Tag: family

The Words We Use

~ Kai Raines ~ Leave a comment

I’ve discovered that I have a pet peeve…well, let me be honest, I have several. Not wringing out the sponge and leaving it all cold and wet in the sink. Not cleaning the counters after you cook. And anything left sticky…I especially hate sticky. My mom left sticky little fingerprints everywhere. I guess because she was always eating Cheetos and Milk Duds. Her favorites. And who tells a 91-year-old that those aren’t healthy choices? Not me.

Anyway, I’ve noticed a new one…I hate when people refer to someone who has died as “losing” them or saying they “passed away.” I think we’re afraid to use the word “dead” because it seems harsher and more final. Death is pretty final. My daughter died January 2nd and I did not lose her. She’s not misplaced. I’m not suddenly going to find her somewhere unexpected…although I really wish I were.

I misplaced my son once, briefly. Really, he misplaced himself. Having more children than you have hands is not a great idea…one can always get away…and it was always him. He was three and we (myself and three young children) were at a clothing store. He slipped himself into a circular rack of clothes and disappeared. I was frantic for the two minutes before I found him…his sisters may have found him. They had a better handle on him than I did. Anyway, that’s losing someone. My daughter is not lost. She’s dead. Fuck.

Passing away sounds like she was a wisp of vapor that evaporated. Or a mirage all along and now the mirage has passed away. She didn’t dissolve or fade away like fog in the early mornings here in Florida. She died. She was very sick and she died. And that’s final. As much as I hate it, she isn’t coming back…I do believe in reincarnation, or at least that the energy that makes us who we are, our spirit or soul, continues to exist in some form so…someday who knows. I have to use the words died, dead, death because it’s the only way I can make what happened real. The only way I can bring myself to understand that she isn’t here anymore. She’s dead. That’s an awful word to use in reference to your child. It’s so fucking horrible. It rips my heart out…but it’s true.

I do have a point here besides the death of my daughter. I’ve written about chronic pain and specifically about problems with my elbow replacement. Over the last 10 years, it’s been revised several times because of loosening. Then it was removed once because of an infection, and again when I broke my arm and dislocated my elbow, which destroyed it. That was less than three years ago. For the past year I have known it was coming loose again. I can feel it. I’ve told the doctor repeatedly and he assured me that it was fine because the x-rays looked good. Even though I had a lot of swelling, grinding, and pain in my elbow.

A few weeks ago, the swelling in my arm ballooned. My left upper arm and elbow are twice as big as my right arm. It’s alarmingly swollen…enough that when I went to talk to my PCP, she was shocked. She raised concern that it might be infected…blah, blah, blah. The x-rays finally show what I have been feeling and the doctor sees it. The hardware is loose so, tomorrow I am having my elbow replacement removed. Because of this long history nothing is going in my arm to replace it. My arm will no longer have an elbow. So, my arm will no longer function. I am going to lose the use of my left arm. There’s no point trying again because they have all failed. In total I think it’s been 6. That’s enough. The doctor and I are both done.

In preparation I have been trying to do everything with only my right arm. Know what I’ve discovered? That’s fucking hard. Seems like everything takes two hands…although sometimes I can use my head as a substitute. Reminds me of when I found out I had celiac disease and discovered gluten was in everything. It’s not so much anymore, but in 1998 it was the staple du jour. I never realized how much I used my left arm…until now. I’ve started to lose the function in my left arm already…hence the use of my head…like when I’m trying to put towels on the shelf in the linen closet.

My wife, who always has the helpful suggestions, told me that I’ll be able to turn in a circle fast and slap people…because my arm is just going to hang loose by my side. I guess I’ll have to start slapping people. Seriously, this is all overwhelming. I’ve been finding adaptive devices to make having one arm easier and to allow me to do things independently…like drive, cut vegetables, dress myself, wash my right arm. Things I take for granted…or I did.

So, I’ve been thinking about saying that I’m “losing” my arm. My arm won’t be lost. It won’t be misplaced. It will still be attached to my body. My arm will be dead. My arm will die tomorrow. I feel like I’m awaiting an execution…for my arm. Although my arm is dying as I write this. The only way I get it to work now is by using my shoulder…and my head.

Rituals are important. They mark important events in our lives. We have funerals to mark the death of someone who mattered to us. I’ve thought about having a funeral for my arm…like they did for Buddy’s arm in Fried Green Tomatoes. His arm was cut off by a train, so they buried it with a headstone and a eulogy. After that the expectation was for him to get on with life and not feel sorry for himself. I don’t feel sorry for myself. Of course, I still have my arm. Is a funeral appropriate for a limb that’s still attached but has no function…I don’t know. Do I want a funeral for my arm…not sure. Will I refer to my arm as dead…don’t know that either.

I am learning to speak the truth to myself. To be honest in my observations and to call something what it is…not dance around it to avoid reality. I have also been thinking a lot about my belief, that I end my blogs with, that in the end all that matters is how we love people. Right now, I might be the person who needs my love the most. I think I’ll forget about the funeral for my arm for now and focus on some self love…lots of it. With a good dose of patience and gentleness. In the end it does matter how we love people, including ourselves. It will make a difference in how we make it to the end…whatever that may be.

Profits Over People…Swedish Medical Center Denver, This One’s For You

~ Kai Raines ~ Leave a comment

 My daughter died 108 days ago at HCA HealthOne Swedish Medical Center in Denver. She had been hospitalized for close to a month. The time we spent at the hospital was horrible. How could it not be? We were confronting the most traumatic loss my family had ever faced. My daughter was dying…at the age of forty. This loss was unbearable, and yet there was no choice but to bear it.

Aside from Jessica dying, there were other issues during her stay that were deeply distressing for myself and my family. First, the hospital lost her phone. That may seem insignificant, but when your daughter is at the end of her life and the hospital is cavalierly disregarding your loss, it’s infuriating. Staff assured us, more than once, they would replace the phone…because they lost it. They never did. My daughter, Amy, contacted the hospital administration and the board of directors about the situation to no end.

