Not Alone . . . A Prayer for Emily

Two roads diverged in a wood, and I--

I took the one less traveled by,

And that has made all the difference.

(Robert Frost)

As a minister I have sat with countless numbers of families when they have received the news that they were hoping never to hear.  Each time--no matter how shocking the news--I have had to be supportive and understanding.  I have had to be the voice of calmness in a storm of uncertainty.  I have had to be the reality.  And . . . it has never been easy.  It has never been easy to hear the news that a loved one only has a matter of time to live.  It has been diagnosed with an incurable disease.  It has never been easy to discover that a loved one is dead.  Each and every time I have been amazed that I have found the strength to endure such a difficult moment and able to offer some sort of comfort, support, and even hope.

As I write this evening I have received news that our granddaughter--little Emily--may have a serious genetic disorder.  Osteogenesis imperfecta or what is more commonly known as "brittle bone disease" is the preliminary diagnosis that the pediatrician has given to Emily after a recent check-up.  Kind of shocking news to get out of the blue. 

Everyone intimately involved in the birth of Emily knew that there were certain "risks" involved with the pregnancy--as there are with any pregnancy--as her mother has Lupus. Recently little Emily developed a rash which is often a symptom of Neonatal Lupus which is not uncommon when the mother has Lupus.  It is not life-threatening and is more of an inconvenience than anything.  So it came as quite a shock when the doctor told Emily's mother the diagnosis.  As she related the news to others in the family the shock wave reverberated down the line.

According to one medical website (http://orthopedics.about.com/cs/pediatricsurgery/a/oi.htm): Osteogenesis imperfecta, commonly called brittle bone disease, is a disease that causes a defect in the production of a protein called collagen. Collagen is an important protein that helps to support the body -- think of it as the scaffold upon which the body is built. There are several types of collagen, the most abundant of which is called type I collagen.  Type I collagen is found in bone, the sclera of the eye, ligaments, and teeth. Osteogenesis imperfecta occurs when there is a defect in type I collagen production.

There are four types of this genetic disorder:

Type I: mildest form; seen in preschool aged children

Type II: lethal at birth

Type III: seen at birth; many fractures; often unable to walk

Type IV: severity between type I and type III

There are also eight sub-types of this disorder.

This is just the sort of news that one wants to hear on a Monday night.  Kind of puts a damper on the other events of the day.  But that was the news that the wife shared this evening.  Where is that minister when you need him or her?

A funny thing happens when "bad news" is delivered . . . everyone jumps to the worse conclusion.  Basically the doctor offered an educated guess--which is still a guess--as a diagnosis.  His recommendation is that little Emily be seen by a pediatric orthopedic doctor in the Denver children's hospital and be tested for this disorder.  The doctor suspects it and does not yet know for certain.  Thus there will be tests run . . . and then more tests as the medical experts determine whether the doctor's suspicions are correct.  With four types and eight sub-types it is easy to jump to conclusions . . . we all do it.

 

In Alcoholic Anonymous one of their catch phrases is: "Poop happens"!  This is definitely one of those situations in which poop is a key event dropping on the lives of those intimately involved with Emily.  Now begins the "hurry up and wait" game.  This is a game that I know most of us are lousy at playing . . . I know that I am.  With time on one's hands it is easy to jump all over the board in guessing what little Emily might have.  There is the tendency to bounce around from the best scenario to the worse.  It is frustrating, nerve-wracking, and a royal pain in the caboose.  This evening that is where we are at.  Thus we wait . . .

I have talked to the wife and it saddens her heart . . . and she cried.  I have talked to my son--Em's father--and it breaks his heart . . . and he has shed his fair share of tears.  I have yet to have the opportunity to talk to Em's mother, but that may be yet to come.  Other family members have shared their concern.  And here I sit, not sure what I want to do.

On the one hand I want to cry . . . on another hand I want to yell and scream at God . . . while on another I am just too stunned to do anything at all . . . and so I am writing.  I have tried to be the sensible and reasoning voice with those that I love.  On the one hand I want to hope for the best, while on the other I want to prepare for the worse.  I wish I could wrap my arms around little Emily, her parents, and all those who love her and assure them that it will be okay no matter what we learn.  In moments it is overwhelming . . . numbing . . . and a downright pain in the rear end.

What can I say?

All I can say is that we have come to a fork in the road . . . and a decision must be made.  It is a decision at this point that none of us who love little Emily can make . . . only one that we can accept.  Whether it is the more downtrodden path or the path least travel we have to travel down that path.  It does not change the way that we love this precious child . . . it does not change the way that we love one another . . . it only changes the direction in which we move.  That is just the way it is.  It does not matter what our emotions and feelings are on the path put before us . . . whatever the diagnosis becomes, it is the path we must follow.

Whichever path we are sent to follow--despite the uncertainty of it all, I do know that I cannot stop loving anyone who is involved.  I love little Emily who has been given a burden that she can only survive with the love an support of those who love her.  It is becoming apparent that little Emily has chosen a path to test our love for her.  I love each and every individual involved in this great adventure . . . individuals I have met and those I have only heard about.  And, I know that none of us is alone . . . we have one another and a God who will not abandon us.  All of us can only grow stronger.

Sometimes in life we are not given a choice.  In those moments all we can do is to trust in one another . . . trust in God . . . and take the road less traveled.  It will make a difference.

God's traveling mercies upon us all . . .