"Suffering the Slings and Arrows of Outrageous Fortune"

But, my kid is pretty amazing. Growing up is challenging under the best of circumstances – adding EDS to that mix complicates things exponentially. Em has had a rough and tumble couple of weeks – physically and emotionally. The conference was physically demanding but emotionally rewarding. I was so proud of how she handled herself and the strides she made in owning her EDS. That was a huge step and a positive one, from all indications. We have had some great conversations in the days following the conference and I know she learned a lot.

Then, this weekend, one of her good friends was in an car accident, ending up with some serious injuries and spending some time in the hospital. We are all very grateful that she is alive and will hopefully come home today, but it was quite a blow to Emily’s anxiety and general sense of well being. Em wrote a lovely post about her friend on her blog and I was blown away by her ability to verbalize her feelings.

Another big step she has taken is joining Inspire. I am so proud that she is ready to communicate with other EDSers. She can learn a lot from them and she has a lot to offer in return. Which, of course, is the beauty of online support groups. However, writing about herself was understandably emotional for her and we had to sort of wade through that trauma. It was a hard but probably necessary time and I was so proud of her.

This week looks to hold more pain and emotion that we are going to have to face.

First, this is Fair Week. If you live in Darke County, you understand what that means. If you don’t live in Darke County during fair week, consider yourself lucky! This will be the 3rd year Em won’t be going to the fair and it sucks. She had joined a 4-H group a couple years before she got hurt, but when she got so ill, there was just no way to continue. So, 4-H is one more activity crossed off of her list and Fair is one more painful week in the year to endure.

Also, in the ‘challenging’ category: We have our wheelchair eval on Thursday – we will be meeting with the PT and the wheelchair vendor. The PT is leaning towards recommending a power chair to save Em’s shoulders. Em absolutely, positively loathes the idea of a power chair. Andrew and I waffle back and forth between the pros and cons of manual vs. power and simply don’t know what the right answer is. (That is what the eval is for, so we don’t have to make this decision on our own. But still, it is a big decision.) Not sure what the outcome will be, but it is sure to be an emotional appointment.

When I think about all Em endures – physically and emotionally – it is overwhelming. She is extraordinarily mature for her 13 years. Frankly, she deals with her diagnosis better than some adults I know and probably knows more about it too. But, she is still a kid and needs to learn when to be strong, when to cry, when to push, when to rest, when to carry the burden and when to lay it down for a time.

This week, I have seen her learning those lessons  and I know she is growing up fast, well on her way to full ownership of EDS. I am proud of her when she is strong; I am proud of her when she cries. I am proud of her when she displays maturity beyond her years and when she acts like a silly/grouchy/attitude-laden/goofy/normal teenager.  It is humbling to be the a mom to this precious child but, she is my hero and the world would be a sad and grey place if she were not in it. If that is bias, so be it!


Comments on: "I might be biased…" (8)

  1. Christy said:

    My name is Christy. I’m 39 and just got the official diagnoses of severe type 3 EDS two years ago. I grew up always knowing something was wrong with me. I never got a full night of sleep until I was 8 years old. I couldn’t participate in physical education when I was in school. As a child and in my early adult years I was always called lazy & depressed by fellow peers. I can remember as far back as age six when my hips would pop in and out of place. By age 9 my hips hurt all the time. I fell off a balcony when I was in the 4th grade and broke my right arm. While I was seeing the orthopedic doctor I explained to him how my hips were hurting worse than my broke arm. He decided to do x-rays of my hips and determined that I had only about an inch left to grow. He told my mom that was unusual but he didn’t think anything of it. Looking back I wonder if they had picked up on the EDS if I would be in the shape I’m in now!

    Now at age 39 I do have to use a power wheelchair on my really bad days. It got to a point that I couldn’t even go buy my own groceries. I was having to get my 62 yr old mom, who works two jobs, to do my shopping for me. My doctor, finally, ordered me a power chair and it has been a lifesaver. I finally feel like I’ve got my independence back. I can’t use a manual chair because my shoulders are in really bad shape as well. If I use a manual chair someone has to push me. My left shoulder needs to be replaced but my orthopedic doctor doesn’t want to touch me yet because with the laxity in my shoulders he’s worried the replacement will be messed up in less than a year. Until I can’t tolerate the pain anymore he wants me to keep doing PT and try to handle the pain. Therefore, I can’t use a manual chair because my collar bones pop out of the the sockets. If I could give you one piece of helpful information I would say if Em has shoulder issues I would recommend that she use a power chair to prevent overuse of her shoulders. I’m really sorry that life has to be so difficult for your little girl but when I read your blog about your daughter Emily, I was touched. I’m sorry we( my mom & I) didn’t get to meet you guys at the conference. Please know that I’ll keep Emily & your family in my thoughts and prayers!

    • Hi Christy,
      I am sorry we didn’t meet at the conference but I appreciate you ‘dropping by’ and commenting. It is so incredibly frustrating to know that people have EDS issues through out their childhood and no one catches it until it is too late to prevent severe damage. Emily was only 12 when she was diagnosed and I still wonder if she would be better off if we had caught it earlier. I can only imagine how frustrated you must be! I am so sorry you are having so much trouble and I hope you continue to find answers.

      I appreciate your advice about the power chair. We are really concerned about Emily’s shoulders – after just a couple hours of intermittent pushing herself at the conference, her shoulders were in very bad shape. (She ended up walking most of the day because she couldn’t push herself, so her legs were bad too!) Very frustrating and concerning – and supports the PT’s idea that she needs a power chair.

      But, a power chair is maybe overkill for her needs since she doesn’t need it all the time. We know that if we get a manual, she will not be able to propel herself for any distance but that wouldn’t really change anything – she doesn’t now anyway. Our goal is to make her more independent but, if she won’t use a power chair, she won’t be independent anyway! Sorry for rambling, but it really is a dilemma for us, as you can see. I have just asked Emily to keep an open mind when we talk to the wheelchair rep. Hopefully they can walk us through our options and help her see what the right choice is. I do appreciate your experience and, if we are advised to get a power chair and Emily is still resistant, I will have her read your comment so she can see what your personal experience has been!

      Thanks so much!

  2. Hi Em
    My name is Jenna, My name is Jenna, you are a brave, courageous fighter and an inspiration. You are beautiful and a hero. You are one of god’s miracles and you are a gift from god above.
    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.
    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    It doesen’t matter what other’s say
    we are special anyway.
    What is forty feet and sings? the school chior

  3. What can I say – I’m just. That. Awesome.

    • And modest too. =D

      • Ok, add that to it, and I am outstandingly, epidemically, (I meant to say epic, but I’m too awesome, so I had to use epidemically) amazingly, fantastically, magnificently awesome.

        • So, when you say you are ‘epidemically awesome’ you are saying you are awesome in the manner of an epidemic disease? This word, I do not think it means what you think it means… 😉 Just go with ‘epically’, dear.

  4. […] Click Here for more about EM. […]

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