I Am 35 Years Worth of Exhausted

What exhausts you? 

Work? Family? Politics?  The news?

All these things can be exhausting. The thing that exhausts me and has for the last 35 years is disability. I just wanted to have a child. I just wanted to grow my family and live a simple life. That is what many of us wanted when we made the choice to become parents. 

My journey of exhaustion started when my now 36-year-old son was about 9 months old. His pediatrician saw that he was not meeting the normal milestones that babies meet in their first year of life. And so, it began with more doctor visits to specialists and hospitals and tests to see what was causing his delays. My husband and I had to watch our scared little boy suffer through all of this. We had to help hold him down for blood draws and IVs to inject sedatives for CT scans. We had to hear his cries as all these strangers invaded his space to help him. It was mentally exhausting. 

It did not stop there. He was misdiagnosed with A-typical Mild Cerebral Palsy. In the coming years I realized he was not displaying the signs of CP, but more the signs of Autism. In the late 1980s and early 1990s, not a lot was known about Autism. We sought more doctors who did more tests, which finally ended up with an Autism diagnosis. 

During that same period, other battles began. I learned that Josh would need to start Special Education preschool at age three. Along with that came classes to learn about laws that had been passed to support the education of children with disabilities. The Americans with Disabilities Act (ADA), and The Individuals with Disabilities Education Act (IDEA) had been passed prior to our son’s birth. I thank God for that! Classes were being taught locally to help me understand these laws and other things I would need to do for Joshua to make sure his rights were not infringed upon and to make sure the school district was providing every support he needs for his education and his ability to be educated. 

My teachers were people whose disabled children had already been through this process. They knew how to advocate because they had done it and were still doing it. They knew all the obstacles I would face because they had already stood up against them. They knew the funding would be heavily guarded at the schools because there we so many students who needed it and more students to come and not enough money in their budgets to pay for everything every student needed. After completing these classes I was terrified that I could not be a great mom for my son. My husband and I did it together. He was more assertive than I was, so I told him what Josh needed and he came to the meetings at the school and got them to agree. Learning about our son’s rights was truly helpful to our family. I will forever be grateful to my teachers! All the people we worked with and sometimes battled at the school district were and are good people who wanted the best for all their students. I am grateful to them for helping us, as well. This advocacy went on throughout Joshua’s education until he aged out of school at twenty-two. I grew so weary of it by the time he reached 20 years of age, that I stopped advocating during his last year of school and just gave in when they wanted to take therapies away from him. It is not something parents of disabled children must do once; we must do it every year for every service they try to take away. Plus, we have a financial burden of paying for extra therapies outside of the school district to help our children achieve their highest potential.

When people with disabilities age out of school, the battle for adult services begins. On top of that struggle, if your adult child has a severe disability or behaviors that are more challenging than most, you have a harder time getting service they need. No one wants to “deal with” our adult children’s issues. Some are aggressive, or have mental illness on top of their disability, or don’t understand personal boundaries, or poop their pants. Just like with the school districts, there is never enough money in the budget to pay for everything needed, including living wages for support workers in group homes and institutions. There isn’t even enough money in each state budget to get adults with disabilities into group homes or community-based services and they stay on waiting lists for these services for many years. Some only get off the list because their parents die or become too disabled themselves to keep caring for their children. They get off the list due to crisis and possible homelessness. This is the worry of every parent with disabled adult children. Every day of our lives, this is our main worry. What will happen to my child when I die?

This is a housing crisis, a staffing crisis, and a budget crisis in every state in this country! It’s been at crisis level for YEARS.

As parents, we exhaust ourselves by learning, planning, and advocating with emails and phone calls to our representatives in Congress. We save as much money as we can. We try to figure out who can be there for my child. Who is willing to be there for my child? Unless you live with this worry, you can’t truly understand it. That is why I am desperate to explain it to you. 

We learn about Medicaid and Medicaid Waivers enacted by Congress to help our children. 

Every four years a new election takes place, and our families are traumatized by proposed cuts to services we rely on. We advocate again, and again, and again, every time our adult children’s lifelines are under fire. We must defend these programs and funding from the very party who started them. It makes no sense. 

IT. 

IS. 

EXHAUSTING!

Now, I spend my “free time” learning about various housing arrangements for people with disabilities and how to fund them. Since January 20, 2025, I am wondering if it is futile for me to continue this endeavor to create a place where he will be safe and happy after I am gone. Will these programs still be here for him? Am I wasting my time? Have all my efforts been in vain? I did not choose for my son to be born with a lifelong disability or to be a burden on society. If I were wealthy – and I know I can speak for other families when I say this – I would not have to advocate this hard, all the time, for welfare. We don’t want to be on welfare. None of us do. We don’t want our kids to be on it. 

WE HAVE NO CHOICE. WE ARE NOT ABUSING THE SYSTEM. WE ARE TRYING TO HELP OUR ADULT CHILDREN SURVIVE LIFE WITHOUT US ONE DAY. 

WHAT ARE TAXES SUPPOSED TO BE USED FOR IF NOT THIS?

Are there abuses and fraud? Yes! But it’s not being done by our families or the people who work at Medicaid or the people who oversee Medicaid. It happens when unscrupulous doctors and pharmacists bill Medicaid for servers they have not rendered. These doctors and pharmacists are not the ones who suffer when cuts are made to Medicaid. 

Are there single moms and dads who have boy/girlfriends living with them they don’t tell Medicaid about? Yes. This abuse is a tiny fraction of what Medicaid pays out for services to people who have no choice but to be on it. Some of those single moms or dads have at least one disabled child who truly needs Medicaid. 

I could talk to you about the laws Congress makes and the procedures for changing those laws and how things that are happening now by this administration are illegal, but many of you won’t believe me. I’ll post links so you can see for yourself. 

