Flexible Expectations Make the Journey a Little Easier

I used to think Greta might become an engineer. Or a lawyer. She was great at math and science. Better than anyone else in the family. She won awards, was well-rounded, was captain of the volleyball team, faster than most of the boys in PE, was an impressive critical thinker, an amazing artist and an entrepreneur. We marveled at how she could probably be good at any job she wanted. In fact we used to dare her to get a B on her report card. She wouldn’t do it. It almost seemed like she couldn’t.

Then she started to get migraines.

They didn’t hold her back much at first. No one at school knew she was hurting. But she would fall apart at home after holding it together at school all day.

Then she started missing school.

Then we reduced her course load.

Then she was in bed 24/7.

At one point my only goal for her was to stay alive. And my whole purpose in life was to keep her alive. Funny how quickly our expectations can be forced to change. From being an engineer to staying alive.

I know our story is not unique. A lot of you have similar stories. And it is heartbreaking. You have high hopes for your child. You know their potential. And it is slipping away.

It can be so hard to adjust our expectations for our child. We don’t want to give up on the hope of them getting back to normal. Fulfilling their potential.

But… It was important for us to assess where she was and start there. With little steps. The goal became to accomplish whatever she was capable of that day. But not overdo it. Long term plans had to become super flexible. Planning too far in the future only created more stress. More anxiety. And more pain. We had to put her potential on hold and expect only what was reasonable and manageable for each day.

Now she can do a lot of things again. And so our expectations continue to shift. At one point we didn’t think she would be able to have a job outside of the home. Or go to university. Now she is doing her Bachelor of Arts and is thinking of becoming a graphic designer or an art therapist. Did we think she would be either of these things when she grew up? No. Do we still sometimes grieve that she wasn't able to continue doing honors classes and participate in cool experiences throughout high school? Yes, sometimes. But she has realized that she doesn’t want to do something super stressful in life. She wants to live a life of more ease. One that is less tied to reaching her potential and more tied to her happiness and contentment.

Maybe that isn’t a bad thing. It actually is probably a good thing.

She has learned so many important life lessons through this chronic pain journey. Empathy. Self-management. When to say yes and when to say no. Pacing herself to avoid burnout (or flareups). And she can talk with such wisdom about the journey she is on and the life lessons she has gained. Many adults are still learning these things.

We think we know what our story will be. But we don’t. And so we need to live the story we have been given instead of fighting for the story we planned. It makes the journey a lot less stressful. And it allows us to notice glimpses of beauty along the way that we would have otherwise missed.

Greta’s accomplishments now, the things that we get ecstatic about, are very different from the things we used to praise her for. Now we are so proud of her for keeping herself out of bed all day. We are proud of her for exercising. For doing deep breathing. For making healthy eating choices. For doing her homework from her counsellor.

Most of these aren’t the skills that other kids her age aren’t working on. But these are lifelong skills that will serve her no matter what curve ball she is thrown during her lifetime. These are the skills that no one is taught but we all wish we had learned because they are the keys to handling stressful times.

So hold your expectations loosely. Plan for the day. And enjoy all the little milestones along the way, I say.

How has managing expectations gone for you on this journey?

~ Carla

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