I used to think that I was so lucky that I never knew, experienced or witnessed a child that has died. I actually remember a conversation with my mom when I was a teenager. It went something along the lines of me asking my mom if we ever had any child die in our family. My mom told me that the only one she remembers hearing about was that of my grandpa Kowalczyk. His little sister was burned from a fire and died from her injuries...but that was about it (now I know why I have such a fear of campfires, grills, bonfires, etc...with kids)
That our family was extremely lucky that we never had to experience the loss of a child. Then...my brother passed away unexpectedly at age 24...I saw how devastated my parents were. I remember the long drive home from Bowling Green, we were visiting the college to see if we (my twin and I) wanted to go there. There is where they they were told he had died...yeah...way back then we didn't have cell phones. A police officer had to stop us and bring us back to the station where my sister was calling and told my parents. The look on their faces...the look of raw sadness...they just lost their only son. It was the worst day of every ones life. That day, our family was changed forever.
Fast forward to today. I never thought that I would be feeling the same exact feeling that my parents felt years back. The dispair, the sick, empty and lost feeling of losing your child.
Since losing Nick (along with several miscarriages) I have witnessed more and more sickness and death of children then I care for. I had to take a leave of absence from my roll as volunteer at the Hospice because of Kenny and his needs, but other than that...it seems like there are so many families that have lost a child in one way or another. I am so sad for the ones that are just starting on the journey of a life without their child and grateful to those who have been through it for quite some time and have helped me through tough times.
Yesterday a woman I met through another friend who lost her son, has started her journey. She and her husband lost their beautiful six year old (same age as my Kayleigh) daughter, Ainsley. She went in for surgery and all I know is that she passed away after her surgery. She had MITO, the same thing that claimed the life of my other dear friends son. This was very unexpected and such a shock to me. Here you have this beautiful little girl fighting for her life every day. Showing courage and just living life....you have her mom who is such a strong woman who does so much for the MITO community and for her daughter and for her friends....and now she is gone. Sometimes I just don't understand how life can be so cruel. I mean, we are NOT supposed to have to be a caregiver for a sick child let alone have to bury that child. It just is so...final. I know that life has no rules. You are to live it to the fullest because you never know...but as I get older, I am finding that I am not really liking this whole "getting old" thing. There is too much sadness and uncertainty...not to mention, the superficial aspect of it...the lines in the face, the grey hair starting, the weight that you have to work just a little harder to get rid of...
I find myself looking at everything with a little hesitation. I worry about the little things and big things. I guess my anxiety is getting the best of me...but after seeing so much sadness, sickness and death, who wouldn't.
I also find myself with much more compassion for those who are facing such as what I said above. I can relate...I may not have the right words to say to them at times, but I do understand the stress from taking care of a sick child, the not knowing what is to come, and the feelings you have when you lose a child. I don't care if it has been from a miscarriage, stillbirth, newborn or child....it hurts and digs down deep no matter what.
So today I am dedicating to all my friends who have a chronically ill child and to those who have lost their precious child. May we find strength to carry on and make it through the tough days. Love in our hearts for ourselves and for others that we know we did/are doing all we can for our babies...that we don't get into such a dark place where we cant function...because that is NOT what our little ones (who are here and who are angels) would want or need. And faith, that there is a reason that only God knows, why our babies are sick and fighting a tough life and for those who have lost their little ones, that our angels are in a safe, beautiful place and that we WILL see them again (yeah...sometimes I need reassurance of this).