Its 3:30AM and I’m not going to sleep. Its going to be a long night. I’m not feeling so mighty.
Before bed, Jacob was so upset.
“BEES! There are bees in the room. I’m so itchy” and he swatted at his ear.
I find three little strands in his ear. I pick them out. There are no bees. He feels hair falling out and it’s itchy.
I tell him that his hair is falling out.
“I don’t want to be bald. I don’t want to be bald like Lou.”
Lou is the child he met at NYU. The first bald child of so many that he has seen since, but he is the only one Jacob can name. Here in “patient” world, you don’t make friends. Friends are dangerous. Friends carry germs. He has no place for friends in this time and it hurts me for him, because he doesn’t understand that…yet.
It is only time before he notices. Everyone is on summer break and he still likes my show. He feels at home at the hospital, but I know that this is fleeting. I wonder when the novelty will wear off?
It’s like the first few weeks of school when all the students are on their best behavior. They are feeling out their teacher. Seeing where you can push and where you get straight into line. Its just human nature. We all put on our best selves for strangers. We only show our thorns to those we know and trust will stick around.
So I’m having a pity party. Its a party of one and my party is so painful that the only guest is sleeping, but the party is not for me.
It’s for Jacob.
Okay…I’ll be honest…It’s for me too.
It sucks to watch someone you love go through this, especially a five-year-old who has done nothing in this world, but adore his brother and be a kind friend.
So forgive me. Forgive me, person, five steps behind, for giving you hope that you can just ANGER it away. That you can look at people like Eve and say, the human spirit is capable of anything. Don’t get me wrong at times I feel that way (often). I see these families and kids and how incredible they all are and I want to do is DO. I want to WORK.
I really actually recommend that? Do you work? If you do, do it as often as possible. It’s good for you and your child. You need to work. I would argue that your work needs to helps make the world better to make up for all the ugliness around you. At least that is what’s working for me, but that has always been what’s worked for me.
So again sorry, no judgment! Sorry!
You do you. Sell cigarettes for all I care. Do whatever you can to survive.
Because at other times you can look at the exact same thing, like Eve, and come up with a completely different ending. At a different perspective, (from a pity party perspective), you just see suffering. Suffering for no reason. Suffering at the hands of evil.
You even begin to wonder what Eve would have done if she grew up with her parents and went to school with her twin sister like normal girls.
Maybe she would be a singer instead of “in real estate.”
Every day you will have to remember your strength.
You will have to surround yourself with people that remember it for you. You will have to separate from those who don’t serve you or your child (and that is painful! So painful). You will be surprised by who shows up in your life and who doesn’t. How distant friends reach out but those closest to you let you WAY down. And trust me…you will never forget. You will be tormented by the fact that you will never forget or forgive, but how can you?
But just remember how you handled it. How you were there for your child.
How I was there for Jacob.
I told him it would be okay. That hair would grow back. That daddy would go bald too, but he didn’t care. “I don’t want to be bald!”
And then I took his hand and I placed it on my roots, do you feel that Jacob? Do you feel that bump? Those are my extensions? See this?! Its all fake. None of it is real. Mommy is bald too. This was exciting. This was distracting. He felt my head like an alien planet. It rocked his world. This was cool. He didn’t ask any more questions.
And it’s semi-true, I’m not bald, but I don’t have much hair. I struggle with hair loss. Never had thick hair and after kids, some of it never came back. I would walk the streets without makeup and clothes, before being seen without my extensions?! NEVER. I would feel naked and ugly.
I get it. This is upsetting.
And I’m not saying you need to have extensions to navigate this, but honestly, they are amazing and something to consider. What I am tyring to express is that you will say something that works. Something that he/she can understand. Something that shows empathy, love and sometimes humor (if you can pull it off).
And only you can do that.
Because you are mom.
You are an amazing mom!!!
Randi Seigel Sent from my iPhone
Roz Lichter here– of course I am thinking of you and the family- Perhaps I can impart some knowledge from my own experiences with people who show up and those who don’t. But first I will tell you about a song Liz wrote for a political revue entitled “Now That I have cancer”- written way before she had cancer and while it was political, the basic frame work was that it frees you to be totally honest, to say things or not say things to people who disappoint and to release some people from your life- actually without telling them because it is a drag to explain to people that they didn’t show up. It allows that anger to substitute for real disappointment. I didn’t want people in the room (nor did Liz) who sat in the room trying to make conversation- they showed up in a good natured not phony way, but mostly it was easier just to have the small regular crew to be around for back up or emergencies. I remember one day when Liz was home and she was dehydrated, an acquaintance from the dog run took her car, picked Liz and me up and drove us a few blocks to get hydrated.
Sometimes people don’t know what you need. And if you want to, you have to tell them specifically what you need. The nurses at Sloan are supposed to be fantastic. Friends sometimes don’t know what is needed or not-
My best, with love,
Thanks Roz. I thought about Liz the other day. I thought about you too. All the people I know who have gone through the battle battle. All the people who were caretakers. Thanks. I’ll check out the song.
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