Now you may think that because my daughter died it doesn’t matter. But you’d be wrong. The phone was hers. Hers while she was alive and hers to decide who she wanted to have it after her death. It was Jessica’s property and when she died it became ours, along with all her other belongings. You know who it never belonged to? Swedish Medical Center. How dare they decide that they didn’t need to rectify their mistake…that they didn’t need to honor their promise and, my daughter, by replacing her phone. In the weeks before I went to Denver, to be with my family, I lost my ability to talk to my daughter because her phone was gone. She wouldn’t answer the hospital phone. And here’s the thing, she didn’t need to because she had a fucking phone. My family struggled to notify her friends after her death because we didn’t have her phone with the contact information.

Second, it was hard to get honest, straightforward information from the hospital doctor. My daughter, Amy, noticed on a medical form, handed to us during a room change, that her sister had cirrhosis of the liver. That is end stage liver failure…but no one told us. She had been in Swedish Medical Center four weeks earlier and there was no mention of cirrhosis to her or in her discharge paperwork. That’s a huge oversight…perhaps negligent.

Every day I asked the doctor if my daughter was going to recover. And all I got was a list of the problems caused by the liver failure, the additional tests she needed, and the new medications they were giving her. It wasn’t until I backed the doctor into a corner, figuratively, that she said…and I quote, “I don’t think she’ll die today.” My daughter died the next day.

Even after that response, the doctor wanted to put a tube down my daughter’s nose and throat to give her another medication. And because Jessica was uncomfortable and couldn’t lay still, they would need to restrain her. That was my breaking point. I burst into tears and told them absolutely not. They were not going to tie her to the fucking bed. I’m no doctor but it was clear she was dying. Why put her through that…what was the point?

I told the doctor I wanted my daughter to be comfortable and without pain. No more tests. No more trying to give her medication by mouth because she couldn’t swallow anything…which they should have known. Why did they not know that? Why did I have to tell them? And why did I have to demand pain medication at all? The doctor kept telling me that Jessica wasn’t in pain. I insisted on pain medication the previous day because she had been crying and in obvious pain. I told her that I knew if she was in pain…I’m her mom. She needed IV pain medicine.

After that conversation, the doctor offered us the option of hospice services. She said they could be at home or in the hospital, but her recommendation was in-hospital. We agreed. After the decision was made a hospice worker came, introduced herself and explained what was going to happen and how their services worked. The next morning, January 2nd, a hospital social worker came to my daughter’s room to talk to us…. Remember, my daughter is dying in the bed beside me…the social worker told us that Jessica’s death was “not imminent enough” and so they were discharging her. WTF! So, after finding out that imminent meant within three days, I asked where she was supposed to go? The social worker said she needed to go home with one of us or to a skilled nursing facility…and with that speech bubble still hanging in the air…she added that a facility would be expensive, Medicaid would not pay for it, and we could not afford it. Nice.

I was sobbing and my daughter, Amy, was trying to talk to them. I’m gonna shorten this story for you…we insisted they get the doctor because the social worker said the doctor made the determination that my daughter’s death was not imminent enough. When the doctor came in, I reminded her that she told me the day before that she didn’t think Jessica would die that day…but clearly, she was dying. In what world does that not indicate an imminent death. I spent the previous night at the hospital because I wasn’t sure she’d make it until the morning. I did not want her to be alone. All anyone had to do was look at my daughter to see her death would be very soon. We argued with the doctor until she agreed that Jessica’s death was imminent and she stayed at the hospital. It didn’t seem to matter that we had nowhere we could have taken her. My daughter died that night, January 2nd. About eleven hours after they wanted to discharge her.

The issue for me is that the hospital took the most horrific time in our lives and made it so much worse. I was barely holding on as it was but then I had to convince the doctor my daughter was going to die right away. I had to argue for my daughter’s death…to persuade the doctor that my daughter would die at any moment…what mom should have to do that. No one should ever be in that position. Ever. And now I am reliving those moments, conversation by conversation, in an attempt to elicit integrity and compassion from this hospital.

The hospital’s response to all of this was to blame hospice. To say that they have no control over a hospice agency’s decision to accept a patient for in-hospital care…basically they threw them under the bus. Although factually true, it is not relevant here. Hospice accepted my daughter for in-hospital services at once and without question. Aside from the nurses, who were compassionate and kind, the only positive experience we had at Swedish was working with hospice…and they are an independent agency. Not part of Swedish at all. They still contact me regularly to see if I need anything. I have heard nothing from Swedish Medical Center. No condolences. No acknowledgment. Nothing.

If you are reading this and you live in the Denver metro area, please share this post with everyone you know. At the end of my blogs, I always say that in the end all that matters is how we love people. I love my daughter so much…and I love my family. Sometimes loving means not letting something go. Continuing to fight for someone who can’t fight for herself. I will not allow my daughter to be disregarded or treated as though she was insignificant. Her life had meaning…she was an important person. She was so important to us, and she should be important to Swedish Medical Center. After all they are in the business of caring for people…or so they say.

Swedish administrators, it is time to get your shit together and do a better job. Do more. Care more. Be better. From my perspective you can only go up from here. Start by replacing my daughter’s phone. Then learn how to deal appropriately with families who are facing the imminent death of a child…or a sister…an aunt…a niece…a parent. Forget your profits for a moment and consider what is best for the patient…for the family…how you can help make an unbearable situation more bearable. That’s your fucking job. Do better so no one else has to go through what we did. Losing my daughter was the most horrific experience of my life. I did not need you to make it worse…and you did…infinitely worse. You should be ashamed. People come to you for help. Be helpful. Have integrity. Be better.

.

A Final Resting Place

~ Kai Raines ~ Leave a comment

My kids used to tell me that when I died, they were going to divide my ashes and keep them on their mantles…forever…like in the movie “Meet the Parents” where the Fockers kept grandma’s ashes for years adorning their fireplace…until the cat used them as a litter box anyway. And I told them, no. It’s possible I threatened to haunt them if they did. I didn’t want them to hang on to my ashes…or to me. They needed to spread my ashes in the ocean and be done with it. Let go of them and me, I guess. I was adamant. Then my daughter died.