Medicaid Waivers save millions of tax dollars by keeping adults with disabilities in their communities and out of institutions. Ronald Reagan was a great supporter of Medicaid Waivers. He understood the importance of getting people out of institutions and back into their own communities for their own good and the good of the government’s budget. 

It costs way more to keep people in institutions than it does to keep them at home. 

Having a child with a disability when you are not independently wealthy is no joke. It’s not fun. It’s not a way to get rich. It’s hard as hell. Please stop supporting these cuts and making life harder for families who need these services. I have not even mentioned how difficult it is get these programs. You must prove you need Medicaid, and you must prove a certain level of disability to get waiver services. Then you must find providers who take Medicaid so you don’t have to pay out of pocket for doctors.

Nor have I mentioned what cutting the Department of Education will do to children with disabilities, but below are links to the laws I mentioned above. These protections will be taken away if that department is gone. I used that department on more than one occasion to remind our school district of laws they tried to ignore.  

I’m not saying reforms are not needed. They are. There is a better, legal, ethical way to do it. Let us work together to get it done. 

 Links: 

A previous post I wrote to our law makers - http://mindchange4all.blogspot.com/2017/06/an-open-letter-to-american-lawmakers.htmlIDEA - https://sites.ed.gov/idea/statuteregulations/

ADA - https://www.ada.gov

How Waiver Services Began - https://www.innow.org/2021/11/11/disability-history-hcbs/

The US Department of Education - https://www.ed.gov

Learn more about the housing, staffing, and funding crisis through this podcast, which is called Autism Confidential, but pertains to all disabilities. Scroll through the list to find various topics. Though they have speakers from different states, the issues discussed apply to all states. - https://www.autismconfidential.org

On the Autism Confidential podcast, scroll to Episode 43, Dr. Paul Offit: Battling Vaccine Myths Again, to hear from the doctor who convinced me that vaccines do not cause Autism. I used to believe they did, sadly. 

How algorithms foster our biases - https://youtu.be/1z9KsNoAmFA?si=s7I7Z81XjlhdeLoC

How algorithms shape our political thoughts - https://www.bbc.com/news/articles/cp8e4p4z97eo

https://www.brookings.edu/articles/how-tech-platforms-fuel-u-s-political-polarization-and-what-government-can-do-about-it/

 

A Privilege Can Suck

I recently listened to a podcast about caring for a spouse with ALS in which the person being interviewed said she had heard a caregiver felt privileged to care for their spouse while they died. She did not understand that. To her, caregiving sucked. She hated everything about it. Please do not judge her for feeling that way. If you have never cared for and nursed someone who has been dying from ALS, you have no idea how hard it is. 

And yes, IT SUCKS!

I hope if she or anyone else who feels that way reads this, they will see their former caregiving in a new way.

I felt extremely privileged to care for my Raymond as he died from that horrible disease. I told him that when he apologized for any task that he needed help with, and I truly meant it.

Caregiving is hard, especially when a person is losing their motor control. However, I always tried to keep in my mind that it was much harder for Ray to lose control over his body, than it was for me to give him the care he needed. I was not perfect and sometimes I failed to remember that. The woman I mentioned above had to deal with some things that were quite extraordinary that I never even knew could happen to a person with ALS. I am truly grateful Ray never suffered in the same ways her husband did. 

You might be wondering where the privilege comes in if caregiving so hard. It comes from the things you tell yourself about your situation. Changing your thinking and your perspective is key to your own sanity in situations like these. I am in no way suggesting that other spouses / caregivers have too much negativity in their caregiving. I absolutely know they love their PALS and their late spouses. I absolutely know they all gave great care to their PALS. We all did the very best we could in horrible situations. My goal here is to help others going through this or any kind of struggle and to help those who have gone through it to look back and gain a better perspective on what they went through. And maybe, to realize they really did feel privileged to care for their spouse even when it sucked. 

In my heart, which ached for my dying husband, I felt honored that I was in the position to show this man how much he meant to me by helping him go through this life altering, life ending illness. To help ease his pain, to show him how much he was loved, and appreciated; to show him he was worth all the sacrifices I had to personally make to help him was the least I could do for him while he was dying. His life was ending and my heart, my soul, my body wanted to take away any amount of pain from him that I could. I saw this as my last opportunity to show him forgiveness, love, compassion, and gratitude for all he had given to me and to Joshua during our life together. This was my last chance to show him I did not want to lose him. I had that privilege. Some people don’t get that chance. In my imperfect caregiving, he knew my heart. 

And still, IT SUCKED! There were times I hated it. There were times I wanted it to end even knowing what that meant. And it was still a privilege. It sucked and it was a privilege when we cried together. It sucked and it was a privilege when we got angry with each other while caring for him. It sucked and it was a privilege knowing we were laughing for the last times together. It sucked and it was a privilege to get up 15 times at night to adjust his breathing mask. It sucked and it was a privilege to do whatever he needed me to do every 5 minutes 24 hours a day for his last two or three weeks. It sucked and it was a privilege to help him in ways we never would have thought he would need. There were times I hated the circumstance we were in, and times I did not want to get out of that bed to help him, but I knew it was a privilege to do it. In the end, after he died, I was grateful it was over, but I missed the healthy man he had once been. I knew I had done the best I could for him. Some people say they want their spouse back even if they must keep caregiving for them. I was not one of those people. I was glad he was finally out of that body that had betrayed him. I was glad the ordeal was over for us both and for Joshua.  

To give care to someone who is dying and can’t do anything on their own is one of the most compassionate and empathetic things you could ever do. It is also the hardest thing you could ever do. If you are ever able to give care to someone you love, give yourself the gift of knowing what a privilege that is. Imagine if you ever need care like that. Imagine being helpless and needing someone like that. You would not want to need the help. So, if the person helping you feels it is a privilege to do those chores, you both win. 

