Category Archives: Blog: Hope Takes Practice

The Baby in the Box

nicu boxes.jpgThe plastic rectangle box that holds my son is approaching me. I can’t wait to finally meet my baby. It’s been hours since they were “working” on him. Ripped from me during an emergency C-Section, I have been waiting to finally meet him. “He can’t come to your room,” they say, “But we can take you to him.” they say.

What room? I was still in the Intensive Care Unit myself. My OB-Gyn and the ICU doctor were whisper arguing off to the side, when my OB grabbed my bed, snapped the brakes off, looked up at the nurses and pronounced sternly, “Let’s go. This mother needs to meet her baby.”

The nurses surprised at the declaration scurried frantically, grabbing gloves and ran ahead of my rolling bed . From the elevator, we landed into a dark, dingy hallway where the ceiling felt inches from my face, the paint on the ceiling tiles that was once white was now yellowed. A button was pushed announcing my last name: “Jones,” and we erupted and into a cavern where the florescent lines hung like stalactites on the ceiling. It was dark too, and the lights beamed uncomfortably down, making me feel like I was about to be interrogated instead of meeting my son.

The underbelly of the hospital was crammed full with almost 100 plastic, rectangle boxes holding babies, sick babies. Sick babies being held in purgatory, awaiting life or death. Blue scrubbed nurses and white-coated doctors scurried to and fro frantically. Machines screamed beeps. Small cries along with hushed murmurs from the scrubs and coats lept up from everywhere and from nowhere, a disorienting addition to the cacophony of sounds. The overhead fluorescent lights were oppressive. I squinted my eyes. I was frantically trying to both find my baby and shield my eyes at the same time.

Where was my baby? And why is he in here?

We moved to an aisle and the nurses who had run ahead were methodically and carefully moving the plastic, rectangle boxes out of the way, moving equipment curiously attached by tubes and lines to the boxes.

The white coats were again angrily whispering to my OB-Gyn. From my supine position, I couldn’t see anything in the boxes but baby feet. So many tiny feet. They were surreal, like deformed doll’s feet.

Finally, I was saddled up next to a box. “Lyn, this is your baby.”

“What? Why? What’s going on? I can’t see him. I want to see him. I want to hold him. “

My OB looked at me with a stern but empathetic face, “Lyn, you can’t move, or you will rip out your staples, and we can’t move your baby. He’s too sick.” Reach in through here and touch him. See him that way.” And then a nurse gloved my hand.

I did as instructed. Touched my son with a gloved hand. All I saw were the bottom of his feet, they were chubby, but blue. And within 20 seconds, the nurse closed the hole and took my glove off, and I was whisked away to the hallway as the angry white-coat glared at my OB.

I cried, “I didn’t get to see him, I didn’t get to see his face. What’s going on?” As I tried to rear up to look back towards the door.

I don’t remember anything after that except waking up in my own hospital room where a nurse stood over me asking me if I felt okay, needed anything for the nausea or pain. I said, I only needed to see my baby and asked again what was going on.

My doctor approached the bed with two Polaroid images of my baby in the box. He had no clothes on at all, not even a diaper. He had a line coming out of his chest, an IV in his foot, a tube coming out of his mouth. He was lying flat on his back, motionless, swollen, blue.

Staring at the pictures, I looked up at her and at my husband whose head was down, avoiding eye contact with me, “Is my baby dead?”

“No, but he’s not doing well. He’s alive right now.  That’s why I wanted you to meet him.”

Born dead, confined to that box for 39 days in that hellhole, I have spent the last 14 years of his life trying to keep him out of that box, hoping I’ll never have to see him in a box again.

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It’s a privilege to get to teach.

lyn teaching.jpg

As a mother of a child with a disability, my ability to work full time is extremely limited. I am very lucky that I am one of the few who can. And who can not only work, but work doing something I love— teaching and writing.

The statistics for all working women suck. We are paid less. In fact according to the US Congress Joint Economic Committee, on average, we are paid $10,800 less than men for doing the same work.

For mothers, it’s worse. Because regardless of our call for equality, we still do most of the work. The US Bureau of Labor Statistics (https://www.bls.gov/news.release/atus.nr0.htm)

  • On an average day, 83 percent of women and 65 percent of men spent some time doing household activities. Women spend an average of 2.6 hours on such activities, while men spent 2.1 hours.
  • On an average day, 19 percent of men did housework–such as cleaning or doing laundry–compared with 49 percent of women. 42 percent of men did food preparation or cleanup, compared with 68 percent of women.

For working mothers, there is much more to the picture than any of these stats can illustrate. We have to do more to prove we can both be wonder moms and wonder working women. It’s a ridiculous expectation.

It’s no wonder so many of us drink.

My academic research of mothers of children with disabilities clearly supports that as with all families, mothers are the primary caregiver.  And in my research with mothers, all of them note that they miss working. A woman with a degree in psychology serves tater tots at a school cafeteria so she can get her kid on the bus and be there when he gets home. Another mother had to leave her social work job she loved to care for her son and then years later, when she tried to go back part-time, that also failed as his needs as he got older increased instead of becoming easier.

According to the US Labor Stats (https://www.bls.gov/news.release/famee.nr0.htm)

  • In 2016, 95.6 percent of employed fathers worked full time, compared with 76.3 percent of employed mothers.

According to Caregiver Statistics (http://caregiveraction.org/resources/caregiver-statistics)

  • 14% of family caregivers care for a special needs child with an estimated 8 million caring for special needs children under 18 years old.
  • Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. The poverty rate is higher among families with members with a disability than among families without.
  • 47% of working caregivers indicate an increase in caregiving expenses has caused them to use up ALL or MOST of their savings.
  • 66%have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence.
  • Women who are family caregivers are 5 times more likely than non-caregivers to live in poverty.

According to the Sloan Work and Network on Work and Family (file:///Users/darolynjones/Desktop/Child_Disability.pdf)

  • Having a child with a disability is estimated to reduce maternal employment by 6.5% for wives and 10% for female heads of household.
  • In a national survey of families with children with special needs, 18% of mothers reported that they provide 20 or more hours of in-home health care to their children each week.

