If you are a regular reader, you know that I was pleasantly shocked when Em announced that she wanted to go to the conference with us, as I was making plans to go earlier in the summer. That announcement was slightly inconvenient because it required a quick change of plans, but I was also very pleased that she wanted to take this step. Up to that point, she wanted nothing to do with reaching out and meeting other EDS kids or actively learning about EDS. So, it was big when she said she wanted to go.
We knew she probably couldn’t do the entire weekend, but left that open as an option if she could when the time came. As the date came closer, we knew she would just be there for one day and looking at the kids schedule, we knew that day would be Friday. (Friday had the most activities scheduled versus the Saturday schedule.) We also knew that even coming for just a day would be exhausting and painful and that she would pay for it for days. But, she felt it would be worth it – and in retrospect, it absolutely was.
She was pretty excited and was up at 8:30 Friday morning to take her meds and get dressed. She had decided she wanted to get to the convention by noon, so she could participate in the afternoon activities. That meant she and my parents needed to leave by 9:30. While I attended a session, Andrew met them at the hotel, got my parents settled in our room for the day and brought Em over. We dropped her off in the room where the other kids were and went off to our own session. She had planned not to eat lunch with us – to bring a packed lunch and eat before she came in. But, she ended up eating with us and did ok – she ate ‘grilled’ chicken, a roll and some raspberries.
When she was done, she decided she would go by herself to find the lady who was working with the kids and ask her a question. So, as my jaw dropped during this uncharacteristic display of public confidence, she took herself off in her wheelchair and was soon back. Then, she said the kids activities were going to start in a few minutes and she needed to go back. I offered to push her, but she said she would just walk, pushing her chair in front of her – knowing if she needed to sit, she could. I regarded this as a minor miracle. She would never, ever do that in public. Only in a place where no one would think twice. That was my first clue that the day was truly going to be amazing!
While Andrew and I were doing our thing all afternoon, Em was with the kids. I checked on her at every break but she was clearly having a great time. She was hanging out with the other kids. She got to hear Dr. Pocinki speak and the kids were able to ask him questions about POTS. She got to sit in on a presentation about service dogs. She sold key chains and raffle tickets. And she got to have her thumb splints adjusted. By the end of the afternoon, she was clearly starting to wilt, but she was determined to stay for the pizza party.
We knew the pizza would be an issue, so I wasn’t really surprised when she called me when they started eating and asked me to bring the PB &J sandwich she had packed for lunch and some apple slices. We were in the middle of heading into the hotel restaurant and ordering supper when she called, so I ended up eating a cold burger later, but it was worth it. I hung around to wait for her because I could tell by the look on her face that she was rapidly nearing the end of her rope. But, she refused to leave and I couldn’t blame her for wanting to savor every moment. In fact, she stayed until they all were ‘kicked out’ and she was kind of sad that she had to say goodbye, since she wasn’t going to be there the next day.
I think this was an incredible experience for her – to be in a room of people like her is really beyond words. She helped one boy put his shoulder back in when he couldn’t do it himself. When she was asked about her wheelchair, she started to explain that she has this thing called EDS, then realized she didn’t have to explain that and also understood that it was a genuine question that she could answer, not the usual ‘looky loo’ type question she gets. When Em loudly popped her neck to ease the pain, the girl next to her only said ‘oh, your neck does that too?’ She talked to a boy who has way more serious dietary limitations than she does, so it put her issues in perspective. Em even confessed that she was freaked out by the blatant hypermobility she saw everywhere, so I think she understands more of my perspective when I occasionally get nauseated witnessing some of her injuries.
She is definitely paying for the day she spent at the conference, although she isn’t as bad as I expected her to be. She spent most of Saturday and Sunday in bed. Definitely in more pain and her GI symptoms have flared up – when she is extremely fatigued and in high levels of pain, she just can’t eat. Sunday she was in a lot of pain in her shoulders, neck and head. Turns out pushing herself in the wheelchair was really rough on her and there are some lingering issues to deal with there. (This experience might be illuminating as we look in to her wheelchair situation – manual vs power. Still not an easy decision, but knowing how badly it hurt her to push, might help us decide.)
But, here we are a few days later, and she is settling down and doing ok. Still in increased pain but slowly recuperating. She feels it was definitely worth it and would do it all over again. In fact, she is hoping to go to the whole conference next year. She met some other kids, got their contact info and had a great time. I really could not have asked for more!