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.

Guess Who’s Coming to Dinner

~ Kai Raines ~ Leave a comment

So, I’m about to agree with Marjorie Taylor Greene, never thought I’d write that sentence…it’s time to look outside for flying pigs. I have never agreed with her about anything…until the release of the Epstein files became a fight. That should not be a fight. It should happen. The victims deserve that…at least that. I respect that she has a relationship with several of the victims and I respect that she broke with Trump on signing a petition for the release of the Epstein files. Broke with the president and the republican majority. Seems like such a no brainer. Release them. Duh. There needs to be accountability for trafficking and abusing young girls…whoever was involved. Regardless of party affiliation. It’s one of the most horrific examples of sexual crimes against young girls in this country…ever.

Regardless of our differences, I would never think it was okay to send death threats to her or her family. I saw a clip of her giving a speech and she talked about the death threats and her fears for herself and her family. She said she reached out to people in the Trump administration for help and got no response…except Kash Patel who said he was on it. She told the audience, “I don’t know what he’s on.” That got a good laugh. But the most disturbing thing was the president’s response…and she saved the text messages. He told her she deserved the death threats. And as if that wasn’t bad enough, and it was, the President of the United States told her that if her son were murdered it would be her fault. What the total fuck?!

My daughter died four months ago, and it is the worst and most painful thing I’ve ever experienced. I would not wish it on anyone. I could never wish for someone to lose their child…no one…ever. It is inconceivable to me that anyone would want someone’s child threatened and that you would tell a parent that if anything happened it was their own fault. That’s some cold-hearted bullshit. I’m not big on calling people evil but this really challenges my thinking on that.

Here’s the thing, this administration does a lot of claiming and proclaiming their so called “Christianity” …flaunting it even. But there’s something off there…a disconnect. Saint Catherine of Siena said that freedom isn’t free until it serves. Service. To serve, “perform duties or services for another person or organization.” Freedom isn’t free until it opens itself to a belief, a cause, or a vision beyond itself, according to Saint Catherine. Something beyond ourselves. It’s not all about me…or you. That attitude of service, thinking of others, is not prevalent in our current government…with all its gold adornments and vanity projects. I’m not sure it even exists.

Since the president thinks he’s Jesus, he should be more familiar with what Jesus taught…love, kindness, compassion, standing up to injustice, defending the defenseless, modeling equality, treating people with respect. It doesn’t matter what your personal beliefs are or whether you’re part of a religion or an atheist, those are basic values we should be able to agree on. Seems simple. Duh, right? And yet the current administration does not. How do I know? Just watch the news or listen to interviews, these men tell you themselves. For example, the president, speaking about his war with Iran, said he was going to obliterate their country. Or saying he doesn’t even think about the American people and their struggles right now. Or trying to pick a fight with the Pope. Seriously? People in the administration said the Pope should stay away from issues about theology…hmmm. I’m pretty sure issues of theology are his job. Or saying that the Pope is for Iran having nuclear weapons when the Pope has consistently spoken out against war and the use of nuclear weapons. I disagree with the Catholic Church on many things, but the church is clear on its opposition to war and nuclear weapons. I realize in the olden days that was not always the case…the Catholic Church has a past.

Jesus was not so different than other great teachers and religious leaders in what he taught. They all talked about the need to love. Love your neighbors. Love your enemies. Love children. Love all people. Period. Full stop. Fairly straightforward and clear.

What would that look like? I’m glad you asked. This is an example from the Bible. The story is in the Gospels of Matthew, Luke, and Thomas…A man was having a dinner, so he sent his servant around to his friend’s homes to invite them…seems like you’d do that before you prepare a huge meal, but whatever. One by one all his friends decline the invitation. They’re too busy or have other plans. So, the man sends his servant out again and tells him to bring back anyone he can find until his banquet hall is full. Anyone. That’s a big deal back then…or now. This is a person of means and some standing in the community. Probably in a position of power, and he opens his home to everyone. People did not do that. There were classes of people and the upper did not mix with the lower.

Imagine what that would look like now…the president, Jeff Bezos, or Mark Zuckerberg are having a party. They send a chauffeur around to pick up their friends, and they all turn down the offer. So, Mr. T, B, or Z send the chauffeur out again with instructions to pick up anyone they can find. Who would they find? Women, the unhoused, people suffering from poverty, people with mental illness, LGBTQ+ folks, the disabled, African Americans, Asian Americans, Pacific Islanders, people from the Latin X community, non English speakers, people from other countries, folks with substance abuse problems, gang members, people who have been in prison, people on parole or probation, the hopeless, the weary, Buddhists, Christians, Muslims, Hindus, atheists. This list is not all inclusive because there are so many possibilities…so many people. Hopefully, you get the idea.