 And finally from my own research and dissertation on mothers of children with disabilities:

  • Most mothers then have to remain at home to care for their children, those mothers are deprived of the satisfaction of being employed.
  • Social isolation for any mother staying at home to raise a child may be typical, but much worse for mothers of children with disabilities.
  • Because the level of care required for children with disabilities is greater and occur for a longer time, mothers are more often excluded from the workforce or have unsatisfactory employment patterns such as working only part-time or work in positions we do not like or are overqualified for. This leads to further isolation and stress.

Even though I consider myself lucky, I also consider myself unlucky and I’m not alone. I was on my way to becoming a leading school administrator when my son was born. I had to quit to care for him. Determined to keep in the teaching and professional game, I consulted, wrote, and published part time and completed my doctorate which was more flexible than my once 10 hour work days, five days a week.

With my doctorate, I sought a career in higher education, but quickly realized that a tenure line position was not possible for me. While you may only have classes two to three times a week, the committee work and publishing expectations are very rigorous. I had this vision that professors just taught, hung out with students, drank coffee, and periodically wrote. This career in higher education that I thought would provide more flexibility was really no different than the career I had left and not possible with the caregiving my son requires.

Because my husband is in a science field and makes more than I could ever make in Liberal Arts, he moved ahead while I, despite having a terminal degree in my field—of which I had obtained while caring for a severely medically fragile child and working part time— I was going backwards.

I accepted a contract teaching position and teach on a ¾ time contract that pays me over the course of 10 months. As a contract faculty member, I am afforded an office that I share with a fellow contract faculty member, a laptop computer, and access to university services. As a ¾ time, I am supposed to work 30 hours a week, but like most people in education, that number is fantasy. I work 40 to 45 hours.   And I make a whopping $32,000 a year. When I left K-12 in 2003, I made $65,000 a year and was moving up. And now a doctorate degree that costs thousands and medical bills and extra caregiving expenses that are always rolling in, I make $32,000.

And yes, I’m bitter about that. I’m not going to lie. And I am fortunate to work in a good department with good faculty, but certainly there are some that do not treat me as the professional I am, who see me as “less than” because I am a contract and not a tenure line.

As a mother to a 14-year old child with a severe disability and as a kid who grew up in poverty, stigma and isolation aren’t new to me, but it still stings and hurts.

I only know of three other mothers at my university whose children are similar to mine. One is a single mother who has to work, and she struggles to keep up with her department’s requirements and her own health has been significantly impacted. The other has a husband who has more flexibility and can home more with their child. The last one is a librarian and opts to work the lesser paid and least attractive to any professional university librarian, the overnight shift. She opted for so her daughter can be cared for by her husband while she is at work. When her daughter goes to school, she sleeps and then is home for her until her husband arrives. She really only sees her husband and other children on the weekends.

But when I review the statistics and these stories, I am fully aware of how privileged it is that I get to teach, that I even have a job.   Yes, my entire salary goes to medical bills and equipment for my child, but at least I can do that.

And I have been an educator and writer for 25 years. And I love teaching and writing. Teachers and writers aren’t in it for the money. It’s like air for us. We have to have it.

So, yes, it’s a privilege to get to teach.

If you are a mom to a kiddo with a disability and reading this, please comment and share your own story. And share this blog post with others.  lyn teaching.jpg

So Damn Mad that I Feel Like I’m Going Mad

nurse_ratched_by_niccey.jpg

I’m so damn mad that I sometimes think I’m going mad.

I have better chances of winning the freaking lottery than accessing quality home health care nurses to care for my son. Without home health care, I couldn’t work. Without home health care nurses with him, he couldn’t attend school. Without home health care nurses assistance, I couldn’t get him to a doctor. Our choices are to turn him over to one of those horrible children’s nursing homes (which are mostly like nursing homes for senior citizens—you go there to die) or put up with home health care nursing.

What people don’t understand about having home health care nurses is that they are only required to feed Will, give him medications, and toilet him. That’s it. They don’t have to talk to him, they don’t have to interact with him, they don’t have to engage him at all. He sits in his hospital bed in front of a television. The best I can get most of them to do is change the video when he’s upset.

There are those few and rare good ones who will interact, even play with him, but most of them do not. And they don’t have to.   He’s a patient, not a child to them. So, I hire someone to come over for four hours every day to either do therapy with him or engage him in developmental play.   More than half of my summer salary goes to hiring other people to 1) make sure the nurses are doing their job and caring for him correctly and not destroying my house and 2) interact and engage with Will positively. And I’m grateful and privileged I can even do that. I know of many families whose child stays in bed all summer because they don’t even have a way to take them outside and they don’t have a mobility van to even take them outside the home.

And with the home health care nursing shortage, there isn’t even a choice anymore between the good ones and the bad ones. There are just the ones or the nones.

On Will’s last week of school, his Wednesday nurse quit, gave neither me nor the company any notice. Grown, professional nurse with three children of her own. Will liked her, had even become attached her. They do this often. They just leave. They never even say goodbye. He doesn’t understand he’s a patient to them. He thinks they actually care for him as a human being. We actually start to think they give a shit about us too. They are in our space, in our intimate home. They know everything about Will and too much about us. And then they just use us up and leave.   Emotional vampires.

And the nurse who is here on Tuesday and Friday decided to take three weeks off for a vacation. I wish we could take a family vacation, but we can’t find something close that is both affordable and accessible for Will.

This week, finally, a new Wednesday nurse oriented, and she opted to not take the case because my husband intimidated her because he didn’t smile the entire time she was here. He kept his head down frantically trying to get caught up from taking the part of the day off to take Will to the doctor. He wasn’t aware that he had to put on a dog a pony show. He was able to work from home that day and the two nurses spent four hours sitting on the couch we so rarely get to sit down on, swapping their life stories, paying little to no attention at all to Will unless he needed toileted or fed. He’s just a patient, a body to them.

