Round Two

Friends:

Something has been weighing heavily for a few weeks now but it was not my story to tell. However, my dad recently chose to share his story, so I can now share as well.

Two months ago, my dad was diagnosed with esophageal cancer. Several appointments and tests later, we now know it is a dangerous form of adenocarcinoma, Stage III, with involvement of one localized lymph node.

Dad just officially retired a couple weeks ago, which had, of course, been planned all year; we just weren’t expecting his retirement plans to be consumed with cancer treatment.

He began radiation therapy today, and chemo starts tomorrow. He will have 5 and a half weeks of these treatments, followed by a two-month “break” before they perform surgery to remove the malignancy. The surgery is extensive, essentially removing the majority of his esophagus (plus that stray lymph node), and then using the upper portion of the stomach to create a new digestive track. The recovery will take several months at best.

For those who don’t know… this isn’t my dad’s first rodeo with cancer. He was diagnosed with non-Hodgkin’s lymphoma in 2007; he was successfully treated and has been in remission for 10 years. But they say that if you’re going to get cancer, NHL is the kind you “want”, as it has the highest successful treatment rate. Esophageal adenocarcinoma doesn’t carry the same optimism.

Fortunately for Dad, it was discovered before it had metastasized, which is one reason for its lower recovery rate. His oncologist believes that with This aggressive treatment plan and a successful surgery, Dad’s odds of survival are 65%. That’s a helluva lot better than the normal 25% odds of someone at Stage IV.

If you know my dad, you know he’s one of the strongest people I’ve ever known. He is brave and otherwise healthy, which is in his favor. He has a good care team in place, friends in Colorado to help him, and a family (including a brother who is an MD!) who are supporting him completely and will be helping as needed. Right now, we are asking for your prayers, thoughts, healing energy, and positive vibes as we tackle this horrible demon yet again.

P.S. Yes, my Munchkin knows what is going on with his grandpa. We decided that he was old enough and this was too serious to keep from him. So far he’s handling it well, but keep him in mind as well as we face the weeks ahead. He has a big heart for a little guy, and he loves his grandpa. They are looking forward to a “boys-only” Rocky Mountain camping adventure once Grandpa is well enough to go… a retirement promise that Dad really wants to keep.

My dad, The archaeologist, teaching a session in Colorado
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Dating while Brown in a Red State

Antonio is coming in for the weekend tomorrow.

I finished two of my summer classes this week, so he thought he’d come in so we could celebrate a little. He was thinking ice cream. But I have been trying to find ways for us to get out more, now that I’m so close to having life return to somewhat “normal”.

One thing we both enjoy but for some reason have never done together in our three years is go wine tasting. We’ve tasted at home, or at dinner, but not gone to a winery and just enjoyed a leisurely tasting. So I thought, “Hey! I could surprise him with a trip to French Lick!” I haven’t had a nice glass of French Lick Catawba in ages, and that sounds just lovely. And I hear their cafe’ (which is new since I was there) is really good.

And then I suddenly realized… I don’t know if it’s safe to take Antonio there.

My dad’s family is from Orange County, Indiana… home of French Lick Springs and the incredible West Baden Springs Resort. If you’re from down there, you call it “the Valley”. Springs Valley, to be more precise. My grandpa was born there. My great-grandparents both worked for the hotel’s original owner, Mr. Sinclair, back before the Great Depression… my great-grandmother was a maid who used to babysit the Sinclair children, and my great-grandfather was a livery driver who , as family legend holds, used to drive for Al Capone when he came to town.

But there’s a darker side to Springs Valley and Orange County. The side that was – and still is – a stronghold of the Klan. My big family secret is that I am only a few generations descended from a grand wizard of the KKK in Orange County. We don’t talk about it, OBVIOUSLY. It’s not something we’re proud of.

What I am very proud of, however, is how my parents made a conscious decision to raise my sister and me differently. To raise us to be accepting and to understand that race does not define a person. My dad’s interest in anthropology and my mom being raised by someone who grew up in a multi-ethnic community in Canada went a long way toward their own personal views of being people who embrace diversity, and passed along those values to us. My dad and his brother have both deliberately broken a generational “curse”, so to speak, in raising children (me, my sister, and two of my cousins) to be open-minded, accepting people who work with, love, and befriend people from all walks of life. (My two cousins are both doing amazing work in the areas of LGBTQ+ advocacy and Native American advocacy, but that’s another post.)

