Category Archives: Prose

Stories, Essays, Ramblings

Why I Don’t Want to March…

Standard

img_2841

Why I Don’t Want To March in Washington D.C. On 1/21/17…

• I’m fairly short and can get claustrophobic in big crowds.
• My knees need to be replaced and have this inconsiderate habit of dislocating easily.
• I’m not fond of cold despite having grown up in Minnesota, or maybe because of growing up in Minnesota.
• I am acutely aware of how excruciating it can be to need to use a restroom and not be able to access one for hours and hours and hours to the point where peeing in a cup in public seems preferable to holding it one more second – and I never wish to experience that dilemma again.
• I, minute by minute, navigate an incredibly complicated and stressful life as a working mother of two children who both have very demanding, and time consuming to manage, special needs.
• I don’t really have the spare minutes that make the hours that make a day to devote to fighting traffic and crowds to get into and out of DC.
• I’ve had MS for 25 years and when I get really, really cold, I can become incapacitated, like quaking-statue-fixed-to-a-spot-incapacitated.
• There is enough on my plate already every day to make the dish split under the weight and rain the messy contents to the floor.
• My heart is pinched with worry about the actual survival of my children because of their health issues (that is not hyperbole).
• What would happen to my special needs kids if something bad happened to me?! It would be awful, scary, and a time suck to be arrested for protesting – or even worse, to be a victim of violence while I participate in my civil right to march.
• I don’t want to draw attention to myself or my political beliefs and thereby draw ill will from anyone and jeopardize relationships or employment.
• I wish I could just stick my head in the sand and avoid the news and wait these next four years out – hope for the best – let people with healthier bodies, who are younger, with less demands on their time, not as much at stake, and more resources, to do the heavy lifting politically.

Why I Will Be Marching In Washington D.C. On 1/21/17

• Because I am a mother of two children with special needs. The Affordable Care Act, although far from perfect and in need to revision, guaranteed my children could be covered on my private insurance until they were 26, that they could not be turned down for insurance because of pre-existing conditions, and that there would be no life-time caps on coverage.
• Because no person deserves to lead this nation who is so insensitve,  and lacks the emotional and political savvy, that s/he mocks anyone with a disability.
• Because women know best, in consultation with their doctors, about decisions related to their bodies and when, if, and if ever, to become a mother. I am horrified by the thought that my developmentally disabled daughter may be blocked from having access to birth control that prevents her from getting periods, which she cannot manage on her own. Or that, an even more terrifying thought, if she were to become pregnant, all options regarding her health and well being would not be available to her. Abortion needs to be safe, legal, affordable, and accessible for all.
• Because I am a sexual assault survivor and will not accept excuses for the perpetuation of a rape culture by dismissing vulgar, objectification of women and girls as “locker room talk” and something that is acceptable and normal and to be tolerated.
• Because I am a woman and should be paid equally for my contributions to the work force as any man might be paid for the same job.
• Because I value and celebrate diversity and acknowledge this country is mostly made up of immigrants. Our cultural differences, various religious beliefs, numerous ethnicities makes this country stronger.
• Because I believe the best path to our future will be forged through diplomacy and cooperation instead of amassing greater arsenals, threatening military action, or engaging in war.
• Because our Earth home has finite resources and we need to protect the environment for current and future generations to be able to thrive…and survive.
• Because I believe it is fundamentally wrong to give tax breaks to the super rich and subsidize corporations when citizens of the United States are going hungry, do not have safe and warm homes, or good healthcare.
• Because it doesn’t matter who you love, but that you love. Everyone has a right to be just who they are without fear of judgement and marry who they love and have equal protection under the law.
• Because I believe in supporting great pubic education for all, which includes access to affordable higher education.
• Because guns are used to kill people, not just for hunting or self defense, and there needs to be sensible regulations restricting assault weapons, and stockpiling guns, etc.
• Because Islam is not our enemy. Muslims are not our enemy. Extremism is the real issue – whether that extremism is expressed under the guise of Islam, Judaism, OR Christianity…
• Because Black Lives Matter. That does not mean Blue Lives don’t matter, or All Lives Don’t matter, but our black citizens, friends, family, coworkers, are being profiled and abused and killed and we should all care and speak up and not tolerate bias and discrimination.
• Because the PEOTUS has repeatedly shown he is quick to anger, vindictive, untruthful… all qualities that could cost us all dearly and lead to many people dying.
• Because the only one who can make anything better, ever, change things from bad to worse, is all of us taking the time to speak up and let our voices and concerns be heard.