Maybe I should take out an ad:

Happily married for 20 years, professional couple seeks competent nurse to care for their delightful, sunshine son who has severe cerebral palsy and autism who has had 37 surgeries in 14 years and who has come back from death three times. Our home is clean and you can make yourself comfortable while here as long as you pick up after yourself. Please don’t talk on your phone all day. Please don’t play games on your phone all day.   Please don’t read all day. Please don’t fall asleep on your shift. Please don’t take him out in our van and then leave him in the van with it running while you run into the CVS to buy a cold soda. Please don’t break his ankle when you take him out on a walk because you forgot to fasten his feet in. Please don’t let him fall out of his wheelchair because you didn’t fasten him in. Please don’t bring your family drama into our home and ask us for financial help. Please don’t steal from us. Please don’t overflow the toilet and leave it and ruin the floor and the contents below in our basement. Please don’t complain to the agency when our lift isn’t working, we are short on supplies, or the wheelchair brake goes out because we are trying to get those companies to do their job too. We advocate for our child all the time. Don’t expect us to be perfect human beings. We work full time and are under constant stress from managing Will’s nine pediatric specialists, feeding supplies, and nursing care and our jobs. Please give us some grace. And please treat our home like you would your own or better. And finally, please do care for our son both medically, professionally, and personally. He’s our child, not just a patient.

Oh, and we also like long walks on the beach….so we might ask if you could let us have a rare lunch or dinner out, just the two of us.

*And yes, all of those things have happened to Will and to our home with home health nurses.

Home health care nursing agencies and their nurses have all the power. Home health nurses are in such demand that they can come and go as they please. They can choose which agencies and which families to work with and for. Supposedly, we families can choose our nurses, but that’s not really true. Our choices are extremely limited. If Will has a bad day, they start fishing around for other cases. If we aren’t all rainbows and unicorns, they complain to the company and again, start looking for other cases.   If my house is perfectly clean or my laundry isn’t caught up, they let me know. They compare families and cases. I even know of a family that does give their nurses money on the side just to keep them. This is illegal and not allowed and If I had that kind of money, I’d hire who I want and say “fuck it” to this bullshit, broken system.

 towanda 4.jpg

I get so damn mad that I feel like I’m going mad.

This is my house. This is my child. This is my life. You would not want me coming into your home and treating your child the way you treat mine.

Things are 100 times better than before we had Obamacare, but we have a long way to go. Nurses shouldn’t be able to attend non-accredited schools with little to no admittance requirements and who don’t even practice clinicals. We have had several nurses who can’t even change a Gtube or put in an IV. My husband and I can do that with Will.  Nurses should have to engage in professional development and ongoing education. Nurses should be compensated more. The whole system sucks, but right now it’s the only shitty system that we have, and we families are trying to even hold onto the shitty parts of it.

I am privileged because I do get to work and I can supplement Will’s care, but still, I make half the salary I used to make because I’ve had to take a job that pays me less and doesn’t let me do everything I want to do so that I can be at home more with Will. I know that having children and being a working family is hard, but let me tell you folks who have typical children, it is about 200 times harder when you have a medically fragile child.

 I get so damn mad that I feel like I’m going mad.

 

Happy Consequences

happy boy

Your father will never come back for you. Shut up. Stop crying.” Leaving me standing alone outside in the yard waiting for him when he didn’t show up…again.

STOP MAKING SO MUCH NOISE. I have to sleep. You walk through the house like a God Damn elephant. If I have to come down the stairs and tell you again, you will regret it.” (Grabbing my face and jerking my neck around, leaving the outline of her hand clearly visible on my jaw and face.)

 Mom, the teller gave you back an extra $20.”

So?

 But, she’ll have to pay that back out of her pay.”

 That’s not my problem. Don’t tell your step-father, or else you are going to get it.”

Why would you tell me that? He only molested you because you aren’t real family. He won’t touch your sisters; they’re family. Don’t you dare tell your step-father. Don’t start trouble in this family. Shut up about it. Stop crying.”

Look at you. Aren’t you special with your fancy boots and new coat. You always think you’re better than the rest of us. “ She whispers so no one else can hear, as she smiles, kissing me goodbye as I leave on new date with the man who later becomes my husband.

I was never wanted. I was a reminder of Him, of wrong choices, of a life failed. And she and I agreed on one thing—neither one of us could wait until I left.

Every outrage probably had little to do with me. The word “consequence” means the effect or result of something that happened earlier. My mother’s anger and intolerance for me was a result of a hundred things that happened before me, many before I was even born. I understand that now.

But I was always the bullseye for her arrow of frustration, depression, sadness, and anger. There was always a “consequence” of every thing I said or did—good or bad. What I thought would be good, was not and what I thought would be bad, sometimes was good. It was like living in a funhouse of mirrors, everything distorted and disorienting.

 “I’m glad you started smoking. I like it. It makes you look normal. And it will help you stay thinner. You’re getting to chubby.” As I try to stand there in defiance with a cigarette hanging out of my mouth. 

Growing up with no mother and no father, all I dreamt of was a family. One where I was accepted, loved, happy, not worried, anxious, or scared all the time. A stubborn child, I believed if I played by the rules, did everything they did on American family sitcoms: studied hard, was polite, was respectful to adults, worked hard, and said my prayers, that I would get the family I never had. I knew I couldn’t will it to happen; I had to take action.

“Can I go to the Methodist church at the end of the block? Doc says they have a good youth group and his granddaughter goes.”

 What do you want to go to church for? Religion is private. You don’t share it out with other people.

” I want to pray.

 “Why? You have everything. What could you possibly pray for? Do whatever you want. Just don’t bring it home.”

 I was the quintessential girl growing up in the 70’s and 80’s. I wanted to go to college, meet a boy, get married, have babies, and have a career. I would never worry about how the bills were going to get paid. There would be enough money for everything that was needed and wanted. My dream house would be a 3- bedroom, 2-bath brick ranch and my dream car? A Honda four door. Everything would be happy, clean, normal, peaceful. Not angry, dirty, dysfunctional… exhausting.

I believe in visualization. It works for me. As an athlete in junior high and high school, I would visualize myself running, passing other runners, crossing the finish line, hurling my body up and over the sand, making contact with that ball and sending it out far, far out to center field. I visualized myself making A’s, being good in school, having teachers tell me I’m smart. In theater, I visualized characters so I could act. It worked. Rarely did anyone in my family ever see my run or play ball or perform. I wasn’t encouraged to do well in school.

