If you are a friend, you’ve no doubt heard me refer to the young Prince and my daughter, Sam. You may not have heard me discuss My Dude, who will be 20.
My Dude has lead a life of struggle – he’s no angel, despite his problems and all of our efforts, we could not help him. We tried our best, we failed him, but when he is ready we will try again, and again, and again, and again.
This left his mark on each of our souls in this family; they say when one person has a disease, the entire family is sick. (Whoever the hell “they” are, that’s about the only thing “they” ever got right.)
He also left his marks on our house. Walls written on, slammed doors, the broken dishes. They’re really silly little things in the grand scope of things, when you consider how many times we’ve had to start over: house floods, hurricanes. When his lows were so low and the anger beast would rage out of his fists and into the walls, nothing was safe.
For years, the holes would multiply, weekly, monthly, until eventually, I learned it was silly to fix them because they would come back, bigger, with more vengeance.
So we stopped. We stopped fixing the holes, we focused on simply surviving the best we could. We made horribly hard choices that parents shouldn’t have to make. He grew bigger, stronger, and his disease became more pronounced while he became increasingly distant.
Two years ago this week, what little was left of my world crashed down.
My Sam-I-am, left for the university; she’s my only daughter, my first born, my best friend, the first thing I had ever done right, and my biggest confidant. I wanted her to escape the madness, to spread her wings and go, but the selfish child in me wanted my friend, my baby, my daughter to stay. Two weeks before she left, I received a medical diagnosis that I kept secret for three weeks so she would go, as she’s the kind of girl who would give up her life to stay behind and help.
The diagnosis was so shocking, the amount of research was mind boggling while coping and adjusting our lives and goals around it. But we did. A couple months later, Dude had a break down, freak out, and then he left.
I have spent one and a half years without him, though he did briefly return twice. It didn’t go well either time, and both times he left on bad terms. Once, after a physical altercation with me.
Every night I go to bed not knowing where my son is, if he has eaten, if he is safe, if he is alive. When my phone rings from another state or an unknown number in the middle of the night, chills run up my spine and I feel like I will vomit, as I prepare for that phone call that no parent wants. Because I don’t know. I beg him to get to a doctor. A hospital. A police station. A shelter. Anywhere.
He’s never had a job. He’s never driven a car. He receives no welfare, no medicaid, no anything, he’s not a drain on your tax dollar, but does have mental illness and he is walking around this country. How has he survived? I have no idea. He is good looking, very good looking. He’s also very smart, and a great con man. I love him dearly but I’m not looking at the world through rose-colored glasses. I wouldn’t want anyone to cross his path because honestly I have no clue what he is capable of: he hasn’t been on medication for over a year and I can’t legally make him take any, as he is an adult.
So for this past year and a half, when I don’t hear from him for a week or longer, and I worry, or I get a call of him just talking crazy I can sit on my stairs and run my hand over that hole in the wall and try to absorb some of his pain. Because I am his Mom. It’s my job. Kiss the booboo, make it all better, right?
But, I can’t. I have never been able to make it all better. He goes from loving me to wanting me dead in one deep breath. So I leave the holes in the wall to remind me of his pain, to remind me of how I can’t fix him, how I can’t help him. All I can do is love him, remember that he is real, even if he isn’t here.
Over the last three weeks he was calling 10-15 times a day, and full of tiger blood and all grandiose, like Charlie Sheen. For some reason the stars lined up and a guy who did drywall came by, so I hired him and paid him. My dad went in the hospital last Friday. I spent the entire day in the emergency room until he was admitted. I got home and at midnight I got a call from another State that my Dude had been picked up, they wanted to know about his mental health and he had asked them to call me. I had to say horrible things about him, to strangers, who think I that am a mother who doesn’t love her son. What they don’t know is I love him enough to say those things so they will get him help.
I hope.
In a strange twist of fate. The law being what it is, I can’t find out if they have my son, if he is alive, where he is, how he is. Nothing. Tomorrow will make six days since I have had an update and it’s eating at me, yet I have to go on, with work and life and baseball games for the Prince, Sam-I-am turns 22 on the 11th and graduates on the 13th. Still, I know nothing about my Dude. I kick out jokes, posts, tweets, pictures, but why isn’t my phone ringing, DAMN IT? I am his mother, I need to know he’s okay.
I went to the stairs today, put my hand on the wall where the drywall had been fixed. I just sat on there and felt I couldn’t have betrayed him more if I had tried. I’m so sorry, Honey. I hope one day you will understand that I love you to beyond the universe and back.
