Rhanas Journey
Strength is not always measured in muscle
 
 

"A positive attitude makes all the difference."

-Rhana (December 26th, 2012)

 

Throughout this whole process it has been awesome to watch my daughter maintain her positive attitude. I don’t think I could be as strong or as brave as her. She’s teaching me patience.

Here are a few of her own words, I’m keeping a journal and she’s said a lot more but I wanted to get a few up before I curled up on the hospital chair for sleep.

Also, please note that when I say she "said" these things, what I really mean is she painstakingly mouthed them with a breathing tube as she was and continues to be unable to make sound. Needless to say my lip reading skills have vastly improved.

 

When I cried and told her I was so sorry she had a bad day (she was in and out of excruciating level 10 pain)

“don’t feel bad for bad days, mom, they make you stronger”

“pain just means you’re working hard”

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On day 7 she was quiet and when she came out of her reverie:

“life changes so fast, huh, mom? Isn’t it crazy?”

“One minute you’re laughing and running and the next you’re paralyzed and unable to breathe.”

She didn’t say this with sadness or remorse mind you, but rather a quiet awe.

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On the morning of her tracheotomy surgery we were talking about what we’d do with this experience, how could we turn it into something good:

“I want to write a book so one day I can help some other little boy or girl going through this. You tell me ‘I know’ to soothe me, mom but you don’t know. Nobody knows. I want to help someone going through this because I do know.”

After the trache she asked the Doctor how her “Tube necklace looked?”

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I was reading and I thought she was napping when she smacked her lips to get my attention:

“a positive attitude is so important, it’s everything”

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When she asked if she was ever going to walk again, I answered “I don’t know the answer to that honey but we were going to give it everything we’ve got” she replied:

 “I didn’t become a gymnast over night, it took hard work. I’m not afraid of hard work.”

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With regards to our next step:

 “I wonder what kind of equipment the rehab in Boston will have?”

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On day 4 she said, "that noise makes me so sad" I asked, "what noise?" She replied," The ambulance siren.I know what it feels like to be in it and scared and I pray they are OK"

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She asked a question no parent wants to have to answer, "Will I need a wheelchair?" I told her "probably yes, just until we get you strong again." She broke into the biggest grin and said, "Can I bling it out? I want it to sparkle, you can never have too much sparkle."

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Last night we were talking and she said she missed school. I asked her what she missed the most, I thought her answer would be her friends or Science class or Social Studies but she took some time in answering and replied with, "learning. I miss learning the most."

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She got her tracheotomy and this is a good thing. It's one step closer to her eating and drinking. I asked her what she wanted to eat and drink when she could. Her reply, "a coke. I'm dying for a coke and a cookie"

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Everytime she shifts or moves her Trache tube "pops off" the first few times were very scary but now (while heart dropping for me) she seems to understand that she is safe and that it's more of an annoyance, she said, "the design of this is just wrong, we need to work on a better design so people don't have to go through this."

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She woke up and said, "today is not going to be a good day....it's going to be a GREAT day!

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The morning of January 1st, 2013 I bent and kissed her good morning..

"You have the worst dragon breath mom!" ha! I cheered because until now she had no sense of smell! Looks like I'll have to watch my breath from now on :)

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"you gotta do what you gotta do"

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When they put her on the tilt table and she was at 50 degrees she was in pain. the nurses asked her if she wanted to stop, knowing how long a process it is to get her from her bed and onto the table, she replied with, "no, I'll suck it up, let's go higher"

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When she was finally able to eat solids she made up for lost time, she was laughing about her "food baby" later in the day she asked if it was a boy or a girl? hehe

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with regards to red velvet cupcakes, "it's heaven in my mouth!"

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"some things should never be puréed, sausage is one of them!"

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"I miss the little things." I miss hugging people. I just want to touch things again"

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"Why did this happen to me?" Her daddy replied with, "Life is not always fair, honey, but someday this experience may serve you more than you can imagine right now." She nodded and asked if she could have a cookie.

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When her friend told her that her seat at the lunch table was taken she said she would probably have to eat with the kids that have special needs. I later asked her if she knew any of those children, she replied with, "Not yet, but I am looking forward to meeting them"

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I asked her yesterday what she wanted to be when she grew up, "a Nurse. They make all the difference and work the hardest."

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Her Pediatrician Doctor came into her room and asked how she was feeling. "I feel fabulous!" she said. Her enthusiasm nearly knocked him over ;)

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when we told her we were going to start a foundation for her she lit up. It's a foundation for her to help others, in her name. she said, "I really want to help kids in ICU and rehab, kids with traches"

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We told her we have a ramp van coming for a demo she asked if she had to go straight home when she's finally released. We asked where she wanted to go? "SCMC, I want to go back to the gym"

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A fellow patient was resistant to doing her PT, Rhana said, "you can do this, I'll walk with you, you got this. We'll do it together."