Showing her my report card, Try to get a C once in awhile” rolling her eyes and walking away.  

 I did go to college. I did marry a boy. I have a successful professional career. I am now living in my third 3 bedroom, 2 bath brick ranch, and I drive a Toyota (close enough). But the babies didn’t turn out.

How much did this house cost? Must be nice to be so rich. Don’t ask us to come up. We don’t feel welcome here.”

 I continued to play by the rules. I did everything right. I worked hard. I was a community activist. I kept a beautiful home and yard. I cooked. I baked. My husband treated me like an equal partner. I ran and was in excellent health. I was that woman I visualized as a girl. I had it all. I had successfully broken free from the chaos and dysfunction.

But, then for no medical reason anyone can find, Will was born early, born dead, and with extreme medical interventions, survived. But he survived with “consequences.” That’s what his neurologist kept saying to us when we asked how bad it was, “We don’t know, but there will be ‘consequences’.”

I was so angry. How could this have happened? I had made it this far. Everything was right. Unlike my mother, I had made good choices. I played by the rules. I was an excellent wife, and I wanted so badly to get the chance to be the mother I didn’t have and to give my child the father I didn’t have.

Of course, what I meant was, how could this have happened to me? Meaning I thought I had been through enough. I lived all of those years in anxiety and sadness and stress and now it was being taken away.  I worried that my husband would leave me because I hadn’t given him the perfect child and then learned I could give him no more children.

And, the economic burden of having a child with a disability before Obamacare means we had to leave our three-bedroom new brick ranch home in an affluent community for a smaller house in a community far outside of the city where we could afford to  live. I had to leave the job I loved to care for a baby that has now had 37 surgeries and procedures in 14 years.

As my friend, Barb says, who is this supposed to happen to? Who do we think “deserves” to have gone through what my family has endured? The truth is because I grew up hard, I know hard. I know how to survive hard. And more importantly, I know how to thrive in hard.

It should have happened to me because with my husband and I at the helm, Will has beat all the odds and the doctors continue to be befuddled at how healthy he is despite all of the damage to his body and brain.  We have a strong love and respect for each other and for our son, regardless of the “consequences.”

So, I stopped being angry about that perfect pregnancy where I had done everything right that failed because that means Will is a failure and he’s not—he’s a miracle. My husband and I are short, dark, cynical people and we have this tall, bright, happy sunshine boy who loves us and his life.  I’m so proud of everything he is and does.

I stopped being angry about the loss of a career and found a new one that I like even better and that allows me to work and be with my son.

I stopped running and exercising as much and allowed myself to gain weight, enjoy food, friends, and life more.

I stopped keeping a huge yard and enjoy a smaller landscape.

I stopped cleaning my house. I hired it out.

I stopped being polite and making small talk. I say, teach, and write what I believe. I don’t have to be the “good girl” anymore.

I stopped going to churches that say one thing and do the opposite.  My preacher is gay. We are involved in the #blacklivesmatter movement, immigration activism, LGBTQ rights, serving the community where the church resides.   My church does what Jesus would REALLY do.

I stopped watching family sitcoms. I like my own real life much better.

We love him, our son, our happy consequence. My new life “with consequences” is happier than the one I visualized.

 

 

 

 

 

 

 

Speculation

Wooden-Backyard-Fences

Parents of neurotypical or typical children look on us, we parents with children with disabilities with pity—but mostly with relief. They say a prayer quietly to themselves, “Thank God that’s not me.”

I know that “we,” “we” parents of children with disabilities “get it.” In fact, my 280-page dissertation was about his intangible idea of about “getting it.” About how “we,” because of our unique experiences with our children, have been transformed and have an ethereal and grounded metacognitive awareness of our purpose in life. “We” are closer to understanding the meaning of life than “they” will ever be.

But what do “they,” as in parents of neurotypical children, think about us? That’s a question I never thought about until today. I’ve been so consumed with reading and researching families of children with disabilities for the last ten years, that I realized I know nothing about neurotypical parents. I’ve never been one. I only have one child, and he is disabled. Is it fair that I judge them — maybe even more harshly than I think they are judging me?

So, I decided to take a random neighbor and watch her, watch me. And get in her head and speculate what she might be thinking about me. I have lots of unfavorable opinions about neurotypical parents of children with disabilities. It’s driven by my experiences of my kid being ignored, disregarded, of not being included (him and me), but if I’m honest, it’s also driven by a little jealousy.   While I consider myself all-knowing compared to them, I’d take ignorance any day if it meant that my kid hadn’t had to endure 37 surgeries and procedures in 13 years and live a life that includes yes, joy, but also exclusion and pain.

Here is what I imagine she might be thinking, saying to herself…

You have a child in a wheelchair. I don’t think he’s right, you know in the head because he hoops and hollers and rocks back and forth. You are always coming and going— I don’t understand what you do or if you work. But, then sometimes I see you dressed up in business attire. Someone else told me that you are a professor and a writer, but you are not gone every day and sometimes you have him, your son, with you and sometimes you don’t. I’ve tried to engage you in conversation, but you keep your eyes and head down and rush in and out of the garage. You can’t be that busy. All of us in the neighborhood chat over the fence or at the mailboxes or in the park.   You never join us.

 Maybe you are embarrassed. I imagine it would be hard to live here and have the only kid in a wheelchair. All of our kids play sports and are expected to go to college. You were once lingering in your driveway, getting something out of your van, and I walked over. I offered to let your son pet my dog and you said, “Thank you, but he doesn’t like dogs” and you and quickly walked away. I thought that was rude— I mean, I was trying. I never see any kids come over to visit or play with your son, so I thought perhaps he could come play with my dog in the backyard. I mean, what do I even say to you next? I feel sorry for you? I’d like to know more about you and your kid, but I don’t how to ask?  

