December 8, 2011

It’s a “Wonderful” Life

Posted in Uncategorized at 7:38 pm by ourlifewiththeboy

Tom and I were talking this morning and I said, “You know, from the outside, I bet it looks like our life sucks.  We live in a tiny, crowded house.  We are not in the financial position we once were or would be in if I had not stopped working, and we have this extremely sick kid.”  Tom chuckled and said, “I never thought of it like that, but I think you’re right.”  We laughed about it because the conversation we were having was about how happy we are.  Now, I’m not going to pretend that our life isn’t stressful.  It is very stressful.  It’s messy and complicated and exhausting.  But it is also full of love.  It is fun and funny and it is joyful.  The blessings that this life has given us are perspective and appreciation and faith.  So many people just don’t have those things.  So many people have so much: a healthy family; a stable job; a nice home – but they find reasons to complain about it, or find fault with it, or feel it’s just not enough.  So it’s almost as if their good life is wasted.  Then there are others who appear to have such a good life, but are privately struggling with health or marriage problems or other crosses that they bear.  Or there are people who seem like they are so together, but are really very lost, because they don’t know God.  The point I guess I’m making is that things aren’t always as they seem.

For a long time, all of the people in our life were in it before Matthew.  They prayed for us and supported us right through from the beginning of the journey.  Then there was a time when the people who were added to my life were taking care of Matthew in some way – or – had their own version of Matthew.  Some had a glimpse, and some knew full well what we were going through.  What a blessing to have people in your life who really get it.  People who can cry with you, worry with you, rejoice with you, and make pee pee jokes with you without thinking you’re gross or immature! 

But due to various circumstances, we are again adding new people to our life and they are hearing “our story” for the first time.  Some hear our story, or at least a part of it, and are just in disbelief.  They say, “I can’t imagine how you do it.”  I can really understand how they feel, in part because I can’t even imagine it (which is why my usual response to that statement is, “I know!  I can’t either!”) And because they are hearing this story while Matthew is running around, playing and screaming as if there is absolutely nothing wrong with him.  But we’re not really the ones “doing it.”  To quote my good friend Karen, we are only the armor; it’s our son who is the warrior.   They can’t imagine how we go on having a full and “normal” (for us) life.  I have recently found myself explaining that we have to go on with life; otherwise what would be the point in living?  Why would Tom give up an organ if not to give the opportunity of a full life to our son?  Plus, life was a lot worse before the transplant.  A lot.  These people didn’t know us then; but even then we found some happiness.

Unfortunately, with some people who hear our story, I can almost physically feel their pity.  I can almost hear them thinking, “Thank God I don’t have their life!”  Which, okay, if hearing our story gives you perspective and makes you hug your healthy kid a little tighter, Great!  But just to set the record straight – so that there are no misunderstandings – It is a waste of your time to pity us.  Pray for us? Yes, please! But don’t bother feeling sorry for us. 

God loves and trusts us enough to have given us a miracle to care for.  It’s true that there is no guarantee of how long this miracle will be in our life.  I know far too many parents who didn’t get to keep their miracles here on Earth with them.  So every day that I am fortunate enough to feel my miracle squeeze my neck and say, “I got you!”…every day I get to live with my miracle, and not just his memory, is the best day of my life. 

I would not have chosen this life – especially not for Matthew.  Our days are not easy.  I often find myself praying for “smooth” and “normal.”  There are certainly things I would change if I could.  We have faced fear, pain, heartache and uncertainty.  We have also experienced joy, pride, relief and elation.  It is most likely that we will feel all of these things – good and bad – again.  But we are blessed with our crazy, hectic, complicated, stressful, messy, hilarious, miraculous, love-filled, “wonderful” life and we are happy.  Really.

P.S. I mourn and cry for the friends who have lost their children.  It’s an experience no parent should have to endure.  But don’t pity them either.  As sad as they are; as empty as they must feel; I know they also feel abundantly blessed for the time they got to share with their miracles, brief though it may have been.

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