I’m tired boss….

I’m tired boss. Mostly I’m tired of people being ugly to each other. I’m tired of all the pain I hear and feel in the world everyday. There’s too much of it. It’s like pieces of glass in my head all the time. ~ John Coffey, character in the movie “The Green Mile”

Exactly the way I feel when I stupidly turn on the news.

Sticks and Stones

Remember that old children’s rhyme? …………but words will never hurt me? As an overly sensitive empath, I find myself feeling hurt quite frequently by words. Mostly by words in social media comment streams. Perhaps I’m just old, but today’s main method of communicating thoughts and ideas, moved from the private pages of a personal journal or from the wired land lines of my past to the endless streams of back and forth on Facebook, leaves many, like myself, vulnerable to the written word’s ability to wound our psyches with pinpoint accuracy.

One of the positive things about turning 50 has been acknowledging my feelings and not being afraid of speaking out about the things that hurt me. On the other hand, in my trying to lovingly bring attention to those same wounding words, I may hurt those who had absolutely no idea of the power their words have wielded to wound me. If I am mindful of trying to voice my thoughts in a loving and compassionate manner, I feel better that I have expressed myself without hurting someone in return, but I may fall short of the mark.

Yes, social media is a place where we all can express our thoughts, our daily annoyances with our families and friends, the people who serve us in the coffee shop or the supermarket or the drivers who share our roads. Our lifetime frustration with political policies and parties and workplace drama also rate expression. But isn’t it possible to be mindful of how what we post and how the words we use when we express those thoughts may affect someone in a similar situation who might just read them? We don’t all agree on everything, especially things like politics, child rearing, and religion. But can’t we express those opinions we have in a way in which we don’t invalidate those who think and feel and worship differently?  The world would be a much nicer place if we only could.

Kids on The Spectrum and Their Affect On A Marriage

931442_296654033809276_260299980_nMy husband and I will celebrate 31 years of marriage in November. It was debatable for a short time between our 29 and 30th anniversaries that we would actually reach the 30th.

As in all relationships, passion is cyclical. Job stress, children’s needs, financial stressors, and caring for aging parents can and does put great strain on even the most stable of marriages. When you add a child who has an autistic spectrum disorder and who is transitioning into adulthood, strain is putting it mildly.

I know a couple with one child on the spectrum. My daughter has been his friend since they were 9 or 10 years old. She has attended every birthday party he has had since then, even though it became apparent that she was becoming more social and more adept at changes of routine than he was. At 13, when he made his Bar Mitzvah, I had to talk her into going because he needed to have the sameness of all of the people he loves at all of his personal events, even though she was feeling they did not have much in common anymore.

I watched his parents put their hearts and souls into their son and his well-being over the course of his grade school and middle school years. When that child went through the traumas and moodiness of puberty, he outweighed and was almost a foot taller than both of his parents. He is a beautiful boy; tall, handsome, athletically built, with beautiful blue eyes and the face of an angel. His mom works in education and his dad had volunteered for many years any time he could from his own career obligations to help out at many of the Special Olympics events that our kids participated in, as a coach and mentor.

These are decent, hardworking, loving people whose love and parenting of their son cannot be questioned. They have done everything to bring him up well, in spite of his diagnosis and his limited intellectual and emotional capacities. They presented a united and fiercely loving and protective unit and they still do.

When he was sixteen, his physical strength became an issue for his parents. Beginning to feel his heightened sexual urges (as all young males will) he did not know where to go with these overwhelming thoughts and with his body, which began to have a mind of it’s own. At times, he began to be quite inappropriate with his mom. After several instances where she became afraid of her own son because he was overpowering to her, and several crises where he had struck out at his father and caused him physical harm in his frustration and his lack of understanding of the proper boundaries between himself and the only woman he had ever loved, his mother, a decision needed to be made. His parents, together, made the agonizing decision to send him away to live in a residential treatment facility.

After several months of looking for a suitable placement, with the help of the school district and their case manager, a facility was finally found. It was within two and a half hours from home so that they would be able to visit him on weekends. During the search, they found that their own high expectations of finding the perfect, loving, home-like environment had to be adjusted to what was actually available. They also found themselves dealing with their own wretched feelings of guilt and the self-flagellation that they imposed on themselves contemplating whether what they were doing could constitute abandoning their only son. I was hurting for them throughout the process while feeling grateful that my own daughter did not have such issues. There but for the grace of God….you know the rest. Not so sure about the God part anymore, but the saying made sense during this time.

My daughter does not suffer classic autism. She was given the catch-all diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) after several years of trying to figure out just why she was exhibiting some very bizarre behaviors which began when she was a toddler.

She received various therapies for her developmental delays when her failure to sit up, crawl, walk, and talk at the appropriate ages became quite apparent to me. I finally convinced her pediatrician that I KNEW better than he that something was not quite right with my third child, no matter how often he told me that all children do things in their own time.