 

Peace be with you. 

I Don't Have a Penis

There is a debate going on in our country about women being allowed to preach in Christian churches, to lead a congregation, to teach people what they believe in their hearts about Jesus and Christianity. 

Allowed. 

What a word! Women must be allowed to do something men take for granted. What year is it again? My calendar says 2021, but that can’t be right if we are still – more than 2000 years after the birth of Jesus – telling women what they are allowed / not allowed to do in the United States of America.

Women make up more than half of the USA’s population. 52.52% to be precise. Yet men and women who grew up in fundamental religion believe it is okay to tell women that they are not allowed to do something that Jesus himself never said they could not do.

Now, I could go on and on telling you what all I have learned about Jesus and women in his ministry, about the culture back then, about how God loves us all equally, and I could remind you that women wrote about theology and spirituality way back in Jesus’ day, just like the men did and the only reason their work did not make it into the Bible is because, well, the same reason we are debating a woman’s right to preach today: patriarchy. But why go into all that? There is a much simpler thing I could point out to you. 

I don’t have a penis. 

I have testosterone in my body, just like men, although not as much. Some days it feels like it when I’m plucking my whiskers in front of the mirror.

I have arms and legs, a head, a neck, fingers and toes, like men have.  

I have a heart.

I have a brain.

My body is not as large as a man’s; nor are my muscles, but I have them. 

My heart is capable of giving as much love as a man’s heart.

My brain is capable of holding as much knowledge as a man’s. I’d say that is quite amazing considering that it is physically smaller and lighter than a man’s brain. Wouldn’t you?

Ray was really good at math, but I suck at it, so I was always asking him to do math problems for me or to tell me how to figure out a math problem. That does not make me inferior to him. And there are many women who are great at math – even better at it than some men. I am better at language skills and writing, so Ray was always asking me how to write things or to communicate them in a better way. Did that make him inferior to me? 

Of course not.

We have women preachers in many churches across this country, so why is there still a debate in some churches? Are there problems in the churches where women are preaching? Are there scandals? Trust me, if there were, we would hear about them!

What are we afraid of?

There was a running joke between me and Ray for many years. Sometimes, when I asked why he did or didn’t do something around the house, just as a joke he would reply, “Because I have a penis.” Anytime I would wonder why something was the stupid, idiotic way it was between what women were not allowed to do and what men were privileged to get to do, he would reply, “Because we have the penises.”  Or I would say, “Oh, right. It’s that penis thing again, isn’t it?” Or we would both nod and say in unison, “Penis!” 

Because really that is the ONLY reason women are not given the same privilege or respect or opportunities or consideration as men. You can make any lame argument you want about the Bible and the roles not given to women back then by the men who were published in the Bible, but do we really want to continue that old exclusionary way of being in this world? We don’t have slaves now like they did back then. Societies moved from slave owners treating their slaves any way they wanted, to slave owners treating their slaves with some bit of kindness and compassion, to the realization that slavery is wrong. Societies moved from you accidentally poked my cousin’s eye out so therefore I am going to poke your eye out in the name of justice, to I realize it was an accident that you poked my cousin’s eye out, so I only require you to pay him X amount of money for his lost wages while he recovered. Societies moved from walking past the injured man on the street because he was what religious leaders deemed to be “unclean,” to realizing that an injured man deserves help no matter what his status is in other people’s eyes. Or did we? We at least like to think we have progressed that way. 

Societies must learn and progress to knew realizations of equality and fairness for everyone. Everyone includes women who are called to preach. 

The year is 2021 and the absence of a penis is not a good reason to keep women from sharing our wisdom as leaders of churches. It’s just not.

I have been informed that the email subscription service for this blog will no longer be supported in July 2021. Please check back here to find new posts, although it is truly random for me to write a post these days. You can always send me a facebook friend request, as I always post them there. 

Remembering Ray 1962 - 2020

Ray's Urn and shirts. He loved clocks!

Today - April 11, 2021 - is our 34th wedding anniversary. April 20, 2021 will be the 40th anniversary of our love relationship. We met when I was 14, he would soon turn 18. We became boyfriend / girlfriend when I was 15, he was almost 19. I refuse to say it “would be” our anniversary “if he were alive” because, despite the vow, until death do us part, he is still very much here with me and our son. He is in every memory, every song, every mile, every joy, and every sorrow. He is here when I write to him and when I talk to him. He is very much in every ordinary thing.

I am stabbed in my heart by the most mundane, daily actions and motions I’ve made a million times the past 34 years: opening a kitchen cabinet, spraying hair conditioner into my hand, brushing my teeth, stirring a pot, cutting vegetables, washing dishes, waking up. Each motion brings with it a flash of the sweet ordinariness of before and the lonesome ordinariness of after. He was here in the ordinariness before. And every ordinary thing that happens after, happens without his physical presence. 

I expected some things to stab me: the holidays and birthdays, our anniversary, taking my mother-in-law back to Kentucky without him, coming home to this house without him. I did not expect these routine, daily actions to stab me. 

April 11, 1987

With these actions, pictures pop into my mind of him sitting in his recliner or his wheelchair before; but now I am alone in the after, wanting him to be in that chair, but knowing he is not. Sometimes I can stop the tears before they wet my cheeks. Other times, I couldn’t stop them if I wanted to. Tears truly are capable of falling down like rain. Sometimes those tears can fall like a waterfall streaming down my face. I don't think I ever had cause to cry like this before.

