Tuesday, February 26, 2013

Despair and Hope

My online presence lately has been somewhat limited lately, considering all we've been going through with Peyton.  I have had much stress, anxiety, and even despair over some of life's events lately.  Since I try my hardest to keep this blog a positive and encouraging place, I decided that it isn't the place to air out everything that's going on, even if writing it out is therapeutic for me.

With silence comes isolation.

Unfortunately, the reality of our situation is far beyond what we feel capable of handling, so I can only imagine that it's pretty well next to impossible to imagine what it's like being out the outside looking in.  It is isolating.  Yet in our isolation of this experience, I know we are not alone.  I imagine this is the case with most anyone who is a full-time caregiver to someone who is terminally ill.

Terminal.

No, we have no "disease" diagnosis where Peyton has been officially labeled and stated out loud as being "terminal".  That said, whatever her general condition is, it is declining - and it won't improve.  The best she's ever had was the best she'll ever have.  It's long since been put behind us.  While there are the people who have drawn closer because of our experience, many more have backed away.  I suppose they are afraid on some level.  Unsure of what to say or do.  Maybe simply incapable of handling "this".  I understand - no one likes a downer and, well, our life isn't the most upbeat it's ever been at this point in time.  It's sad, really, that people shy away from situations where they are really needed or wanted the most in the lives of the ones actually physically experiencing the situation.

On a day when I went to church really feeling a burden of the label of being that mom from that family, we heard a message about miracles - the ways in which God performs miracles.  It could be the miracle of all He has created.  The miracle of His favor being extended to someone or on something.  Then there is miracles through direct intervention.  This is what hit me hard.  

We desperately need a miracle for Peyton.  While most everyone on my Facebook wall was commenting on the Oscars, I just had to tune out.  I wanted to part of it.  I didn't watch the show.  I didn't care who wore what, who was in what, who won which award.  I couldn't even tell you which movie won Best Picture.  And I don't care.  Why??  Perspective.  Experience a few hard-hitting things in your life and you may also realize that life isn't about any of that.  All of those people??  They live, breathe, eat, sleep, get sick, eat too much, eat too little, have fears, etc. etc. etc. just like anyone else.  They are just people.  Certainly not worth of idolizing.  I just kept thinking of all of the millions of dollars poured into entertainment.  Not just the movies - just take that one singular event - The Oscars.  The millions upon millions that went into gowns, jewels, shoes, makeup, hair, publicity.  The thought of all that money, right now, is just simply grotesque to me.

Why??

Because we are looking for a miracle.  All of that money packed into one auditorium and event isn't enough to fix Peyton.  I'm pretty sure this guy couldn't even fix her:


Wouldn't it be nice just to be able to buy the fix you need for anything??  It's not always possible.  We don't have that luxury.  We're up against a ticking clock, and there are no answers.  Nearly 7 years of trying to figure things out haven't provided us with the answers we need to do anything to "fix" her.  Medical science is amazing - and I believe that God has gifted people in this area to help people here on earth.  But some things are just beyond their grasp.

We found out in the past few days that the world expert on copper disorders doesn't believe he can help Peyton.  Part of her litany of symptoms is a severe copper deficiency - just discovered that this past fall, yet it is probably one of the most significant findings of her life.  If that guy can't fix things, how can we expect anyone here on earth to??  Now, please understand, there is so much going on with Peyton that this is only one piece of a very complex puzzle, and anything he might have offered would not be a cure all.

Despair.  Then Hope.

The message at church was incredible.  I wrecked me because we are so in need of a miracle.  I did speak briefly with our pastor after the service.  He assured me Peyton would one day be healed.  This I know - I've always believed that.  He re-stated that it would be in her lifetime, in heaven, or when Jesus comes again - but it is not for us to know.  He said a few things that were reassuring to me, offering some little bit of hope in the despair I have been feeling.

Then there were people that day.  There were a couple people who I just saw randomly who came and spoke to me.  Then I had an experience yesterday which really blessed me.  That same person later offered some additional encouragement.  I felt like I was experiencing a hug from God or something.  During a time which has been highly isolating, He sent me a few people specifically to show me He is there and He loves me.

I cannot explain why things happen to us which don't happen to other people {Peyton is extremely likely to be the only person in the world like her.}  I cannot explain why nothing bad seems to ever happen to others.  I cannot explain the actions of people, whether good or not so good.

All I know is that God has us in this place for a reason.  For whatever reason He has, He has chosen us to follow this very special, yet very difficult, journey.  It is not all despair - the blessings we have received along the way are immeasurable.  To those of us who have supported us along the way, especially now, thank you for being there.  And thank you for being brave enough to shoulder the burden with us.  Much love to you all.
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