The screaming fits she suffered due to what I believe was her sheer frustration at not being able to do the things her brain told her body it was ready to do, became lessened after she was fitted with AFO’s (braces for her feet and ankles) and physical therapy and occupational therapy commenced. She finally began to walk at 17 months of age. Yet, she continued to have trouble with speech until after age 3, even with speech therapy 3 times per week. She had her own language, flapping her hands like a crazed Italian woman and babbling on and on for hours. All my neighbors thought it was so ‘cute’ but I did not find it so. She could finally make herself understood at age 3, but it was with difficulty.

At age 7, she got the diagnostic label and finally became qualified for special education services. I, at long last, gave up my never-ending quest to figure out what was wrong with her and FIX IT. I poured myself into helping her to achieve to her maximum capacity.

As each of her obsessive compulsive behaviors developed and took hold of our lives, they would quickly be replaced by the next.  They seemed to me to become less bizarre and less embarrassing as she aged. I noticed that even with her very low tested IQ, she was highly empathic and she could pick up on and react to the slightest change of emotional energy in a room. She gravitated toward the elderly and the kids who were more affected by their disabilities than she was and was always offering help.

As her speech improved and she could finally be clearly understood, she was not able to regulate her intonation or volume levels. She has one volume, VERY LOUD. No matter how much speech and language therapy she received, this has remained a fact to this day.

She is quite empathetic with her peers in the special education sphere, and yet she is like a fish out of water with “normal” peers. She is extraordinarily sensitive. She realized herself early on that she was “different” and became quite paranoid at an young age that people were talking about her or laughing at her, at her handwriting or at her artwork as displayed on the walls of her classrooms. She noticed the difference between her output and her more academically capable peers.

She will feel excluded when she sits down at a seat in the lunchroom or at the library and a peer then moves from his or her seat to sit elsewhere. It’s as if she has made up for her academic deficits with a highly attuned emotional barometer and a very sensitive nature.

I could probably write a whole book describing the next years of her life up until she became a teenager, but I’ll spare you. I was talking about marriage. Let me get back to that.

After several deaths, my father, my husband’s mother, and a beloved aunt only 10 years older than me, my formerly non-religious husband found peace and sanctuary in religion while my own faith dwindled. My daughter began attending church with him each week and was happy to finally have something special she did with her father on a regular basis.

The two of them befriended a couple who lived in our own town, and so began a lovely friendship with this couple who were our age and who liked to be outdoors, hiking, taking nature walks, sharing meals, and who always, always included my daughter in all of our outings.

I really enjoyed finally having friends who both were fun and kind. My husband and I seemed to equally seek out their company, which was not something we had shared with any another couple in our past. You know, he had his friends and I had my friends and sometimes we would go out as couples but we only put up with the husband of the couple because we liked the wife so much and he came with the package, or vice versa. I also really enjoyed that they were not drinkers, as my husband has had his issues with alcohol.

Little did I know that in the development of this friendship, there were feelings developing between my husband and the female portion of this couple. Looking back at it from a distance now, I should have known, I should have picked up on the signals and I dropped the ball.

The truth of the matter was, I was grieving. My husband was grieving. In the cyclical nature of a marriage, the passionate part of the cycle that constituted our married life had not been in the waxing stage of the circle since the deaths of our parents. I never doubted my husband’s love for me, but we were not connecting in a spiritual nor a physical way. If I thought of it at all, I attributed it to our personal grief. I really enjoyed our outings with this couple, I enjoyed the time we spent with them, as did my daughter and even my mother. I totally trusted that this was truly a friendship to withstand time. Time, however came to a very sudden stop.

My husband and I are not yellers or screamers. We have never fought or been disrespectful to each other in front of our kids. All of our initial dealings after the truth was revealed took place quietly and sadly behind closed doors. For about a week we contemplated how to end our marriage with as little animosity toward each other and as little disruption to our special needs child’s life as possible. We cried together, we opened up to each other, we talked like we had not talked in a long, long time. And then we discovered that even after all that had transpired, the betrayal I felt, the guilt he felt, we both wanted to try to put our marriage back together.

Throughout this short period of intense emotions; sadness, fear and doubt, we thought we were putting up a very good front for our daughter. But she was picking up on all of it. The first weekend that went by without our doing something with Dick and Jane (not their real names) she insisted on knowing why. She had looked forward to our outings as much as we had. When her Daddy did not want to go to church anymore, she demanded to know why. I could not provide her with answers that made sense to me, so how could I explain to her?

Her Daddy did his best to answer her in ways that she might understand. When the second weekend came and we still did not have a plan to see Dick and Jane, a light bulb went off in her head. She started questioning things that had happened during our last hike at the Celery Farm, and putting two and two together as if she could actually do math in her head! Still reeling with hurt and anger over all that had been revealed to me over the past few weeks, I informed my husband that he must be the one to answer her questions and confirm or deny her thoughts on what was going on, as he was the one who had put us all in this position.

He finally explained to her that we could not see Dick and Jane anymore because Jane wanted to be his best friend the way that Mommy was his best friend, and he didn’t think we could be friends with Dick and Jane anymore because that was not fair to Mommy or to Dick. That placated her for awhile. Then, the constant questioning began. Did Jane actually try to “kiss” Daddy? Did Jane want to steal Daddy and leave Dick? Why, during our last walk, did Jane and Daddy walk so far ahead of us? On and on it went, making it very difficult for me to work past my anger and my feeling of stupidity and betrayal.