Pictures of our car ride after diagnosis - him sitting next to me, our son in the back seat, the sunlight on the buildings, street, and cars in front of us, the feeling of pure sorrow we all felt, the shock and disbelief, the hopelessness - flash through my mind in a nanosecond on ordinary days at ordinary times where they make no sense to be. Sometimes the picture is a shopping trip we took to IKEA many years ago that was of no significance. We didn’t buy anything. But we were together. It was a good day. A happy ordinary day. A before-he-died day. Often its memories of our trip to Detroit just before his diagnosis that makes me want to turn back time to the before. 

I brush my teeth and see him giggling, his tongue following the toothbrush wherever it moved, his big beautiful smile and his eyes dancing as the new electric toothbrush tickled when I brushed his teeth. I never want to forget the way he looked then, the way the corners of his mouth turned upward and his cheeks puffed up, or the way his laugh sounded. The way we giggled together. Then. Before. Never again. I welcome this bitter-sweet memory every day because I love having such a clear, vivid vision of him. 

As I walk through the living room I catch a glimpse of a car pulling up to the gas pump across the street. I’m stabbed in my heart with envy. I imagine their lives are normal and good. There’s sunshine. It's an ordinary day and they are doing ordinary things. They haven’t lost someone. They don’t have this hole in their life where their Love used to be. There’s no before and after. 

Enjoying his new deck and ramp

Our son closes the door to the room where his daddy spent most of his free time. The room where he used to visit his dad so often, alive and healthy. Does he close it because Daddy always had it closed? Does it make him feel like Daddy is still in there despite the lonely silence? Does it hurt him to look in there and see it dark, empty, quiet? I’m sure it does. Of course it does. His heart aches. 

Josh makes me repeat the phrases his dad often said... Piggy Wiggy, Stuart Little; Josh is the muscle man. I often tell him that he is a good man, just as his dad often told him. Every night he hears me say, “Mommy loves you and Daddy loves you.” Does he believe me when I tell him his dad’s love will never die, that it’s all around us? Does he feel it? I hope so. 

Shaving our son’s face brings memories of shaving my husband’s face after ALS stole his arms and hands. I remember what he taught me about shaving. Pictures pop into my mind of his skin, his whiskers, his neck, his lips, and the faces he made to tighten his skin during the shaves. I once again feel the sorrow of having to do this for a once capable man. 

And the honor. 

I remember the nervousness I felt the first time I helped him shower. Trying to make him feel dignified as he apologized to me for being unable to do it for himself. No need to apologize. He never lost dignity in my eyes. He did not choose this. I was in awe of his emotional strength as he lived through the progressing disabilities. I still am. 

Each progression came with a new cycle of grief. His hands, his fingers, his arms getting weaker. The muscles slowly dying. Fighting tooth and nail to continue feeding himself. His neck muscles, his throat muscles, slowly stealing his ability to speak. To swallow. The only surgery he had in his life was getting the feeding tube. His legs, his feet swelling with lack of movement. Unable to climb the stairs from weak leg muscles, he was confined to the first floor. His world getting smaller and smaller. His abdominal muscles dying, he could no longer eliminate his bowels easily. His chest muscles dying, he could no longer breath unassisted. Or cough. The risk of aspiration pneumonia heightening daily. Which ultimately killed him. 

We cried. Often. Together. In the hotel room in Rochester, Minnesota, after his diagnosis when he asked me if he was going to die. Was he afraid to ask the doctors because of their somber tone? Was he afraid he would display some emotion in front of these strangers? Through sobs and a torrent of tears, I told him what was to come. Holding each other. Holding our son. Just us three in the hotel room. 

One of their last hugs

We cried together at home, telling his mom over the phone that her baby boy had a death sentence. That she, in her 80’s, would outlive her youngest child. Over the course of days, weeks, and months we would cry together, sitting on our couch in our newly remodeled room, looking around at our accomplishments. Remembering all the hard work we had done together in this room before we knew he would soon be unable to do anything. Wondering, how long would he get to enjoy it? One year? Two? Can he enjoy it now at all, knowing he is dying? Telling each other how sorry we were for every harsh word spoken over the years and everything we did that caused pain to the other, tears fell like rain. Trying to remember exactly when the symptoms began. Trying to do the math of how long we had. To live. Together. 

Sitting in his recliner with me kneeling in front of him, our tears falling on each others hands, fear gripping him as he wondered what it will be like to die from being unable to breath. Wondering if I will put him in a home when his care becomes too much. Never. You will not suffer. I will make sure of it. Hospice will come here. You will get the really good drugs. You won’t know you can’t breath. I promise. Getting into his new adjustable bed for the first time, telling me this is his death bed. No! Don’t say that! Now understanding why he resisted getting the bed. Each time he said the words he’d said jokingly a million times before diagnosis: You’re gonna miss me when I’m gone. Yes! Yes, I am! More than you will ever know. Waterfall tears. 

I don’t know if he ever cried alone. I did. Wondering how I will live without him. Looking ahead at 30 or 40 years without him. Wondering how he continues on knowing what is coming. On my way home in the car after dropping our son off at his day program. The weight of the sorrow overwhelming me. But I’ve learned not to ask God why. I did that in the car on the way home from Minnesota. I concluded it’s a human thing, not a God thing. Murderers don’t suffer ALS. Rapists don’t suffer ALS. And there is nothing my husband could have done to deserve this. This is not a punishment from God. Falling back into the wisdom I’ve adopted over the years that God is love and does not play that way. This has to be environmental. It just has to be. 

More quiet tears laying in bed at night during the last two weeks of his life. Asking God to take him soon. Feeling horrible about it, but wanting his suffering to end. I tried desperately to get his doctors to prescribe the drugs because we didn’t have hospice yet. Covid made us afraid to get hospice. Covid stole our ability to feel safe getting help. Getting a response from any of the doctors most familiar with ALS was way more difficult than I thought it would be. It was way more difficult than it should have been. The biggest regret I have of our ALS battle: My promise, that he wouldn’t suffer, unkept. 