I have a heart full of love, not hate. I believe in our democracy. I know our country can do better and be better.

I’ll be there. I’ll march. I’ll advocate. I won’t give in or give up.

Advertisements

Got You

Standard

img_2700 img_2701

It was not the usual way. There was not nine months to prepare, but rather three days.

When the adoption agency called and told me there was a baby girl, born, in the PICU, and did we want to be her parents?, that was the moment I became Sierra’s mom. Not later, after we saw her for the first time at the hospital. Not even after that when we had to give the adoption agency our final decision — were we willing to adopt this tiny baby whose life had started off with so many challenges? This baby girl who got pneumonia the day she was born, who couldn’t suck on a bottle without choking, who had received no prenatal care, whose birth mother was developmentally challenged, who the very-experienced-PICU-nurse told us had something seriously wrong with her even though tests were not yet identifying any major health issues, whose birth family had a history of significant medical and developmental challenges, whose birth father and ethnicity was listed as unknown.

I became a mom the moment I heard that voice on the phone say, “It’s a girl. She was born about two weeks ago.” Everything after that didn’t matter. Everything after that was just what happened next to our family. Yes, we agonized, in a way, over the decision for the first few days before we were allowed to sign the official paperwork and take Sierra home from the hospital. We were fearful, like any new parents, about the health and well-being of our newborn. But never once did I ever feel any desire to walk away from something I could have walked away from. We were not legally obligated at these early points to parent this child, certainly not at the inquiry call, or the follow up call once our pediatrician talked to the doctors caring for Sierra, or even once we first saw her and realized much of the information we’d been told on the phone was not accurate (such as the baby weighed 7 lbs at full-term birth; she was barely 7 lbs at three weeks when we first met her. She weighed 5 lbs when born). Yet, it didn’t matter. None of it mattered. She was my daughter from the moment I heard the words, “She’s born.” I loved this nameless, faceless, genetically unrelated, and still unknown baby fiercely, before I ever saw her hazel eyes and auburn hair.

I felt it. I felt motherhood. I felt it in the stillness that folded around me in my busy, noisy office where I took the call from the adoption agency that told me she was born. I knew it by the way my breath left my body and I didn’t need to draw more oxygen into my lungs for days – not until I finally got to see my baby and lift her up in my rock-steady hands and rest her sweet head on my shoulder. These hands knew preemies well, having helped my sister care for her preemie twins when I was a teenager. I saw my daughter, held my daughter, for the first time two days after I became her mother; took her home from the hospital three days after we met.

My husband and I had just three days and two nights to transition our lives and our home from childless to child-centered. We’d drive from Baltimore to Prince George’s Hospital every day to visit Sierra for as long as staff would let us stay — and stop at Babies R Us on the way home to buy as much infant gear as we could stuff into our car each trip: a crib, changing table, glider rocker and ottoman, onesies, rattles, bottles, diapers, booties, sleepers, stroller, sheets, pacifiers, diaper genie, car seat…

When we’d arrive home with the bounty each night, we’d spend the rest of the evening assembling everything and setting up the nursery. It was just us. We had no family in the state, no church home, and few available friends as we were relatively recent transplants to the area.