My daughter perseverates on the negative. Whether it is that she thinks someone is laughing at her, or she feels someone does not like her, she will not let it go for years (and I mean years!) We are now almost 2 years past this incident and with counseling and time, I have come to see this episode as just another bump in the road that has served to force both my husband and I to attend to things within our marriage that really needed attending to. I have, for the most part, let go of my hurt and anger and regained the greater portion of my trust in my husband’s love for me and respect for our marriage. It might take a lot longer for me to ever make new friends, if ever, which does sadden me.

Yesterday, almost 2 years later, my daughter got into my car after a night out with her volunteer big sister, and she began to tell me how much Jane had hurt her by what she did, and how she was really sorry to be bringing it up again but she wanted me to know she had discussed it with her big sister because it was still hurting her so much and she really needed to talk about it.

She’s done this at least every 6 weeks since the actual events and, at first, it was like ripping a scab off of a nearly healed wound on my heart, opening it up to the searing
pain once again.

I patiently tried once again to explain this to her for what seems like at least the hundredth time, yet I know this will continue to happen over and over again. This is what it is like living with a child with a spectrum disorder. I cannot forget things nor get past things, because my daughter cannot. She will reopen this wound over and over, as she reopens her own wounds because her brain cannot and will not allow her to forget and put aside past hurts.

Last weekend, we attended my daughter’s friend’s 23rd birthday party. I was somewhat shocked to hear from his mom that she and her husband had separated and obtained a divorce in the year since the last birthday party. Her son still has no idea. She and her now ex-husband continue to visit him at his residential facility as a couple and they both come together to live in the house of his childhood where she now lives in alone, when he comes home for visits at the High Holy Days, Hanukkah or Christmas. They wish to keep his life as normal as they possibly can even though the tremendous strain of having an adult child on the spectrum finally pushed their own relationship over the edge.

There but for the grace of God, ……

Making A Statement

Making A Statement

Tired of the “My Kid Excels at blah blah blah, honor student at blah blah, blah?” For 22 years, these symbols of inflated ego on the back of minivans all over the country have given me a reason to be snarky. Yesterday, I did something about it, I designed and created my own bumper sticker!

My mother’s eulogy

Today is the one year anniversary of my mom’s death. In tribute to her, I am copying the eulogy I wrote and gave at her memorial service.

Nancy Derbyshire- Born March 27, 1942, died July 25, 2012

For those of you who personally knew my mother, no explanations are necessary, nothing I can tell you today would shock you.  My mother was a vibrant, loving, happy, joyful and grateful person who made sure that those she loved knew it so that when the day came that she was no longer here with us, we would have no doubt, no unresolved issues, no guilt or fear that we had not been everything and more to her and that she appreciated us to our core.

For those of you who were not personally acquainted with my mom, it might shock you to hear her life story and to think that someone who went through the trials of life that she endured would be the kind of person that she was.  Let me tell you a bit about her life…

Nancy Mary Elizabeth Elfrieda Holton was born to her parents Reginald and Elfrieda a bit too early.  Her mother was a somewhat older than average woman of childbearing age and had thought that her son Bill, who was already a 7-year-old, would be the only child she would be blessed with but, at a late age, she found herself joyfully and miraculously pregnant with my mother. Elfrieda, who did not like her name much and was called Nancy by those who were her family and friends, developed what we now know as pre-eclampsia of pregnancy, but at that time was known as toxemia. Her blood pressure sky-rocketed and a few months too soon, my mother was born, weighing only slightly more than 2 lbs.  In 1942, this was basically a death sentence for an infant, and she was given last rites and placed in a warmed bassinette to await her return to heaven. But something of a miracle occurred. My mother lived, day by day getting a bit stronger and a bit larger.  The joy of Nancy and Reg could not be contained. Within the next days and weeks though, a tragedy occurred that no one was expecting. My mother’s mother developed complications and as she praised God every day for her newborn daughter’s will to live, her own life ebbed away. She died not too long after my mother was born. Her best friend from nursing school, Marj, who had never married and was able to step in to help my now widowed grandfather with 7-year old Bill and a premature Nancy, eventually married my grandfather and when my mother was well enough and heavy enough to leave the hospital, became mother to my mom.  My mother was never told the story of her own mother’s tragic death and believed Marj to be her real mother.  Two more brothers were born very quickly to Marj and Reg, her brother Art and her brother Bruce.

At some point during her preadolescence, her own paternal grandmother, who suffered from some undiagnosed mental illness, was visiting and became angry at my young mother, who would not mind her on the right way to snap the ends off the green beans. My mother told her grandmother, in a child’s special way, “I don’t have to listen to you, you are not my mother!”

Well, Grandma Holton became enraged at such insolence and told my mom that Marj was not her mother either, that my mom had “killed” her real mother just by being born.  My mother ran to Marj and cried and asked if this was true and finally learned that her biological mother had died shortly after her birth. For many years after this revelation, my mother suffered terrible guilt that she had caused her own mother’s death.