It’s a horrible day when you go and retrieve your daughter’s ashes. Not a day I’d wish on anyone. I picked them up at A Better Place. I selected their cremation services because of the name…because I wanted to believe it was true. It is equally horrible to arrange your daughter’s cremation. They put her remains in a black box, not the urn we bought. I was flying home with her ashes and needed to be able to pass through airport security. Only specific urns are TSA approved. I did some research and even though it should have been safe I was not taking any chances. Given my emotional state, I knew I’d end up permanently banned from flying if anyone tried to touch my daughter’s ashes.

I had never really thought about the amount of planning that goes into deciding what to do with someone’s remains. Before I flew home, my daughter, son, son-in-law, and I got together to divide Jessica’s ashes. My daughter, Amy, had two urns, a small one to keep and a larger one to scatter at a place that was special to her sister. My ex-husband also had a small urn to keep with him. My son, daughter, grandkids, and I all had necklaces to hold ashes that we could keep with us all the time. The rest of her remains would come home with me to Florida. My plan was to spread the ashes in New York, where my sister and nephews live. My parent’s ashes are there in a grove of trees in my nephew’s backyard. I thought Jessica would like to be with them. It was a plan the family agreed on. Then I got home.

Once I came home the reality of my daughter’s death hit me again…pummeled me is more like it. I realized that her ashes are all I have. They are the only physical remains of my daughter…and they are all I have left. And I cannot let them go. I won’t. Some people might think it’s morose or that seeing the urn everyday will make me sad, but I am already sad. Nothing needs to remind me of my daughter because I think about her all the time. I can look like I’m focused on something, but she is always on my mind.

I’ve been reading books about dealing with the death of your child. They have described the loss of a child as the ultimate or worst loss, and I would have to agree. The authors talked about finding the “final resting place” for your child. Those words had not occurred to me. They made it sound like Jessica’s spirit would not find peace until she was in this designated “final resting place.” I thought New York would be this mystical place. I had a small urn of ashes that I would keep, and I’d spread the rest with my parents. That was until the reality of parting with them sank in…actually letting them go or having her “rest” away from me. That’s not gonna work for me. And I don’t believe it would work for Jessica either. I think she’d be pleased that I can’t let them go…that I can’t let go of any more of her. I think sometimes she doubted how important she was to me. I think she knows now. So, the small urn…and its small…will go to New York and she will stay here…with me…on my bookcase. And I will be with her every day.

All of this pondering of my daughter’s ashes got me thinking, why wouldn’t her final resting place be with me…I’m her mom. Why would it not be with her dad, her sister, her brother, her niece and nephew. All the people she loved so deeply. Shouldn’t she be with her family? Shouldn’t she rest with us? Because no one loves her as much as we do. No one misses her as much as we do. No one feels her absence more than we do.

I have amended my instructions to my son and daughter. When I die, which I hope will be many, many years from now, they can do what they need to with my ashes. I understand now that those decisions will have everything to do with what they need and what will comfort them. Turns out I don’t need to dictate or control that decision. Just like now, I only want what’s best for them…in the end, that will be best for me too.

I know now, more than ever, that the only thing that matters is how we love people. That really is all we have. Jessica, we love you so much. Rest now embraced by your family. Rest knowing how important you were to each of us. You rest well my beautiful girl…I’ll be right here.

Mother Mary Came to Me

~ Kai Raines ~ 1 Comment

I have been struggling to write anything since my daughter died. Maybe because I can’t focus long enough. Or because I don’t have the words…I’m not sure I have any words. And maybe it’s fear. Fear that if I’m vulnerable with my writing, I’ll cause myself, or others, even more pain…and I feel so raw already. It’s like I have a gaping chest wound that is continually ripped open…by a picture, a memory, a thought…anything really. Sometimes my tears are gentle…quiet. Sometimes not so much. I watched a video of Jessica and couldn’t stop crying. I’m not sure I’ve ever felt this depth of grief before…grief isn’t a big enough word for how I feel. Anguish. I think that’s it…” a deep, intense state beyond simple sadness, involving helplessness, despair, and sometimes, agony, severe distress.” Those words come close to describing how I feel. When I think about Jessica being gone and not seeing her anymore, I want to scream and rip my hair out. I can’t cry hard enough to get the pain out. I want to wail and scream and break shit. It feels too big…too powerful…too consuming.

When my kids were babies, and when the grandkids were babies, I’d hold them when they were sleeping. There are few things as wonderful as holding a sleeping baby. I’d recline with them and they’d lay on my chest. We’d stay that way for however long they napped…both of us content…not needing anything. I treasure those memories. The day before Jessica died, I was with her in the hospital. She was agitated and restless. She couldn’t get comfortable. I stood by her bed talking to her and rubbing her back, but she just couldn’t be still. Then suddenly she sat up, tucked her hands next to her cheek and laid her head on my chest, and went to sleep…just like when she was a baby. It was a precious moment that I won’t ever forget. She didn’t rest long but I was grateful that for a few moments she was content…she was content with me. She needed her mom and I was there. She let me be there for her.

I was with my daughter when she died. She had been sleeping and was not opening her eyes anymore. So, I was surprised when she looked at me. We held each others gaze and I told her how much I loved her. Then her breathing changed dramatically and she died a couple minutes later. I think she opened her eyes to say goodbye…and opened her eyes so we could say “I love you.”

As I was trying to sleep that night, I found myself thinking “Mary would know how I feel.” Mary as in mother of Jesus Mary. Now if you’re surprised by that, I bet you aren’t as surprised as I was. I do not generally find myself thinking about Mary. The image that came to mind was the Pieta in St. Peter’s Basilica in Vatican City. Mary cradles the lifeless body of Jesus on her lap…I’m sure much like when he was a baby.

I was drawn to Mary because she was a mom and her baby died too. She knew what it felt like to see your child lifeless in front of you. She understood the urge to scream and yell and demand that they breathe again. The hope that what you see is not real. Because how can she be gone? And then the torture of leaving them because there is nothing more you can do…and you aren’t allowed in the morgue even if it’s just because you don’t want her to be alone.

Those were the worst moments of my life. I felt desperate to have my little girl back. Maybe in my hour of darkness, Mary came to stand beside me…to help me bear the unbearable. Maybe to be a witness because she understood…and I was desperate for someone who knew how I felt. And her words of wisdom? Perhaps that I wasn’t alone. And the anguish, the sadness, the despair…let it be.

