Friday, June 13, 2014

Making Plans Again

If you had told me 6 months ago how happy we would be right now, I would have found it hard to believe.  I would have wanted very much to believe it and it probably would have helped me to hear it, but in the midst of the storms we were travelling through, I would have struggled to imagine being in a place where we were not just enjoying each day but actually dreaming and planning again.  And yet here we are.  Truly blessed. Genuinely hopeful.  Planning for the future.

Without rehashing a story that if you are reading this, you most likely already know, life had beaten us down to a point where we did not plan anything anymore.  Once upon a time, Al and I were dreamers and planners.  But, reality swept in and those dreams and plans were taken as collateral.  The new plans that replaced them were important but lacking in the same excitement.  Certainly it took tremendous planning to get the children transplanted and to adapt our lives to their needs.  And we had moments in between where we would defy logic and boldly plan for a family activity or trip.

Unfortunately, though, any fun plans seemed to be met with constant cancellations and disappointments.  Last year I literally think that every single time I planned to be out of state or at an important function, Max was in the hospital.  By the time we were plowing through November's drama, we had decided that having booked both a concert and a photo shoot for that weekend was more foolish than it was endearingly hopeful.  And although we earnestly tried not to lose our hope or happiness, we stopped making plans.

We lived for each day.  We tackled our circumstances with as much grace and strength as we could muster. And we survived and managed to make the most of the days.  But we did not dare plan anything for the future.  We tried very hard to not even think about the future.

We met with a doctor who specializes in dealing with kids with chronic health issues in January.  He wanted us to make plans.  Oh but not the kind of plans you want to make.  He wanted us to be prepared and have plans for a list of terrible 'what ifs' we could be facing, particularly if Max's breathing issues did not stabilize.  We had some painful conversations and although we understood the merit of planning before, we decided we could not do that.  No planning.  No thinking about that future.  Live today.  We couldn't plan for good things but we wouldn't plan for bad either.  We were determined just to develop tunnel vision for the present.

And then something happened.  A gradual but amazing miracle occurred. Max got better.  His breathing stabilized.  His BiPap machine has made a HUGE difference.  We can tell he is sleeping so much better and has greater energy and awareness during the day.  We worried it would not be sufficient and we would have to start considering other possibilities already but it really did work for him.  The infections which seemed so constant just stopped.  The thermometer no longer lingers by his bed waiting for the next fever.  Sure, his disabilities are still there but he is feeling great!  As the weeks of this new non sickness passed, we cautiously rejoiced.  So relieved for what we were seeing and still worried what the tonsil surgery would do to disrupt our sweet stage of stability.  We mixed our relief over his progress with our dread over another surgery.

But then to our great shock and excitement, surgery went really smoothly!!! And now it's been a month since surgery and he is breathing better than ever, tolerating his BiPap machine better than ever and by far, the happiest we have EVER seen him.  EVER.  In the over three years of his life, now is the BEST he has EVER been.  It is just hard to explain how amazing it is to see him transform from this very sick, weak and less engaged child 6 months ago to our happy laughing little boy!  We will catch him just randomly laughing so much he gives himself hiccups- over seemingly nothing!!!

We have watched all this with amazement and nervous excitement.  Could this really be true?  Could Max really be this happy?  Could he really not have been to the hospital in a month? Then in the last week, we decided to stop watching with our breaths held, afraid for when the 'next shoe' would drop.  We decided it was time to embrace it.   So we went a little crazy.  We celebrated with reckless abandon.

We planned.

That's right.  We dared to dream.  We looked beyond today.  We glanced into the future.   And we decided it was time.  To plan for one.

We have a lot of exciting ideas and plans from Family Fridays to some big trips in mind.  Next week Max is going to have his first stay by himself to be spoiled at Nana and Papa's so Al and I can take Addie to Sea World.  We are going on a big family vacation in Tennessee next month and there is a plane ticket with Max's name on it.  And are you ready for the really wild part?  There is a professional photographer booked! Gasp, insane I know!!  We are hoping to see Max start going to school with Addie next year.  And we are dreaming up and planning a trip to Australia finally!

We have not developed a total case of amnesia so we are well aware that any of our plans are subject to change.  We know that things could happen.  And we're okay with that.  We're just excited to have plans. We are excited to be excited for the future.

Six months ago we were grateful just to be surviving each day.  Today, we are making plans.  God is so good.  We are so blessed.

1 comment:

Anonymous said...

So glad to hear of your amazig progress. I think of you often and still have the twins pic on my frig. Much love to all of you now and for the future. You guys are awesome!!! Diane Hirshkowitz