When you include everyone, you find a lot of people who are not usually, or ever, on the list of acceptable guests. You get the real people from the real world. People with real lives and real struggles. That’s life. Real life. Not a bunch of white, male, billionaires pretending they have any clue what life is like for 99% of this country, or this world. I’m not sure those men give the 99% of us much, or any, thought at all. We are invisible to them…too far beneath them to care.

Richard Rohr, a Franciscan priest and author, says that we make a mistake when we try to be spiritual before we learn to be human. I think that’s a major problem in our country…not enough humans. We have plenty of people proclaiming their spirituality, or their connection to a god, but having zero humanity. Jesus modeled humanity. That’s why he told that story. To show us how to be human. It seems like it should come naturally to us, but it doesn’t. We like to exclude and favor, to rank and shun. We decide regularly who matters and who doesn’t. Who deserves our kindness or attention and who does not. Jesus lived his values. His words matched his life. Other great teachers modeled the same thing. They embodied the principles they followed. They lived what mattered to them. Lao Tzu, author of the Tao Te Ching, a foundational text of Taoism, said that a ruler leads not by acting important but by their speech and their steps…their actions. It’s a powerful thing when our words and actions align in our lives.

So, how do we become more human? What did Jesus model for humanity? It starts and ends with love. That may sound simplistic but imagine a world where everyone acted from love. Where every person, no matter their position, power, money…no matter what…the only motivation was love and the intention across the board was to show love in every word and action. Imagine all the people living life in peace. You can’t bomb someone you love. You can’t turn your back on the needs of people you love. You can’t live comfortably having everything when people you love have nothing. You can’t claim a spirituality, or a religion, or a God and watch your neighbor starve.

Love is a powerful force…it transforms the lover and the loved. And in the end, all that matters is how we love people. That’s the starting point for learning to be human. It’s the whole point. Loving is human. Loving is divine. It’s time to become the humans we claim to be. Love will win…but only if we do it. Actions speak louder than words. Love speaks the loudest. Let’s turn up the volume and manifest the power of love. Just imagine.

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.

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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.

