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!