink fabric that had become threadbare and holey. It was time to retire it to her keepsake box along with her hospital band and heart monitor. She was free. One of the last times she wore it she was scootching across the floor attempting to crawl and righty slipped on the smooth floor. She smacked her head hard on the ground and that was it.
And thus, she is completely bare and completely her.
Then at OT Nicole said it was time to order the glove. She took precise measurements and we got to choose the color. A few short weeks later we were back at OT and it had arrived. A teeny tiny pink glove with navy blue stitching. I remember my heart bursting with excitement as she unwrapped Marley and stretched the fabric over the arm. It was so tight, but beautiful. I held back the fear that crept in that it was too tight and wouldn’t work. Nicole reassured me it would stretch out and be perfect. She was to wear the glove all day except in the tub and when we were stretching her or doing sensory touching. It became a part of her.
I ordered matching converse chuck taylors and this became our way of life. A simplified way to keep her arm covered and secure day in and day out. Sometimes I’d take it off and lay it down. Only once did I lose it for hours and pray and pray and pray that I found it. It had its place on my night stand or in my side pocket of my bag. It stretched out perfectly and she grew with it. Then one day months later it didn’t fit so well. And Marley kept trying to pull it off. She’d get ahold of the elbow and pull it down. I’m not sure if she didn’t like it or if she was just as curious to pull on anything touching her ie: hair bows! I found myself leaving it off a little more throughout the day. I loved when she touched my face with righty. I loved how slick her palm skin was. Smooth with fingerprints not present. It was twisted backwards but it was her and I liked seeing just her. When I had her 6 month pictures taken I forgot to take it off and I regretted it when I got the pictures back. They turned out so beautiful, but none showed that true part of her.
As summer strolled on she wore it less and less until come August and she didn’t wear it at all. It became this thing that consumed us. Did someone take it off to put on some lotion? Had she had it off since she woke up? Did someone put it on her after the bath? It was a stress producer and we all felt it. I started to notice how much she had grown. How once there were only divets where nails were not present and now she had three tiny little nail nubs. When we stopped putting it on she would stroke that arm. Perhaps she was aware it was different the way she grasped at her elbow skin- her most sensitive part. And thus we didn’t put on anymore. When we went to the doctor apt mid August they asked if she was wearing it and I said no. Did it not fit? I think so. Why? I didn’t have an answer. We felt it. In our hearts it wasn’t the cure. It wasn’t this “thing”. It was a tiny piece of stretchy pink fabric that had become threadbare and holey. It was time to retire it to her keepsake box along with her hospital band and heart monitor. She was free. One of the last times she wore it she was scootching across the floor attempting to crawl and righty slipped on the smooth floor. She smacked her head hard on the ground and that was it.
And thus, she is completely bare and completely her.
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