Once the cat was out of the bag, so to speak, it became somewhat clear to my mother why her big brother Bill was always so angry and had moved out of their house, running away numerous times and finally leaving for good at only 16 years of age.  From his 7-year-old perspective, his own dear mother had been replaced quickly after my mom’s birth and he could never accept that and had not been allowed to grieve. There was terrible tension after his dad married his step-mother Marj and he had to just keep quiet and accept another woman as a replacement mom, so his sister Nancy did not ever find out.  This was the way things were done in 1942, everything swept under the rug and not dealt with.  Something else that now made sense to her was why every summer when she and Bill would visit their cousins up in Canada, Art and Bruce did not go.  They had their own cousins to visit.

Something else that was not really discussed back in the 1940’s and 1950’s was child abuse. My mother’s father unfortunately suffered from the same mental illness his own mother did. He had been terribly abused by his own mother and, in turn, abused all of his children. He was a hard man who enjoyed inflicting pain on his children, both physical and emotional, and they all just thought this was normal.

My mother met my father at age 17 after running into each other at a mutual friend’s home where my mom had gone to ask to borrow their automatic transmission car to take her test to get a driver’s license, it was love at first sight for my dad, who offered his own brand new car to her immediately and then began to court her.

At age 19, just two days after graduating high school, my mom married my dad and learned that the way she had been raised, the beatings and the verbal abuse and the feelings of shame, were not normal, that a man could be loving and strong at the same time and that children could be loved and cared for with warmth and encouragement. In spite of the way she had grown up, she managed to be such a loving mother to my brother Jim and me. My mother and father had wanted lots of kids, but her own mother’s problems of pregnancy seemed to plague my mom as well. She almost died giving birth to my younger brother and was told that she should have no more children. This saddened her, but she was happy to have the two children she got.

My mom was a typical housewife of the early 1960’s; she stayed at home and cooked and cleaned and looked after us. Coming home from school to the smell of a freshly baked loaf of cinnamon raisin bread is one of my favorite memories. My dad worked 3 jobs most of his life to support the family. They never owned a home and we lived in a small garden apartment in Maywood and life seemed good. There was never much money, but there was love. There was lots of love.

When I was age 7, my mom just 27, she had a mini-stroke while defrosting an old refrigerator/freezer with a big pot of boiling water and she burned over 90% of the front of her body, 3rd degree burns that were so severe, my mother was again, not expected to live. After 8 months of skin grafts, painful peeling and healing and peeling and healing, she again beat the odds and came home to be a mom to my brother and me. The doctors all said it was truly a miracle she had survived.  Twice now in her life, she had beat the odds against her and lived.

Our lives went back to “normal;” my brother and I grew and gave our parents the hard time that all kids give their parents during our early adolescence and teenage years….life was not perfect, we were not the “Father Knows Best” clan or the “Ozzy and Harriet” ideal. We had our issues, all of us, but we loved one another and always knew we were loved and accepted for who we were, especially by our mom.  She offered something that not even our Dad was quite capable of giving, unconditional love. No matter how bad we might behave or how angry she might get at us, she never held onto that anger and always let us know that in spite of how we behaved or how we might not be the “ideal child” at that particular moment, that she was grateful for us and loved us anyway. This is something not too many people get from their parents. She herself never got it and it was a miracle that she was so ready and able to give it.

My dad, on the other hand, suffered terribly from depression as he aged and although he was loving, he would go deep into his darkness at times and be very uncommunicative with us. My mother was the only one who could soothe his troubled psyche while providing us with enough unconditional love for the two of them.

Three days after my mom turned 40, she suffered a massive stroke and 2 heart attacks.  She could not speak, she could not move her left side at all, and she had been left handed.  For the first time in my life, I watched my mother grow very depressed.  She went to a rehabilitation facility but did not have the will to be compliant with therapies designed to get her a bit better. After six months of inpatient rehabilitation, my father took my mom home, supposedly to die.  The rehab said they could do nothing more with her, she had no will to live.

Once back at home, my dad would not give up on her, insisting on her getting back her will to live, he just would not take no for an answer. Tom and I got engaged and told my mom she had a wedding to look forward to. Slowly, day by day, through my dad’s love for her and the numerous loving caregivers and therapists we were blessed to have taking care of her while we all went to school and work, her fighting spirit returned and within a year of coming home, she was up and walking with cane, dragging her left side around, but walking! And, her speech returned with a vengeance! From that time on, you could never shut her up! Her happy nature returned and, believe it or not, life pretty much got back to normal for my parents.

Tom and I married, had our three kids, giving mom so much joy and so much more vitality and energy; she had new little ones to love in her life! Then Jim and Eileen followed with their beautiful wedding and Jimmy and John. Mom grew happier and more joyful with each wedding, each child, each passing day. My parents managed to take vacations and visit with their friends and family across the country, in spite of my mother’s fairly severe handicap and with the help of numerous earthly angels. They were overjoyed to help both my brother and I buy our first homes, something they had never been able to afford themselves.