As we’d build the furniture, we’d turn over every medical opinion and report we’d heard that day about the health of our daughter. We’d spin it around and around like screws into misfitting pilot holes. The information was confusing and troubling, flat out frightening at times. This baby had yet to pass through our front door or rest her body on these newly-purchased giraffe-speckled crib sheets, but she couldn’t have been more our own. We agonized over her potential future, like any new parent who had been told their newborn may be at risk for… What? Some vaguely awful uncertainty. We worried for her, but I sought to adopt, in addition to my baby girl, my Grandma Jo’s advice to ‘not borrow trouble.’ So began this parenting journey of dealing with whatever this particular moment offered, reveling it or reviling it accordingly, but keeping the focus on right here, right now. (…there is no other place I’d rather be :))

My baby girl made me her mother the minute I knew she existed. Later, when I gave birth to a son, it was clear to me that love arrived no differently. Not with adoption. Not with birth. I’d always suspected that and claimed as much, but how could I really know, until I had experienced becoming a parent both ways? How your child comes into your life is irrelevant. That they do, is all that truly matters.

As to the rest, what happens, happens. Parents dream of bringing a healthy child into their home. Dream of the best possible outcome for the baby. Want the world for their child, and hope that the world will always be kind and generous and gracious to their offspring. Some get mostly that, others don’t. We are all fragile, imperfect beings. Babies arrive DNA already spun and as dads and moms we do your best to help them achieve the most they possibly can with that glorious, preset double helix.

We love them. We love them strand for astounding strand, regardless of how or when or why they arrived in the shelter of our arms and homes and hearts.

I love my daughter, who grows older and yet doesn’t grow up the same way most other children do. Happy 21st Gotcha Day to my remarkable Sierra Jule. Thank you for confirming for me love is love is love is love. That we eventually found each other is what matters. That I get the honor of being your mother…is everything.

 

October 23, 2016
Julie Ayers

Rescue Mom

Standard

“Do all the good you can. By all the means you can. In all the ways you can. In all the places you can.  At all the times you can. To all the people you can. As long as ever you can.”
― John Wesley

I saw a bumper sticker on a car today that said “Rescue Mom” and I got all excited.

I didn’t realize regular people did this! How wonderful that this woman stops her car when she spots stray children and tries to help them.

Maybe she’s part of a more formal network that takes in abused or abandoned children and cares for them until they can find them a loving, forever family? No doubt, everyone who is part of this network is a volunteer, doing this work for free because it is important and needed and they understand children have rights too and deserve protection and the very best life possible.

They lavishes these cast offs with the affection and attention for which they are starved. First thing, they help them clean up so they feel better. They take them to a salon to be pampered and nicely groomed, or perform these same types of tasks at home if they happen to be experienced barbers and stylists. They give them mani-pedis. Maybe even put a pretty ribbon in the hair of the girls. Buy them adorable outfits and warm coats. Take them to be checked out by a doctor to make sure all their vaccinations are up to date and they are getting any medicine or treatment they might need to address conditions they might have.

They feed the children well, even whipping up delicacies to delight them. Teach them how to be part of a family and live in a nice home with nice things. Teach them not to rip stuff up and destroy property and relationships. They do this by treating the children with respect, setting clear limits, and being fair and consistent. They are unshakably kind and calm, no matter what the child might do out of frustration or fear or simply because they just don’t know any better. They are patient and understanding, even if the children wakes them up repeatedly at night or has an occasional accident around the house. They snuggle with the children on the regular and praise them for their intelligence, sweetness, and beauty. They reward them for good behavior with treats and back rubs and hugs.

They give them plenty of their own toys to entertain them so they won’t be tempted to take stuff that belongs to someone else. They know boredom can lead to mischief, so they sign the kids up for classes where they have fun and are rewarded for making good choices and following directions. They take them outside all the time, for long walks and to the the park and for runs along the packed sand by the water’s edge. They play with them in the yard for hours on end. They spend time outside together every single day, whether it is sunny, rainy, or snowy.

