Does anybody have a map?
Anybody maybe happen to know how the hell to do this?
I don’t know if you can tell
But this is me just pretending to know

So where’s the map?
I need a clue
‘Cause the scary truth is
I’m flying blind
And I’m making this up as I go

Those words are taken directly from the song  Anybody Have A Map? – Lyrics | Dear Evan Hansen I heard them for the first time a couple of weeks ago and felt as if they had been written just for me.

I would give 10 years of my life for a map.

Just someone, somewhere a little further up the road who has been where we are right now waving enthusiastically, assuring me we are on the right path.

The truth is, I don’t even know what our path is anymore. This has been too much for too long. It feels as if we are lost in the wilderness.

Why has the quality of Josiah’s life deteriorated so drastically these past too many months to count? Why does he have so many challenges to overcome?  Why aren’t we able to help him?

No one seems to have the answer.

Lots of people have suggestions and advice which we greatly appreciate.  So many have offered to help in various ways, even going so far as to generously send amazing products for us to try.  We have tried them all.

We’ve also purchased protective helmets, therapy swings, compression tubes, cbd oil and homeopathic remedies along with compression shirts and a weighted vest, a weighted blanket and a weighted stuffed animal.  We’ve increased staff support to accommodate Josiah’s constant need for supervision/safety.

We’ve sought medical opinions from different medical specialists.  We’ve tweaked medications again and again and again.

We’re living on very little sleep as Josiah has become nocturnal once more. In addition to his increased agitation/aggression, he wakes most night by 2 or 3 am.

So where’s the map?
I need a clue
‘Cause the scary truth is
I’m flying blind
And I’m making this up as I go

That’s how I feel most days lately.  When it seems as if it’s all up to me, I quietly wallow in self pity, wishing things were different, wondering how much more we can take.

BUT, when I shift my perspective and focus on Who is really in charge, hope returns.
Yesterday I read a magazine article,  ‘7 Encouraging Scriptures for Dementia Caregivers’ with verses that resonated with me.

Whatever you did for one of the least of these brothers and sisters of mine, you did for me.
Matthew 25:40

For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

My command is this; Love each other as I have loved you.  Greater love has no one than this; to lay down one’s life for one’s friends.  John 15:12-13

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  Romans 8:28

Then there’s my personal favorite:

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

The reality is, I’m NOT flying blind and making this up as I go.  I’m hanging on His promises, choosing JOY and trusting there is an amazing plan in place!