To all the parents who feel like they are failing, messing up, being judged, on the edge or losing it: you will survive. While I can’t guarantee your sanity, you will survive.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
EVERYONE.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
MD Anderson Infusion Therapy
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.
A while back, I was Facebook-friended by someone with whom I’d gone to elementary school, a woman I hadn’t seen in 15 years. In that same week, I was friended by another schoolmate, a man I hadn’t seen in 25 years. I’ll call these two people, who are not Facebook friends with each other, Leia and Mork.
I was happy to be back in touch with Leia and Mork. Leia and I, and Mork and I, in separate sets of messages, chatted in the way that long-lost friends do, telling each other where we live, how many kids we have, what we do for work. We exchanged several messages. A few messages in, both Mork and Leia asked me what sort of writing I did. And so I told them, as simply as I could: I write, under a pen name, about my son, who likes to wear a dress.
And you know what? Both Leia and Mork never wrote back.
Maybe it was a coincidence. Maybe the conversations just dropped off in the way conversations eventually do, and it just happened to be after I dropped the pink-bomb on each of them. Maybe they both got busy, sick, or their computers went on the fritz.
Or maybe they got freaked out.
Because people sometimes do.
I notice that the tomboy in Sam’s grade who plays on the boys’ soccer team is cool and socially in demand, while Sam doesn’t get invited to many birthday parties. Sometimes people look at us strangely when we disclose that Sam, the long-haired kid they’ve taken for a girl, is a boy. Sam’s school administration can talk eloquently about diversity and acceptance up and down, except when it comes to gender, when they get all panicky and quiet.
I make it my business to talk to as many people as I can about Sam (while being careful of his privacy and his safety), to make gender nonconformity something that gets talked about, not something swept under the rug. Because when we hide something, we make it shameful. So I open my mouth, maybe even more than I should, and occasionally I lose an audience member or two, like Leia and Mork.
But maybe the next time they hear about someone’s son who wears a dress, they’ll remember that the woman they kind of liked back in elementary school mentioned something about her son wearing a dress, and maybe that will make it a little bit more OK.
Where my family lives, there are very few people who know what transgender means, even though we are a sizeable city. Not even the doctors here knew what transgender meant until we explained.
Imagine having two transgender children in a community that is extremely conservative and evangelical. The schools are unwelcoming. The churches are unwelcoming. Most people reject the local LGBT individuals. The state legislature is actively pursuing bills that legalize discrimination against people like my children.
Given that the trans population is less than half a percent of my state’s population, the lack of awareness of trangender people is unsurprising.
Visibility of transgender people in the media is increasing, but not at a rate fast enough to make a dent in the general population. Here, where we live, at least, visibility occurs as the few LGBT people come out of the closet to their families, friends, coworkers, and ultimately to the community as a whole.
Being out in a conservative, Republican city and state is often dangerous. Add in any other minority characteristics and the danger to the individual increases exponentially.
My two wonderful teenage transgender sons have to navigate this world. It is terrifying to think of them in the school setting (so they are homeschooled), unbelievably frightening to think of them out there alone and out as they medically transition in the future.
Transgender visibility and awareness is vitally important. My kids were born into the wrong bodies. In the second trimester of my pregnancies, each of them were exposed to increased testosrerone, changing their brain structures to resemble male brains (https://www.sciencedaily.com/releases/2018/05/180524112351.htm).
Like sexual preferences, being transgender is not a choice. My sons, despite the identification at birth being female, are male. Because they are trans males, they are the lucky ones. They are less likely to be abused, less likely to be killed than trans females. They will, with testosterone, grow facial hair, increase their muscle mass and deepen their voices. They will enter into society with the stereotypical male look with ID cards that match their genders.
Most transgender people are not fortunate enough to have accepting families and doctors. Most struggle and suffer because of the extreme prejudices they face.
As allies to the LGBT community we can help change these struggles. We can make sure that all people are accepted and treated equally. Trans visibility is key, but without our speaking up for the community, for our friends and family members, change will be slow. We must make this a seismic change.
I love my dogs. It’s not unusual, nor is it something not to be proud of.
I’m unable to have children, but dammit, I’m one hell of a doggie mom. I’m not all weird about it or anything – I don’t have little puppy clothing or diamond collars. I don’t buy my dogs exotic food more expensive than my own.
I do let the little dog, Bettie, sleep on the bed with me, and I totally use a weird voice when talking to her. I even call her “Pretty Girl.”
Ugh. I’m sickening.
I let the big dog, Fritz, sleep on the bed when the husband isn’t in it. He’s too large to sleep on the bed if that pesky man is there, otherwise you bet your sweet ass he’d be cuddled up next to me and Bettie.