No child is considered too sick or undesirable or unattractive or disabled, or even too old, to be taken in. They will gladly open their doors to a 17-year-old, even an 18-year-old, if the young person does not have a safe and loving home. Sometimes children are labeled a behavior problem and rejected by their family. These Rescue Moms understand that often that is more a symptom of parents poorly handling the training of a spunky child, and with proper interventions, that child can be a shining star. Or maybe the child does indeed have some serious behavior issues that cannot be resolved by even the most loving caregiver. Do these Rescue Moms give up on them entirely and send them to the shelter? No, they just find the right forever family that can love the quirky, challenging child for the amazing person he or she is.

Some of these Rescue Moms even temporarily take in fully grown adults who are in distress. Maybe their immediate or extended family just can’t help the person who is homeless right now or take care of them because their own resources are so limited. Maybe they are loved by their family very much, but their family just can’t afford to buy enough food, or pay for medical care, for everyone in the household anymore.

These Rescue Moms (and I bet there are plenty of Rescue Dads, too) are passionate and vocal, organized and energized by the belief that each child is innocent and important and that we as a society should do better by every single one of these dependent, helpless, loving beings. These selfless heroes produce commercials and public service announcements and campaigns letting people know about the plight of our neglected, starving, or abused domestic children. They will not hesitate to call the police if they even suspect a child might be being harmed in some way by their parents or caregivers. They will bravely step forward in any public setting to confront a person they believe is being unkind to or hurting a child.

These Rescue Moms proudly display bumper stickers on their cars to encourage others to get involved. Bumper stickers, like the one I saw today. These people, these stickers, serve to remind us that uncared for children are our responsibility and we all should be concerned that they get the help they deserve. They encourage us to look deeply within ourselves and ask the tough questions:

  • What kind of civilized society turns its back on its own children who are suffering and in need?
  • What kind of people?
  • Do we, as a society, value our precious children enough to act on their behalf and ensure each one of them is given the opportunity to have a wonderful present and future?
  • Do you?

Please note: No children, or animals, were harmed in the making of this satire.

(P.S. Before you write me off as being a hater, let me say that I applaud anyone and everyone for doing good things for their community and the environment. Go you! You rock and I appreciate all the amazing things you are doing because you let your loving heart guide you. And, yes, I do love animals, very much. But I can’t help being dismayed by how it seems to be more socially acceptable to publicize about, and advocate for, caring for neglected animals in the U.S. rather than neglected children. You don’t see many PSAs or bumper stickers and FB posts about our children – and adults — who are going hungry or are homeless or abused or emotionally discarded. You don’t see bumper stickers encouraging people to reach out to suffering children. And that seems just plain wrong.)

February 2016
Julie Ayers

Different – On the Eve of My Daughter’s 19th Birthday

Standard

On the eve of my daughter’s nineteenth birthday, I’m not thinking this year about all the things she isn’t doing that most nineteen-year-olds are. Things like driving and going to college or gripped in the midst of some massive attack of love or already planning a spring break trip to Florida with her friends. That kind of musing is so last year, when she had her milestone eighteenth birthday.

This year, I’m thinking about expectations and the continual process of learning to let them go and accepting what is Sierra’s experience and what she wants and what she gets from the world around her. I have lived my whole life in my one way. I see things from this narrow and fairly traditional path that I have walked. But Sierra continues to teach me that there are other ways of being that are different than mine and just because they are different doesn’t make them any less wonderful or important or meaningful.

Last night, we hosted a party to celebrate Sierra’s nineteenth birthday. I love birthdays. I love my daughter. I love parties. But I admit, I hadn’t expected to still be planning and hosting this type of party for my grown daughter. I’d assumed by this age, she’d rather spend her birthday off with her friends somewhere, maybe allowing her family to spoil her on the anniversary of her birth with special attention, gifts, a nice dinner out somewhere. An expectation I’ve held: organizing a big, noisy, cupcake infested, kids’ party would end somewhere around the early teen years. Instead, I have an adult daughter who still wants us to plan a full-on party like most other people do for their younger children.