When You’re Not Here Tomorrow

~ Kai Raines ~ Leave a comment

When you’re not here tomorrow

I’ll wake up early…before sunrise

And I’ll feel happy for a moment

I’ll forget for just a second

And in that instant the world will feel right

My heart will feel whole

Then I’ll remember you’re gone

And my heart will shatter…again

When you’re not here tomorrow

I’ll read while I have my tea

And I’ll try to write

I’ll miss you…and I’ll cry

My words will feel hollow

And I won’t know what to say

I’ll wonder what I have to offer the world

When mine is in a million little pieces

When you’re not here tomorrow

I’ll think about your brother and sister

I’ll worry…and I’ll cry

I’ll want to be here for them

But I doubt my abilities

I see them heart broken…and I want to fix it

I’ll be afraid

And wish I could keep them tethered to me

Because maybe if they’re always with me

I can protect them

I let you go…like a parent is supposed to

Trusted you in the world

Trusted the world with you

And the world took you from me

You died

I don’t want them to die

When you’re not here tomorrow

I’ll be expected to function

To be a productive human

I’ll just want to stay in bed

Pull the blankets over my head

Shut the world out…for a minute

One moment not to feel…to just forget

When you’re not here tomorrow

The world will continue to turn

People will talk and laugh

Make plans for the day…for the future

How can they do that…when you aren’t here

When you’re not here tomorrow

I’ll find myself wondering when you’ll be back

And I’ll choke on Never

I won’t be able to text you

And you won’t call to tell me stupid jokes

And remind me that’s what you do with your time now

Because you aren’t drinking…and I’ll believe you

I always believed you

When you’re not here tomorrow

I’ll feel guilty…and I’ll cry

Guilty I couldn’t make you stop drinking

Guilty I couldn’t save you

And I really wanted to

I’m your mom

I’m supposed to protect you

That’s my job

When you’re not here tomorrow

I’ll wake up and wonder what’s missing

Why I feel like I lost something

And I’ll remember I did…you

There’s a You shaped hole in my heart

In my life…and I’ll cry

Because for now it’s me without you

When you’re not here tomorrow

I’ll wake up to your pictures all around me

And I’ll smile…I miss you

I’ll take the heart out of my pocket

The heart with your ashes in it

The heart that is always in my pocket

The heart I kiss every time I hold it

I’ll tell you I love you

And I do…I always will

When you’re not here tomorrow

I’ll think about spreading your ashes

And realize I can’t

I can’t let you go

It’s too much to ask of me

When you’re not hear tomorrow

I’ll think of you when I hear a song you loved

I’ll smile when a movie makes me cry

And I know you would have too

I’ll chuckle because you cried at everything

That’s just one of the things I loved about you

Your sensitive and kind heart

And I’ll cry

When you’re not here tomorrow

The world will continue to turn

And I will have to figure out

How to turn with it

How to adjust

Or maybe the world could adjust to me

At some point I’ll move forward

For now, I can’t see how

But wherever I’m going

You will always be with with me

When you’re not here tomorrow 

I’ll miss you

I’ll think about what I’d give for one more day

One more moment to be with you

To see that smile

To watch you cracking up with laughter

To hear you say I love you mom

For the chance to say

I love you too…so much

When you’re not here tomorrow

I’ll remind myself I’m grateful I was there

I was with you for your last breath

Just like I was for the first

I’ll be grateful that you knew I was with you

I needed you to know

And I’ll remind myself that grieving is part of loving

The worst part…the heart shattering worst

But I will love you forever

Mary Did You Know

~ Kai Raines ~ Leave a comment

Finally pregnant after years of frustration

Bursting with joy

Filled with dreams of who my baby would be

Who they would become….

Mary did you know you’d be told that you were having a baby

Did you wonder about the baby you would give birth to

Who he would be

Or were you just in shock

Terrified at the circumstances of your pregnancy

Frightened of what the future might hold…for both of you

Mary did you know how to raise a child

I didn’t…maybe that’s why humans start as babies

So, we have a chance to learn as we go

Were you amazed when he was born

I was…she was so small…so perfect

It was so scary and so wonderful

Mary did you ever feel like a failure

Like you weren’t equipped to raise another human

Did you worry that you were just a child…raising a child

That you were learning to be a parent while you were parenting

Figuring it out as you went along

Mary did you know what adolescents are like

I didn’t…I thought I did

There’s no knowing until you have one

Did your baby yell at you

Tell you he hated you

Did he disobey and challenge you on everything

Did you realize how little control you have over your children as they grow up

Were you overwhelmed…I was

Were you scared of who he might become.

That he might harm himself by the choices he made

Mary did you know the sacrifices you’d be asked to make

Sleepless nights with an infant

Sleepless nights with an adolescent

Wondering if they’d make it home safe

Prayers thrown out as a security net

But there is no security net

Mary did you know you would watch your baby die…I didn’t know

Did you know he would be so young…she was so young

That you’d be there for his last breath…I was there for hers

Did you know your heart could shatter in an instant…a million little pieces

Like mine

Did you know that prayers wouldn’t matter

He was going to die…she was dying

I couldn’t stop it

With all my heart I wanted to stop it

Did you know you would wake up every morning

And for an instant forget he was dead…I forget

And then reality knocks me on my ass…again

Mary did you know it’s impossible to let them go

I can’t let her go

I want another day…another hour…one more minute

Did you know there are no words to describe the pain…the loss

I have no words…no adequate words

Did you feel like you would drown in your despair…seems possible

Did you see a way past the heartache

I have never felt so sad

Did you get over his death…move on with your life…I didn’t think so

I can’t get over her death

It is impossible to just move on

You didn’t either did you…I know

He was your son

She was my daughter

Did you want to scream when he was mentioned using the past tense

Me too…she’s still my daughter

Mary did you know your grief would be overwhelming

Too enormous for one person to bear

The worst moment of your life

The worst moment of mine.

Mary, if you had known it all

Would you still have said yes…me too

I wouldn’t trade one moment with her

Not one memory

Did you think about all his “firsts”

I did…her first smile, her first step, first laugh, first words

Mary did you know the world could fall apart in an instant…and bury you

Did you learn it can’t be pieced back together…not like it was

The bottom drops out…and there you are groundless

Did you know your child can be fine and then be dead…actually dead

Children don’t die before their parents…ours did

I didn’t know

Did you know that people go on with their lives

Like nothing happened.

How can they

When I don’t recognize the world now…not my world

And I can’t see my life without her

Mary did you know you’d have to rebuild your life…without him

Me without her

Did you know how his siblings would hurt…and that you can’t fix it for them…or yourself

This cannot be fixed

Did you fear life would never be okay again…I do

Did your world stop with his “lasts”

His last touch, last look, last words…his last breath

Her last breath

Did your world crumble when he died…she died

Mine did

Mary did you know…I didn’t either

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.

Fuck 2026

~ Kai Raines ~ Leave a comment

Fuck 2026

My oldest daughter, Jessica, is an alcoholic. She started drinking at 13. We’ve tried everything to get her to quit…to help her. She just couldn’t do it. I know she tried. I think she wanted to quit but living without drinking was unbearable for her. I don’t know why.

Over the years I started thinking that I was just waiting for the phone call to tell me she had died. I thought that meant I was prepared. Nope.Turns out I wasn’t the tiniest bit prepared when the call came that I needed to come to Colorado because she was really sick and in the hospital. Was not ready for that.

