Life Lessons and the Power of Hope

In October, O's three year old cousin, E, was diagnosed with a rare genetic disease called LBSL (leukoencephalopathy with brain stem and spinal cord involvement and elevated lactate).  If it sounds ugly, it’s because it is.  Over the last two months, her parents and our family extended have begun to try and figure out what we can do help save E.  

E’s mom and dad have always been great, loving and wonderful parents, but the courage, caring and persistence they’ve shown over the last couple of weeks through testing and diagnosis has proved them to be extraordinary ones.    

Because O and E are so close, I felt it important that O know about her cousin.  So after I had received the news and collected myself, I told her.  In a perfect scenario it would have been my husband and I sitting down and telling her, however, after talking to him, I knew that there wasn't time as we were in different places and both of us were very shook up.  

O crawled on my lap and asked me why I was sad.  I explained that she may sense tears and sadness in all of our family in the weeks to come.  I told her that doctors have told Uncle M and Aunt B that E has something that's called a disease.  She asked what it meant and I explained that it means exactly what it sounds like … that there will be times where little E will have discomfort, much like her Godmother, Darcey who has MS.  

O asked, "Mommy, is that why E's feet and legs have been hurting her?  And mommy, is that why E sometimes falls?"  I confirmed that these were all part of her illness.  Her eyes looked down and I saw a sadness come over her and remembered my experience with children when hearing about someone getting hurt … they often feel for some reason that it's their fault.  


"O, you know this is not your fault?  This is not anyone's fault. God makes us all both different and unique in our own ways.  It's all the imperfect things about each of us that make us perfect.  Every child, including you, comes into this world to teach lessons.  E has taught us many lessons … and will teach us many more.  And you've taught E a lot of things already like trick or treating or turning on a flashlight (or manipulating people into doing things they normally would not on sheer cuteness alone).  E is now teaching us about a disease that we knew nothing about before today … she is teaching us about perseverance and she is teaching us about appreciation.  Most importantly, she is teaching us about the power of hope."

O then asked if the doctor's could fix this disease and I told her that they are doing everything they can to help her.  She asked if E will be ok.  I told her, "We have great hope that she will be."  I added, "Just like you and me, E will have good days and not so good days.  We will be there for her .. and she will be there for us.  We will love her and make her laugh … and she will love us and make us laugh.  We will play with her and let her rest … and she will play with us and probably not let us rest!  We will do whatever it takes because she's our E."  

I added, "E doesn't know any of this because she is only three, but since you are five and in Kindergarten, you can and should know.   You've had some really good questions and thoughts, and I'm sure you will continue to have more.  So as these come up, please come to me and daddy and we will answer them the best way we know how.  You may hear a lot of conversations about little E and if you hear or see things that don't make sense … just ask us."

She said, "So mommy, do we all get a disease?”  I told her that we all have diseases inside of us.  Sometimes they work with our bodies and sometimes they don’t.  We never know.  But that is why doctors are so important.  They work to figure these things out.  In the meantime, we simply have to celebrate each other every single day."

She then paused and said, “OK mommy, I understand.  Can we go play barbies now?"  I 

replied, "Sure."  

O's kindergarten year is proving to be a year of very difficult and valuable lessons in life and for that reason kindergarten SUCKS!