We had many happy times at our children’s birthdays, baptisms, graduations, proms….. my mother fully enjoyed each and every moment of the rest of her life.  She never complained or allowed herself to become depressed over her physical limitations ever again. Her body hurt in the places it had atrophied, as the years went by, first 10, then 20 and, then this year, 30 years post-stroke, she praised the God of her heart for giving her more time. She was overjoyed to see Arielle finish high school this year and secretly hoped against hope that one of the boys might even get married for her to see before her time here was through.

Losing my dad 18 months ago had been a huge blow to her.  But even though their love for one another was a miracle and a blessing to them both and what sustained her through so many trials, she still was not ready to leave this earth. When we all went in to tell her that her beloved husband was gone, we thought she would go quickly. But no, she was just not ready yet. She missed her Derby and she grieved his loss, but she still managed to go through each of her days with a sense of purpose, loving those who cared for her both at home and at the place she called home for the past 7 years, the Maywood Center for Nursing and Rehabilitation.

Her lifelong friends became her telephone support line, her half brothers became closer, calling her more often and developing stronger ties in their older ages. Her new friends, her roommate Bunny, her volunteer visiting buddies, her fellow residents at the nursing center, they needed her too. Dad could wait. She was growing tired, but her need to be with people and to talk and to welcome newcomers to the nursing home, making new friends up until the end of her life, were inspiring.

She was an inspiration to me, becoming more so as she got older and her hardships increased but her spirit continued to become stronger, happier and more loving and accepting of all that life had blessed her with, including her infirmities.

If I’ve cried these past few days, it’s only been because I miss her, I miss her complete and total acceptance of me with all my flaws and her unconditional love for me, in spite of all I was not able to do for her. If I continue to cry at times, it’s just because I will continue to miss her. She was the most positive influence in my life, loving children who were sometimes very unlovable, loving a man who, at times, was not easy to love, attending all the religious services she could at the nursing home, because she knew that God does not live in a specific religion or a specific church or temple, but that God lives inside each and every one of us. And, even as I struggle with doubt and with the absolute faith that my mom had that God has prepared a place for us all, I know in my heart that she is with the mother she never got to know, that she is rejoicing at reuniting with my father again after 18 long and lonely months, and that her spirit is free of her broken down body. She is dancing and laughing and loving those who she has missed since they’ve gone from their earthly bodies. I know this because if my mom believed it, it must be true.  Image

Hot, Hot, Hot!

Just returned from a morning out doing doctors appointments with my daughter, and then being treated to brunch out after all our bloodwork was through. Getting into and out of my dark colored car, it was difficult to breathe in those first few minutes before the air conditioning kicked in and blessedly cooled down the car’s interior. I silently expressed my gratitude for the miracle of car a/c and cheerfully headed home.

I noticed all of the pedestrians, mostly the elderly and poor, walking more slowly than usual, with their arms bearing their bags of daily groceries and incidentals. I felt a twinge of guilt for being in a vehicle with a/c while they either chose to or had to walk in this blazing heat, the 4th day of well-above 90 degree temperatures here in the Northeast. 

Stopping at a changing light, the car ahead of me nearly mowed down an elderly woman carrying two armfuls of bags, in order to beat the red light. I was aghast. After practically jumping back to the curb, she composed herself and proceeded to continue walking across the street, where she was promptly berated by a young woman who had the green light and was furious that this old woman, sweating and carrying her heavy bags, should cause HER, in her fully air conditioned car, to come close to missing the light and have to WAIT another cycle to get across the intersection. How dare she? 

Another day in paradise. Watch out for cool young women becoming flaming hot over your crossing against the light.

This is “Modern” Childbirth?

I had the great displeasure of being in our state’s foremost ‘teaching hospital” last night, to help a friend of my daughter’s through the birth of her first child. Last weekend, CC was in the hospital for observation as an inpatient for 3 days due to high blood pressure, but was discharged on Sunday as there had been no protein in her urine, which would have indicated preeclampsia.

On Wednesday, she went to her regular scheduled prenatal appointment at the clinic where she has been regularly seen, but could not see one of the two physicians who know her and she feels most comfortable with, as they were not available. CC saw someone completely unfamiliar to her. This doctor, after hearing she was hospitalized over the weekend and observing her blood pressure was a bit high, decided that she should be immediately induced, almost 3 weeks before her due date. He sent her and her boyfriend right over to the L&D department.

It is quite normal to have what has been termed “white coat hypertension” which is a real and proven syndrome, and most doctors know that a patient who is totally unfamiliar with them and a bit nervous during an exam could be suffering from this. Yet, this doctor did not do the least harmful thing and suggest she continue checking her blood pressure at home, as she and her boyfriend were doing since Sunday, and, if it crossed limits set by her regular doctors, to come back to the hospital. Instead, he sent her for an induction.

At around midnight on Wednesday night/Thursday morning, CC was admitted to a labor and delivery suite (about the size of a large walk in closet), hooked up to a fetal heart monitor, a maternal uterine contraction monitor, a large bag of IV solution, and a blood pressure cuff. The first 12 hours, in an attempt to induce labor by having the cervix soften and elongate, a process which normally occurs when the baby signal’s it’s readiness to be born by secreting a hormone into the mother’s bloodstream through the placenta, they had been applying a prostaglandin gel by suppository, directly to the cervix, every four hours. Since it is 3 weeks before the actual due date and, a first baby, CC’s cervix is not ripened at all (a term used for how soft, thin and elongated the cervix becomes in the weeks prior to birth.)

