The middle of any journey always seems the hardest. The
longest. Overwhelming.
"The
middle of any challenging journey can be the most critical point. Many of us may not be where we were, but
we're not yet where we want to go. Perhaps the terrible bondage of Egypt is
behind us, but the land of promise seems remote.
The longer
we wander in the wilderness between Egypt and the Promised Land, the greater
the chance that we'll return to captivity. The pull of familiar comforts and
habits can feel overpowering, particularly against uncertainty of Canaan's
unknowns. But as we persevere, God is faithful to continually give us the extra
push of motivation to press on." Beth Moore
When you start out on a journey, the beginning can be
exciting, scary, or unknown. Our journey
was all of those things. We had no idea
the complexity of Josiah's condition and each day felt like we were just trying
to keep our heads above water. We were
just trying to survive. Now that we've
been home for a couple of months, we've found routine. We follow the steps of our Safe at Home
program. We talk with Nurse
Practitioners, Cardiologists, and nurses weekly, if not more.
We're in the middle of it all. It wasn't until we were
sitting in the waiting room, speaking with one of Josiah's cardiologists about
his cath procedure, that it dawned on me.
This is forever. The complexity
of this condition doesn't end simply because we're not in the hospital
anymore. This is his life; our
life. As his doctor was explaining what
he did in the procedure, my mind couldn't help but think; "Wow, is this
really what we do now? We listen to
doctors explain coiling and ballooning and...?
I hear parts of the heart that I never thought I'd know, and I still
have a hard time trying to remember them all. I never imagined this to be my
life a year ago."
Don't get me wrong. I
wouldn't trade a single moment that we've had with our sweet little boy. I will forever cherish him for the person he
is, regardless of what his heart looks like.
Would I love to fix this for him? Absolutely! But I am eternally grateful to those who know
how to give him life. He's a miracle.
This road that we've been traveling is long. It's hard to express to those who don't live
it, day to day. There is constant
worry. There is constant stress. There are days that I just feel raw. There
are many days that I want to my parents house over my "lunch break"
and just sit on their couch and cry. I
want to sit at the kitchen table and chat with my mom as she busily gets dinner
ready for the evening, before everyone gets home and she starts teaching piano.
I want something familiar and comforting to make this better. Like the quote
above, there is so much unknown in front of us, that the pull of familiar is so
tempting. Nothing about this journey has
been familiar. Everything has been new. Challenging.
We moved here for a job.
We ended up getting excellent care for Sy. Next week is his Glenn
surgery. Next week marks the next step of this journey. We still have a long road. I learned from the cath that another
procedure or surgery is like hitting a giant reset button on everything we've
worked toward. It doesn't mean that
we've reached the Promised Land yet, but
God is faithful to continually give us the extra push of motivation to press on.
And press on, we shall.