 I’ve seen the ambulances come and go over the years at her house, and I’d like to help, but besides a wave sometimes, you never smile. I never see you at the park or on your porch. You simply rush in and out of the garage. You never join our neighborhood events.   I wonder, do you even like us? Maybe you think you are better than us. On the weekends, I see you on your deck hidden into the darkest corner that is the furthest from street view with a cocktail in hand, grilling late at night and listening to soft music. I’d like to stop by on my evening walk to say hello, but you remain with your head and eyes down. You don’t want to interact with us. Maybe, there is something wrong with you too, and that’s why your son is like that.  

I Don’t Read Dystopia

dystopia.jpgI only read contemporary realistic fiction and nonfiction. I am often questioned about my choice, sometimes even with a tone of reprimand: “How can you not like fantasy? How can you not read science fiction? You are an English professor, you are supposed to like all literature.  What about Dystopian novels? I mean.. don’t you want to escape? Wouldn’t that be better for you?

The inference is of course that because my actual life is hard as a mother to a child with a severe disability who has endured 37 procedures and surgeries in 13 years that I should want to escape.

There is no escape, so why tempt myself by reading about it?

And, I don’t read about dystopian worlds, because I fucking live in one.

Let’s examine the primary themes of dystopia: Oppression, Powerlessness, and Rebellion.

There is always a heroine or hero who questions those in power, seeks to change the system that creates oppression —through rebellion. In my world, there is mostly oppression and powerlessness, little opportunity or time or energy for rebellion. I fight to care for my child, for my child to be taken care of, and to work to pay for the care and needs of my child. That’s it. And all of us living this life, live just like that. We can’t rally or gather or create an underground resistance, because we don’t have anyone else to care for our child.

I have lived a life of oppression, born poor and despite having worked hard to obtain a successful professional and personal life, I am still cast out by the “Have’s.” My education was delayed, because I had to work and save in between degrees to receive a doctorate, finally at age 42. I graduated from state schools. I don’t have as many publications or research, because I have had to work my way up into higher education through several adjunct positions. I believed—naively— that the playing field would be equal in an intellectual community. I was wrong.

The rich girls and boys whose families paid for their educations, who could fatten their college applications as class officer presidents, student athletes, and national debate champs in high school instead of working 35 hours a week to ensure you would have clothes, food, and school supplies or enough to maybe go to college for at least one year, the same ones able to attended top schools and once there, worried only about studying and service, fattening their vitaes to move up the graduate school ladder, securing the best assistantships, and eventually entering higher education as tenure line hires — all by the age of 30.

So having a child like Will and having to work hard wasn’t hard for me.  I’m used to it. But, because of Will’s need for care, being forced to quit work and change careers where my work schedule could be more flexible, having to start over leaving a position that I had worked years and years for, finally a position of respect and power — finally border crossing into “Have” territory and then being thrust back down into a position of “Have not,” working for younger, less experienced “Have’s” who know you are vulnerable because of your son, who know you need the job, who sometimes take advantage of that power over you.

If I had reliable home health care nursing for my son, I could maybe rebel, rally, resist. But there is a nursing shortage (and a country and a President ready to cast out health care for people like my son) and home health care nurses are in the highest demand. There are good ones, but there also too many incompetent, even just bad ones.

They fuck up, don’t show up, or don’t want to work. And rarely get reprimanded because the companies that employ them need them, good or bad, to keep bringing money in. And even if they are reprimanded, they can just get another job.

Let’s examine some of the bad or incompetent nurses we have had over the years:

  • The one who told us on day one that he has a drinking problem, and we should hide our liquor.
  • The one who insisted that in 2007, Bill Clinton was still president and he was so happy he was running for re-election when Bush had been president since 2001 and who then proceeded to fall asleep singing “Hail to the Chief” in his sleep next while Will was crying right next to him.
  • The one who said that my son didn’t look as retarded as he sounded on paper.
  • The one who used Meth and gave my kid Meth MRSA.
  • The one who left him in the van with the van running while she went into a CVS to get a soda.
  • The one who instead of taking Will to school, went shopping and ran her errands all day.
  • The one who had her boyfriend in my house when we weren’t here so they could hang out on the down low since he was still married.
  • The one who let him fall out of his wheelchair because he didn’t strap him in at all leaving a scar below his right eye.
  • The one who broke his ankle because he didn’t strap his feet correctly and then lied about it and let him lay in his bed for three hours with a broken ankle and no pain medication.
  • The one who insisted that Will intentionally attacked her with his spastic arms, because he can control his spacsity (he can not).
  • The ones who refuse to use a plunger and overflow your toilet, ruining your basement closet and bedroom below… and then don’t tell you. You walk into the water after they leave. Plumber says it happened hours ago by the damage.
  • The many, many ones who don’t show up, don’t call, or call off ten minutes before I need to leave for work or insist on leaving early.
  • The ones who are not completely incompetent, but can’t be trusted, so I have to hire and pay a second person to watch them and make sure they do their job.

***These are just a few highlights- my actual list is much longer.

Below is an example of a typical dystopian day in my life:

Last week, one of the incompetent nurses that I want to replace but can’t because there is no one else, decides she is going to quit. This after I have spent weeks paying for extra help and continuing to train her in the hopes she will get better. Fortunately the agency says they have a nurse to replace her. They send New Nurse to train with Incompetent Nurse. Incompetent Nurse doesn’t show up. I call her. I tell her the bus is leaving in 10 minutes, and that New Nurse is here ready to orient. Incompetent Nurse hasn’t been sleeping well lately, so she decided to sleep in. Telling people like me who are up two to three times a night, every night, for 13 years with a sick child, is not okay. Telling someone you are going to be late making them late for their job is not okay. New Nurse then drops her glass bottle of Kombucha Tea, which shatters, covering you, the concrete porch, and porch furniture with a smell of vinegar and funk. You tell Incompetent Nurse to get to Will’s school by 8 a.m. You call School Teacher and ask her if she can orient New Nurse until Incompetent Nurse can get there. You call The Agency to tell them what’s going on and insist that Incompetent Nurse be reprimanded. You get New Nurse and boy on the bus. You clean up glass and purplish funk off your porch in the dark at 6:30 a.m. in the cold. You don’t eat breakfast, you don’t bathe, so you can get drive one hour to work. You come home to Incompetent Nurse and New Nurse sitting on your couch, drinking Diet Coke, talking like long lost friends while Will is not positioned correctly and hasn’t yet been fed. You sign them out.  Get Will fed, medded, washed, changed, and  cook dinner, and finally take a bath at 10 p.m.  You are woken up at 3 a.m. Rinse and repeat.

