The Noise

It’s a noise that I hear every time I wake up during the night and again when I awake in the morning.  It’s not a particularly disturbing noise; in fact, on some levels it’s kind of soothing.  It’s what it reminds me of that bugs me.  The noise is a constant reminder of a reality that makes it difficult to just drift back into peaceful sleep.  What is it?  It’s the noise made by the machine on the other side of the wall, in my daughter’s bedroom.  It’s a machine that runs all night long which helps my daughter breathe more effectively.  It’s neither complicated nor invasive.  It simply causes a vest that is wrapped around her to compress and release at the appropriate time and in the appropriate rhythm in order to cause her body to breathe deeply and regularly (things that are a challenge for her without the assistance).  It runs all night, every night.  So… it’s a good noise, I guess. 

The problem though, like I said is not the noise, but the reality.  The reality is much more complicated and more difficult to bear than the noise.  The reality that the noise represents is that she is not well… my daughter is not well.  That’s the reality that challenges my return to peaceful sleep.  That’s the reality that I would love to forget, if even just for a little while. That’s a reality that haunts a parent like few other things ever could. 

 Now I should probably clarify that “well” is relative to some degree.  I would like to be the first to tell you that, compared to some and compared to where she could be, my daughter actually is quite well.  But when I say she is not well, I mean to say that she is not as well as most other kids… not as well as my other kids.  No, by most standards she is not well at all. 

Reagan was born in April of 2008 with a brain injury.  That injury has resulted in significant developmental problems.  Most noticeable are Reagan’s challenges in the area of motor skills, such as the effective use of her arms and legs, and her inability to express herself normally through speech.  In other words Reagan can’t walk or talk.  In addition to those issues, Reagan’s brain injury has effected nearly every other area of life all the way down to difficulty with chewing, swallowing, and going to the bathroom. 

So when, I say that my daughter is not well, those are the things that come to the front of my mind.  In contrast to that however, is the fact that she has one of the most invigorating and contagious smiles that you can imagine and she is generally not afraid to use it.  In addition to the idea that she seems relatively happy in life (for a 3-year-old that is), it has also been quite incredible to see the value that she has added to many other people’s lives through her display of courage and trust.  And of course there is no one who has been more impacted by those traits than her mother and I.  Such is usually the strange dichotomy of the good and evil that seem to come hand in hand with having a hurt kid. The good that has come from the bad leaves me fighting to more joyfully embrace this unexpected reality that is now my life.  It’s a fight that must be fought more often than I had hoped would be necessary.  Yet, so often it’s the fight that leads me to a strength that I never knew was available to me.  It’s a life that I would never have had the strength to choose, but at the same time, a life that I can’t imagine having never experienced. 

The noise brings up all of those emotions and thoughts.  The noise won’t let me forget.  Sometimes that noise makes me want to go and wake her up so that I can see her smile again.  Her smile tells me it’s ok.  The noise reminds me of what is wrong, but her smile reminds me of what is not wrong, it reminds me of what is really, really good.  It’s a strange reality, isn’t it?  Sometimes I don’t know whether to be happy or sad.  Sometimes I feel both at the same time… it’s so strange. 

If you are a parent of a hurt kid, I trust that much of this rings true with you, regardless of how different your child’s circumstances may be from mine.  I also imagine that you have come to this place hoping to find more of that mysterious strength.  It is my hope that through our shared experience, God will fill us both up with the very thing He seems most eager to give: GRACE.  Grace that will help us embrace the reality that is ours. Grace that will make this more than ok.  Grace that transforms “the noise” into something that gently, but relentlessly points us to Him… the one who is better than life itself. 

So let’s journey together toward that end.  Let’s share with each other the victories and the defeats, the struggles and the hope.  I hope that you will come back often to read more and to also interact with what I say either through comments or through email.  We’re in this together, aren’t we?