My Beautiful Girl

~ Kai Raines ~ Leave a comment

Wednesday was the funeral for my daughter Jessica. I wrote this letter o her and my grandson, Javon, heroically read it for me. It was impossible for me….

I don’t know how to write a eulogy for my daughter, so I thought I’d write her a letter.

Jessica, my beautiful girl,

No one ever prepared me for what to say if you died. Maybe because there aren’t any words…except all the bad ones…the F bomb being my favorite, as you were well aware. I can’t stop thinking that this is not how life is supposed to go. This was not supposed to happen. You were not allowed to die before me.

I’ve been thinking about a Brandie Carlile song called “You Without Me.” Before Christmas I was thinking about you and Amy and Ben and watching you all grow up and separate from me and become your own people…amazing and beautiful people I must say. Brandie Carlile wrote that song about watching that happen with her daughter who is now 10. She says,

“Was your smile always crooked? Was the freedom ever free?

Do you kick the rocks between your feet, after all this time with me?

You can listen to your own records now, decide what you believe

You can pray on stars and skip the gods like stones across the sea

But I would know you anywhere, I lost myself in you

Heavy are the hands that you are free to slip right through

Do what you have to do

There you are, my morning star, I wondered when you’d show

Give me just a quick thumbs up, a wink before you go

I never heard that voice before today, I remind myself to breathe

There you are, it’s just you without me.”

That’s how it should be Jessica…you without me…30 years from now. Not me without you. I’m not sure I know how to be me without you. I did lose myself in you, but I also found myself…as a mom…your mom.

I know that life was a struggle for you. I wanted so much to do or say something to help you realize how wonderful you are. You were so smart and so kind and so funny. Some of my favorite times were with you, Amy, and Ben all of us laughing until we cried.

My sweet girl, I know that this life was too hard and too scary for you. I’m glad you’re without fear now. We had some challenging times when you were growing up. You were still apologizing to me for your teenage antics throughout your 30’s. But I wouldn’t trade one moment of being your mom.

When you were born you didn’t cry like most babies. When the doctor handed you to me, you just opened those beautiful blue eyes and looked at me. No crying or fussing…just looking, as if to say, “it’s me mom….I’m finally here.”

Right before you died, you opened your eyes and looked at me. You hadn’t opened you eyes for over a day. You looked at me and held my gaze as if to say, “it’s me mom…I have to go now.” Your breathing immediately slowed and minutes later you were gone. I had the chance to tell you how much I love you. I told you there was nothing to be afraid of now and that it was okay for you to go…even though there was nothing okay about it. I stroked your cheek, kissed your forehead, and told you that I have loved every moment of being your mom. And then you were gone.

I was with you for your first breath and your last. Thank you for that.

I believe that you are in a peaceful place now. A place without fear. A place where Roro, Foddy, and Grandma Jojo were waiting for you…and where they will care for you now. And I know they will…I gave my parents a long lecture, with a lot of instructions, the day you died.

Now we try to rebuild a life without you in it. Me without you. All of us without you. I’m not sure how. I will miss you forever. I will be grateful for you forever. And I will love you forever…my beautiful girl. Rest well.

A New Plan

~ Kai Raines ~ Leave a comment

You know when you sit down to write your blog or finish it, and you have a plan…a perfectly good plan. Maybe even an interesting plan (you hope)…and instead of following the plan, which is what you’ve focused on, your writing takes you here….

When I was 29, I was in the middle of a divorce. My husband at the time had informed me he was gay…well, that makes it sound like we sat down and talked about it. He informed me by having affairs. Although he said a one-night stand was not an affair. I’m not sure the label really mattered. We were in a marriage counselors office, and the pastor of our church was there with us. I don’t remember why he was there, but he was a friend. The counselor began the session by asking a question, “Can we all agree that at this point (fill in name here) has not acted on his feelings?” I said yes right away. I can’t remember if my husband said yes or nothing. When she got to the pastor, he said he couldn’t answer the question. This is where you’d inject the Debbie Downer music. Seriously, where does a counseling session go after that. I don’t remember anything anyone said the rest of the hour. On the way home he confirmed that he had in fact had an affair…or one night stand or whatever the fuck you want to call it. He didn’t volunteer the information, but he did answer me honestly when asked.

Our separation began that day. I told him he had to go until he decided what he wanted. He didn’t think he wanted to be married anymore…at least not to me. Now if you’re thinking, “They’re both gay?” That’s true we are. I’ve written about it before. Look at my blog post “Gay by Design” and you’ll get your questions answered…or email me. I won’t go back through the whole story now because that’s not where I’m headed…at least I don’t think so. I’ve been surprised once already today.

So, we separated. He, thinking this was a short-term problem, started sleeping on the couch at his office. It was a family run business, and his mom was his boss…and a lovely person. I don’t know why he thought this would be a quick reconciliation, but he did. I was at home with a 4-year-old, a 2-year-old, and a 4-month-old infant. So, I was bored. Lol…that would be hysterical, right!?

All of this was taking place in Colorado. I graduated from the University of Colorado, got married, and then made my home there. I always said Chicago was a good place to be from…and I was. I went to junior high and high school in Naperville, the fastest growing suburb of Chicago at the time. Before my wedding, my parents moved back to St. Louis, where my sister and I were born and where my parents grew up. Now the scene is set….

So, I was talking to my mom one day…on the phone of course…and I was stressed. Have you ever noticed how all your children need you NOW as soon as you pick up the phone? It’s a law of nature. I don’t remember what we were talking about, but my mom wanted me to move back to St. Louis and live with them. She wanted me to move “home.” I told her that Colorado was my home now and that I wasn’t going to move. I would not take my kids away from their dad…plus it seemed like a bad idea, although I know she was offering me help. I said no and she said, “That’s okay. You won’t make it out there by yourself and you’ll end up back here.” Excuse me, what the fuck did you just say? That was what I thought but I said nothing. That moment is seared into my memory, so I feel confident that this was her exact quote. Need I say this was not the best time of my life.

