Dear Alyssa,
So I have been asked this a lot...how do you do it? How do you go on? I had never really had an answer or really thought about how I should answer, but lately, it has been on my mind a lot...why don't I have an answer to that question...is there an answer to that question...and do I really want to know the answer. I keep thinking that maybe knowing the answer to that question might break the control that I think I have on my life or make me fall into some strange pit that I will have to pull myself out of. The more I think about the question though the more I think I have come up with an answer that may explain it to others in a way that they don't have to step into my shoes in order to understand. My situation is unique because no one expects the horrors of childhood cancer or the things that your family will have to endure if your child passes away. But thinking of how most people look at life (I think) everyone has to find a new normal more than you would think, starting at birth you find a new normal starting with things like learning to talk, to walk, to sit up, to eat all by yourself...then as you get older you have to find a new normal when you start school and have to leave your parents for the first time, you have to find a new normal when you get your drivers license, go off to college, move into your first apartment, get your first job, go off to the military, get married, have babies...each time you reach a milestone in your life be it small or large, good or bad, forced or planned you have to find a new normal. With every new normal comes a new set of things you have to learn and experience. Although a road with childhood cancer is not an easy one there was a new normal that came with it as well...learning the many names of chemotherapies, learning about radiation and how it works, learning the different types of childhood cancer because inevitably you are going to meet all kinds of wonderful people who are in this new normal with you, you learn how to tell a child of the horrors that they have to endure in order to be "healthy" again and away from this monster and teach them that this new normal is going to change how life is lived. This new normal teaches you humility, it teaches you thankfulness, it teaches you love, it teaches you not to take a moment for granted, it teaches you to cherish every little detail. It teaches you to find what you know and hold onto it, this new normal forges new bonds and strengthens old bonds or it sometimes even severs them...this new normal becomes your new way of life...learning that there is not enough funding for our children to get them all healthy again...this new normal is cruel...it takes you from a loving "normal" family to a family struggling to survive...this new normal brings about fear, it brings hope, it brings a family together or it can break a family apart...it takes everything you thought you knew and pushes it right out the door. Learning to deal with this new normal is not easy..learning to put faith, hope, trust, the life of your child in the hands of others is a part of this new normal and definitely not an easy part of the new normal. Then for some of us that journey continues and the new normal includes the after-effects of the chemotherapy and radiation that their child had to endure. For others the path is worse...the new normal that is faced is losing your child...finding another new normal where all of the things that you have learned in any previous normals are no longer relevant...in this new normal you have to reinvent yourself...find out who you are again...find out who your partner is...find out how to honor your baby that was taken from you...in this new normal you have to endure bad days and good days...in this new normal there are no easy answers, there is no path to follow you have to forge this new normal with no guide and learn to find peace in your new normal...finding this new normal takes a long time it is something that can't be measured in moments, hours, years, even a lifetime...because in this new normal the little life that you brought into the world is no longer here for you to see them become an adult...it is not something that is normal or wanted but it is thrust upon you and either you find your new normal or your new normal runs you over like a steamroller....
Remember the next time that you talk to a family that has lost a child don't tell them their child is in a better place...don't tell them well that was years ago aren't you over that yet?...Don't try to give them advice...let them talk to you and you talk to them about their child they truly want to know that you remember their child that they made an impact on your life...
A grieving parent will always be a grieving parent one who is living with the loss of their child coping each day to live on and make a difference, to find their new normal...
I love you more than all the stars in the heavens seen and unseen times infinity Alyssa!!
Love always,
Mommy