Okay. Great! I’m all in. Why not? Fantastic. Sure. And Sierra enthusiastically begins planning her big day the day after her father’s birthday ends, as her birthday is the next one on the Family Fete Calendar. So, the morning of June 8th, Sierra woke up and said, “My birthday’s next, right? Let’s plan it. I want a cake and Tony playing banjo on the porch!” Okay, Little Bird. I’m on it. Whatever you want, my warrior princess. So we planned the party for three months. Sierra cautioning no pizza because someone on her guest list, Josie, can’t eat pizza. Sierra’s very attuned to the needs of the people around her and very thoughtful. Alright, no pizza, so we settled on tacos. We invited our good friend Tony to play banjo, and he graciously agreed and invited other musicians to play with him. Sierra wanted a few of her friends to spend the night. Not a problem. Well, maybe a little bit of a problem. Many of Sierra’s friends have special needs, like her, and sometimes things like spending the night in an unfamiliar place can present a challenge. Solution? Invite their mommies to have a sleepover, too, to hopefully make their daughters feel more comfortable. We planned and planned and discussed the party for months. Sierra picked out the cake and frosting flavors, helped shop for the party favors for her friends, assisted with cleaning up the house and setting everything up for the party. She was so excited and happy.

Now, my hope and expectation after all this talking and planning and re-planning would be for my daughter to have a really great time with all of her guests, be surrounded by their love, hug them, talk to them, spend time with them, watch the band she invited to play on the porch, maybe do some singing and dancing, later, snuggle on the couch with her friends and giggle as they all watched a movie together to wind down before all heading off to crash in her room.

And that is what happened – well, sort of, even if it didn’t really look like that to eyes unused to landscapes in a special world.

Sierra stood out on the front stoop, waiting for guest to arrive and screamed with joy when they did. She excitedly ushered the band back to the porch, hugged everyone as they came into the house, bustled around thrilled and completely overjoyed – and then she started to say mean things to me and her dad, lashed out at us and told us to shut up, pushed us away if we came near, refused to come out and sit with everyone on the porch, wandered off by herself in the house, didn’t watch the musicians from anywhere they could see her watching, told her sleepover guests she wasn’t going to watch the movie with them, complained she didn’t feel well, sat in the family room playing with the Wii as the party swirled around her, and went to bed early leaving all her guests downstairs. As to her peer guests – one never arrived at all as she was having a really tough time and melting down, another asked to leave and not spend the night as she’d rather sleep in her own bed, and another did spend the night, but went to bed even earlier than Sierra after spending the evening walking around mostly by herself and avoiding interactions with most of the other people. The other, more typically-abled kids at the event hung together, segregated by gender – boys video gaming in my son’s room, girls poking at their mobile phone screens in the family room. Meanwhile, the adults in attendance, one might even think obliviously and selfishly, sat on the porch enjoying the music, chatting, eating, laughing, drinking.

I could look at this and say the party was a total failure. What a disaster! But I know that isn’t truth. Maybe, back in the before, I would have entertained a thought or two like that — back in the before, when I didn’t really understand that what is important to my daughter, as well as to some of her other friends, is to be part of these events, even if they connect to them differently.

Sierra really did enjoy the music – but from a distance. She loved having everyone sing her happy birthday, even though she did get this panic-stricken look on her face as the singing was happening. She was glad everyone was here and enjoyed her party, even if she didn’t talk all that much to people and lashed out at me and her dad at points. It’s how she deals with excitement and tension. It actually doesn’t mean she’s unhappy or upset. It just means that she is really stimulated and looking for a safe outlet for those excited feelings.

The party was a success. Sierra feels loved and cherished and valued. She understands all of these people came together to celebrate her being. She was deep in the mix of loud and messy life and she did thoroughly love the unsettling experience of it – and, therefore, so did I.