But down in Orange County, the Klan still lives. Even some of my extended family never outgrew those old, dangerous ways of thinking. Lots of people down home still believe in racial segregation and white supremacy. They’re not people I’m close to, but I’ve been to family reunions in the past and you hear things. Back before I knew how to speak up.

I can take Antonio somewhere else. We can come up with plenty of other places to celebrate, to spend time together. I can even think of a dozen other wineries nearby where we could do the same thing. But three years in, this is the first time I’ve run into a situation of not feeling safe to take him somewhere. I am so insulated from this in a way, because my home here in Bloomington is so diverse and all-embracing (for the most part). That’s the beauty of living in this literal liberal mecca in the middle of red Indiana… Antonio and I never feel unsafe together in downtown or out-and-about. But that’s not true all around us.

Bloomington is a bubble. Sure, we joke about “never pulling over in Martinsville”, but the fact of the matter is that this is real. Especially under the current administration. I sometimes recheck Antonio’s wallet just to make sure that his US passport ID card is still there, even though I know he never takes it out… just as peace of mind for me. I worry sometimes when he’s out flying, because while he may be relatively safe in an airport, we don’t always know what lies outside the terminal for a commuter crew. I worry that someone with an agenda may pull him over and never stop to determine that he’s a naturalized American before something terrible happens.

I don’t have any answers for this tonight. I just needed to write. For all the horrible atrocities taking place in our country tonight, for all the scared children ripped away from their parents at our southern border, for all the black and brown people being murdered in the streets… I see you. I know that my issue of where to go on date night is nothing compared to what you are facing just for being alive in what-used-to-be-America. I’m so sorry. This is not what we are meant to be. I promise to keep using my voice to fight for you, and to keep my eyes open. We can’t go back to this being normal.

In the meantime, I’ll be coming up with a new idea for date night.
I can buy my French Lick wine at Kroger. I can never buy another Antonio.

Take my hand, my son…

Today was a really emotional day.

Mom and I spent most of the weekend in our hometown working to prepare my grandparent’s house for auction. The household goods were loaded into a truck today for the auction later this week, and we’ve been painting and cleaning for months now to prepare the house itself for sale.

We were already tired when we got back today. At one point, I opened a box of Christmas decorations while looking for something, and I was struck with a familiar scent that took my breath away… my grandma. I choked down the lump in my throat, because we had work to do. Family tension did nothing to relieve my emotional state during the afternoon. A drive home, groceries, and picking up the Munchkin, and we were finally home again.

But as it turns out, I wasn’t the only one feeling emotional today.

It was a rough evening for my Munchkin, who is struggling right now. He doesn’t want to go to his dad’s house, and yet he has an extra overnight this week (which puts him at dad’s for 6 of the next 7 nights). He’s tired of being stuck in the middle. He doesn’t understand why his dad and stepmom say such mean things about his mom and grandparents. He said he is afraid that if he tells his dad how he feels, he will just be punished yet again. He told me that he is worried that if he tells people how he feels that nobody will believe him.

There were lots of tears before bedtime from a boy who is afraid to hurt anyone, and yet is quite tired of being a pawn in this grownup mess.

He may be 13 now, and he may be just a couple inches shy of surpassing me in height, but sometimes he is still very much my little boy. He still loves to snuggle. We still have a bedtime prayers routine, without which he will not go to bed.

During that routine, when he has had a rough day, I still sing to him. Usually he wants “Too-Ra-Loo-Ra“, or “You are my sunshine.”

But tonight when I tucked him in to bed, this old song popped into my head:

Day is Done: Peter, Paul, and Mary

A sign? Maybe. All I know is that it felt like the right song at the right moment.

Earlier during his meltdown , I talked with my Munchkin about our “village”. That his village was going to get him through all this stuff with his dad. That he can trust these people around him, in the village that mommy has built for him, to believe his feelings, to listen when he talks, to help him face the hard times. That just like his favorite heroes Harry Potter and Percy Jackson… even though things won’t be easy, he won’t ever do it alone. That it will be worth it in the end, and that I, along with his village, believe that he will get through this.

