Endings, Beginnings and Thanks

Even though I already have another blog post that I’m editing, I’ve started writing this one because it just feels like something that needs to come first.

Mom is having her last radiation treatment today.

It feels monumental and I guess it is.

This is big and I don’t want to lessen its impact. I do that enough with other things and it’s habit I need to break. I do it with myself all the time. When someone tells me how strong I’ve been in taking care of mom while also dealing with my dad’s death, and all the emotion that came from that, my typical reaction is to shrug it off. But the truth is I am strong in spite of myself and this moment is big.

It’s been five and a half weeks of weekly treatments. It’s also the last of the big cancer treatments that mom will have to endure. From now on, she will take pills that will help to prevent a reoccurrence. Beyond that, I have no idea except that mom will finally be able to recuperate and we will both have to find our way back to whatever is left of our old lives. We’ll do as I said in a previous posting—find a new normal and slowly learn how to navigate that particular terrain.

In the meantime, I’m going to take some time off for me. I see a few days ahead of me vegging in front of the TV watching old movies or catching up on some of the doctor’s appointments that I’ve missed. Who knows? I’ll figure it out. Part of that process will of course include getting back to work. I’m lucky. My lead editor has been amazingly understanding throughout the course of this whole experience, and told me to take off whatever time I needed. He also told me that my job would be there when I was ready to get back to it. I know many caregivers don’t hear those words and are forced to make tough choices about whether to continue working or not. So yeah, I’m lucky and fully appreciate that things could have been much different.

Mom is lucky too. She’s not terminal. I’ve repeated this to myself at various times when she was sick much like the way a child wraps themselves in a comfortable blanket. So we’re both lucky, because many people don’t get to hear those words, I see some of them in the waiting room at the oncology center and it’s hard because this is such an arbitrary situation. None of us has any idea about the how or why of this situation. We’ve all heard about people who smoke cigarettes who never get sick and those who never smoked but managed to die from lung cancer.

The truth is that cancer is a senseless thing, and there are no easy answers as to why one person gets it while another one doesn’t, or why one person is terminal and another one isn’t.

It’s not fair, but few things in life are.

I hope that the doctors are right about mom not being terminal, and it’s going to take some time for me to relax into that possibility. I do know that I will never take any of this experience for granted. There’s no way that I can. First of all, I am not the same person I was at the beginning of all this. I have grown in ways that I haven’t even begun to fully take stock of. And I think I’m a better person than I was before. I started this journey in a fetal position and slowly learned how to stand up and walk. At first everything felt overwhelming and impossible, but now those impossibilities have become possibilities and what was overwhelming has become manageable.

Cancer also taught me how to put things in perspective.

Mom and I were talking about how things that used to upset us before don’t seem as important anymore. We’re both pretty feisty women at times, but we pick our battles now and that’s a good thing. I’m sure that others can tell similar stories about the changes they’ve seen in themselves and others as a result of a cancer diagnosis.

I think the most surprising thing is that it hasn’t all been bad or as bad as I expected it to be. There have been moments of sadness and fear, but there have also been moments of joy and happiness. Most of those moments of joy and happiness have occurred because of the wonderful support system of friends and medical personnel who have helped us to get through this. I hate to think how we would have made it without them.

There is so much I could say, but it’s getting late and I need to get to bed. Tomorrow is a big day after all, I want to be fully able to enjoy it.

I hope that everyone who reads this has a similar day someday. There are so many good people out there struggling with cancer, cancer treatments and caregiving, and I wish there was something I could do to help them. But I barely have enough energy to do what I have to for mom, and even with that I always feel like I’m not doing enough.

I started this blog as an outlet to help me process my feelings and try to find some positive aspects of this experience. But it’s like that old adage about dropping a pebble in a pond and having no idea how far the ripples flow. I’ve been happily humbled to find that both cancer patients and caregivers have read this blog and found some of my postings helpful. I want to thank each one of you who has commented here or written to me personally. You have no idea how much your words have meant to me and encouraged me to keep writing.

The truth is that cancer sucks, but cancer patients and their caregivers don’t.

Thank you for your support. I wish you the very best.

Posted in Cancer, Caregiving | Tagged , , , , , | 12 Comments

The Camaraderie of Caring and the Solidarity of the Sick

I truly believe that there is nothing worse than hearing someone you love has cancer, except perhaps hearing that you yourself have cancer. Who knows which is worse unless you are unfortunate to have both things occur.