I’ve learned to accept that our lives will always look different than most people’s lives. We’re a special family. So, go ahead and let the band play and the music flow. Let it spill through the screen and the walls and rush out into the night and touch everyone. Whether we stand and face it or close a door between it and us, we move through an air rich with it just the same.

Happy day that brought Sierra to us. We are lucky to have her here, loving us. Us, loving her.

IMG_7022.JPG

The Plunge

Standard

Seems like January should be a happy time for me and my family as it marks the anniversary of my daughter Sierra’s life saving kidney transplant. Six years and counting. Which is AWESOME-SAUCE, no doubt. That should mean we are hooting, hollering, and celebrating with giddy joy, right? So you’d think.

But here I am, feeling like such a Debbie Downer, a person with a tragically negative nature, as that is not the way I experience this period each year. I’m not thrilled and happy, even though I try very hard to be (and my inability to be happy means I also battle with feelings of shame and embarrassment, frankly , on top of everything else).

I am grateful, deeply, weepy-wild grateful, don’t get me wrong. I’m so grateful Sierra got yet another chance at a period of good, quality life. But, in addition to grateful, I also feel physically ill with anxiety and dread. Like my lungs can’t get enough air. Like my stomach wasn’t really designed to catch food after all. Each January, I seem to end up in this same emotional wasteland, even though I try like mad to avoid it, reconstruct it, spin it round to something sparkly and pretty. My malaise is generally kick started by Sierra’s transplant anniversary, then fueled by the necessity that she undergo her annual CT scan to check for a return of cancer, and an echocardiogram to make sure that her heart is not slipping back into failure.

Having a transplanted organ in her body means Sierra is at high risk for cancer. Very high. Much, much higher than other people who have transplants and are on immune suppression. Her body has already shown its intolerance for being suppressed. The critical drugs she needs to take to help give her the best chance for not rejecting the transplant are, for Sierra, like cancer fertilizer applied to the garden of her morph-proned cells. In 2006, Sierra’s lungs were speckled with lymphoma as a direct result of her immune suppressed status after her initial kidney transplant. To fight that cancer, she had to stop taking her immune suppressants and undergo chemotherapy, losing her transplanted kidney in the process, and nearly her life. Now, she again takes the same exact drugs to keep her second kidney happy that caused cancer to bloom in her system eight years ago. The oncologists would have preferred that Sierra never go back on her immune suppression regime, but she was barely hanging on to life while she was on dialysis after her first transplant failed. In addition to her transplanted kidney failing, her heart failed as well. We were facing the possibility that she need a heart transplant as well as a kidney transplant back then. My daughter would simply collapse sometimes as we walked down a market aisle, or she tried to sit on a chair in a restaurant, opened the refrigerator door.

Our choice at the time was to proceed with another kidney transplant, hope her heart would then rebound, and put her back on the exact meds that caused her cancer in the first place, or let her get sicker and sicker and die on dialysis. That simple. That complex and mind warpingly hard.

What she has lived through, what we’ve all endured during the past eighteen years, I would hope no one would ever have to experience. Dealing with Sierra’s very challenging health issues and crises is even more difficult because she is significantly developmentally disabled, is able to manage minimal self care, and actually endangers and injures herself through her behavior and lack of impulse control. Think about painful and hard and exhausting and unbelievably stressful and maddening and frustrating and frightening and seemingly endless. Now multiple all that horrible by the intensity of ten million. That might give you a sense of day one of this type of journey. And surprise, surprise, the next day is really no easier, nor the next. It’s terrifyingly difficult from beginning to end.

Hey, and this is coming from your unyielding apocaloptimist, glass-half-full girl even when I’m stranded in the desert, a card-carrying perpetually positive realist. I’m hardwired for happy. I got really lucky that way. But that still does not adequately immunize me from being occasionally kicked to the gutter and shoved down the storm drain by the circumstances of life.

