brain tumor · identity · Uncategorized

How can I help???

A few days ago a friend (also a bereaved mom) was talking about this thing that tends to happen after you have a kid with cancer.  You become the ‘go to’ person when any other child is diagnosed.  It happens to me all the time.

My friend asked,

Why would some parent of a newly diagnosed child want to hear from me, the bereaved mom? We are their worst nightmare. And how are we to know how to comfort another when we are still trying to figure out our own loss???  

Yes I may have walk in your shoes, or at least down a similar path but don’t have it in me to tell you it is all going to be ok.

Choosing to work in pediatric pallaitve care I have forced myself to walk beside the families who have come after us and I have learned, over time,  to put my experience aside for the sake of accompanying them presently in theirs.  Of course I always know that I do it all because of Kai and there is a part of me I see in each of them, but it is no longer as important to me that they know.  Living this can be inspiring and sometimes it is so so sad, but always I am honored to be some small part of this prodigious experience because I know there is nothing more sacred than your last memories with your child.

Today I received a message from a mom whose son died less than one month ago.  Her boy was a precious soul.  A giver.  A lover. The kind of kid everyone just wanted to be around. He was funny.  He loved to tell me stories about his family. He was sneaky and sly and could convince anyone to get him what he wanted. He was smart and intuitive and strong.

I worked with this boy and his family for many months as his massage therapist.  He LOVED massage but one out of every two visits he would ask if I could massage his mom or dad, because he knew they needed it too.

I saw this family several days a week for many months and I never told them about Kai.  We talked about treatment and how hard it is living in the hospital. They trusted that they could take a walk or get some food when I was with him. They are amazing parents who were always gracious and grateful.

I have not been working in the hospital for the past few months as I am taking this time to spend with my own family (a story for another time) but a few days ago a colleague thought it would help this now bereaved mom to hear our story and I of course obliged.

The mom sent me a massage today thanking me for caring for her son, and especially for sharing Kai.

She said,

 It’s been almost a month… people say it gets easier with time but, for me, it gets harder with every passing day.

I replied,

… It is hard to believe you are coming up on one month. Time passing is so difficult, especially in the early months. It is impossible to believe a whole month has gone by, yet it feels like forever since you held him.  I remember feeling as if the world for us just stops but everyone else keeps moving on.  It makes it so hard to keep up and as you said, every day only feels harder than they day before.

People will say many things, usually out of love, that can be misguided and often feel hurtful and insensitive.  “Time heals” is one of those comments. They think they are helping but what they can not understand is that we do not want to be healed.  All we want is to go back to the time before cancer.

I am sorry to admit that there is nothing I can say that will help you. Time passing will eventually allow this life to be more bearable. And by eventually I mean many many months from now. But not now.

Right now it is time to hibernate. Take care of yourself. Let yourself be sad and angry and feel whatever it is you feel even if sometimes, most of the time, you feel absolutely nothing at all. Because how can you, or anyone else,  possibly expect any more from yourself right now?

But also, please please know that you are not alone. I will not tell you it gets easier but it does change. The raw empty hole starts to fill in a little bit as you are able to remember some of the good things again. You will start enjoying your daughter again and that will be beautiful and heartbreaking and then beautiful, cyclically over years of missing him. It is a life long process but your boy will always be right there guiding you, helping you put one foot in front of the other -slowly. It feels impossible right now because it is impossible right now.

I am so so sorry. 

This was my truth today and I can only hope it is ok.  It may sound discouraging or harsh to those who have not experienced this loss but I can not pretend it to be any other way. This mom knows that I am walking in the world again.  She has seen me smile and play and put one foot in front of the other. It would be unfair of me to deny the work and pain it took to get here.  It would be unfair to deny her the time and space to not be ok.

10 thoughts on “How can I help???

  1. Thank you for sharing this, Kerri. You are a blessing to the families you are helping, and are honoring Kai too. I often think of you, especially when I drive by the Lisnow Center. Be well. Mary P.

  2. Kerri, I think of you and Kai often. You continue to inspire me to do my own work. Thank you for opening your heart. It can be very vulnerable but so fulfilling. God Bless. Jen M

  3. From the moment I met you, I was in awe. You have so much to teach and give, even when most would not which is also completely understandable. You have a light that shines through you. I am thinking of you and the family always.

  4. Kerry,
    Your words are beautiful. You have been blessed with a gift that is helping more people than you will ever know.
    I will forever have you and Kai in my thoughts and prayers.
    Priscilla

  5. Thank you for sharing this Kerry.You and Kai continue to be an inspiration to me; when I am overwhelmed or life is seeming a bit harsh, you two help me use my adversity to encourage others. You inspire others and they inspire others as a result; just as a pebble thrown in the water, Kai’s life and your love ripple out to touch so many.

  6. Kerri, I have a daughter who has been battling an optic pathway tumour for the past 2.5 years. We’re coming to a point where we are running out of options, and are facing the strong possibility of her demise. I found your blog when she was diagnosed, and I still come back to it. It breaks my heart to read it, but also lifts me up. I just wanted to say thank you for keeping it available, and thank you for showing to us other parents that life can continue after the death of a child.

    1. TKG I am so sorry to hear about your daughter. please feel free to reach out via email if you ever want to talk. Kerri@ CourageousParentsNetwork. Org xox

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