I was stunned. I didn’t say anything. I didn’t know what to say. In my mind I wondered if she wanted me to fail. And why would she? I got off the phone fast. I was devastated. Who says that to their daughter? Their daughter going through a divorce with 3 children under the age of 5? Why would she say that to me? My self-confidence was already at an all time low. And this wasn’t just about me. I had 3 little precious humans looking to me for security and answers to why daddy didn’t want to be married anymore. They depended on me to make everything okay for them even after their world was turned upside down. If I was okay, they knew they’d be okay. I was about as far from okay as you can be but my 3 little babies depending on me was more than enough motivation. Children take their cues from us, so I needed to fake it until I really was okay again.

So, we survived and lived happily ever after…yay. That’s not the point of the story. I’ve been reading about trauma and core language…as in what your core beliefs are that you communicate to yourself. Turns out I have a core message rumbling around in this head telling me that I won’t make it. I’ll never make it…I will always fail. At what specifically? Everything. The things that make you “successful.” In my family, a career and money were the main factors in success. A job people would ohhhh and ahhhh at and enough money to set yourself apart from others…providing a feeling of superiority. Being a “have” and not a “have not.”

Divorced with 3 babies…not a “have” for sure. A degree in psychology…but I “don’t know anything about psychology.” A master’s degree in counseling…but that wasn’t from a “real” school. A child protection worker…let someone else do that. Law degree…check. (I got one). A lawyer representing abused and neglected children…was I afraid to make money? I never even mentioned my last master’s degree. No point. Developed and ran a mindfulness program for young children…a what? So many fails. So many “not enoughs” … not even close.

I’ve heard the definition of sin as “missing the mark.” I think that may be the definition of my life according to my parents, not the sin part, but always missing the mark. Never quite got it right. Never making it…according to them.

But here’s the thing, my thoughts, my actions, my beliefs, my feelings are mine. All mine. They are my choices. No one else makes those choices for me. So, when I hear negative messages about myself, I have a choice…believe it or ignore it. Now when I was younger, it didn’t feel like much of a choice. Kids, even adults, believe what their parents tell them…because parents are supposed to know. Right? It took a long time to learn that just because they said something and they believed it didn’t make it true. It makes it their opinion. That’s all. Certainly, they’re entitled to their opinion…I wish they had not shared them so freely.

But now, now I’m a grown ass women (as my daughter loves to say) and I make my own choices. I decide what I believe about me…not my parents, not anyone else. Even though my parents are dead I still hear their voices in my head. Repeating messages of the past. The question now is how I respond to those voices, theirs and others. Everyone has an opinion. If I go along blindly with whatever the opinion of the day is about me then I abdicate my responsibility to myself. That would be failing…not making it…not succeeding. My success is not something I owe anyone, except myself. And I am the only one who knows what success looks like for me.

We become what we believe…what we think. With our thoughts we create the world. That’s why individuals can experience the same event and each interpret it differently and respond to it differently. We see differently because we think differently. We see differently because the framework through which we see the world and make sense of it is unique to each of us. We all have a story of what is real or not real, true or false, accepted or rejected. Everything we see, hear, feel, or experience goes through that story…the narration of our life…according to us.

I can be taught to believe certain things. I can be told all sorts of stories. And I can experience a lifetime of challenges or successes. Ultimately, the only thing that’s real and true for me is what I tell myself. What I believe is what I make real. That is what is true for me. I am the only person with the power to change the story that I have created about my life. Only me. I created it. I can change it. It is a tremendous act of self love to tell myself the truth…to tell yourself the truth. It requires awareness on my part. To know myself well enough to know what’s true. And the wisdom to know that what’s true today may not be true tomorrow…because I am always changing. You are always changing.

I want to be more…more kind, compassionate, loving, understanding, flexible, open, present, aware. I want that for me. I want that for you. Because in the end all that matters is how we love people. Love yourself enough to know yourself. Love other people enough for them to feel safe in sharing who they are. And believe them when they show you. Whatever the question is, love is the answer…always.

The Confusion of Grief or The Grief of Confusion

~ Kai Raines ~ Leave a comment

So, my parents ashes have been sitting on the bookcase in my living room since their deaths. It’s been a while. It became normal seeing them up there and I didn’t think about it too much. Last October we planned a boat ride, here in Florida, to spread their ashes in the gulf. Apparently, our plan was not acceptable, and my mom caused a hurricane. Her timing was perfect. Scary even. She shut down the state of Florida. We got the message.

Frightened by the events of last year, we developed a new plan and successfully implemented it last week…with no natural disasters…people of the world are relieved. My wife and I drove to New York to visit my sister, brother-in-law, nephews, their wives and children. We enjoyed the drive mostly because it was nine hours less than a drive to Colorado and we got to drive through lots of states I had never been in. Turns out there are many states to go through between Florida and New York…the obvious ones, Georgia, South Carolina, North Carolina, Virginia…and then there were a bunch more, Maryland, Pennsylvania, DC, Delaware, and New Jersey. There are so many states crammed into a ridiculously small area.

My sister planned a beautiful memorial for my parents, including food, their favorite drinks, a tent to stay out of the sun and great people. She really did it all and I’m so grateful to her. My nephew created an amazing slide show along with a playlist of my parent’s favorite songs. Everything was perfect.

Listening to everyone’s stories all week, I felt like an outsider looking in…separate from the people who belonged, who really knew my parents. So, I watched and listened. I tried to figure out what I was feeling. Sad? Guilty? Relieved? Numb? I thought numb was the right one. I felt so confused. Aha…that’s the one. Confused. Confused not by how I felt but by how I didn’t feel. I didn’t seem to feel what everyone else felt…a deep sense of loss. I didn’t cry. I was just quietly befuddled.

My nephews and brother-in-law spoke beautifully and emotionally, about what my parents meant to them. They said they received unconditional love and support from my parents…really? My nephew said that in my parent’s eyes he could do no wrong…seriously? That was not my experience of my parents at all. I experienced love based on performance and my performance was never good enough. And in their eyes, I did everything wrong. They rarely seemed happy with me. I felt confused. Perplexed and defective somehow.

