Wednesday, November 13, 2013

Identity Crisis

For many, many years, I identified myself as the mother of a child with special needs. That was foremost in how I thought about myself; if affected nearly every choice I made, every day. I read blogs by other parents of kids with special needs, I debated the importance of person-first language, I knew the acronyms and the slang. I knew my place.

I was okay with telling people "No" when necessary. No, we can't go on that trip, because Adi can't handle it. No, I'm not going to be room mom, because I have to take Adi to speech three times a week. No, we can't come for dinner Friday night because Adi will fall asleep and he's too heavy to carry home.

I got good at deflecting "I don't know HOW you do it." I got good at building up walls and simply not exposing myself to certain people and situations. I got good at keeping my cool when Adi went ballistic over nothing. I got good at telling people that yes, we do give him his ADHD meds in the summer and on the weekend, because the noise in his head is there ALL THE TIME, not just on school days.

But through it all, Adi has always been a healthy kid. In fact, that was always my line, when the doctors would ask, "Is he generally in good health?" I would say, "Except for the whack DNA, he's great!" And they would glance up at me for a second and make a note on the form.

And then everything changed.

I am still finding my way as Cancer Mom. In the special needs world, a tremendous amount of attention is on the parents -- at least in my experience. We blog about our experiences in parenting these children. We bond over failed IEP meetings, support each other when it's time to do evaluations for insurance purposes -- which typically have precious little to do with our children's actual abilities -- and so much of the story is about us, the parents.

The cancer world is different, so far, in my experience. The story is about the kids. Which is as it should be, don't get me wrong, but I'm not sure where I fit in here. I write here about my experience in parenting a child with cancer, about how it affects me, about what I am feeling and thinking and so on -- but I'm not sure of my place here. I feel like I don't know the lay of the land. There aren't so many other cancer mom blogs out there -- or at least I haven't found them.

What I mostly see here in Cancerland are blogs where parents report what happened today, what's scheduled for tomorrow, the results of that test we did some time back. I can barely bring myself to summarize an appointment orally for my husband. To write it up? There is no way. I mean, I can tell you that today we got to the hospital at 8am and at 1pm we were home after hearing that Adi's WBC count is still too low for chemo, so we're home until Sunday. We've discontinued Zinnat (the antibiotic we were taking for his umbilicus infection), and we're not taking 6MP (oral chemotherapy) in order to boost his counts. That's what a lot of the parents in Cancerland seem to write.

But what I want to tell you is how today the nurse who Guy thinks is mean told me, "How is Adi doing? Is he eating? Drinking? Talk to me." And I told her about how he's off the Concerta because we want him to eat, but he's really not eating, and he's throwing up, so I had this idea about Zofran and I'm not sure what to do about the behavioral issues, and my mom is sick, and she stopped everything, and in the middle of all the chaos -- and it is pure CHAOS on the outpatient ward because of the renovations -- she said to me, "Here is what you need to do. You need the doctor to give you a referral to our psychiatrist here, because she's amazing, and she can help you figure out the Concerta and she can help you figure out everything that you're dealing with, because it's too much." And there was so much noise around us, but she just kept me calm and focused for those two minutes, and I felt like we had A Plan! and a way to move forward.

And then after we met with the oncologist, the nurse stopped me and asked if we had arranged to see the psychiatrist, and I said yes, we'd see her Sunday, and the nurse's face lit up and she hugged me and said, "Good! Very good!"

What I want to tell you is how my husband's cousin came and brought breakfast -- cheeses in tiny cups and homemade bread, and a plate of chopped vegetables and coffee in a thermos -- and how we sat outside and had a little breakfast picnic just inches away from where the other oncology parents smoke, and it was this crazy oasis of almost-normal-but-verging-on-lunacy.

What I want to tell you is how I read an article yesterday about how to be a good grandparent to a child with special needs, and at first I wanted to share it on Facebook, but then I thought two things in rapid succession:

1. My own parents already figured out the vast majority of this stuff along the way (and I have to say, it has been a TRIP watching them learn how to be grandparents to Adi, in a very positive way).
2. I feel almost outside the special needs world right now, because when we "just" had Sotos syndrome, life was apparently REALLY EASY, in the way that any parent of multiple children realizes how VERY EASY things MUST HAVE BEEN back in the days of a single newborn.

So. Basically, I feel a little lost, and I'm not sure who I am right now. And I'm not sure how much my own story counts right now.


Anonymous said...

Sounds like you are keeping your identity through all of this, in a good way. We all have plenty of hyphens already: working-mom, stay-at-home-mom, special needs-mom, chef-chauffeur-CEO of home-married-recreation coordinator-, etc.-mom. Who says you have to be cancer-mom? Cancer is temporary, the rest endures. Cancer doesn't have to define you. You obviously have to take care of yourself first, before you can take care of all of the hyphens. Person first language applies to you also:Abbi, who happens to be a mom, wife, etc...just my 2 cents...

Anonymous said...

Have you checked out Jane Roper's blog? Her daughter has leukemia. She is great!!

Crystal T. said...

Your story definitely matters. Adi couldn't get through all of this without you.

I think the identity crisis thing is part of this cancer journey. I remember asking a friend, right after Jack was diagnosed, whether he was now considered a special needs kid. She didn't know, either. Cancer is...different. But why? Because it's (supposedly) temporary? The thing is, even when the cancer goes away, all the experiences will be in our memories. We are forever changed.

All I really know for sure is that cancer is a mind fuck.

And I agree - there seem to be so few blogs out there for parents whose kids have cancer. That is one of the reasons I've written so much about it - to encourage others. But also because I just don't have time to go to a freaking support group!

Abbi Perets said...

Thank you to my 2 anon commenters. Yes, I do read Jane Roper (she's great!) and Crystal T, aka ewokmama. I'd have lost my mind without the two of them. :-)

Abbi Perets said...

Crystal, yes, the experience stays behind. And yes, there is no time for a support group! (But we should really go out drinking with Jane one night.)