So, no, I don’t, I won’t read dystopian novels. I have no high hopes for a rebellion. And I have little hope of any utopia.

 

 

 

 

 

 

 

 

 

 

 

I Want a New Set of Memories

hospital-with-blurred-effect_1203-518

I want a different set of memories with my son. I was cheated. What to Expect When You are Expecting or the What to Expect the First Year books, the fairy tales of happily ever after stories, and the television sitcoms I watched as my role models promised me something different. The worst thing I could conjure after reading and watching was colic and sleep deprivation.

I know everyone has a different birth story, but most end up with the baby in his mother’s arms. Maybe not immediately, but soon thereafter. That wasn’t the case for me. I didn’t get to hold my baby until day 12 and only for a very few minutes. And he had to have another set of hands with mine to help me hold him with all of his many leads, tubes, and oxygen apparatus in place. I wouldn’t get to hold him regularly until day 40.

And then when he could be held, he couldn’t be unheld. He had to be held all the time. He had to sleep on me, had to physically be on me all the time. Taking a shower, running an errand, or taking a short run was torture. Others would try holding him close and tight, but they were not me. So, he screamed at the top of his lungs nonstop and set all of his Apnea monitors off because he couldn’t scream and breathe at the same time.   Because he was ripped out of me so early, I think he wanted to crawl back inside of me.

When we were trying to teach him to point at different people in the family: Daddy, Grandma, Grandpa, he couldn’t identify me—ever.   And at age 13, he still can’t. I am not mommy, but an extension of him and vice versa.

I oversee the Public Memoir project for the Indiana Writers Center and teach creative narrative nonfiction at both the Center and at a university. I explain the following to writers to help them conjure imagery and scene while they write:

When we remember, when we think back on our memories, our life, we may see those memories like a series of snapshots or individual photographs. They may be a series of photographs, like we are sifting through a pile of images in a shoebox or flipping through an organized album. Or, we may see those memories like a movie that plays briefly like something posted to Youtube or as a full-length movie. And most of us don’t see everything clearly. Sometimes we are missing images or scenes. As we watch, we may forget and for moments become ourselves as were then or continue to view ourselves from the perspective of where we stand now as a keen observer who saw it as it was. 

When I examine my memories, they aren’t organized. They are strewn everywhere. In the three different houses we have lived since Will’s conception, the four hospitals and more therapy and rehab clinics than I can count in multiple cities, the many rooms we have had to place Will in to accommodate all of his different rehabilitations or equipment post surgery, and only two family vacations.

There are images of people— some whose names I can remember and some whose names, I can not, countless nurses, doctors, therapists, surgeons, hospital pastoral care, intake coordinators and case managers for the many different agencies that help oversee insurance and Medicaid funding, teachers, instructional assistants, special education directors, family and friends who have checked in and out because they want to or don’t want to help, and other parents in waiting rooms that I may or may not ever see again.

If I zoom in on those photographs, I can see the countless hospital beds, IV poles, feeding station units, oxygen masks, thousands of syringes, bottles and bottles of medications, orthopedic equipment that promises he will walk, sit, stand, or lie with no pain, paperwork that could cover every inch of my house and yard.

And the people are just a blur, one large blur. They are really the same. Even if someone stands out, they only stand out for a brief moment. With good intentions, they too become defeated and fall in line with everyone else. Their faces try to smile, but you see the sad and pity in their eyes. The smile is a façade, to placate the mother. As if I don’t understand the sadness. I live it.

And If I recall their voices, I hear that the same dulled tone.  It is sullen, salted with dashes of hope. A boy born dead has little to no hope. The resonating theme of their message is the same too. It’s one of deficits and can’t do’s and be prepared for—fill in the blank here— be prepared for more therapies, infections, surgeries, risks, problems, issues, lack of funding, etc…

I once read a study conducted in academia about photography and parents of special needs children. The authors gave the parents cameras and told them to take as many pictures of their children as they wanted. The images they took were never during times of distress or when the child was in the hospital or therapy and rarely showed the child compromised or with any adaptive equipment. All of the images taken tried to make the child appear as “normal” as possible.

I too have very few photos of our reality. Most of our images are in those rare moments when we aren’t in any of those many spaces listed above or with one of those blurred faces. Do my images accurately reflect my memories with Will? No. They aren’t candid. They are staged.

They are pictures though that I frame, place on the mantel, share on social media, but they aren’t the real memories, but instead the memories I present, the memories I hoped for, wanted, got cheated out of.

And yes, I do have a few pictures of Will in hospital beds hooked up to machinery or of his post surgical scars, but I can’t bring myself to look at them. I don’t want to look at them. Each time we leave the hospital, Will and I are traumatized and the only way we can each survive is to move on. We know there will be another hospital stay, there have been 37. But in order to prepare for the next one, we have to forget about this one.

I am criticized often about my blogs. I have been shunned by my critics, noting that it is unethical for me to write about my son, that I am contributing to the hegemony of seeing people with disabilities or mothers of children with disabilities as less than or weak by writing about the challenges, that I should focus on the positive and the good and use my voice to spread that message instead.

This is exactly why I write about the reality. To create balance. Yes, there is joy, but there are many more challenges. It’s dangerous to only leave behind a few staged photographs and no story and assume that those images are an accurate representation of your reality.

Memoir is about truth after all. And I am a memoirist, not a fiction writer.

 

 

 

 

I Remember…

i-remember-imageI always tell writers who want to blog to keep it simple, to keep it short, to keep it colloquial, to keep it narrative, to not polish it, and most importantly to keep it accessible to the reader.

Yet I remain (as you have probably noticed) quite long-winded on mine. Colloquial? Yes. Narrative? Yes. Polished? No. Accessible? Yes. But, short? Well, damn it, No.