Sometimes I can’t tell if I’m making him feel any better. Tonight was one of those nights. But I tried. God, I hope it sinks I to his heart and helps bravery rise up within him. After I just hired yet another attorney, and my own faith falters, I pray that when I said to have faith in his mom and in our village, that it planted a seed.

Sometimes, I’m not sure whether being the mom or the kid in the middle is harder…

Mixed feelings on World Autism Day

Once again, the time has come where blue bulbs grace front porch lights and enormous monuments around the world are robed in blue light. It’s World Autism Awareness Day… an international movement that has most certainly helped to make people “aware” that this thing called autism exists in our world.

But it has not necessarily brought the understanding that it should have. Despite all the media attention, so many people still fail to understand what the spectrum is, or how people exist as a part of it. There is so little understanding of high-functioning autism, or atypical forms. There is so little understanding of what life is truly like for those whose entire existence are consumed with caring for a person with severe autism. And the nuances of diagnosis – being able to distinguish between Asperger’s, PDD-NOS, or other atypical forms – have been removed from the system, for better or worse.

I mention this because at this juncture in our lives, I am experiencing mixed feelings about what it takes to “be” autistic. What does it take? What does it mean? Can it be “cured”? Does improvement mean it has “gone away”?

My son just turned 13. Last week we had a regular appointment with his psychiatrist – the one who initially made his autism diagnosis over 6 years ago. As we were talking, we discussed some newer evaluations and assessments that we had done. We discussed how he is doing in school. We discussed the behaviors that are posing challenges for him right now.

And Dr. K said that if she met Riley right now, she would probably not place him on the spectrum.

So what does that mean?

Does it mean he was never really autistic?

No.

It means that all of the intervention and therapies that we took advantage of WORKED. All the many hours of ABA and OT and ST and changing schools did exactly what they were meant to do.

Me being “that mom” at IEP meetings, advocating like crazy and never taking no for an answer?
It worked.

Me refusing to listen to nay-sayers like my ex-husband who swear that there is nothing wrong with my son that screaming and punishment can’t fix?
I was right.

But listen… this isn’t about vindicating me. It’s nice, but it’s not what this is about.

What this is about is giving other families hope that intervention can help. What this is about is listening to your gut instinct about what your child needs and fighting for it.

My son still isn’t without challenges. It’s just that as he grows and matures, he has caught up developmentally to the point that sensory issues are not the most pressing issue for him. Now his biggest struggles stem from moderate to severe ADHD, and everything that goes along with it… impulse control, struggle to focus, personal space, and all the rest. We still need our IEP. We are still working hard to keep grades up and teach study habits and find ways to cope with stress and fidgeting and social situations.

All that being said… for some families, there will be a limit to improvement. Some families will – sadly – never be as lucky as we have been. And I call it luck… because while we put in the work to get to this result, life could just as easily have gone a different way for us. I don’t know the reason why some people have severe autism that never improves or only improves to a point with therapy, while others like my son make enough progress to be “removed” from the spectrum. It’s one of life’s great questions… one for which I don’t have answers.

So today, I’m still wearing my blue. I’m wearing blue to honor our journey to get from angry nonverbal toddler to smart funny teenager. I’m wearing blue for all those other families… both for those who are working every day to make progress like my son has, and for those families who are working every day just to get through the day. For those who will live with this incredible, beautiful, and frustrating lifestyle for the rest of their lives.

Is my son “cured”?

I honestly don’t know how to answer that.

He is what he is, and who he is. Maybe I don’t need an answer to that question.

Am I afraid of what others will think?

Yes.

Will others think that I’ve been making all this up, just like my son’s dad has sworn all along? Maybe. But I hope they won’t. I can only speak what I know to be true.

I am not a doctor or a therapist… I just happen to know a lot of really good ones, and fought to get access to them for my child to get past his own personal hurdles. I don’t know if the label you put on it really matters. My child needed help, and I got it for him. It wasn’t easy, it wasn’t cheap, and it meant me taking on the mountain of emotional work that is advocating for one’s child in a world that doesn’t really quite understand him… a world that is built for and run by neurotypical people.