I received a phone call from CC to please come and help her. She had been a foster child in the state’s foster care system since she was only 3 years old. My daughter had met her when they were both around 14 years old, at a special school for the mentally and behaviorally challenged and they immediately formed a friendship. I became friends with her foster mother and father, who loved CC, but were already in their mid seventies and felt it was not possible to adopt her as they had some of their previous foster kids.

CC’s natural mother was very much like her, developmentally delayed and of a low IQ, yet had conceived 5 children one after the other immediately out of high school and then had those children all taken from her by the state when the youngest was left in a bathtub and drowned.

CC ran away from her foster parent’s home last year, as they would not allow her boyfriend in the house, and had not been in touch much with any of us until last month, when she called to tell us she was having a baby with her boyfriend, another special needs kid who she’d gone to school with. She sounded scared and in need of a mother figure. She knew that I helped moms have their babies and she reached out to me.

I immediately sensed that my presence was not seen in a good light by the nurse or the doctor, when I arrived almost 24 hours after labor had been induced. Most especially, when I made suggestions to please allow her to get up and walk or squat at the edge of the bed in order to make her more comfortable and to hasten labor by using the natural force of gravity. I was immediately told that would not be allowed, no one in this hospital is allowed out of bed during labor, especially not someone who is being induced.

She was complaining to me that her back was hurting badly and that she wanted to get up and use the bathroom, but they were forcing her use a bedpan, which was uncomfortable for her and she hated it. Regardless, when I told the nurse she really wanted to get out of the bed to get to the toilet, the nurse brought the bedpan for her to use.

I rubbed her back for awhile after she’d relieved herself,  and helped her get up into a sitting position on the bed, which helped her back a bit. The doctor subsequently came in and examined her, and proclaimed she “might be” at 1 cm. dilation. She screamed at him that he was really hurting her during the exam. He apologized, but did not stop whatever he was doing during the longest internal I’d ever sat through, until he was quite finished. Not much progress in 24 hours. She told the doctor she was starving, her back was killing her, and she wanted to get up to go to the bathroom. He told her he felt for her, he knew this was hard, but did not give her any indication that anything was going to change.

I followed him out into the hall, where each L & D nurse is stationed right outside each door at a little desk and chair, and where I saw most of the nurses sitting studying their paperwork and computer screens. I asked him if he was aware that the mother-to-be is intellectually limited, having the IQ of a 9 or 10 year old. He said he’d heard some “talk” about it. I asked him why she could not eat or drink very lightly since labor was not very far progressed at all, and why we could not get her up, allowing gravity to help open her cervix. He looked at me like I had three heads. It was not allowed, she was a high risk pregnancy due to her high blood pressure and the fact that she had been induced.

I’ve attended other births in the past, including one of my own, which was considered high risk, and which I and the others had been induced with either prostaglandins, or just the simple breaking of the bag of waters, but we had all been allowed to walk, some of us pushing our IV poles, while we squatted, breathed through contractions, and did what a laboring mother naturally wants to do while laboring. I understand that using the prostaglandin comes with the risk of hypertonus, which is a condition where the uterus contracts much too strongly with little break between contractions, which must be closely monitored. But in previously attended births, it was enough to be on the monitors for the first 15 minutes of every hour and, if all was well, to be disconnected and allowed to do whatever felt comfortable until the next monitoring. But that is no longer allowed, I guess. At least not at the largest teaching hospital in our state.

I returned to her side and she was crying. I instructed her to roll onto her side, since it is a well established fact that lying flat on your back can compress the main artery supplying blood to the mother’s body as well as to the baby. Plus, it’s damn uncomfortable. I rubbed her back a bit more and told her how well she was doing.

The nurse came in a moment later, yelling at her that she must stay on her back as they could not read the monitor correctly or pick up the baby’ heartbeat if she moved at all. Since when? She then yelled at her that she wasn’t keeping her arm straight when the BP monitor was inflating, so they were not getting good BP readings. She then proceeded to tell her that she was going to insert a Foley catheter. I looked at this poor young girl and asked her if she understood what the nurse had just told her she was going to do. She shook her head no. I then politely asked the nurse to explain, in terms that her patient could understand, just what a Foley catheter was and why they were doing it. You would have thought I was the devil.

When CC yelled and cried while they were inserting the catheter and then again when they took yet more blood from her very small veins, the nurses hushed her and said things like “you will get your blood pressure up higher and that is dangerous, very, very dangerous” which, if you asked my opinion, is one of the reasons her blood pressure is high in the first place, being told constantly that her blood pressure is very dangerous, and not explaining things as a 10 year old could understand them, and making her lie still in a very uncomfortable bed, flat on her back at 9 months pregnant, and being scared to death. All those things can cause your blood pressure to skyrocket too.