So, this is where I sit. January. And yes, I seek help. I implement survive and thrive strategies. I try my darnedest to not let this happen, but happen it does, anyway. The fear creeps in, could all that come back? The reflections on the past prompted by the anniversary, the trips to the hospital, all make all those long gone, very scary, feelings surge.

This January wave that crashes down on me and that is sucking me out to sea will recede, like it always does. Once I get an All Clear report after Sierra’s CT is administered and read, and hear her heart is functioning within an acceptable range, the drowning sensation will abate. The waves will start to soften and stop knocking me against the abrasively sandy bottom. But I will be left rather distant, well over my head, when it finally goes, requiring me to slowly make my way back to that far-off, pretty shore.

All attempts to throw me life preserves, deck chairs, life lines, wooden kegs on which to cling as I work to stay afloat, will be so very appreciated.

Be well and mighty, fellow swimmers. Take a breath – and paddle on.

Misdirection

Standard

I’ve been trained to take a menace down with a coffee mug. Lodge the base in my palm and swing for the temple. The police officer instructing me in deadly force, deadly serious. I stopped going after that class, preferring the earlier sessions showing me the way to twist my body to escape grabs from behind, use momentum to break free from the fingers locking on my wrist.

The night frightened me. So did the day. Having lived through a sexual assault when I was 16, I tried to be smart. Learn how better to protect myself. Read books. Went to therapy. Took self-defense courses. Tried to avoid potentially dangerous situations, which ultimately left me feeling fearful to leave my house on my own any time after dark. Even in the sunlight, always alert, eyes scanning, guard up.

But by never wanting to be a victim again, I became the definitive victim.

It wasn’t until I accepted that there was virtually nothing I could do to prevent myself from being raped, that the responsibility to stop rape was not mine, but the rapists and the population that produces most rapists, that I started to become a survivor instead of a victim.

When a student sitting in the center of the school library is gunned down by a classmate, no one would ever think of implying she should have known better than to make herself so vulnerable. You wouldn’t hear media pundits commenting, “School shootings happen. Everybody knows that. Why wasn’t she smart enough to protect herself and sit at a carrel in the back, away from the door? And why was she wearing such a bright colored shirt that made her stand out. Didn’t her parents have the sense to teach her better than that?” Instead, the blame, and the focus for preventing future school shootings, falls where it should, on the gunman and the culture that produced the gunman.

Blaming a rape survivor for being raped is equally ludicrous. It doesn’t matter if a women is out alone at night, wearing a short skirt, intoxicated, or even unconscious. Any statement insinuating a women’s culpability after she’s been raped is outrageous, reprehensible, offensive, and unacceptable. Survivors are not responsible for being attacked.

The painful fact is the majority of rapes are committed by males, approximately 99%. One particularly startling and heartbreaking research project documented that a third of men surveyed said they would commit rape if they could avoid detection. Until men take responsibility for making rape socially and culturally unacceptable, one in four women will be raped in her lifetime.

Men need to stop rape. They need to stop it by conveying the message to their peers and to boys that women must be treated with respect, and are not sexual objects, despite their potential to be consensual, sexual partners. They need to stop perpetuating the fallacy that a man’s self-esteem should be tied to the number of women with which he’s had sex, and that is acceptable to use any means to achieve that objective, be it deception, manipulation, coercion, or brute force.

For us to make any real progress on significantly reducing and eliminating sexual assault in our communities, men need to take responsibility. We need to stop blaming the most common victims of rape: women, children, the elderly, and the most vulnerable amongst us. We’ve spent centuries telling them it is their fault if they were raped. They should have done a better job, been smarter, about protecting themselves from attack. This will not work to eradicate rape. It hasn’t. It won’t. In truth, we need to put far less energy and effort into teaching girls and women how not to get raped, but rather create a culture where men don’t rape.

