Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Five For Friday 9/20/13

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 3 Days of Home Rehab. Treadmill, light weights, glute & scap fires, & balance work.
  • I had prolotherapy on my upper back, neck, and jaw on Friday. I will dedicate a blog post to that later (hopefully today).

2. I had the reminder this week that sometimes the “hardest” children in your class are the ones who need the most love.  This child, bless his little soul, has been challenging since day one. I have gone home each night trying to rack my brain of ways to get through his tough, “you can’t tell me what to do,” “my Dad says I don’t have to do what you say,” “You can’t make me” exterior. There have been days my patience has been very short with this behavior. Well, last Wednesday I was packing up my things like I usually do around 12:30 to leave for the day to go do my therapy. I said goodbye to the kids like I usually do and started walking out the door.  Suddenly, this “tough” little guy was running up behind me crying, saying, “Don’t leave, don’t leave, don’t leave. Take me with you. I want to live with you. I want you to be my Mommy.” Knowing full well this child does not have a Mom and has had a hard time in his short five years, I gently took his hand and we went out into the hall. I explained to him why I had to leave, that I would be back every morning, and that I needed him to be at school all day so he could learn lots so he could get to be a police officer one day (what he told me he wants to be when he grows up).  We talked about how lucky he was that he got to live with his Dad, and we talked about the importance of respect and what it looks like. He calmed down and I gave him a hug, and told him what we would do in the morning.  He hugged me back and went back into the classroom. It was my turn to have tears in my eyes. Baby steps. I realized that maybe we are actually getting somewhere. Sometimes those tough guys just need someone they can trust who loves them back.

3. I am looking forward to feeling like I can balance everything better again so I can get back to doing more foundation work.  Donations continue to come in from the family in Australia who lost their loved one to EDS type 4.  This weekend I will write a check to EDS Network CARES for their project of funding research for type 4 EDS. We are so thankful for the donations and acts of support that continue to help us carry out our mission.  Allie is also in the process of organizing a Life as a Zebra Foundation, “Zebra Day Fundraiser” at Virginia Commonwealth University to raise awareness and funds for invisible illnesses. I am also thankful she is my partner in all of this.

4.  Speaking of Allie, she got news this week that made my family’s whole year. She is still in remission with her PAN Vasculitis! Such a beautiful thing. Thank you God.

5.  I saw this on someone’s page and fell in love. Thought I’d share. Awesome.

we are all wonderwomen

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Comments (1)

  • Kathleen Meeker

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    I am eager to hear more about your experiences with prolotherapy. The surgeons have all told us there is no hope for my 13 year old granddaughter’s shoulders, that they are just too far gone for surgery to be of any use. Physical therapy has produced little, if no, benefit. We do water therapy 3 days a week but it is hard to keep her interested when she really can see no progress. No one has ever mentioned prolotherapy and I’m wondering if that might be an option for her.

    I am so proud of you for the way you handled the little boy in your class. When he grows up to be a police officer, I am sure he will remember the influence you had on his life.

    May God continue to bless you the way you bless others each day.

    Reply

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