And so began the week that was.
A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.
I am however exhausted, and facing another battle.
It was a bit of a struggle to keep the chin up this week, as I often felt like her:
But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.
But these last few
weeks months, have left me with a lot of questions.
See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.
Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.
In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.
Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.
Really – no one has even a bit of a clue. And it is often just downright exhausting.
Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.
Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.
Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.
It gives me a time to break from all the questions. The wondering. The worry.
It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.
We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.
I think what we look for is doctors, friends, associates, people who can practice:
I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.
It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…
Daring to think outside the box is risky. It is hard. It is necessary.
Especially in this season of “test prep” where I have seen this scenario one too many times…
Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.
In many cases – we are their only voice. We MUST think outside the box for them.