Ray's sense of humor!

Somehow, through all of the grief and loss, we laughed. Full, until-you-cry, belly laughs. Because he was funny. He had a beautiful, sometimes wicked sense of humor. Like the time we joked about defending ourselves from an intruder, using nothing but our long toenails because I was too busy to trim them. He was always saying funny things as I cared for him. He made me belly laugh many times during that year. Spontaneously, he would come out with a line that just killed me. I hope to remember those funny lines one day. 

These stabs to my heart happen less frequently now after 6 months of grieving his death and 18 months of grieving ALS. And when they happen, I recover faster. I know a day will come when I go days, weeks maybe, without one, but that they will never disappear completely. He will never disappear completely. I’m glad about that. 

I will always remember our first conversation, sitting on the porch at our friend's mom's house. He was telling me one of his embellished stories of Detroit. He told me about Molotov cocktails during the race riots in Detroit, as if he had seen it in person. He told me about the policeman being shot off his porch, as if he lived there at the time. He was eating pork rinds and drinking Mountain Dew. He offered me some of his "acid rings" and "Mountain Brew". That was the first time we laughed together, and that memory makes me laugh, to this day. When I went home that evening, I told my parents about this boy I had just met. It was actually our second time seeing each other, but our first conversation. He was different than anyone I had ever met before. I could not stop thinking about him. 

We would get to know each other over the course of the next year before we became girlfriend / boyfriend. There were times during that year I was entertained by him, and times I was exacerbated by him. Ray was opinionated and not shy about sharing those opinions. He could argue his point to the nth degree even after realizing he had lost the argument. But, in his later years, hours after the argument ended, he would admit defeat and we would laugh about his stubbornness. Ray was the one our young group of friends always asked each other, "Where's Ray? Is he coming over today?" He was the cool guy we all wanted to be around. I will never forget the day he came walking down our friend's basement stairs after getting his hair cut short. My God, he was gorgeous! Even though I had admired him, and loved being his friend, that was the day I became attracted to him. That was the day I first felt the electric shock pierce through my heart and out my finger tips. Literally. I would feel that electricity many, many times over the course of 39 1/2 years. All he had to do was look at me or call me twinkle toes. I miss that electric shock. 

1980

The once youthful, healthy Ray walked around town in the summers with his boom box on his shoulder and his cigarettes rolled up in his T-shirt sleeve. I'll never forget his walk; the way he made a little kick motion with his feet as he took each step. He had the looks of a long haired hippy who was up to no good, but he never was up to no good; not any more than any other teenager. A gas station attendant once accused him of stealing cigarettes from an open display near the gas pumps. He hadn't done it and it really pissed off our group of friends who were all there at the time. Another time, he and I were accused of pushing a shopping cart off the sidewalk at K-mart and letting it hit a car parked in the lot. We were stunned that someone would think we had done that. Luckily, a man who saw the entire thing, came to our rescue and told the accuser that the wind had blown it off the sidewalk. 

Despite his long career in Supply Chain Management in the manufacturing industry, in his heart and soul, Ray was a policeman. It was his life long passion. In his early 20's he was a volunteer for the Belvidere Police Auxiliary. He loved riding with the cops and eventually, after seeing his competency and skill, they enjoyed having him ride with them. The police sergeant at the time would even assign him his own car to patrol in and often called him on weekends to see if he was available to "work" that weekend. He was very proud of that honor. Ray later took the necessary training to become a paid police officer and worked for the Metro Center Police Department and eventually as a patrol officer at the Kingston Police Department. He was a compassionate police officer, especially when young people were involved. Much to the chagrin of other officers, Ray would often let the young ones go with a warning. And if his partner questioned why he let them go, he reminded that officer that they were young once, too, and had made the same mistakes. He would sometimes tell me how scared he had been just before having to escort some inebriated man out of Davis Park or the Metro Center, and how relieved he was that his training worked in helping to get a large drunk person under control. Years after he stopped doing his part-time police work, he still pointed out reasons to pull over a car as we rode around town. And he could be heard asking himself, "what are they up to?" if he saw a group of teens walking around. But, he would always let go of his judgment when reminded of the accusations he endured in his youth. 

Ray in Police Auxiliary uniform

Most people will remember Ray as one of the amateur photographers around Belvidere and Rockford. He loved taking landscape shots at the Belvidere Park and Boone County Conservation Areas. Or shooting people out for walks with their kids and dogs at the parks, as well as parades. In the last couple of years he found a new love of automobile photography; going to car shows and cruise nights, taking hundreds of photos of classic cars and hot rods. He was good at photography. He was better than he ever truly believed he was. 

He was not a perfect man or a perfect husband; I was not a perfect woman or wife; but we loved each other and our son. We both did our best for each other and our son. I see Ray in Josh's skinny legs and long slender feet. I see Ray in the size and shape of Josh's ears, and I hear Ray in the sound of Josh's voice. Ray made me a better person by showing me who I was through his eyes, whether it was good or bad. He shared with me how he felt about things I said and did. He always made sure to tell me about things he admired about me. And when I apologized for my irritability from lack of sleep while caring for him at the end, he told me not to worry about my attitude, that he was just glad I got out of bed every time he needed me, no matter how tired I was. That is a gift that sustains me when I feel a pang of guilt.

This man I have loved for 40 years is still everywhere I look in this house, this town, our hearts and minds, and in every ordinary and extraordinary thing this life brings. I refuse to feel guilty about living or feeling joy when it arises. At first I did feel guilty, but then I heard his voice in my head. “Monica, you and Josh deserve happiness. You deserve to live.” And I realized it would be a disservice to his memory not to feel joy or to have experiences...

because he can’t. 

Happy 34th Anniversary, Raymond. I love you. And, although I miss your physical presence every day, I feel you, I see you, I hear you. Still. 