I do know that hearing my mom had cancer hurt me more than learning that my father was dying. And it’s not simply because my relationship with my father was complicated. I’ve dealt with death and dying before. Besides, he had dementia and anyone who has had a family member with dementia knows that they come and go like ebbs and tides until they finally go and never come back.

I was prepared for my father’s death, well as prepared for death as you can be.

I don’t care what some people say, death is not a natural thing. If it were, we as the human race would have found some way to make it easy so that we could be as indifferent to it as we are a cloudy day. Besides Jesus wept when he heard that his friend Lazarus had died, so if there is any proof that death was not part of the original plan for us, then there it is. Jesus wept knowing he could Lazarus back. I’m sure all sorts of religious scholars have all sorts of reasoning about why this occurred, but to me it signifies that there is no easy way to let someone go, even if you had all the power in the universe, letting go hurts.

Hearing that my mom had cancer suddenly propelled me to my Lazarus moment, except that I am powerless. I cannot make cancer vanish with a word or a sweep of my hand. I can only wait, watch and hope that the doctors are right and the treatments are effective.

I am not alone in this of course. Every time I take my mom to an oncology appointment, I see the faces of my comrades in arms. Some are too weak or depressed to respond or smile back at me, but we are comrades nonetheless. We can recognize that in ourselves, even as we sit silently in the waiting room. Others are more jovial and welcoming. I don’t see how they stay that up-and-positive, even as I fight to be just like them.

There is the one o’clock man we see every day in the radiation waiting room. Mom has the 1:30 appointment. He just seems like the happiest guy. I don’t know his name, but I don’t need to. We have formed a bond of mutual caring that is beyond names. Once, he was having difficulty reaching his cubby to get his clothes. He had a bag of some sort that he had to wear as part of his cancer treatment and needed me to help him get his clothes of his cubby. Then there he was in his underwear and there I was, not even knowing his name and it was OK. This may seem like nothing to you, but I am childhood sexual abuse survivor, so it has a lot of significance to me. For a lot of my life I have been scared of all men because of what happened to me. I can’t tell you how many times I was abused or by how many men—because after a while it just seemed like every man or boy I came into contact with was out to get me. There were times during my childhood when I felt like I was wearing a sign because seriously it was my babysitter’s son, another babysitter’s border, boys at school, my pediatrician and then blurs of unnatural touch and tastes that finally culminate with my own father. So for me to be OK with helping a man in his underwear is huge to me. But see, we’re more than man and woman, abuse survivor and whatever kind of survivor he may be from whatever life experience he has now. We are cancer patient and caregiver and it’s OK.

This is what I’ve seen repeatedly throughout this experience. There is solidarity amongst those of us in the cancer and cancer caregiving community. We are fighting the same battle against cancer while struggling to build and maintain some type of normality to each of our situations. We see each other in those waiting rooms that we get to know each other on some level that is deeper than race, religion, personal history or anything else. We are as God sees us; human at the very core of our humanity, all members of the same family; dysfunctional, yet still somehow able to see beyond that dysfunction and all the things we allow to separate us from each other and simply be OK.

These are other people who have heard those same words and know what it’s like to feel slammed back and forth by info-dumps of information about side effects and probabilities, along with hours spent in waiting rooms during surgeries and treatments. Cancer has come into their lives as a defiant and unwelcome guest, just like it has come into yours. No one else can possibly know what it’s like unless they experience it themselves. So you find yourself becoming close to a bunch of strangers. You may have been an introvert all of your life, reserved or like me a survivor of one of life’s many hard knocks and suddenly there you are chatting with these folks as if they were long time friends. There is a shared respect and camaraderie that exists because you all have been or are going through hell or you are watching someone you love go through hell. We discuss the weather, treatments, we work on one of the puzzles that is always available to help pass the time or we watch TV. It doesn’t matter, because we’re sharing the same experience and we’re fighting and winning and in some cases losing, the toughest battle of our lives.

This is something profound that I have learned in the many months I have been a caregiver. I started this experience feeling very much alone. I had people in my life that weren’t understanding or caring about my situation and I had those who backed away. I do not feel alone at all now, and I know my mother doesn’t feel like that either.

We are part of a community that is there to help lift us up when we are down, laugh at jokes that only another cancer patient or caregiver would find funny, explain information to us that we’ve already heard fifty times or sit silently beside us when we are too weak to do anything else. We are not alone, and that is a powerful and wonderful thing to know, because it gives us hope and it gives us support, which we pass on one to the other in solidarity and strength.