It turns out my parents, especially my mom, could love, just not me. Other people spoke about their unending love. That confused me…and hurt. Why couldn’t my parents love me? What was so wrong about me? Still, after all this time, I asked myself, why does it matter? Why am I stuck in this place…this place of believing I’m not enough. When I was in my 20’s, I told my mom that I felt like she was disappointed in me and in who I was as a person. Her response was, “You don’t need my approval.” I said everyone wants their mom to be proud of them. She didn’t say anything else. I was devastated by that conversation. I had prepared for months to talk to her and share my feelings…which took a shitload of courage to do. For most people, it may not be an act of bravery to have an honest discussion with your mother but for me it was. It was huge…HUGE!

She confirmed all my fears by her words and then her silence. She destroyed me. More accurately, I let her destroy me. I risked emotionally opening to her, and she used my vulnerability as a weapon against me. I sat in my bathroom and sobbed for hours after our conversation. Too bad I didn’t learn from that…or maybe it’s good I didn’t learn. I didn’t learn to harden and build walls to defend myself. I believe that what doesn’t kill us can make us kinder if we allow it to. I am committed to softening my edges, not reinforcing them. My mom once told me it would be hard to be mean to me because I’m so kind. That was nice…for a minute. That’s all it took for her to tell me she hated my fucking guts, that I wasn’t a mother because I got divorced and gave my kids away, that I was the bad seed…it went on and on. I mistakenly reminded her of her comment on my kindness…she said nothing. The weight of that silence was hard to bear.

After the memorial I talked with my cousin about her feelings when her dad died. She had a complicated relationship with him like I did with my mom. I guess I was checking to see if I was crazy for feeling confused. I wasn’t. I brought my sister into the conversation and told her what we were talking about. I said we were discussing not being the favorite child and she agreed and said I wasn’t…she was. I told her about feeling like nothing I did was ever good enough. She said that it was true, nothing I did was ever good enough. So, there’s that. I appreciated her honesty. It was helpful to know what I felt and perceived were real…not just something I made up in my head. The affirmation was helpful, and painful. It might have been difficult for my sister too…to confirm something that she knows is painful for me. But it helped. It’s always good to find out you aren’t crazy.

So, I’m confused. Duh huh? I don’t know how to feel about my parents and their deaths. I know what I think I should feel. I should be sad and grieving. I should feel what everyone else feels. But really, I think it’s more important for me to be able to feel my own feelings and to feel the words that I say. Seems obvious, and it may be, but it ain’t easy. It’s scary to admit confusion about your parent’s death. To admit you don’t feel as sad or miss them like everyone else does.

So, is it confusion about grief or is grief causing my confusion? I’m not sure it matters to anyone, except me. I’m confused by how strongly other people feel the loss of my parents…the loss of their love and the loss of the wonderful relationship they had with them. I don’t feel like that at all…and that’s confusing. I feel like I should and that I’m a bad daughter because I don’t. I feel guilty for not feeling the right things…not grieving the right way. Whatever the fuck that means. But here’s the thing, I grieved for my parents for 12 years. For12 years we had no contact, before they lived with me in Florida. I grieved the loss of them from my life, and I grieved for what I wanted from my parents that I never got. I grieved that nothing I did was good enough, not the schools I attended, the degrees I earned, or the jobs I held. None of that was good enough because I wasn’t good enough. I craved unconditional love, understanding, kindness, acceptance…and their pride in me. Just because I’m me. I got none of that.

So, maybe it’s not so confusing. Maybe I’m done grieving. Maybe not. Living with my parents stirred up a ton of shit. There might be more to grieve or just more to let go of. You can’t let go of something unless you know what you lost. Maybe that’s where I am, coming to terms with what I lost. Most of what I lost happened years ago. Although now I’ve lost any possibility of things turning out differently….a better outcome. Maybe a happily ever after. The memorial brought up some new feelings of loss…of being defective somehow. Still, they were my parents, and I longed for them to love me, and maybe even more, to like me. Really like me. But I don’t think they did.

None of that changes my foundational belief that in the end all that matters is how we love people. I really tried with my mom and dad. I did my best. My best may not have been good enough, but I tried. Rest in peace mom and dad…I did love you. I hope you knew.

Missed Opportunities

~ Kai Raines ~ Leave a comment

I was talking to my sister the other day, and I don’t remember why, but she asked me if I remembered a book we had as kids that was about a girl who wanted to be a ballet dancer. She wasn’t able to be a dancer because she had some sort of health problem. My sister didn’t remember the health problem…I didn’t remember the book. That is until she described a page where the girl was kneeling on the coach and looking out the window as her friends rode their bikes. But she couldn’t join them. I remember that one image. I remember that she was sad.

My sister wondered why my mom would have picked that book for us. The 60’s was not exactly the age of disability awareness and inclusion. I don’t think she was a champion of disability rights. Or that she was particularly sensitive to the needs of the disabled. She used to refer to my dad as a “cripple” …sooo…. However, my mom had a heart problem from complications of rheumatic fever as a child. She had a damaged valve and because of that she was limited on her physical activity as a child.

So, I wonder, could she have given us the book as a window into her life as a child? I don’t have any idea…and I never will. If she was sharing herself with us, she needed to provide more information. I’m guessing for my sister and I it was an interesting book, and we had varying degrees of sadness for the little girl. My sister would have been the one to remember the ending, but she doesn’t. It may remain a mystery…unless I track down the book. Look out google.

My mom loved sports. She liked football and college basketball, but she LOVED baseball. She loved the St. Louis Cardinals. We lived in Chicago when I was young, and I remember going to Cardinals v Cubs double headers as a kid. My mom was an encyclopedia of baseball facts. She remembered games, players, coaches, managers, owners, playoffs, trades, botched calls, and specific plays. She was a wealth of knowledge. I remember Ozzie Smith because he was my favorite Cardinal. And hot dogs were the best at a baseball game…kind of grosses me out now but I was young. For my mom’s 90th birthday we took her to a Cardinals game against the Rays, here in Florida, and she had a hot dog…mustard, relish, and onion. She was happy.

