“It’s the Soul Afraid of Dying that Never Learns to Live”

I suck at titles, so it is easier for me to borrow someone else’s words and give credit than to spend 10 hours thinking of the perfect title.  This one is taken from “The Rose”, by Bette Midler.  Whether it is the essence of this post remains to be seen, but it’s what I want so it stays.

We are at Camp Sunshine this week.  Shawn is here with us.  Last year he didn’t come, and I wasn’t sure he would really embrace this week, but to start at the end, at lunch today he had gone back to our room for something, and I was still sitting at the table when he came back.  He stood there, looking at me (it was like 12:57), and finally I asked why he was staring at me.  He says “Aren’t you going to go sign me in?”  I was like I still have three minutes, but he was READY RIGHT NOW, MOM!! At that moment I knew he was won over.

Shawn is displeased when I write about him here, so don’t tell him I did.  If I ever write a book, I will have to get his permission to include his story.  But for today, it is on my heart to do this.  One of the hot topics in the parent groups here is siblings.  I have been struggling with my emotions regarding this area, and I was anxious for yesterday’s session because I know we would be covering it.

When I was called on, my first words were “It is heartbreakingly difficult to tell your child, especially when he is old enough to understand, that his brother has cancer.  But to have to tell them AGAIN, once you know what is coming, that is unspeakable.”  I remembered Dr. Prieto coming into the parking lot at the hospital the very first night of diagnosis, as I stood there, trying to relinquish 8 year old Shawn to his father.  He told me to hug and kiss Shawn, that he needed to talk to him.  That was the first night of what would be hundreds of nights that I did not tuck Shawn into bed.  That I did not kiss him goodnight.  I don’t need to go into all the moments I missed, all the things I didn’t get to do, all the times he reached for me and I was not there, all the memories I didn’t get to make.  The guilt that I carry is immense.  I try all the time to make it up to him all the time, but there is no way.  We can’t turn back time, and even if I had a chance to do it again, I don’t really know how I could possibly do it differently.  I did the very best I could.  I continue to do the very best I can.  Then someone else spoke, and her words were these:  “I told my children’s teachers that I was no longer the parent I was last week.”  How easy it is for others to judge our parenting.  How easy it is to say that our way is wrong.  That we spoil our kids.  That we don’t set enough boundaries.  That we just aren’t doing it “right”.  And blessedly, I don’t care what people think of my parenting.  I do it my way, based on my children’s needs.  I do try and talk to Shawn, particularly as he gets older.  I need to make sure he understands, medically, emotionally, why things are the way they are.  But too, it is very important to just listen.  Because sometimes the things you want to communicate are not the vital, pressing things your child needs to hear right then.  If I am constantly talking at Shawn, I may miss what he is thinking.  This may be parenting 101, but often I forget, and I just feed him information.   So anyway, I am no longer the parent I was pre-diagnosis.  I am also not the woman I was pre-diagnosis.  The mom that was speaking said something else.  She said “Since I knew I wasn’t going to be able to be there for my other children, I put people in their lives that I could trust.”

********DISCLAIMER:  THIS POST IS ABOUT ME AND MY FEELINGS AND MY HEARTBREAK.  IT IS NOT A REFLECTION OF THE OTHER PEOPLE IN SHAWN’S LIFE.  Shawn’s needs were met.  My parents were there for him.  But he was missing one thing, the ONLY thing that no one but me could give.  He was missing his mother.  I did put people in Shawn’s life that I could trust.  His homework got done, he was well fed,  he got to church and his baseball games and events at school.  And yet I grieve for what he lost, for what I lost.

Fast forward to this week.  In group, the social worker spoke about how important it is for our children to see us laugh and play and be silly, and so I have worked hard at that.  But as I got a little ways  in to the week, it occurred to me that there was a bigger need at work here, and that was the need to solidify my relationship with Shawn.  Ryan has done what Ryan does, Shannen has had him, and this has given Shawn and I a rare opportunity.  We have taken him with us to play ball and such, but I have allowed him to just watch, or to join other families within my line of sight.  We have eaten 3 meals a day together, the 3 of us.  I have thrown a football with him.  Shot baskets with him.  Played checkers.  Took out a paddle boat.  We sat together at the talent show, and this morning we played kickball with another family.  He has seen me laugh.  Today he saw me laugh HARD when he got his foot tangled up in the net while we were playing kickball.  As this week went on, he quit trying to hide his smiles. This is something that I will never ever take for granted.

I could go on and on.  But I will end with this.  Yesterday we were talking about Ryan’s future.  It was a serious discussion, one we revisit every once in a while.  I was talking about how I don’t think (I did used to, but not so much any more) Ryan will ever live alone.  That is for another post, my thoughts on that, but yesterday I was explaining guardianship, and then Shawn said something to me that will stick with me forever.  And it was a total contradiction, but it is exactly what is in his head, and it shows that I am not the only one conflicted about how to handle Ryan.  The fire alarm went off immediately after he said it, so I did not pursue it, but that’s probably ok, because it was unexpected and I need to process it before I address it.  The second most interesting thing he said was “My kids are gonna have a really fun uncle!”  This is very likely true.

But then he said “What I hope is that Bella and I can finally create a stable environment for Ryan, one where he can just do whatever he wants.”  I don’t know what that means.  I hope I don’t have to get run over by a bus to find out.











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