Posted in Abuse, Cancer, Caregiving, Death, Dementia, Survival | Tagged , , , , | 6 Comments

A Measure of Understanding

My dad died last week. A week ago Sunday to be exact. I received the phone call at 2:45 am and then had the task of waking up my mother and telling her what had happened. I got through that and she and I decided to sit up for a while and talk. It was a quiet moment with layers of shock, sadness and relief combined. The phone call that I’d known was inevitable had come and gone, and I was relieved to no longer be waiting for it. Just the same, my dad was dead, and I was about to venture into unknown territory as far as my emotions were concerned. Then my cell phone rang again about fifteen minutes later. This time it was the mortician:

Me: Hello

Mr. G: Yes, I’m from the funeral home and I need to know the size of your father’s body so I can decide how to transport him.

Me: Uh.

Mr. G.: How tall was he?

Me: I’m sorry I can’t think right now, we just found out about my dad.

Mr. G. Yes I know, that’s why I’m calling. You have my sympathy.

Me. Thanks and yes, I realize that, anyway…I’ll say he was about average.

Mr. G. What were your plans for your father’s remains?

This is where my brain went on autopilot and I had to fight myself not to say, “Well he might make a nice coffee table.” I mean really, yes my relationship with my dad was problematic; to put it nicely, but even so, this was too much. Just the same, there was no time to react. My full concentration was on my mother beginning her radiation the following day. That’s right, dad dies on Sunday, mom starts radiation on Monday and me, I have no idea what I’m supposed to do or feel. Autopilot is not only a good thing, but it’s sometimes necessary.

The rest of Sunday was a blur.

Friends came over with gifts and food, some tried to be comforting and some didn’t know what to say and instead were either obnoxious or emotional. It was a blur then and it’s a blur now. Sunday came and went, Monday began with another call from the mortician. Papers needed to be signed before the day was over, but mom had to get her first dose of radiation and we had to go to the nursing home to retrieve my father’s belongings.

It all felt immense. A lifetime had begun and ended in the span of a day and I didn’t know where to place my emotions. I didn’t know what my emotions were. I had cried when I told my mother that dad had died. And I had cried again when I told her that I believed he had heard me when I told him that I loved him, and that it was OK for him to stop fighting and go to sleep, because I would take care of mom. And he had done it. He had relinquished his life and simply gone to sleep and I, as usual, was responsible for all the various responsibilities circling around me like horses on a merry-go-round, except this was very un-merry, and my emotions ranged from indifferent sadness to numb.

My whole energy was on my mother and helping her get through losing my dad and into radiation. There was nothing else. The most I could do for dad was get the papers signed so that his body could be donated to the local medical college per his wishes and then write his obituary. Mom was going to need me for a million things and I had to save my energies for her. But I knew how things were with her, so I had to be careful.

It was just like that when my grandmother died when I was kid. I took the full brunt of things then too. Mom had a full-blown breakdown back then, all the while dad was in rehab or jail, I forget which, he bounced back and forth between the two a couple of times. I didn’t cry for two years after my grandmother died. Mom did all the crying for both of us and then some. I held everything back until I almost had a breakdown myself. I wonder how many ten or eleven-year-olds have breakdowns, not many I’m guessing, but what do I know?

Now it’s a week later, and I’m struggling to write this. It’s been an odd week. Mom is getting through her radiation. I tried to go back to my regular job of editing medical articles and I wasn’t ready, and then on top of it all Roger Ebert, the noted film critic, read this blog and recommended it to his followers.

That could be a blog post in itself. Mr. Ebert has been a hero of mine since I began watching him with Gene Siskel when I was in high school. He is not the sort to recommend things lightly or that he doesn’t value in some way. So for him to say he liked what he found here means more to me than I can say. I thanked him a great deal, in fact I think if I were to thank him again he may have me blocked as a stalker.

Then there are my writing friends, some have been supportive in lieu of my news, some have been distant and some have suggested that I somehow use Mr. Ebert’s recommendation to promote myself and get my “15 minutes of fame.”