My mom would have loved to play sports, but she couldn’t because of her heart. When she was young there were not many options for girls. Schools didn’t have competitive teams. She might have been happy to play baseball on the playground with the boys, but she couldn’t. She must have been so frustrated. I also love sports. My opportunities to play were nothing like today but I played basketball, softball, and swam competitively. I can’t imagine what I would have done without those sports. I did play football with the boys in the backyard, and I had a basketball hoop that I was at all the time. I wanted to be Oscar Robertson. There were no women players for me to look up to at the time. I would have given anything to play in the WNBA.

Maybe my mom identified with that little girl in the book. Always being the one on the inside looking out. Wanting so much but never having the chance. Maybe that’s why she bought it for us…because she was that girl.

When I graduated from law school my mom told me she always wanted to be a lawyer. What?! I never knew that. I don’t remember her ever talking about a career she wanted. I figured she wanted to be a mom…and to devote herself to her amazing daughters. Right?! She told me she always wanted kids. My dad said if it wasn’t for him, they would not have had any children. I don’t know what was true, and I never will.

I worry that my mom felt like her life was filled with missed opportunities. Or that it was filled with second choices…or third choices. I guess I don’t need to worry now but it’s sad. It’s sad to think of all the frustration she must have felt. It’s sad to be one of the daughters who may not have been her first choice. And it’s sad she didn’t fight for herself. I know opportunities were not the same but there were schooling options for her, especially as we got older. She had choices. They may have been limited but she had them. I wonder why she didn’t advocate for herself. Maybe she did and I just don’t know. She was pretty vocal about what she felt she deserved and didn’t get. Or in what ways other people didn’t give her what she wanted, so I feel like I would have heard.

I wonder what it would be like to feel like your life was a missed opportunity because there was so much you wanted but it was all just out of reach…and you believed there was nothing you could do about it. I don’t really know. I have limitations in my life due to disability and chronic pain, but I don’t feel like I’ve missed out on life. I’ve been married (more than once), had children, gone to school, earned advanced degrees, experienced multiple careers, and met many wonderful people. There are things I cannot do but those are not the things that define my life. My life is full of experiences and opportunities and lots of people I really love. There may be things I would have done differently, but I consider my life well lived…well living…I’m not dead yet.

I’m sad for my mom today. Sad to think she didn’t have the chance to reach her full potential. Or to become fully who she was meant to be. And sad because she missed the chance to feel proud of herself. Proud that she had done something that really meant a lot to her, because being a wife and mom were not those things. I think in the end those missed opportunities weighed on her…on her self-esteem.

All that makes me eager to follow my dreams, even when they seem like a fairy tale. To take chances and try new things. To bring awareness to all the areas of my life. To live intentionally. To make my choices where I have them and not be content to let life happen to me. Seize the day and all that shit. And to love freely, fully, generously, and always. Because in the end all that matters is how we love people. The lovers, the dreamers, and me.

Off The Edge

~ Kai Raines ~ Leave a comment

It took me a long time to recognize this low-level anxiety that lives inside me. I feel like I am always on edge. Always expecting the next bad thing…the next person to hurt me or leave me without explanation. The next person to blow up at me, blame me, or take their anger out on me. The next crisis I need to be ready for. Being mentally and physically on edge contributes to me being on edge emotionally. All the time. It is exhausting.

I have been trying to create a way to mourn the loss of my mother. I am not sure how to do that when I feel angry at her. I’m hurt that she was so mean to me. I don’t know if I miss her because I haven’t been able to get past the other feelings. I feel guilty because I am relieved not to deal with her explosive outburst anymore. I don’t miss her hanging up on me multiple times a day. The years I spent away from her I wondered why she didn’t try to work things out with me or love me enough to fight for me. The years I lived with her in Florida, I understood that she hated me. That’s what she told me. That’s how she acted. She didn’t fight for me because she didn’t want me.

Now she’s gone and I am not sure what to do with all of that. I need to find a place where I can accept the situation as it was and accept her as she was…flaws, bitterness, cruelty and all. She wasn’t one thing. She wasn’t just mean. She wasn’t just angry. She wasn’t just cruel. She could be kind. She could be generous. She could be loving.

I am not one thing either. I am not just a person on edge. I am not just someone with anxiety. I can be kind. I can be generous. I can be loving. I’m a mix of all those things and more. Just like her. Sara Bareilles has a song called, “She Used to Be Mine” and she talks about this…sings about it. This song could be about me…or my mom. I’m not perfect but I try. I’m hard on myself and struggle with asking for help. I’m messy and I’m kind. I’m all those things smooshed together to make me.

The song goes on to talk about things coming into our lives that we don’t ask for and they shape us into who we are today…even if it’s not what we asked for…or not who we expected to be. I want to be willing to take risks. To be hurt but not destroyed. I want to be tough enough that when I get bruised, I can use that to grow stronger and more sure of myself. And when I feel stuck, for example now, I can rekindle a fire inside of myself to keep moving forward toward the person I am and the person I am meant to be.

I have been trying to create a ritual for myself to let her go. To let the experiences I had with her go. And to let the things she said to me go. I have felt heavy under the weight of her thoughts and feelings about me. I recently wrote about changing my name from Karen to Kai. Needing to move away from Karen because that’s the name she yelled at me and the name of the person she hated. This week I decided to change my name legally. The new name felt like a game of make believe. And I’m not playing a game. I’m creating the path to reclaim myself as myself…not who she said I was. I’m not trying to disown her or my family. I am taking steps to own myself and my identity. That’s mine to create, not hers to impose.

I had not planned to change my name legally. I surprised myself. I filled out the paperwork and I filed the petition. It’ll take a few months for the change to be ordered. I may have to attend a hearing to tell a Judge why I want to change my name. I’m not sure it’s really anyone else’s business why…of course that will not be my answer if the Judge asks. An attitude will get me thrown in jail…this is Florida after all. There was a ton of paperwork to fill out and get notarized before I could file the petition. I guess they’re making sure I’m not changing my name because I am on the run from law enforcement. I’m not. I promise.

I was not sure how I would feel after I filed the paperwork. I felt relief. I felt like a giant chain that weighed me down, with other people’s opinions fell away. I was standing up for myself. I felt like I was claiming my own identity without the input of my mom. This is me regardless of what she thinks or what she might have said. She would have been angry about the change. She would have taken it as a rejection of her. It is not about her at all. It is about me…claiming my own power and not allowing anyone else to tell me who I am or how I should be myself. The change is because of me not her. This is who I am. This is who I continue to become.