But I’d do it all again. Just like every other caregiver out there who loves someone on the spectrum. We just do what we can do. We get through each day, and take advantage of opportunities for help and progress where we can find them. At the end of the day, it doesn’t matter what we call it, or where on the spectrum we live. Anyone who loves an exceptional or 2e person is just doing what we can to give them the best life possible, even if that looks different for every family.

Because regardless of label or diagnosis… I love this life, and my kiddo – struggles and all… and I wouldn’t trade either for the world.

On Behalf of a Grateful Nation…

Ed. Note: This piece was written both as catharsis on the loss of my grandfather, and as ethnographic research paper for Dr. Marvin Sterling‘s ANTH-E393 World Fiction and Cultural Anthropology class at Indiana University. It is both biographical and fictional. 

The sky is a brilliant blue. There’s a warm breeze drifting up over the hill from the river below. The beauty of this late summer day betrays the solemnity of such an occasion. I’ve always thought so. Some might complain about duty in the cold or rain or snow; to me, it always felt like the weather should match the mood. It’s as if the warmth of the sun is a slap in the face to a family in mourning.  Continue reading

Thoughts from the wee hours…

Living with a dog with a small bladder is like having a newborn again. You sleep in short chunks with multiple mid-night wakings. After having just climbed back in bed after yet another late night trip downstairs with Molly, I have so many random thoughts floating around…

• Note to self: I sleep better if I claim my half of the bed from an Equatorial perspective (top half) rather than a meridian (right half) perspective. At least with the dogs… not sure about the pilot. 😆 These days when the Munchkin is gone to his dad’s, I end up with the Pug and the Bulldog in bed with me, while the lab is in the dog bed in the floor next to me. Did I mention they snore? They all snore…

• I am so behind on writing and homework right now it’s not funny… and I’m having so much trouble forcing myself to actually work. But the end of semester looms… and panic is starting to become a daily feeling.

• I miss my pilot. The worst part of this time in our airline life is not knowing when I’ll see him again. He’s working so hard to get through this challenging point in his career… and I’m so proud of him. But it’s hard. For both of us.

• My mother is so freaking amazing… she cleaned and reorganized my office this weekend and I can actually work at my desk now.

• There’s something really special, after having been blessed with a best friend for 22 years, to having a relationship with her daughter.

• The money for the semester never seems to last through the whole semester. I think one thing I miss about working, besides having a social life, is just knowing there’s a paycheck coming.

• It’s only 38 days until Rocky Mountain Christmas vacation! Hooray! I’m so looking forward to Christmas with both parents and my sister. It will be good to be away from Indiana over the holiday, so close on the heels of losing my grandpa.

• I don’t like having a friend living with chronic pain… but I do appreciate having someone who understands where I live who I can text at any hour to commiserate. My sweet friend in Georgia is dealing with a mess of back issues. I hate hearing how she hurts, how the pain is getting to her emotionally. But it is so comforting to be able to turn to someone who gets what it’s like to live this illness life, who knows how it feels to feel like a burden to others, who really gets how frustrating this can be and how much you just want to go back to “normal.”

• I had grand intentions on doing the “30 days of Thanks” thing this year… but lately I’m struggling to find the good. Not that I’m not very blessed and incredibly “wealthy” by so many standards. I have a home, a family, a beautiful child, an education, food to eat… but as I fight my own body every day, sometimes just to get out of bed, you get trapped in this internal place where it’s very hard to get outside oneself and recognize all that is there.

• Hypocortisolism is no joke. At a time when my pain is relatively well-managed, nothing is more infuriating than having to rest (or nap) after just a few hours… and on the days I force myself to get up and go all day, to then have to spend the entire next day (or more) recovering. I feel like I’m sleeping my life away these days, and I hate it. Thank God for my momma, who is helping me keep it together for my Munchkin. I’ll be glad when my new treatment starts working, in the hope that I can stay awake for more than a few hours at a time and maybe start to feel human again.

With that, I think I’ll try to catch a couple more hours sleep before class… hopefully…