Always. 

No memorial is complete without music, so this us for you, Raymond:

 https://youtu.be/AVNlbEdJUYY

Note: If you are viewing this on a computer, the photos below are all over the place. I cannot put them where I want them to go in an orderly way. My apologies!

Working at Farm & Fleet 1985

A card Ray bought for me, just because. 
He colored the hair and whiskers to look like him!

Ray swinging Josh on Easter 1990

Ray with his best friend, Tom
Ray with his dad
Ray on 11th Ave,
Ray with their family dog, Cocoa

 

                                             The Pickard Family in Detroit                                             

            

Ray and his dad loaded the moving van
for their move back to Kentucky

In KY 1990

The Pickard Family 2002

   

2016

Three generations 2016

2019 Detroit River Boat

  

Father and son hug

Jerry Seinfeld Event 2018

Detroit 2019

2019

Logodrama

For the past several months I have felt blocked. I feel like my passion for writing is gone. I still have a lot to say, but I am unsure how to say it. It feels like the collective consciousness has taken a severe hit, which I know is just the pendulum rearing back to spring forward again eventually, but it is draining, nevertheless. My last passion post, Female, was harsh, but also true. Sometimes I feel bad about writing it and consider deleting it. Other times I feel like it speaks volumes to help others with their own self-awareness. I just finished reading Viktor Frankl’s book, Man’s Search for Meaning. In it, he partially describes his practice of Logotherapy, “…the patient must sometimes hear things which are very disagreeable to hear.” That is how I feel about Female. I know that I have personally benefitted from critical things people have said to me about my actions and positions. It always stings, but once you get past the sting and look at it objectively you either see the errors you have made, or you realize this person is full of ego and is not really trying to help you. The key is objectivity. Do not take it personally even though it feels very personal. 

Another person I admire once said that his faith group made a practice of being evangelized by people of other faiths. He pointed out that you really learn a lot about the actions and beliefs of your group when others point out how your actions and beliefs make them feel. Sometimes you have to get crucified in order for it to sink in and change you. But, I’m no Saint. I did write that post in frustration and full of judgment. To me, that does not make it any less true. It is my perspective. That is the only vantage point from which I can see. I have been given no insight to how my view is wrong, or where their view has been misunderstood by me. One friend wrote to me after reading that post and told me that my post was extremely offensive to her. I can see how it would be and I knew that people would feel that way, regardless of my intentions. She shared some areas where we agree, and she privately reiterated her reasons for not sharing her negative views of our current government publicly. I get it. It does not help our collective consciousness to evolve out of this backward swing, but I get it. I do feel bad about some things I said about religion. I made it sound like it is all just brainwashing. I know that every religion has some of that and that every religion has as many ways of interpretation as there are people in the world. I have conservative and liberal friends who are catholic, as well as conservative and liberal friends who enjoy other religions and no religion. My truth is that the things I described in that post about religion I have seen with my own eyes. I have experienced some of it personally and have witnessed other things about it through friends. I did not make it up. It is a problem for society that we need to resolve, in my opinion.

Viktor Frankl taught about choices and how they impact our psychology both personally and collectively. The choice not to speak out will impact you, your immediate family, and society, whether you like it or not. Likewise, speaking out about injustices, wrong doings, and immoral behavior by people you support will help advance society and allow others who feel the same way to actually do something meaningful to solve society’s problems. People speak out about the immoral behavior of others, the people they don’t know, “those people,” women who have abortions or simply support a woman’s right to choose, women who dress a certain way and behave sexually a certain way, but political leaders who do despicable things by everyone’s standard, they enjoy their silence. That is wrong. It is just as wrong as the immoral actions of everyone else. The only way I can understand it is to see it as fear. It takes courage to speak Truth. Look what happened to Jesus! As I’ve said before, if we are not disciples of Jesus, were are simply followers, and He does not need more followers. He needs people willing to take action. 

I do not want to write about politics in the blog anymore. I never wanted to at all. Everywhere I look I see that politics and religion are the causes of our divisions and so I feel compelled to write about them. On the bright side, I see a few people who never spoke about politics before 2016 speaking passionately about it now. They tend to be more liberal, though, and so they are ignored by conservatives. That is why it is so important for conservatives to speak up about the disagreements they have with this administration. But I digress. I want this blog to be about people with disabilities and the people who love them. I want to impart what I have learned from my experiences with my son and from the things I have read that speak Truth. But lately I can’t do that without writing about politics. If an idea for a post comes in, it quickly vanishes. On the rare occasion it stays for a while, it gets blocked when I sit down to write. I am trying to get over this. Hopefully it will happen soon. Thank you for sticking with me through my veering off into the ditch of politics and for your continued support.

I have recently updated my Books I Love post, if you’re interested in new material to read. Oh, I also have been doing lessons with Richard Rohr. They are called, Another Way to See the Cross, and Another Way to See the Bible. Available at https://cac.org. There is also a Facebook page you can be admitted to after doing some of the lessons. It is truly inspiring to be part of such a contemplative group.

Take care and Happy Easter, Friends!

Check out my recommended reading post at the top of the menu. I hope this blog helps you to create a more peaceful life. Keep in touch with the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Write to me with your comments and questions at mindchange4all@gmail.com. I look forward to hearing from you.

Caregiver’s Honorary PhD

This goes for ALL caregivers!

If parents and caregivers of people with disabilities were to log study hours while navigating the various information and systems related to disability, we would all qualify for college degrees. Some of us might even qualify for several PhDs. That is not an exaggerated statement. I cannot even begin to count the hours I have spent learning new things and doing paperwork related to loving and caring for someone with a disability over the last 30 years. And to be honest, I’m not even close to understanding it all. I am still learning new things as time marches on and new challenges come along. Some of the things we learn must be relearned over and over again as the rules and regulations change. This is a major frustration for caregivers. There is so much we have to know and stay on top of. As parents, siblings, or caregivers you will relate very well to this post. But, if you are not a caregiver and you just want to develop more empathy for someone you know who is, buckle up! It may seem repetitive at times, but that’s only because it is. 