So, today’s entry is short. But (here I go again), I would like to give you a brief context. I teach a series of short 90-minute workshops to beginning memoir writers called Memoir Workshop. In 90 minutes, I briefly define what memoir is and is not, provide examples, and discuss strategies. Then we practice three exercises, one of which is the ever famous (thank you Joe Brainard) —I Remember…. exercise.

I teach these workshops through my work for the Indiana Writers Center and we are a community writing center, meaning we believe that writers need and should write with a community, so I model that at each workshop. I do those same three simple exercises every time with the writers who come to learn.

Even though we write for only five minutes, like the writers who sit across from me at the table, I too am surprised at what I come up with, at what I have said on paper. What comes out of my head, heart, gut and unpolished and sometimes in incomplete sentences runs down my arm, through my pen, and lands onto a sheet of paper.

It’s different every time and it sometimes feels like it comes from some far region of my memory brain or sometimes just hits me over the head because the memory isn’t that old, but so raw and new that it has even had time yet to scar.

We know the exercise works, because it’s your brain’s way of saying, this is what you need to say, what you need to purge, what’s worthy of making sense of. So, below read what I wrote last Saturday with my writers at the Irvington Branch of the Indianapolis Marian County Public Library.

I Remember…
I remember his funeral.

I remember the dread of attending.

I remember the appropriate black skirt, blouse, and shoes I selected to wear.

I remember at the last min checking my FB page and seeing that the family wanted us to wear orange, his favorite color.

I remember changing and immediately feeling better by putting that color on. You see orange is my favorite color too—it’s a happy color—the color of fall, of midcentury modern pop art, and popsicles.

I remember worrying if I’d be welcome. I had once been close once with the family, but hadn’t seen them for years.

I remember driving the familiar road to the church, which was ironically located across from the children’s hospital where he had died and where he and my own son had both spent too many days, nights, …years.

I remember walking in and immediately breaking down – I was confronted with hundreds of images of his too short, but generously lived life.

I remember feeling badly about how I was reacting. Was I crying for him and for the family or was I thinking of my own son?

Was I mourning his death or was his death an inconvenient reminder for me of the reality of my own son’s possible future death the doctors had been predicting?

I remember that I have attended three other funerals just like this in the last 2 years.

I remember hating seeing children lying in boxes and that I don’t want Will in one. I remember planning out what I would and what wouldn’t do at his funeral.

I remember thinking instead of orange, your favorite NFL jersey, no showing, only a funeral, images everywhere of his joy, inviting as many people to speak about his impact that could fit on the state, prayers and songs he would want.

I remember thinking that I still hadn’t said how sorry I was for your loss.

I remember walking in although I don’t remember my feet touching the floor.

I remember seeing his family.

I remember seeing his face.

I remember hugging them, saying something, and crying.

I remember leaving numb.

I remember driving home, feeling drunk, thinking about how any parent who attends a child’s funeral will think on their own children, but not on how to plan the funeral.

I remember feeling sick and sad and stupid all at once.

I remember trying to pray.

I remember not being able to.

I remember there is no guidebook for this shit. I’m on my own.

 

 

Champion On, Will….Champion on, Mom

After 37 surgeries and procedures in 13 short years, and three very complex and life threatening hip and femur surgeries in the last three years, my son champions on.

My husband and I are short, dark, stocky, generally cynical folks who choose to see the glass as half empty, yet we gave birth to this tall, blond, skinny, sunshiny optimist.

His disability triumphs over the psychology argument of nature versus nature. His cerebral palsy keeps him skinny, and his intellectual and social inequities keep him from absorbing and adopting the environment of pessimism that Jim and I often exude.

When Will was born, they predicted his death and then he outlived those 2 weeks and then those weeks turned into months and now have turned into years.   There was even a limit given to those years after he had lived for years, but he surpassed that mark as well with what I like to think of as a “fuck you” to his doctors.

He continues to both befuddle and amaze his doctors. At any one of Will’s 10 pediatric specialists, we hear the same line put to the tune of a different specialty remix, “We have never seen someone with that bad of a Pectus chest deformity and shallow breath have as good of respiratory health as he has” or “We have never seen anyone with so much brain damage never have a seizure.”

Every week, Will faces multiple clinical physical therapies and physical, occupational, and communication therapy sessions at school as well as at least one doctor’s appointment, often two. There is always picking, poking, and prodding, and often painful sticks involved. Yet, he doesn’t cry. He doesn’t fight. He complies. Not always willingly. But he eventually knows it’s just part of the routine and the quicker we do it, the sooner it will be over.

Incredibly mature for a 13-year-old boy and in particular for a boy who is also on the autism spectrum. Periodically, a nurse or someone at the school will note with concern that Will isn’t patient enough. Not patient? Every hour, he spends 10-20 minutes of that hour being fed through a g-tube and 5 having his diaper changed because he is incontinent. And then spends hours a week with those in the therapy or medical community. You go through that and then we can talk about patience.

These last two years of complex bone surgeries have made recovery and rehab very hard on him and on me. Will used to be able to walk with a gait trainer, and he could crawl, and roll over, and sit up. He went from not being able to even hold his head up as an infant to be able to do all of these things by age 6 and then he went backwards.

His body grew, his muscles tightened, his neurological wind swept legs pulled his hip out of socket. First he lost his ability to gait, and then sit, and then crawl, and then finally roll. He can only lay or sit in a wheelchair or specialized chair that supports him. He can’t get to what he wants, he can’t leave, or even come to me voluntarily unless he is moved or he is in his wheelchair where he can move his wheels. His body now requires another body or piece of equipment to move him. I can’t fathom how incredibly frustrating and heartbreaking and confusing that is for him. He sometimes still tries to roll over, and he just can’t get his body to move and the look on his face when he fails is clearly one of confusion.

He was recently and has FINALLY been cleared to begin work on weight bearing. Will loves to be UP high, to sit up high, to stand up tall, to see out and over. When you sit or lie, being up is a vestibular input you crave. And it finally puts you face to face with the world.

So last week, he got to do just that. Finally, there is hope that maybe some day, he will be able to bear some weight, perhaps even gait. The doctors say not to expect that, but hell, this kid’s been surpassing everyone’s expectations for a long time.