Because here’s the thing…children are not supposed to die before their parents. Not if they’re 40…not if they’re 100. 40 is a baby. 40 is my baby. 40 and 5 months.

I look at her, stroke her cheek. I tell her I love her and that she’s ok. There’s nothing to be afraid of. Then I realize that soon I won’t be able to look at her anymore. I won’t see her blue eyes or her smile. I won’t hear her tell a funny story…and she is so fucking funny. I won’t hear her laugh. All of that will be gone. She’ll be gone. What will the world be like without her in it? That’s something I never wanted to know. It feels unbearable.

I was with her when she was born…obviously. And now I’ll be with her when she dies. My baby is dying. That 9-pound 4 oz miracle is about to leave this world. And I’m supposed to let her go. How can I be expected to do that? Why would I even consider doing that? Because it’s best for her. Because I don’t want her to suffer. How can it be best for her to be gone…to leave her family and friends…to leave her dad…to leave me? I want to be the best thing for her…not death.

So, fuck 2026…at least for now. The year that began by shredding my heart into a bazillion pieces. It’s January 2nd. Although it’s true I wouldn’t trade a single moment I’ve shared with her…the joy, the laughter…even the struggles and the pain. All that makes up a life, hers, and mine. I feel so grateful I’m her mom. I’m not ready to be done. I’m not sure I can let go. She’s just a baby.

Love really is the answer to all the questions. I am seeing firsthand that in the end all that matters is how we love people. I love her so much.

 

 

Stand For Something

~ Kai Raines ~ Leave a comment

Lately I feel like all the news focuses on being against something, and against each other. Now I am against many things…like the war in Ukraine…Putin. The war in the Middle East. War in general. Terrorism in any form. Our country becoming an autocracy. Fascism. Dictators. Bombing boats because you “think” there might be drug smugglers on it. Tearing down the White House. Destroying our democracy. Trust me when I tell you I could go on and on…but I won’t.

It’s easy to be against things…especially right now. But that leads me to ask myself, what am I for? It seems like people don’t talk about that so much. Conversations are a back and forth of what someone has done and how you hate it and them…and they feel the same way about you. It is so easy to blame and argue and fight, but when do we step back, look at ourselves, and ask if we are just adding to the conflict. An ever-expanding list of things I’m against does nothing to create change or to build a bridge between people. It merely creates more distance…more animosity.

Maybe it’s easier to be against things. That way someone other than me is always to blame. If I am for something, I have to own it. There is a responsibility for me to act on what I’m for. To put action to my words…do something. Perhaps we can use the list of what we’re against to sift through and find what we’re actually for. What do we believe in…what do I believe in?

I am for democracy. I am for free speech…even when we don’t agree. The constitution. The right to vote. Equality. Diversity. I’m for a first-rate educational system…a public school system providing a quality education for everyone. I’m for a living wage. Financial assistance to help people struggling with housing or food insecurity, mental health issues, disability, unemployment, childcare…meeting the real needs of people. I’m for compassion and empathy…for putting myself in someone else’s shoes before I rush to judgement. Despite arguments to the contrary people do not get rich on government assistance…people barely survive. I am for surviving…for thriving…not just getting by. I’m for opportunities for everyone. For freedom of religion, including the freedom to not have one. I’m for a united country…for less red and blue and more purple. I’m for the truth and reality. I am for love and the power of love…to heal, to change, to transform. I’m for the golden rule…treating others how you want to be treated. I’m for respect. For listening. For hearing. I’m for equal opportunities for everyone in our country. I’m for happiness and joy. For living without fear. I’m for affordable healthcare that actually provides good healthcare. And affordable dental care. I’m for social security, Medicare, Medicaid, and programs that provide care for people who need it. I’m for the rights of the disabled. For access to mental health care and substance abuse treatment. I am for safety and security. For justice. I’m for affordable housing for everyone. I’m for the availability of nutritious food for everyone, especially children. For access to regular meals and eating until you’re full. For sharing with others because we care about them…whoever “them” is. I’m for the ability and opportunity for everyone to live the life they dream of…make all the money they want…and I’m for a sense of obligation to care for our neighbors. For an abundance mentality that understands there is plenty for everyone…and we can share out of our abundance. I am for abundance for everyone.

I know I could keep going but that’s enough for now. The point of that monster paragraph is to encourage you to spend some time thinking about what matters to you…what are you for? Find those things and be for them…be moved to care, to give, to share, practice kindness, compassion, empathy. Listen more and talk less. Seek understanding. I’m for seeking justice, loving mercy, and humility…being able to care about someone else more than myself. And I’m for love…always. Because in the end what matters is how we love people. I am definitely for that.