Live Every Moment

No words can grab hold of the emotions, questions, and thoughts that swirl around in my heart and mind at the moment.  For me and my family, my brother’s death 2 years ago today wasn’t “news”.  It was the most glaring, life-changing reality that sent me one a roller-coaster of emotions and gnawing emptiness.  I’ve come to see those feelings as being okay, though.  I can have those feelings, and at the same time, fully, deeply trust in the God whom I love.  The God who wept.  The God who mourned the destructiveness of sin and how much it infects our world. 

I’ve learned a lot about grief over the last 2 years… Time doesn’t take it away, either, as we are led to believe.  But it does make the pain more bearable as you learn how to live with it.   

You know, I remember several people telling me to remember the good times after Samuel died.  To be honest, that always seemed like a silly thing to say.  But I now know that that was something I needed to hear in my grief.  It is a reminder sorely needed.  Why?  Because I was not disposed to remember the good times.  

I couldn’t see past the pain to remember the good times.  I cried because I would never again see those blue eyes cut over to the side and tell us, without speaking a word, that he was not happy.  I mourned the loss of never again brushing his little swoop of strawberry blond hair out of his face.  I would never again feel those fingers grasp my hand for comfort.  I’d never hear the swoosh of a ventilator in that room again.  I remembered the fact that we never finished reading Ishmael.  I didn’t crawl up into his hospital bed with him one last time. 

And then I was plagued by all the things Samuel never got to do.  He never got to run and play.  We never heard childish laughter bubble up from his chest.  He never got to climb up in the recliner with Daddy and eat a bowl of ice cream like the rest of us-- he couldn’t even eat food for that matter, everything was fed to him through his Gbutton.  We never saw him take his first steps; we never went searching for frogs…. And then there were all the milestones he never reached—college, wedding day, first child…

The good times were a plague, and the images and sounds that flashed through my mind were haunting.  Mocking.  

The truth is the thing about grief and time is that those griefs and pains don’t go away.  You are just able to see past them and remember the good times more.  Now I can remember when Samuel would hold his breath just to make his alarms go crazy, because he didn’t want us to do his range that day.  Now I remember how hard Samuel and I worked to walk the 2 mile Walk for Life.  I remember the resident who told me,  “I just want you to know Samuel’s life has impacted me so much that I have decided to change my major and become a brain trauma specialist to help other children in Samuel’s situation.”  I remember, I remember, I remember.

But I still hurt.  I still woke up today and wanted to pull the covers back over my head.  The reality, though, is that life goes on, and my job is to never let Samuel’s memory die.  My job is to continue the work that God did through Samuel’s life.  So, today I am writing, even though last year I ignored the day.  I am writing because I have learned—or rather am learning—that I have to help myself heal.   

You know, oddly enough, my biggest fear is that people will forget...  I don’t often tell people that, but while I’m being vulnerable and honest, I’ll throw it out there.  My biggest fear, and the thing that hurts me most, is that people forget.  They grow complacent.  They can’t feel what we feel, and thus most people, with a few exceptions, never remember.

It was easy to remember Samuel when he was alive.  You couldn’t miss him.  He was amazing, and he had a presence.  Plus, he had all the hardware.  But he was able to connect with people beyond those machines.  He drew little children and adults alike.  As a friend said at his Celebration of Life (our version of a funeral service), “he was so inviting, with that big round face and that big swoop of hair… he took all that fear and uncomfortableness [concerning his hardware and situation] away”. 

Many people don’t realize the impact that one little child can have on his world.  Samuel never uttered a word, but his life spoke into so many others, and the Lord used him mightily as a tool to reach others.  Most of us begin our lives as blissfully ignorant children unaware of the toils of life and the hardships we will one day face.  We never think about changing the lives of those around us or doing hard things (kudos to Alex and Brett).  Then there are those little ones who have been specially chosen by God to change lives from their birth and challenge the views of everyone they come in contact with.  My brother was one of those blessed few. 

Often times the Lord doesn’t tell us why he takes our loved ones from us…. We want to hold our little ones always, and then suddenly that time comes to a close and we are forced to except it.  Our permission wasn’t asked.  