If you’re interested in reviewing more facts about rape:
http://www.huffingtonpost.com/soraya-chemaly/50-facts-rape_b_2019338.html
http://rwu.edu/campus-life/health-counseling/counseling-center/sexual-assault/rape-myths-and-fac

20131114-194625.jpg

Independent Means

Standard

IMG_4641“I’m going to say three words. Can you repeat them back to me? Sock. Blue. Bed.”

Yesterday, I was sitting on the couch next to Sierra as the nurse who supervises the personal care assistant who started working with Sierra in August came out for a periodic home visit. Now that Sierra has turned 18, the visiting nurse is required to ask Sierra to engage in a series of verbal tasks and answer a few questions each time she meets with her in order to assess Sierra’s mental acuity and her ability to care for her own needs.

“Sierra, can you repeat the words back to me that I just said,” Bernadette gently asked.

Sierra turned to me with a look of panic on her face. “Mommy, help me,” she begged.

“Si, it’s okay,” I reassured her. “There is no right or wrong. Do you remember any of the words?”

Sierra shakes her head no.

“None? How about the first one?”

Bernadette offers, “You wear them on your feet.”

Sierra, tentatively, “Socks?”

“Great, Sierra,” Bernadette continued. “What about the next word?”

Sierra grabs the front of my shirt and tugs at it. When Bernadette had rattled off her word list, she’d pointed to her own shirt as she said “blue” as her shirt was navy blue.

“Yep, Si,” I said. “You’re on the right track.”

“It’s a color,” said Bernadette. “The color of my shirt.”

“Blue,” Sierra finally offers.

“Last one. Do you remember it?” Sierra shakes her head no again.

“Sierra, it’s where you lay down to go to sleep at night,” Bernadette feeds her helpful.

“Bed,” says Sierra.

“Great job. Can you tell me what year it is, Sierra?”

“Mom!” Sierra yells at me with concern as she buries her head into my shoulder. “Mom, help me! I don’t know.”

“That’s okay, Sierra. It’s 2013,” says Bernadette, smiling reassuringly at Si. “This is the final question and we’ll be all done. What month is it?”

Sierra looks at me sadly. I kiss her forehead and rest my hand on her back.

“Si, it’s really okay,” I say. “Don’t worry. Do you know the month where Thanksgiving happens?”

“Turkeys,” Sierra says with confidence.

“Yes, turkeys and stuffing. Do you know what month that is?”

“No.”

Bernadette tells her the answer: November. And then she asks Sierra again, “Do you remember the three words I told you earlier and can you tell them to me now?”

“Mom!” Sierra shouts again. “I don’t like this. No,”she says with frustration as she begins to pick at the embellishment on the front of her sweater.

Two weeks ago, I filled out Sierra’s annual special needs adoption subsidy recertification paperwork, recording social security numbers, obtaining letters from her primary doctor regarding her current health status, bringing forms in for the school to sign to verify her continued enrollment. Last week, I filled out her annual Medical Assistance renewal documents, listing the insurance and prescription plans I and my husband also carry her on through our employers. As is typical, I’ve been arranging medical appointments for her, scheduling her annual CT scan to check for cancer and an exam with her oncologist, obtaining an order for an echocardiogram to monitor her congenital heart defect, requesting referrals so insurance will cover the procedures. At her pediatrician visit three weeks ago, he and I discussed the implications of Sierra’s most recent lab work, particularly her A1c level, and if those results warranted changing the frequency with which we monitor her blood glucose at home each week. Based on that conversation, I needed to reach out to Sierra’s endocrinologist to plead our case for reducing the number of needle sticks, my view now validated by the pediatrician. I’m not sure if I’ll win that argument, but I’ll certainly try to negotiate less blood lettings, as long as that doesn’t compromise Sierra’s health.

Sock. Blue. Bed.

My daughter, now 18, considered an adult by the law. We, needing to hire attorneys to represent her and us, spend our abundance of free time and profusion of excess cash, to go to court and argue Sierra’s need for us to continue to be her health representatives and legal guardians.

What month is it?

Sock. Blue. Bed.

What year?