That will not be happening. And perhaps I’m a fool for taking this stance, but it would hardly be the first time I could be called a fool. First off, I think the idea of gaining fame because of a tweet or Facebook announcement is ridiculous. True, I got some more traffic to my blog, but that doesn’t mean I’m suddenly an Internet sensation. Secondly, and most importantly, Roger Ebert is facing his own struggle with cancer and cancer recovery. I can’t say I know what he’s going through, but I know enough about what cancer patients often have to endure to have a measure of understanding of his situation. And it’s because of this that it would just feel completely wrong to do anything to attempt to glean any sort of fame from this.

What Roger Ebert did for me was a generous, thoughtful act. He saw something in my blog that he felt worthy or that touched him, who knows? After the week I had, it felt like a blessing and that’s really at the core of what this blog is about; there are blessings in the midst of sadness.

Currently my life is definitely an odd mix of sadness and blessings, but really I think that’s how it is for many of us. I am going to do my best to focus on the blessings. I can’t do anything about dad. He is gone and he’s left a trail of emotional and physical wounds for me to continue to deal with. I loved him in spite of it all and I miss the good father he would sometimes allow himself to be. Mom has finished the second week of her radiation treatment and it’s going well. And me, I’m OK in spite of it all. I’m not sleeping well, and I have moments where a happy moment that I spent with my dad floods back to me. Death is like everything else I’ve ever dealt with, you get through it day-by-day. There really is nothing else to do and there really is no other choice. We can fight that truth, but it will remain as it is. One day at a time, that was the credo my father repeated when he started AA and finally found sobriety. It’s my credo too now.

My dad is at the medical college and I hope they’re treating his corpse with more respect than he treated me. Weird thought I know, but during college my art school shared the building with the pre-med school. We always knew when it was cadaver day because the smell of formaldehyde would waft up through the vents. Now my dad is one of those cadavers and I have to make myself stop thinking about it. I also had more wrangling with the mortician to deal with including him sending me the wrong bill and haggling with me over the price of my dad’s obit. Yeah a measure of understanding would have been nice from him, but I got it from an unexpected place and I feel blessed.

P.S. I may require an additional measure of understanding with regard to typos. Since my father’s death I’ve been making them all over the place, and then missing them during edits. Hopefully this nonsense passes too.

Posted in Abuse, Cancer, Caregiving, Death, Dementia, Survival | Tagged , , , | 10 Comments

A New Poem

This poem doesn’t seem to be about cancer or caregiving, but for many years I have helped my mother take care of my father. It’s been difficult because the past was always been there whether or not I wanted it to be. Just the same I did my best to be a good daughter to him and in a strange way-even without ever apologizing for the past-I felt a sense of healing.

Lingering Bruise (Villanelle)

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Times of Joy, Times of Sorrow

 

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“It was the best of times, it was the worst of times.” So begins Charles Dickens great work, “A Tale of Two Cities.” Those words perfectly describe my current situation.

My mother’s health has greatly improved over the past few weeks and we seem to have finally gotten to the point where things are looking up. It’s been a long haul, as anyone knows who has been a caregiver or a patient undergoing chemotherapy. The symptoms can be horrific and frightening and there is nothing you do, but experience them if you are a patient, or helplessly watch, if you are a caregiver.

Neither position is easy and it wears on every aspect of your life in ways that you’d never expect. I began this blog to help me get through this experience because I simply could no longer go on carrying so much inside me. Release is good. It is also therapeutic.

Just a few weeks ago, my mother was so anemic that she could barely stand up, let alone walk through out house without assistance. Now she is not only able to do that, but has begun getting up in the morning to make her breakfast without any help from me at all. These may seem like small things to some, but they are monumental to us. Depression is very much a part of chemotherapy treatment for both patient and caregiver. My mother had pretty much given up at various points and it was hard to watch, because giving up is so not an aspect of her personality. Mom and I are both fighters, possibly because we’ve had so much to fight against and fight for throughout our lives. Sometimes we have difficulty recognizing which battles are worthy of your efforts and energies, because when we care about something or witness something that is wrong, we speak out whether or not anyone else cares. So when mom wouldn’t get out of bed because she had become convinced that she’d lost the ability to walk, it killed me. I did whatever I could to get her up and trying. I yelled at her saying I could fight anything but her giving up. I refused to let her quit and thankfully she didn’t.

Now she’s walking and the grip of fear that clenched at me so much is beginning to loosen.

It would be perfect except for this.

Two weeks ago, I received a phone call that my father wasn’t doing well. He’s in a nursing home because he’s suffering from dementia. I hadn’t seen dad in a few weeks because I was so busy taking care of mom and I couldn’t leave her alone for fear that she’d fall. No one in my family helped me or offered to help, so I was left with a pretty tough choice to make, but perhaps it wasn’t that tough after all.

