Saturday, February 16, 2013

Being Realistic

I think there comes a point in time when you have to be truly completely realistic about a situation.  I believe Ron and I have been doing our best with this for nearly 7 years now.  We've tried to be as open as we needed to be about the specific things that have been going on in Peyton's life.  We've never glossed over anything.  It shouldn't really come as a surprise that Peyton is a very sick child.

I feel like we're moving through phases.  Special needs.  Medically fragile.  Now this.  What's happening now feels like a new phase.  The concept of "special needs" seems not to capture the essence of what we are dealing with at all any more.  "Medically fragile" seems more accurate, but it feels like more than that now.

We're trying to adjust to a new reality.  When Peyton was in the hospital last October, she was in for 17 days and the doctors came up with no answers for why she was so sick.  There was clearly something going on, but every test under the sun revealed nothing.  Then she was in the hospital last week with respiratory issues.  Again, she did not test positive for anything.  While you might think that's good, it's really not.

While they tend not to talk in terms of "DNR" orders, I cannot tell you how many times over the past couple of weeks I have answered questions related to what we'd commonly think of as DNR orders.  For my 6 year old.  This is a topic we broached cautiously a few years ago during a particularly bad time in Peyton's life, when her illness nearly required her to be on a ventilator during one particular hospital stay.  The concept of making decisions for Peyton's life is not new to us.  It started back then and, while we haven't had to discuss it much in the hospital until now, it's been on our minds since then.  Yet it's back in the hospital realm again.  One doctor after another asking the question, needing to be sure that the information they have is still what we want.

I feel sometimes like we're living in some other dimension from everyone else we know.  I mean, who else {besides us} has a plan for their child "just in case"??  What other mom out there refuses to take a 24 hour getaway because of the horrendous guilt that would overtake her if something happened while she was away?  And do you have any idea how much this family desperately needs that type of respite??  There are no vacations to look forward to on our horizon.  Who else {besides us} lives with the knowledge that something very likely could happen to their child at any time.  Yes, I think all parents have fears that something could happen to their child.  I'm talking about a very real fear that comes from the knowledge that something actually could happen because your child is for all intents and purposes terminally ill.  Not with cancer.  Not with some other life-threatening disease with a name.  But with a condition that, while undiagnosed and un-named, threatens to take her from us before we want.

I am not being paranoid or pessimistic.  I am being realistic.  Our new normal is just about more than we can bear.  But we will and we do because she is our child and this is our life and I cannot imagine doing anything other than what we are doing for her.  I wouldn't change what we are going through because it's not for me to change.  God has a plan.  He's had this plan all along.  No matter how He chooses to heal her - whether it is through some miracle which will heal her hear on earth or it's through His perfect healing which will last for eternity - that is His plan to carry out.  Unfortunately, we don't get to know what that plan is.  We find out along the way the direction things will take in each moment, but we don't know what lies ahead.

All we can do is pray.  And ask for prayers.  And more prayers.  And start begging everyone around the world to pray for her because I feel like that's just about the only thing that we can do besides medically manage her issues.  I pray specifically for Peyton and her healing - however that has to happen.  I also pray that Ron and I will be given some sort of supernatural strength to deal with the present and whatever lies ahead.  I pray that God will give us strength to bear all that comes our way and gives us whatever support we need as we journey through the days, weeks, and months ahead.  

We don't have a "timeframe", in case you're wondering.  It's all in God's timing.  

That's the only thing I know.

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