The acceptance I want to find for myself, I want to find for her too. I do not think my mom’s life turned out how she imagined, and she was bitter. I had no control over that. I did not ruin her life, regardless of what she thought. I loved my mom. We had a challenging relationship. In the end I was working to change it…make it better. That didn’t happen but it doesn’t mean I didn’t love her or that I didn’t try.

Loving is hard. I try my best, but I am not always great at it. I hope my love can be a solid ground for someone else. I always say that in the end all that matters is how we love people. So regardless of what happens I move forward and remind myself that I did not give up on love today.

Do not give up on love today. Never give up on love. Love always wins.

Still Broken

~ Kai Raines ~ Leave a comment

Well, it has been a week…not even a week yet. Fuck. My wife asked me how I was doing on Wednesday or Thursday, and I said I felt overwhelmed. She asked me why, as in specific reasons, not questioning my emotions. I said, “I don’t know…the end of our democracy.” And that silenced us both.

Since then, my fears have just multiplied. You may ask, “Why?” I will lay it out for you:

*Putin, seeing the election results, said that a “new world order is forming.”

*The plan for mass deportation of undocumented migrants in this country regardless of circumstances or the devastating impact on the economy.

*A federal judge striking down Biden’s program for undocumented spouses, as illegal. The program designed to keep families together.

*The undoing of the constitutional right to reproductive healthcare, including the right to an abortion.

*The blatant plan to reverse marriage equality.

*Texts sent to Black Americans telling them they have “been selected to pick cotton” at a nearby plantation. These texts went out to adults, as well as, college and high school students. And these texts were not just in Georgia, Alabama, Louisiana the states considered the deep south…were I guess people expect such racism, seriously? They were sent in New York, California, Pennsylvania, Ohio, Wisconsin, and Michigan. And that is not the entire list. What is happening?

*The rise of fear, anger, and hate, and a growing attitude of us vs them. The use of those emotions as weapons to pit us against each other…even when what we are hearing is not true.

*The supreme court granting the president almost complete unchecked power. The branches of government designed to act as the checks and balances of presidential power no longer function that way.

*The President Elect already preparing pardons for the January 6Th rioters who attempted to overthrow our government and disrupt the peaceful transition of power. People died that day. 174 police officers were injured. One was killed.

*Elon Musk promised a cabinet position where he will cut the federal budget by 3 trillion dollars. And they have told us that people will suffer.

*RFK Jr. will oversee the Department of Health…and specifically women’s health. There is nothing that makes less sense than a man appointed to make the rules or guidelines for women’s health. He is an unapologetic anti-vaccination and conspiracy theorist…which could lead to the return of illnesses that previously were eradicated by vaccines.

*Referring to anyone who disagrees with the administration as the “enemy within” and the threat of using the armed forces against citizens of this country.

*And the last thing I am going to mention (and I could go on), the President Elect plans to destroy the Department of Justice and fire all career prosecutors, to remake the justice system in his image and use it against his enemies…that would be anyone who disagrees with him.

I feel like I am living in The Hunger Games…only this is no game. I love movies, but I do not want to live in them. They are fantasy and not real…except when the leader of our country wants to make it real. The elite having all the privilege, access, and opportunity and everyone else existing to meet their needs and keep them happy. And to entertain them…fooling themselves into thinking that the game you are entering is a privilege rather than an atrocity. But in the end, it took 3 books, Katniss Everdeen, the girl on fire, prevails…but a lot of shit goes down before that can happen.

Back in 2020 I wrote a blog called, “Broken.” At the time I was feeling devastated because of Covid and the tremendous loss of life and the murder of George Floyd. I am sharing the link here (http://karenraines.com/2020/06/03/broken/) because I am still broken. We are broken. Our country is broken. It is easy now to feel like everything is out of our control and there is nothing we can do, but that is not true. This week I joined the ACLU and signed up to volunteer. It’s a small step but it’s a step. We all must make ourselves keep moving forward.

Here’s the thing, I always write about love. Love as a guiding principle in my life. The need for love in our treatment of other people. Seeing people who may not be the same as us through a lens of love. Love conquers hate. Love is bigger than any person’s bigotry. Love produces more love. When we act with love for ourselves, our communities, our country, our world, our actions become compassionate, filled with kindness, and a desire to connect, not separate. We come to care for one another and want the best for each other…regardless of the color of your skin, what pronouns you use, who you love, where you’re from, or what language you speak. We see and share our common humanity. In the end, what matters is how we love people. We have some serious work to do.

Love is powerful and healing. We need some healing…some big fucking healing. Is that going to happen right now? I hope so but I think we are in for a rough road ahead. While fear, anger, and hate are in the oval office love will appear to be losing…but it will not lose.

Love has been on my mind all week and I’ve been confused on how to proceed. I do not feel loving right now. I am scared and angry. So, I turned to some teachers to find comfort and direction. Buddha said, “In this world hate never yet dispelled hate. Only love dispels hate. This is the law, ancient and inexhaustible.” And St. Francis had a beautiful prayer that can help us move in a positive direction. “Make me an instrument of your peace, Where there is hatred, let me sow love; Where there is injury pardon; Where there is doubt, faith….that I may not so much seek to be consoled as to console; To be understood, as to understand; To be loved as to love.”

Now there are some marching orders. But I am not marching right now. I am staggering. We are staggering. I still feel a deep sense of shock and loss. We need to feel all the feelings and not rush ourselves to get over it. Take time. Time to care for yourself and those around you. Think about ways to get involved and stay involved. Imagine a world where equality is the norm, and everyone has the same opportunities. Imagine no racism, sexism, misogyny, homophobia, transphobia, elitism…all the isms and phobias eliminated. Picture that world. Create a picture in your mind or on a vision board. Look at in several times a day. Make it the first image of your morning and last image you see at night. Look at it and believe in the possibility…the possibility of real change. Let that image guide you to the next best step for you…for us. Remember, in the end all that matters is how we love people…especially when it’s hard. Love always wins. Let’s win together.