If I Knew then What I Know Now - a letter to Parents of Newly Diagnosed Kids with LGS

The amazing thing about experiencing hindsight is that you can have a clearer vision of the whole situation.  The problem with hindsight is the potential to allow yourself to be filled with second guessing, shame and self-criticism.

Three and a half years ago I began writing a memoir chronicling my journey raising my son Nick. This process for me personally was therapeutic and cathartic.  As I wrote the story, there were many days that I cried with sympathy for the young mother that I was 40 years ago.  Back then, my burdens weighed heavy and our unknown future loomed large in my daily fears. 

After a few weeks of writing, I noticed that I was not reliving the experiences. Rather, I was looking on as an informed observer, retelling the story in order to give other people the opportunity to connect to it and draw their own conclusions.  In addition, I had created a safe place for me to reflect upon all aspects of my own emotions and responses.

Throughout the two years of rewriting and editing, as I reviewed the manuscript, I gained greater and greater compassion and empathy for myself.  My respect and self-love increased as my shame and self-reproach diminished, to the point that now I can truthfully say that I know I did the best job I could to provide everything that was possible for me to give to Nick to help him on the journey of his life.  And I continue doing that same thing.  It is the very best job I can do. 

Oh, there may have been others who could have done more or done differently than I did, but they are not Nick’s mom.  I am.  This is the one truth that I wish I had understood all those years ago.  In the process of learning this truism, I discovered this mantra that I repeat morning and night.  “Let what I do today be enough.” 

When each day starts, even if I have planned a certain schedule, I don’t really know what will happen.  And at the end of each day as I am heading to bed, there is nothing I can do to change what has happened.  I have learned to forgive myself for my faults and to let go of the unmet expectations of the day.  This one simple practice has brought me great peace of mind and calmness of spirit.

The famous ‘Serenity Prayer’ by Rev. Reinhold Niebuhr was originally written in the 1930’s and has many variations, but the best-known is, “God grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.”

There are some intractable things with Nick that I cannot change.  Some of these things I had hoped to change over the years, but intractable means very difficult or impossible to control, manage or solve. 

This doesn’t mean that I have given up or have lost all hope.  I do hope for a cure, I do hope for peaceful non-seizure filled days.  I still hope for Nick to learn new skills and I hope to celebrate this next decade with him on his 50th birthday.  However, I now refuse to let my own peace of mind be shoved around if these hopes are not realized. 

That is the one thing that I wish I had put into practice back then.  I know that we are unable to redo the past and I do believe that living in the past is not healthy.  However, I have learned that we can benefit by reviewing what has gone on before and then sharing those lessons we’ve learned with others, in an effort to try to help smooth the path for those just starting out.  That was my motivation for writing my book, “Our Time To Dance, A Mother’s Journey To Joy.” 

Experience does define us and I am the woman I am today because of the journey I have walked caring for Nick.  Let us all stand together, arm in arm, no matter where we are in this journey with LGS.  Helping others with their struggles seems to make my own burdens easier to bear. 

I have gained strength from others as I read their comments to my blog posts and articles.  We all need each other.  “Let what I do today be enough.” 


Our Time to Dance, A Mother’s Journey to Joy” is available on Amazon and in retail stores.

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