Wednesday, August 9, 2017

Brayden's Health Update

Before getting into any details, I just have to say that Brayden is doing well (at least his version of doing well).

Brayden's spring time, left us in a scary and overwhelming position of having discussions and attempting to make decisions that no parent ever wants to address when it comes to the care and medical care of your child.  Yes, all of it was a long time coming but I did my best to push it away as long as possible.

Currently, Brayden's not-breathing/not-responding episodes have been few and far between.  Really going on about 6 weeks of no major episodes.

We still check his pulse ox regularly (take it with us too), haul around oxygen tanks (because I never want to be stuck with out a working one again).

Brayden did make it to ESY (summer school) some...not as often as I would like...and he was not home as often as he would like.

Thankfully, Brayden has been relatively stable for the summer.  We needed him to be.

And here is the cruel irony of this summer:

Brayden had a pretty bad bill of health.
Brayden's cousin, James, a three week old baby, totally healthy.
Brayden's great-grandpa, William Johnson, even though he was 94, had just seen his doctor and declared totally healthy (the man had only ever been in the hospital once in his entire life).

Brayden, whom we had been in discussion about DNRs, medical treatments or lack thereof, had a healthy summer, without any troubles.
James passed away, without cause or explanation, at the emergency room in a matter of moments.
Great-Grandpa, passed away at his beach home, seemingly in his sleep.


God called James and Great-Grandpa.  Why?  I just do not think we will know those answers on this side of heaven.

One day, we will see.  One day, the arc of our stories will all make perfect sense.  One day, we will trace the lines of our scars and find them to have fallen in the most pleasant of places, to see in them our great inheritance.  One day, we won't need to hope, nor will we need to be healed because we will be face-to-face with the source of both, the source of everything. Jesus.
And in the glory of His face, the darkest suffering and loss we have endured will face like shadows of daybreak.  Until then, the moments of releasing our lives into the hands of a God we cannot see are the closest to wholeness we will come on this side of eternity. This is our truest healing - the healing of our souls - and it sustains us when we wake up tomorrow to an unknown but hopeful new day.
- Hope Heal by Katherine & Jay Wolf

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