I read a post a last week on the "Huntington's Disease - The Good, the Bad, and the Ugly" FB page that got me thinking about our journey through this life as parents of a disabled child, and now as parents of a dying child.

Over the years, our little family has lived through so many painful experiences.  Trying to find the right educational setting; trying to find the right doctors and medications; coming to grips with our frailties and learning to lean on God for every decision and turn in the road.

Almost 10 years ago, I lived in a hospital waiting room for three weeks, praying that our son would live.  I thought my heart was being ripped out of my body.  The anguish was physical, not just emotional.  I cried on the phone to my mother.  I prayed that God would reward Lacy for his faithfulness.  Kenny worked and took care of his dad, who was also hospitalized at the time.  Kenny and I spent weekends in a hotel room going to visit our son in ICU.  I can remember how we both sat with Lacy, talking to him.  We encouraged him not to give up.  We told him to fight.  By God's grace he made it through that awful time and we had our son back.

Three years ago, we sat in a doctor's office and were given the news that our son was dying.  I watched Lacy's face as he listened intently to the doctor, wanting to understand what Dr. Diamond was saying. Lacy's face that day is seared into my memory.  He was relaxed and trusting.  He did not know, never will know, what the positive results meant.     I excused myself, went into the bathroom, and screamed into paper towels.  Not this, too.

The first few months were the worst.  I took to crying at the drop of a hat, crying at work, at home, in the car.  I eventually went on anti-depressants so I could function.  "After this is over," my doctor said, "we can think about getting you off these."   After this is over.

We have learned so much the last three years.  We are better people, I think.  We consider today.  Not much "someday" or "next year."  We can actually laugh at some of the things Lacy says, or the effects of his decline.  Laughter is important, and really does lift our spirits.

We know, though, that the very worst is yet to be.  We will lose our son and the pain is beyond my imagining.  I don't know how we'll get through it but we will.   God has carried us this far.  He has given us wisdom when there seemed to be no answers.  He has comforted when we were at our wits end.  He has provided when there seemed to be no way.  He will continue to provide, to comfort, and show the way.

When the time comes, when Lacy's fight with this disease is over, we will let go, and God will take our son into His arms.   Jesus will keep our boy safe until we meet again.  

For now, we see His grace and mercy every day.  We have precious time with Lacy.  Now is good.


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