One of the hardest things in life is having words in your heart that you can't utter....James Earl Jones
This saying stares at me each and every day, hanging in front of my at my desk. There are plenty of words in my heart which I have not shared or uttered over the years. As I was looking at the above saying, an article from the Mighty appeared in my email. The article was titled: WHEN YOU FEEL HELPLESS AS YOUR CHILD FACES SEVERE MEDICAL ISSUES. Well those are definitely words which have been in my heart over the past 13 years (well almost 13 years).
The author Kasey Anderson had some other words which have been in my heart...
I assume that the general consensus is that being a parent is hard work. When you watch your child sleep at night, it really is like looking at a piece of your soul right before your eyes. You imagine the life they will have, you make plans for school, you try to teach them to make friends, to be fair, to help them hone and develop the skills that will allow them to be the kind of individual who can positively impact the world and those around them. All the while you have a front row seat to their happiness, as well as their hardships. Watching your child struggle physically, emotionally, mentally and otherwise can be a painful and helpless feeling. I understand this as I do it for Becca on a yearly, monthly, weekly and daily basis. However, I have the heartache of wanting this for Ian, for sometimes wondering what and if.
For much of the past few years, I've felt as though I'm treading water. I'm in the middle of the vast ocean. There are storms that come and go, and all the while I'm desperately trying to keep my head above water. And I do. And it's hard, but I do it. Some days I see a small island. I swim to it. I lay down and feel the extraordinary relief that comes with the realization of how exhausted I've been. It gives me hope, and I am revitalized to swim again. This struck me as a great way to express the ongoing struggles we have as a family of a child with at terminal illness.
I believe our lives are meant to try us -- to bend, manipulate and work us into the best version of ourselves. This is an uncomfortable experiences. I've learned what it means to survive, emotionally and physically. BOY HAVE I! I now feel like I can navigate life in the same way you would navigate a forest with a compass. I am aware of all directions, but I know that to continue heading north, I can only take a few steps at a time before I have to stop and re-examine. For me, this has proven to be much more manageable and hopeful path. While Kasey may not know how her journey will end for her family, we are completely aware of how our journey will end. It has been beneficial for us to not dwell on the end but to live for each moment and cherish them.
I think if we let it, life can make us feel that everything is dire. I can't believe that is how it is supposed to be. We are supposed to know happiness, to know joy, to laugh and to laugh often. The heavy challenges we bear may not disappear, may not become less important, but they can be lightened. And I believe they can be through an honest quest for joy. For me this paragraph says so much...put things in perspective, try to look at the big picture and see how the little picture fits in.