Finding purpose in pain
“Mom, I wish I was older than Ethan… Because he says that the older you are the quicker you die and that would mean I can go to heaven” “I want to go to heaven mom to be with Jesus”
The pain of this journey has surpassed anything I could have ever imagined. I have gotten so used to pain and sorrow being a part of my every day that I don’t remember them NOT being there. I know this journey is not about me…I’m just a lucky one who who gets to help help guide them. It’s about these precious kids who deserve life and a life that is lived with joy, happiness and laughter!
How are these things to be maintained when there are so many questions, so much heartache and so many unanswered questions. To hear your child say things such as this is almost unbearable …how it penetrates your soul is unexplainable. Yet when I truly listen, his words can be filled with such depth beauty and wonder.
Since diagnosis I have tried like hell to make the most of the days… Or more importantly the moments in the days… The big and small, maybe a bit too much. I have become one of those moms you read blogs about and hear yourself say “I will NEVER be like that” “I will not fill their every moment with something to do, and try to make everything special and memorable” the mom that wants to make cookies at every play-date and wants a bucket list for every summer just to “make memories.”
Hearing your son say he wants to die and go to heaven is almost unbearable…so what is there to do but to make life as memorable and enjoyable for him.
Nothing will take the pain away and there will always be questions…. Did the treatment stop the disease? Did it stop and will he be in limbo forever…. Knowing something is wrong, knowing he does not fit in, yet not quite understanding the whys around it. I don’t have these answers and most likely never will… So I will live in limbo with him…. We all will… Praying and hoping there is more understanding as time goes on.
Until then I pray for strength to get through moments like tonight… Strength for clarity and most importantly peace to cover Eli for every question, fear and unknown that he will face throughout his life.
I don’t know Eli’s will or what his purpose is… I just know I will feel the pain with him and celebrate the joys. Day by day I am the one who ends up learning from him!
“There is only one thing that is fully our own and that is our will or purpose” -Epictetus
~ by my4foures on April 7, 2015.