I play fetch with Fritz – who also goes by “Mr. Foo” and “Handsome Puppy Face” – with his squeaky hedgehog toy. He’s nine and has arthritis in his hip, but he’ll run around like a puppy when you throw something for him to fetch. I swear he thinks he’s a year-old pup.
He can “sing” on command, and I’ve learned recently that he digs Motown and ’80’s music. He sits, shakes, and stands up either by hand signal or vocal commands. He even smiles! I promise. I have pictures to prove it! He’s the sweetest boy you’ll ever meet.
Bettie isn’t quite as talented in the ol’ trick department, but she makes up for it in cuteness. She’s small and shaggy and sweet. She follows me around the house wherever I go – like we’re on some sort of adventure when I’m walking to the refrigerator to grab a soda. She has some bizarre quirks like growling when a cell phone, soda can, or the like come near her tiny, little face. We’re teaching her to do some of the tricks that her “brother” does, but so far all she’s learned is how to sit and sing… sort of. Nothing cracks me up more than her high pitched squeal that is indescribable and oh-so endearing.
She’s a Mama’s Girl, even if the husband does call her “Daddy’s Little Princess” when no one is around.
For my Dose of Happy, I thought about writing about the husband (I still may), but I decided that people like me, who are/were unable to have any children, would appreciate a little levity about being a pet parent.
I love my dogs, and even though I was not able to conceive, I still have my sense of humor. I also have two furry creatures who need me.
They’ve been there with their unconditional love every time I’ve needed it. They’ve helped me when I was so sad I couldn’t breathe. They’ve listened to me sobbing and screaming. The only thing they have ever needed in return was my love. I don’t think that’s too much to ask.
I have a son. He’ll be four in a few weeks – a sweet, smart, active little boy with a big heart. However, his father and I split up over a year ago, largely because I wanted more kids. While we had agreed upon it previously, he later decided that one was enough. He loves our son, of that I have no doubt, but he refused to have another child.
I’d had enough.
The breakup was nasty but I agreed to shared custody. Leaving was the hardest thing I have ever done – not leaving him, but sleeping under a different roof than my son. However, our custody arrangement is such that I see my son pretty much every day, and most nights. At least it’s bearable.
My son keeps asking me to bring home a baby for him (which is just so darn cute), but I wish it were that simple. I want another child. My biological clock is ticking louder every day. In a few months I turn 40. Somehow that number has always seemed the age I should be finished having kids.
For the past nine months (irony, anyone?), I’ve been actively searching for Mr. Right. Someone intelligent, attractive, single, honest, interesting, gentle, kind and creative, who likes kids and wants to settle down – and who hasn’t had a vasectomy. There isn’t anyone like that in my regular life so I’ve tried four different internet dating sites. So far I’ve met 18 local men and, well, short version: no luck.
So I have a choice.
I can take the risk and wait, or I can cut out the middleman (pun intended) and just do it myself with the help of a local fertility clinic.
I can afford the procedures and they’ve accepted me as a client. I’m lucky to have a job that will pay me almost my full salary for a full year of maternity leave, and a great health plan that covers most costs. I make enough money to be able to support another child. What more do I need, right? Case closed! Decision made! Sign me up and show me the stirrups!
Then the doubts set in.
If I get pregnant this fall, my son would be five by the time the baby was born. Is it fair to him? Will I have the energy to do all the things he needs me to do for him? Will I be able to get him to school on time – help him with his homework? Will he resent sharing his bedroom? Will he resent sharing me? Will his father think that he can steal our son away from me because I have another child? I wouldn’t put it past him.
Is it fair to deprive a child from knowing his father? Will the baby wonder? Will this baby resent that my firstborn son gets to spend time with his father but he or she can’t?
I remember those first months (and first years) of having a baby. It’s exhausting. Not enough sleep, constantly on call, never a moment of privacy – and that’s what it was like when the father was there to help out.
What happens if I’m on my own? No one is going to make me a sandwich. No one is going to vacuum for me or unload the dishwasher. No one will change a diaper once in a while to give me a break. No will bounce a teething infant for an hour or two in the middle of the night so I can sleep. No one will pick up groceries from time to time.
I will have no one to rely on but myself.
I don’t have family around, and all of my friends are leaving town one by one – it’s their careers, I always knew they’d be going sometime. Could I hire a doula for the first few months? A nanny? How much would that cost? Can I afford it? How do I find one? Would she expect to live here in my tiny house? Where would I put her?
What would it really mean to have a child on my own? Can I do it alone? The only single moms I know had a hell of a time, and they had friends and family around to help. What if I have twins? How the hell would I handle that on my own? My mother was a twin.