First, let me make it clear that we all – caregivers and people with disabilities – are grateful for everything we receive, whether it is information, knowledge, or benefits. We are grateful for the people who help us navigate it all, as well. At the same time, certain things are extremely stressful. So here goes!

It starts with learning about the disability: What is it and how will it affect life for the person and for the caregivers and family members? What is needed medically? Is it covered under our insurance? What will the co-pay and out of pocket expenses be? What is needed emotionally? What is needed physically? Are there devices or physical aids that can help? Are there grants available to help pay if insurance won’t pay? How do I apply for those grants? What are the rules for spending the money if we receive a grant? Are there medications? What are the side effects of those medications? How many times will we have to adjust or change the medication? Is there a diet that is best? Where can those strange foods be purchased? How can those foods be prepared? How much extra will this diet cost? How much extra time will this food take to prepare? Are there therapies to help with this disability? Which therapists are best? Should we leave all therapies up to the school district or get outside therapy, as well? What is the school district obligated by law to do? How do we ensure they do it? What is an IEP? How do we participate in writing the IEP? What should go into the IEP? How do we ensure it is followed? What can we do if it is not followed? Who can we turn to for help? How much will that cost? What is the ADA? What is IDEA? Can I use that to get what my child needs in school? (Absolutely!) How should I appropriately correspond with the school staff when there is a problem with the IEP or its implementation? What steps should I take if the school refuses to put something in the IEP that my child needs?

Are you exhausted by the questions yet? 

Imagine actually researching the answers and then doing what needs to be done. As you research, more questions evolve. Paper work will be involved. Lots and lots of paperwork! If I had a nickel for each time I wrote down my son’s name, address, phone number, social security number, his disability, his surgeries, his medications, date he was diagnosed, things he is unable to do for himself, as well as mine and my husband’s information, we would be rich! Phone calls, driving, meetings, and waiting in reception areas are involved with implementing just about everything we learn.

All of this comes after you have received your honorary degree in vocabulary words, acronyms, and initialisms related to the disability. What does tactile mean? What does proprioception mean? What is Occupational Therapy? What is sensory overload? What is stimming? What is echolalia? What is auditory processing? How does that relate, if at all, to hearing? These are just a few of the vocabulary words I had to learn for my son’s disability. I’m sure there are just as many, if not more, for other disabilities. If you’re like me, you’ll want to know why, how, and who – if anyone – is to blame for this disability. So, you’ll research that to the best of your ability and come up with even more questions about religion, causes, preventions, and yes, cures because your heart is in a perpetual ache while doing all of this for your loved one.

Then there is the social aspect of living in the world with people with disabilities: What response should I have to people who make rude comments about my son? How should I deal with family members who just don’t get it? What is the politically correct way to address someone with…? Our feelings get hurt A LOT. We get insulted on purpose and sometimes accidentally. We cry in the shower, in our cars, in public restrooms, and sometime right out in the open because people can be mean and judgy.

In the interest of time and space, I will now ditch the questions and give you a brief overview of other non-degreed courses we must take. You can rely on your own questions as they pop into your head. Trust me, you will have many! 

Low-income families who have children with disabilities under 18 years of age typically apply for SSI, which results in > paperwork (both gathering to submit and filling out new ones) > meeting with an SS employee > waiting for a response to your application. All families, no matter their income level will or should apply for SSI for their disabled child when he or she turns 18 > paperwork (both gathering to submit and filling out new ones) > learning the rules about family income and expenses > how much rent to charge your disabled child > grappling with that mentally because it may seem ridiculous > learning the difference between charging them “rent” and having them pay their “fair share” and how each will affect yourtax filing each year > understanding the future paperwork you will need to submit to the government each year for the SSI they will receive > understanding the asset levels they are allowed while receiving SSI > understanding your role as their representative payee > navigating the banking system to set up an account for them and you as rep-payee > once they have had it for a few years and you are comfortable, you will get some sort of letter that will send you into a panic because it threatens to stop the SSI if you do not comply with their request by a certain date > more gathering of paperwork > phone calls and/or visits to the office with paperwork in hand, waiting to be seen, only to be told they don’t need to see it > eventual relief that they get to keep their SSI (hopefully!).

Now, if your under-age child receives SSI, when they turn 18, they will lose their SSI in order to transition to SSI for disabled adults. Is this transition smooth? No. Why? No one knows. Should it be smooth? Yes. This results in a panic letter arriving in the mail (these letters usually come on Friday when you can’t really do anything about it) > phone calls > possible paperwork > possible meetings, which may require a few hours of waiting to get to speak with someone > possible delay in paying your household bills. As a parent or caregiver, you will not be informed of this need for a transition until it is too late, and they are at risk or actually thrown off of SSI. Why? No one knows. Maybe because the system is slow to catch things.

Keeping your disabled child on your insurance after age 26 (thank God it is the law now!) > paperwork (both gathering to submit and filling out new ones) > possible doctor appointment for your loved one so the doctor can attest to their disability > understanding if the insurance or the Medicaid is primary and remembering that. LOL! Then you get to deal with the insurance company because they refuse to pay for something they say they will pay for, or they say they are not sure who is primary and who is secondary, but they are the ones who told you in the first place that they are primary. UGH!

In addition to applying for SSI at 18, families should also apply for Medicaid for the disabled person even if the family can afford to pay their medical bills after insurance. Why? Medicaid Waivers, of course! They will need Medicaid in order to get a Medicaid Waiver. You have question about Medicaid Waivers now, don’t you?! 

