Feeding tube? No problem.

A lifetime of doctor appointments, surgeries, and management of spasticity? I got it.

One little cold that causes even a slight fever?

I'm panicked, obsessively checking his temperature every ten minutes and counting respirations.

I lather him in essential oils, sanitize, and increase his fluids.

Why is it the small things that send me over the edge?
 

I can keep it all together most of the time.

We get through our daily routine without incident and mostly with a smile.

We have a lot of friends and family that enrich our lives tremendously.

We turn therapy into play time, tube feedings into story time, and lemonade from lemons.

While we do have our struggles, while we are often taxed and mostly sleep deprived, I feel lucky.

In all of the ways things could have gone after Danny's early and traumatic birth, we are blessed.

Danny is a remarkably resilient and cheerful child, and while he has a lot to complain about, he often doesn't. 
 

I always want Danny to feel as though he is justified in how he feels, and I never want him to feel as though he has to be the cheerful CP hero.

However, the reality is that his life will routinely involve some element of physical struggle.

If he is blessed with a cheery disposition, resilient spirit, and sense of humor then he will likely have an easier go of it.

I try to be a model of these traits for him, and while we live honestly, we live positively.

Then there is a fever and the wheels come off.

I supposed this is indicative of the fragile balance of our life.

While no one has guarantees of happiness and health in their life, the fine line we walk seems awfully thin.
 

We are one nasty cold away from pneumonia or one seizure away from a completely different life.

I know that I cannot let these possibilities cloud my daily thoughts, and am mostly successful in keeping them at bay.

However, one little fever is all the reminder I need.

One little fever spawns a thousand worries and countless sleepless nights.

One little fever is all I need to feel completely powerless against the tide of uncertainty and anxiety.

I have no answer to this fever.
 

I try to soothe and placate with my balms and oils and Tylenol, but there is nothing to do but wait.

And I wait with bated breath until it is over and the pain and congestion and sweating stop.

Then all becomes right again and things slip back into place.

And we move forward.

Keeping it together.

Mostly.

More like this please...
 

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