One Foot In Front of the Other

Our visits with Lacy on the weekends had become difficult.  We always bring him a Sonic meal on Sunday after church.  The food was never right.  The drink was bad, or the burger was bad, or we were just plain bad parents.  We often could only stay a few minutes before we would be ordered to leave or be "arrested" by the police who, in Lacy's mind, are only a few minutes away. A few weeks ago, we ended our visit as Lacy screamed at us that we were guilty of "murderous threats" and would be put in jail with only a sliver of food a day. Those Sonic meals ruined our visits, and it was as Lacy was screaming that I realized the solution - in this case - might be very simple.  We would purchase a Sonic card for Lacy.  His care worker could use the card to get lunch for Lacy.  We would no longer be the bad guys. This has been a godsend.  We have had several visits now with Lacy that were calm and enjoyable.  Last Sunday, we stayed for an hour, ...

I remember the first year I was able to celebrate Mother's Day.  I was so excited to finally realize the dream of being a mother.  I imagined the years ahead and felt so grateful. I am grateful today for the past 32 years as I have watched Lacy grow and become a man.  I am grateful for the experience of pushing him to be the best he could be, and seeing him become a wonderful and thoughtful human being.  I feel such pride in him and his accomplishments.  Someone reminds me nearly daily how blessed they are to know Lacy. Today I am thankful for my mother's constant love and support.  She modeled sacrificial love every day.  She taught me by her life example how to be a mother.   Her absence creates an ache in my heart. On this day I am also thinking of the mothers I know who have lost children this year.  My dear friend whose daughter lost her battle with cancer and a new Facebook friend whose son is finally free of the ravages of H...

Our family does not need a month to be aware of HD.  We live it every day.  We don't hover over our son, wring our hands, and cry every day, but he is constantly on our minds and in our hearts. The last few months have been great with Lacy, but his attitude toward us is changing of late.  He is more angry than not at us, and is more volatile when we are with him.  Sometimes it is because we don't react as we should.  To be honest, we don't see him daily, and he has a routine that a visit from us disrupts.  We keep visiting and enjoy the times together.  We endure rants and tirades directed at us for our crimes.  We are told that we should be locked up and given only a sliver of food every day.  We are bad people. I think it is easy to sit back and let HD take you down.  It is harder to live life and try to continue to connect with the person you love.  It is easy to say HD is taking everything from you.  It is harder to ack...

May is HD Awareness Month.  During this month, if you see a post on Facebook, or a blog about someone living with HD, please "Like" it or comment. HD changes lives.  People who were once healthy and outgoing lose the ability to walk, talk, think, and reason.   They don't lose the ability to enjoy the company of others.  People living with HD can be difficult to visit if they become fixated on something, or begin accuse others of trying to hurt them.  Don't shy away from visiting.  As hard as it is on you, it is much harder on the affected person.  They are losing themselves, and can't change the outcome or the course of the disease. Families who are living with HD experience grief on a daily basis.  They also experience joy.  Every day is precious, every day is the best it will ever be.  No opportunity to connect and love can be overlooked.  We know that the days are short, and we don't want to waste a minute. HD has been char...

April is Autism Awareness Month, or as one of my friends likes to call it "Autism Acceptance  Month." During this month, there will be activities somewhere in your community that will call attention to, and provide information about, autism. I work every day with many children and families who live with autism.  We have lived for many years with autism, and Lacy has worked all his life to overcome and thrive in spite of many challenges. From my perspective as a parent, the most important gift you can give your autistic child is a way to deal with the uncertainties of life.  While autistic children thrive on sameness and schedule, the world does not run that smoothly.  Life happens.  Disappointment is a daily experience.  Preparing your child to deal with the inevitable changes in plans and schedules takes many years, and is not an easy task. I can think of so many parents who lose sleep and agonize over their child's inflexibility.  It's not th...

It seems as we get older, there are goodbyes around every bend in the road.  My mother passed away in August.  We lost a dear friend in January to leukemia.  My dear friend's father is in hospice care.  As Kenny often says, "None of us get out of this alive." No goodbye is easy.  We feel grief and guilt at the same time.  What if I had...?  Would it have made a difference if the doctor had...?   Could we have done more?   Keeping vigil over the last hours with a loved one is like watching a train travel slowly down a track and knowing that you can't get out of the way.  The train is coming. Parents, especially, are devastated by the death of a child.  It is not in our makeup to bury our children.  How do we go on after a child is gone?  This weekend, I received an email from a friend whose daughter has been battling cancer.  "She is gone."  Gone where?  To Jesus, to the best day of her life. ...

Do we believe or not?  Can we trust that God means what He says when He tells us that "our times" are in His hands?  Do we have the courage to suffer and yet be thankful? I'm asking myself these questions today as I think and pray for people I love who are going through the hardest experiences of our earthly life - letting go of a parent or a child. In this finite life, there will be partings.  Just as sure as we are born, we will all die; when someone we love dies, it is as though our flesh were being torn, gaping, bleeding wounds left behind. What I am finding is that, with HD, this parting is a drawing and quartering of a life, of everyone's life.   The tear is not quick, like a bandage being ripped from delicate skin.  It is a long stretching, tearing, and separating of flesh, bone, and joints.  It is a slow death march to the inevitable. While I am thankful that we still have Lacy, and that glimpses of the bright, engaged young man we knew emer...