But through it all, there is one thing I have clung to, besides the Lord, obviously.  There is a memory burned in my mind.  

I remember being in the hospital one day when another family down the hall from us was pressured to end their newborn’s life. They were a young couple, and were being counseled by the medical staff to end their little one’s life because it was what was best for her.  It was the right thing to do.  After all, they didn’t want her to suffer, did they?

Apparently these arguments held weight, and the couple pulled the plug and watched their little girl struggle for her last breaths. As soon as her life was over the Father ran from the room and came into the parent’s lounge where I was sitting.  I will never forget the look on his face or the words he said.  “I will never forgive myself for being persuaded to end her life because it was the “right” thing to do!”  I was rather confused when I heard this, because it wasn’t until later that night that I would learn the back story I just told you from another family who was staying at the Ronald McDonald House with us.  They were room buddies with the family.   

What if we had done that to Samuel?  What if we had pulled the plug like we were time and again pressured to?  How many lives would we have impacted negatively by that one choice?  How many lives would have been affected?  If not for Samuel, how many children and families would miss out on the impact that that young medical student would one day have on them?  If not for Samuel, how many other families, like my own, would be called before an ethics committee because the child didn’t have the “right” to the medical attention needed?

Would it have been easier to pull the plug and be done with it?  Some say it would.  The Doctors even tried to tell my parents that it was the right thing to do because they needed to think about their other children and how Samuel would impact us.  I can tell you, had my parents pulled the plug on my precious baby brother, I would have lost all respect for them.  How could someone find that comforting?  If my parents would be willing to do that to Samuel, then what would be the difference if I (Heaven forbid) were to get into a car crash that left me paralyzed and gave me brain trauma?  Why wouldn’t they pull the plug on me if I suddenly become an “inconvenience”?

But that’s not what my parents did.  We literally had to fight for Samuel’s life time after time.  It wasn’t an easy process, but it was worth it!  Children like Samuel have a huge impact, but few ever get the chance to show us that.  Why?  Because the child’s family has to be willing to fight for what they love and believe in, because there is always someone who thinks differently.  We can talk about doing hard things until we are blue in the face, but at some point the rubber has to meet the road. 

This is something I do take comfort in.  That we had Samuel for the days appointed to him, and we walked with him.  We were able to be there for every moment.  I had 16 very hard, but no less beautiful months with him.

I don’t know why the Lord does what He does, but I know He always has a reason.  And I hope and pray that He has a reason for pressing me to share all of this with you today, because I’d rather just clam up and hide this in one of my computer files to never have to look at again… but I feel compelled to share something with you, besides what I have.

The Bible says to never let the sun go down on your anger… today I want to challenge anyone who has a sibling to keep that in mind.  You never know when your last days with them are.  I certainly did not expect my brother to die when he did.  My family and I were celebrating my birthday at my Grandmother’s house (long story as to why it was postponed by over a week) and had to cut things short because Samuel wasn’t doing well at all, and my Mom knew he might not make it.

Your siblings might not wake up tomorrow morning or return home from the park with their friends.  I pray this is not so, but the reality is you never know.  You don’t know when your last moment is, or when theirs is.  So don’t let your last words to them be words of anger.  Remember that this life is fleeting.  It’s a vapor, as the Bible tells us.  Think of that when you get into petty arguments.  I have no regrets where Samuel is concerned.  I kissed his little hand one last time as my parents loaded him up for his last car ride to Glennon.  I gave him my love and asked the Lord to return him to me as I remained behind with the other little ones to tend.  The Lord did not choose to honor that request, but he gave me the blessing of having no regrets of harsh words spoken.  That’s not the case with some of my other siblings.  Some days I leave the house angry with them for various reasons.  Having lived through the death of one siblings, I know those regrets of harsh words spoken could eat me alive.

Give your siblings a hug and kiss today, if you can.  Perhaps remind them that you do care about them, even if you don’t always show it.  I’d give anything to be able to tell Samuel one more time how much I love him, but I can’t.  

You can, though.  Take that opportunity.  Live every moment.