This is different and difficult. In the past, I’ve always attended the births of babies born to couples who are of normal intelligence, and who the doctors and nurses listened to when they demanded their rights to the birth the wanted when they felt interventions were getting out of control. Or, who decided, on their own, to just do whatever they were being advised by the doctors. They were capable of making choices. But this is a mentally challenged young girl who is a product of the foster care system, a product of the special education system, and who just doesn’t know her rights and is not used to expressing them, anyway. When I encouraged her to say what she wanted, she was not listened to at all. I have no legals rights when it comes to her, as I do with my own daughter, who falls under my legal guardianship. CC falls under the care and oversight of our Department of Developmental Disabilities, who have done a fine job in allowing a mentally challenged young girl to become pregnant while living under the roof of her boyfriend. My hands are tied. I cannot use any of the tried and trusted methods of making labor easier and occupying her mind by undertaking any of the physical movement which soothes the laboring mother. This is the hardest labor I’ve ever attended because I feel as helpless as she is. But I can get up and walk, and I am not in pain, and I can reason. I am hurting for her.

The new modern labor and delivery system is so concerned with their monitoring equipment and their reams of paper proving that the anticipated C-section was necessary, so that they are not sued by the sharks in the law firms, that they have forgotten the human touch. All those nurses sitting out in that long hall outside these closet-like ‘labor suites’, not inside, comforting and caring for the PERSON in the bed and her partner, but fiddling with the monitors and the IV’s and the BP cuffs….it’s a travesty.

At 9am this morning, CC is at the same 1 cm she was at when I left early this morning so she could sleep (which thankfully, she did.) I will return to her when she is at 4-5 cm or when she cannot take it anymore and calls for me to come back. Perhaps because she is a state Medicaid patient they will allow her to labor longer and she may actually have a “natural birth” (?) due to concerns over the costs of C-section, which are not a concern for those with insurance. But I almost feel it would be kinder to her, to just skip this prolonged agonizing labor, which the modern hospital is making pure torture for her and her boyfriend, by not allowing her to nourish her body with light food or drink and by tying her to her bed with tubes and monitor leads and a catheter, than a normal natural delivery. And this is how they are ‘teaching’ these new OB-GYN’s to manage labor. Very distressing, to say the least.

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We All Need a Little Tenderness…how can love survive in such a graceless age?

943311_546642082054717_1357704668_nI live in northern New Jersey. New Jersey is a pretty small state. Not as small as some, but fairly small as far as these United States go. Last fall, we were hit with a terrible natural disaster.

I don’t live on the beach or ‘down the shore’ as most of us native Joisey-ites know it.  But ‘down the shore’ is a huge part in the life and times of most of the people of NY, NJ and PA, and many memories of good times makes these places ‘our own.’

In my home state, the natural disaster known as “Hurricane Sandy” touched almost everyone I know in some way, whether, like me and my family, it was only the inconvenience of living without heat and electricity for more than a week while waiting in miles of long lines for gas for your car or your generators (if lucky enough to own one.) Or, living without homes that were either under water or blown down by the damaging winds and without jobs like a lot of the people on the shoreline who were hit the hardest and have suffered the longest have had to endure.

Over six months later, our  federal government is continuing to play politics with these people’s lives, lack of habitable homes and loss of livelihoods. There are real HUMAN BEINGS, men, women, children, mothers, fathers, grandparents; continuing to live in temporary shelters while not knowing when federal disaster aid will finally be released to help them rebuild their lives as our elected representatives play their political games.

Now it is May. Another terrible natural disaster in Moore, Oklahoma. Men, women and children in shock over the loss of life, loss of homes, businesses, livelihoods. Pets and friends and family members; gone. Natural disasters are terrible like that. Striking rich and poor, making no distinctions for wealth or lack thereof.

I’ve woken up to the horrible images on TV, to blog posts calling for a stop to the politics and immediate relief for those suffering, and to those same compassion-less voices who were spouting off their opinions that people should not build houses near the beach back in October, spouting off today about people who should not live in trailers in tornado-prone areas.

Yes,  it surely is our own fault for living in the areas where we were born and raised; for loving where our families have roots, and for daring to count on the former love, compassion and generosity of our fellow Americans to help out when a natural disaster strikes. As I am composing this, it is being reported that Senator Tom Coburn (R-OK), a REPRESENTATIVE OF THE PEOPLE OF OKLAHOMA, is refusing to even discuss disaster relief for the Moore, OK area unless cuts are made elsewhere in the federal budget to pay for this relief. Ugh.

I pray that the people of Moore do not have to deal with the political game-playing of the representatives who hold all of our futures in their hands, as my fellow Jersey residents have had to deal with, although I know that is naive of me.

I pray that the people in Oklahoma who are suffering can close their hearts and minds and ears to all the negative boneheads spouting off their heartless opinions about putting themselves in harm’s way by living where they choose to live.

Open your eyes and minds and hearts to those of us, who, although maybe not the of same religion as you are (perhaps even non-religious) or the same race as you, or not of the same political leaning as you, not of the same opinion of marriage equality, or abortion, or sex-education; all of us who are THERE with you anyway, either with our thoughts and prayers, with our dollars sent for your relief, our donations of clothing or food or water or whatever we can manage to send; our physical bodies and our hands and brains and skills as builders,  plumbers, electricians, public service employees, demolition volunteers, search and rescue teams; whether under the flag of a  progressive, non-religious humanitarian team, or a conservative, religious group of any denomination, spreading love and compassion and real measurable 2013-04-28 14.42.24help to our fellow suffering human neighbors.