There are many Medicaid Waivers that could apply to people with disabilities. They all involve figuring out which one is right for your loved one > research > paperwork (both gathering to submit and filling out new ones) > which agencies need to be involved > more vocabulary words and initialisms to learn > new rules to learn to keep the funding > redetermination every couple of years because, apparently, a life-long disability could miraculously go away > inevitably, although you sent the requested paperwork via whatever means they wanted, they did not receive it or they received it but failed to check it into their system, so another panic letter will arrive from Medicaid with deadlines to meet because if you don’t, your loved one may lose their Medicaid and get kicked off their waiver and then you are really screwed > more paperwork > phone calls > possible meetings with extraordinary waiting room time, and if you speak to a different person they will have a whole new set of requirements for you because they understand the system differently than the last guy or gal you spoke to, but maybe you’ll get lucky and this one simplifies the process and puts you at ease (praying hands emoji!).

When the parent of a disabled person dies or retires, the disabled person gets put on Medicare, regardless of their age > More rules > more vocabulary > more paperwork > more phone calls > more panic letters arriving in the mail threatening to cut off their Medicaid if the spend down is not reached, which means they will lose their waiver funding, which means the family schedule will get completely thrown off and/or the disabled person will have no supports for their social life or their job. Even though this is stressful and completely unnecessary if things would have been explained properly at the start of all this, you would rather spend an extraordinary amount of time in a waiting room and energy to resolve it to avoid your loved one from losing their benefits. 

Your career? Ha! If you have one, that’s another stress on you. Or, maybe you love your career and it helps you deal with everything else. If so, I am happy for you. Well done!

As caregivers, it is likely we are, by now, on depression and/or anxiety medication from managing all this with a perpetual heartache. 

But wait! Some rules that you finally learned have changed… or acronyms, or initialisms, or you discovered that some initialisms have more than one meaning because they are represented by more than one agency, so now you get to try to keep those in your mind as you read endless pieces of information.

And did you apply for food stamps for your loved one when you applied for Medicaid? How’s that $12.00 a month helping out with your food bills? If they were awarded it, that is. They are not supposed to consider yourincome, but somehow, they figure out a way to get it in there for some households, but not others. Maybe this, too, depends on the employee you are dealing with when you apply. Who knows? There are social stigmas attached to these benefits that you must navigate in your mind. You know that your loved one cannot survive without these supports, or at the very least that your entire family’s quality of life would tank if they did not receive these benefits, but the world seems insensitive to that reality. Your friends and family are constantly calling for the government to cut the vital services without a thought to how it will affect your loved one and you. 

Have you studied up on financial planning for the care of your loved one after you pass away? Wills, Trusts, Special Needs Trusts, revocable vs irrevocable, clauses, and wording it just right so they won’t lose their government benefits, naming a new guardian and someone to oversee the trust… And what if you don’t have anyone you can trust? Should you rely on a lawyer or a bank to oversee everything? Can you trust a total stranger who doesn’t even know your family? 

How about guardianship of your loved one: have you applied for that? How does that differ from Power of Attorney? > Guardianship of the person or the estate or both > paperwork > meetings with lawyers > costs involved > going before the judge > annual reports to the judge > another deadline. 

Where will your loved one live when you pass away? > CILA or family member > types of CILAs vs other housing > funding sources > rules and regulations for funding and for CILA > ensuring your loved one’s security > happiness of your loved one > ensuring appropriate freedoms for your loved one. If you do have family to step in when you’re gone, you feel like crap asking them because you know it’s a lot to ask.

Many of these questions you get to navigate while you yourself are aging, developing health issues, and/or slowing down. Fun times! 

If your loved one is lucky enough to be able to work there are rules you will need to know about income levels, job coaching, discrimination laws, etc. I do not have an honorary degree in this area because Josh is not able to do conventional work. We have WorkerBee, though! And, that means I am managing his volunteer jo to keep him busy, like so many other caregivers do for their loved one.

Did I mention politics? No? Well then, let me just say this: Politics is the foundation that supports this entire building. Every single thing I wrote about is dependent on politicians who may or may not understand, give two thoughts to, or even care about our plight. So, when a parent or caregiver of a person with disabilities talks about politics, understand that we know this area well. We contact our representatives, even with all the other stuff we have to do because our loved ones depend on us to stay informed and involved and to help keep this building standing.

There is help from various agencies and I, along with other caregivers, have a never-ending supply of gratitude for them! Support groups, both online and in person, nonprofit organizations, information sites, family support, politicians who fight for us, everyone and anyone who helps us out in the biggest and smallest ways, all mean a great deal to our community. There are people who have made paid careers out of helping others in many areas of these systems and people who volunteer their time and energy to answering our questions and giving us support because they have been through it already. We are immensely grateful for those people! 

Thank you, if you are a helper in any way. 

We are also extremely grateful for all of the benefits from our government and from other organizations. We do not take anything for granted. We are grateful for the help we receive from all of the government employees who help us apply for these benefits and iron out all of the issues from the panic letters we get. Sometimes we do not treat them well. We are stressed when we contact them, but that is no excuse to treat another human being badly. I apologize for that on behalf of every caregiver. 

Caregivers, I’m sure I probably left something out. Feel free to contact me at mindchange4all@gmail.com with information you want to see added here and I will happily oblige. Take care of yourself, Friend! 

Check out my recommended reading post at the top of the menu. I hope this blog helps you to create a more peaceful life. Keep in touch with the following methods: Use the links under the archive menu to subscribe or follow by e-mail. Help me get this message out by sharing it with your friends on social media! If you enjoyed it and were helped by it, they will, too! Write to me with your comments and questions at mindchange4all@gmail.com. I look forward to hearing from you.