Thinking outside the box

iep5

 

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:

frustration.jpg.scaled1000

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.

questions

 

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.

what if

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.

i love backstroke

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:

Thinking_Outside_The_Box_by_mclelun

 

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…

test prep

 

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.

 

4 thoughts on “Thinking outside the box

  1. your daughter is blessed to have you! I relate to what you guys are going through: for 8 years we went from a doctor to another because of my arteriovenous malformation in my foot, they all said I was exaggerating the pain… until 8 years later an AVM specialist (the first one in Canada) came to my town, she told me I suffered enough and proposed surgery and medication. It was a great day for me because I was taken seriously for the first time by a specialist! All I am saying is you will find your specialist, and I am sure your daughter will eternally be grateful for your patience and the fact you support and believe her. God bless. 🙂

    1. Thanks – for reminding me of a lot of things. Most importantly – that AVMs can hurt. Our doctor – who has never had one himself, likes to tell Meghan that they don’t hurt. She begs to differ. I of course believe her, but its always nice to be validated. We will press on always — and she will always get the best care I can find! Thanks…

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