Yes, keep your eyes on the kindness and compassion of strangers.  TRULY SEE those strangers who you might normally think were not capable of such humanity.

This is how love CAN survive in such a graceless age. (Thanks to Don Henley for the lyrics to END OF THE INNOCENCE.)

Surfacing~Healing After a Major Depressive Episode

+ “I pledge my commitment to the Blog For Mental Health 2013 Project. I will blog about mental health topics, not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health issues. I use this to promote mental health education in the struggle to erase  the stigma of mental illness.”

This past week, I’ve made contact with some new blogger friends, who kindly reached out to me in love and compassion based on a post I wrote about a struggle I’m  having in my faith journey. One of those, Tony at A Way With Words, http://writingforfoodinindy.wordpress.com/ has inspired me to join the growing movement of bloggers promoting mental health.

 

Thank you, Ruby Tuesday of Canvas of the Mind for the opportunity to be a part of this growing network. If you are a mental health blogger and would like to be a part of this special project I highly recommend you take a look at Blog For Mental Health 2013 to see how you can qualify. A Canvas of the Mind tells the story of the launching of the movement –here.  There, she explains the terms –blogformentalhealth20131

1.) Take the pledge by copying and pasting the following into a post featuring “Blog for Mental Health 2013″. (quote above)

2.) Link back to the person who pledged you.  (above)

3.) Write a short biography of your mental health, and what this means to you. (below)

4.) Pledge five others, and be sure to let them know! (bottom)

Short bio: From the time I can first remember, I have been sad. I was a sad child, a sad teen, and a sad adult. Not until becoming the mother of a developmentally disabled daughter with an autistic spectrum disorder and co-morbid mental health issues, was I properly diagnosed and treated for dysthymia.

Now, at age 50, I’ve had my ass kicked by the deaths of several members of my family and some friends over a two-year period, including my mom, my dad, my mother-in-law and others, while losing my full-time, paid employment, and the unpaid, care-giving role to my long-time physically disabled parents.

My developmentally disabled daughter graduated from the special education system and into the adult services world, and a first time marital issue and religious doubts cast me deep into a Major Depressive Episode which I’m only starting to emerge from and heal.

As a relative new-comer to the blogosphere, I’m honored to have Tony ask me to take part in this project and I’m hoping that my limited experience in writing and in the ins and outs of WordPress have me doing this correctly.

5 Blogs I follow:

A Way With Words: http://writingforfoodinindy.wordpress.com/who-i-am/

Raising 5 Kids with Disabilities While Remaining Sane: http://5kidswdisabilities.com/about/

Vortex 144: http://vortex144.wordpress.com/

The War In My Brain: http://meganhasocd.com/about/

Ms. Crabby Ass: http://misscrabbyass.wordpress.com/about/

Easter Memories

I’m sitting here tonight, remembering the days when I used to think the Easter holiday was so much fun.  We boiled dozens of eggs in order to sit with the kids and dye them, then the husband and I would argue about whether or not it was okay to leave the eggs out in the baskets and/or hide the real eggs around the house for an egg hunt in the morning (I argued no and usually won; who wants to deal with salmonella poisoning on Easter?) The eggs got placed in the fridge and days of egg salad sandwiches and deviled eggs were consumed for a week after the holiday.

After finally getting the kids to bed, all excited and dreaming of what the Easter Bunny might have filled their baskets with by morning, we would happily put the chocolate bunnies, Reese’s Peanut Butter Eggs, jelly beans, Peeps, and various video movies, toys and trinkets into the baskets.

EasterEaster mornings, waking up with a house full of their cousins, up from southern Jersey, who had slept over the night before, who were going to be having Easter dinner at their other aunt’s home near our own house for their traditional Ham, while we were traveling to our aunt’s home in southern Jersey for our traditional Easter Lamb dinner. Searching the house in the morning for the baskets hidden upstairs, downstairs, in the basement, the oven, the clothes dryer. Watching Aunt CJ make her bunny cake with the licorice whiskers just in time to take it to their Easter Celebration as we got ready to leave for the long ride down to Aunt Susie’s. Having an Easter egg hunt at her house with our other cousins when we arrived there for dinner. Aunt Susie, who, along with Grandma Brown, would have hidden at least 50 little plastic eggs filled with coins or jelly beans all over her big yard. Which little plastic eggs would hold the most money?  And, who would find the one egg with the paper money? The kids would all be so excited. Those were the days.

I wonder if my kids remember these moments as fondly as I do? I have so many memories which my kids will often tell me they don’t recall at all when I share them. Then again, I don’t really remember the holidays of my childhood as my mother did. We think we’re making memories for our children, but maybe the memories are really being made for ourselves? Life is funny. Maybe if any of my children have kids of their own in the future, then they might have the wonderful memories of their children’s holidays as I do.