So the picture above is a perfect visual metaphor for my kid. Instead of complaining that he has to go to physical therapy, that he has to work harder than he ever has had to, to simply rise up from a seat,  that he has to endure clonus (spasms from extreme muscle fatigue), and being sore for days after, he champions on.

He was sweating so much that we had to put a towel around his neck. But look at that face. It is not one of pain or one that says, “I can’t.”

It’s one of joy. It’s one that says,“I can. I will. I want this.”

I couldn’t help but hear the Rocky theme song, “Gonna Fly Now,” playing in my head:

Gonna fly now, flying high now

Tryin’ hard now, it’s so hard now

Tryin’ hard now

Feelin’ strong now, won’t be long now

Gettin’ strong now

I’m on fire; flying higher

So, because Will champions on, Mom will too.

Even when I feel like throwing in that damn towel which is often daily and even hourly, I will get up too.  It’s what my kid wants.  It’s what my kid needs.  His nature is teaching me much more than my nature is teaching him… thank God.

As Maya Angelou says, “Still I Rise” because it’s what Will would do.

If he can, I can.

If he Will, I Will.

Turned Away

at church
One of only two pictures I have of Will in a church

We can’t find a church. Our problem is NOT usual. Statistics show that church membership is down and fewer and fewer Americans are attending church. Churches have resorted to mailers, advertisements on media, varied service times to attract busy families, and recreational and small groups—anything to make the church look more appealing. I actually find it disheartening that we have to “sell” church, but nonetheless, this has become the new norm.

Now that said, I do acknowledge that some folks can’t find a church because they can’t accept one that is not a philosophical match or they make excuses about why they can’t attend (time is the number one reason).

This is NOT our issue.

We can’t find one because we can’t find one that will accept both us AND our intellectually and physically disabled child.

Ironically when I consulted both my own personal Bible and the Internet, I could find no references to a church turning away someone, only references to someone turning away from God.

So, what happens if a church has turned you away, in fact, turned you away before you have ever even darkened its doors? It’s happened to us, three times. Even in the tradition of Judaism, if you knock three times you will be accepted.

NOT us.

My husband and I are Christians, life long Methodists. However, we are open to any denomination —so long as they are inclusive to all marginalized individuals and we have the opportunity to engage in a Christian community and be part of that ever- important corporal prayer. We do a lot of personal Bible reading and prayer. You have to when you have a kid and a life like ours.

Because if you didn’t have faith and purpose, you’d curl up in a ball and die.

There is very little literature and even fewer studies (too few) about parents of children with disabilities or individuals with disabilities and church attendance or inclusivity.

Out of the University of Kentucky and Vanderbilt, author Eric Carter (2013), in his study titled “Supporting Inclusion and Flourishing in the Religious and Spiritual Lives of People with Intellectual and Developmental Disabilities,” He explains that out of the 416 parents surveyed, only 43% felt that the religious community was supportive, a third had changed their church because the church had not welcomed their child, and more than half didn’t even have their child participate or attend the church at all because the church wasn’t supportive or welcoming.

Doesn’t the Bible say we are all one in Jesus Christ? It doesn’t feel like that to us and to many families of children with disabilities.

The first church we attended with Will had a very welcoming Pastor family. They were very supportive and had worked with other families like ours. But the church is more than a Pastor, it is also its people. And the people, well, they were NOT interested in Will participating in children’s church or Sunday school and Will’s cries during church were “tolerated” with many unfriendly looks.

The second church seemed ideal as they actually had one of the few disability ministries around (note that I live in the 13th largest city in the country), yet the church itself was not welcoming to women preaching, to individuals who identified as LGBTQ, and it was large with a Joel Olsteen kind of cult feel. My husband and I are intellectuals, we like and can handle real preaching, not a sermon of clichés, smoke (literally smoke during every song), and outreach that fell way short of actually working with the marginalized individuals in the community. And Will was being babysat, not engaged.

I reached out and called the third church and was assured that they wanted us and would help us. We were encouraged to attend and try it out. We set a date. We were told we would be welcomed by the Associate Pastor after the service. We came. No one noticed us (How do you not notice a large and sometimes loud child in a green wheelchair wearing shooter style blue headphones to keep noise cancelled?). No one greeted us. No one came to talk with us after even though we waited in the designated spot until most of the church had left. And no on ever followed up with a phone call even though I completed the visitor registry explaining we were new and requesting more information.

I reached out to the fourth church, a newer Methodist church in the area, and left a detailed email AND phone call with the minister explaining our situation and how we had been turned away and to please only call us if he could help us find a way to attend church WITH our son. We didn’t want to once again attend and be met with false hope. No return call and no return email.

Turned away. Again.

So, we remain churchless. We have been churchless most of Will’s 13 years. I don’t worry about his soul. The Bible assures us that those who can’t ask for salvation, but are pure in heart will be accepted. And I have always described Will as part angel/part boy as he has lived in both worlds.

He was born dead and came back to life and came close to death again two other times on a surgery table. He often looks over and past us and makes eye contact with and verbalizes noises. I am confident that he is surrounded by angels, and the he communicates with them. He is really not fully of this world because he was born into a different one.

But I miss a church family.   I miss the feeling of corporal prayer, of an entire church lifting up and speaking together. I miss the simple things too like food and fellowship. I miss being able to talk with a Pastor or an Elder or a Deacon when times get tough, and I need some perspective and I can’t find the message I need on my own in a Bible. I miss the church.

As I write this, I am crying. And I don’t cry easily. I know my God feels my pain, and I know he has a plan. I will never lose faith in him and his son as I would never lose faith in my own, but I am beginning to lose my faith in the church and its people.

I know what Jesus would do. I love Jesus because he sat, listened, cried, prayed, and healed everyone he encountered. He remains my example. Jesus is my model for my own social activism and desire for social justice. He was with those who were poor in spirit, who mourned, who were weakened, who where hungry, who sought righteousness, who were rich, who were sinners, who were merciful, who were peacemakers, and who were persecuted.

My favorite Bible verse is from First Timothy 6:12, “Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made the good confession before many witnesses.” I will. My husband will. We will continue to fight the good fight for Will and for the opportunity to someday, be included and part of a church family. And one that loves us unconditionally.