My relationship with my father has always been problematic. He was abusive. He’s the reason why I walk with a limp, have chronic pain, can’t have children and have struggled all of my life to have healthy relationships with men. When I was a child, I thought all men were evil. My father had taught me that in every way imaginable and that particular lesson stuck. Thankfully, I have many wonderful male friends who have shown me nothing but kindness and understanding and helped me unlearn that horrible lesson. All men aren’t evil, and some would never consider doing to a woman, let alone a child, their child, what my father had done to me.

That said, I can honestly say that I love my father, though to be honest, this love ranges from love to indifference and back again. I am not a victim, I was once, but not today. My being able to love my father has come out of my healing from his abuse. My indifference comes from my ability to forgive. I have never hated him and I’m grateful for that. Somehow, I had the sense early in my recovery to recognize that I had to forgive my father in order to move on with my life. Of course, this doesn’t mean that my forgiveness was perfect or constant. I am human after all, and I have moments of anger and bitterness over what he did, but thankfully those moments swiftly pass.

My father is dying. Those are horrible words to write. Even with my situation, it is not easy. Though he was sometimes abusive, he was also sometimes a really great dad. I just wish he’d chosen to be that good father throughout our relationship, but he made the choices he did for whatever reasons and I’ve had to live with them.

My father is dying and I am already mourning him. Dementia takes people in pieces, first bits and pieces of their memory fade away, then their recognition of you fades away, then their ability to feed themselves or function fade away until there is nothing left by a body that breathes in and out until it finally that stops too.

I hold his hand remembering the times when I sought him for comfort. He was always the one who bandaged my scabby knees when I’d fallen down. I had suffered many falls as a child. I have no idea why, but yeah I do. My dad threw me down a staircase when I was a kid and though I limped around for weeks, my parents never sought medical attention for it. I was called dramatic and told to knock it off, but no one called the doctor. It wasn’t until I was in college after yet another fall, that it was discovered that I had a mass on the bone of my leg that had developed because of a previous fracture. Perhaps my dad being so gentle with me when I fell was his way of apologizing for what he’d done, perhaps not, either way I remember his gentleness and I mourn him.

Ironically, my mother was always a little rough with me in these moments. She has strong, tough hands and would always press a band-aid on too hard or clean a cut too vigorously.

Her relationship with dad has been problematic too. They hated each other for years. She because of the abuse we’d endured, he because he blamed her for putting him in jail. Now, somehow they had forged a new relationship. Now they have grown to love each other. It’s pleasant, beautiful and awful to see. While I am happy that they are happy, I am also repulsed by my mother’s betrayal.

“Your father did wrong in the past, but that was then.”

Those words are like a slap.

I’m the one who had to tell her about that phone call. He had a stroke and it’s just a matter of time. I’m the one who comforts her when she cries and I’m the one who sometimes cries myself.

So far I’ve received two phone calls telling me his death was imminent and somehow he has fought his way back. He won’t recover, but this will not be an easy death. Dad is afraid of death. He believes in hellfire. I do not. There is no need for hellfire. He’s in hell now.

One of the things I’ve done to escape all that’s going on is to watch Netflix DVDs of “The Tudors.” Of course it sometimes takes me weeks to go from one episode to the next, I can honestly say that I love this series. I’m currently watching the part where Henry is beginning to have a change of heart towards Anne Boleyn. I know what’s coming. I love English history and know this story well. It’s really sad because I love the woman who is playing Anne; a lovely actress named Natalie Dormer. She has played Anne from an impish little tease all the way up to a powerful queen. It’s an extraordinary performance. I hate to see her go. I could stop watching the show now and just pretend that Anne and Henry lived happily ever after, but I know that’s a lie. Besides, I want to see the rest of this wonderful show, so I will keep watching.

There is no easy way out for my situation with my dad. His ending is inevitable too. I know it’s coming and there is no escape. My father is dying, my mother is recovering and I have to keep going on. I have to see what’s going to happen next. I have to face what I do not wish to face and I have to help my mother through it, while I try to process my feelings and continue to heal.

Posted in Abuse, Cancer, Caregiving, Dementia, Survival | Tagged , , , | 24 Comments

The Art of Tightrope Walking

Today has not been a good day.

First of all, I am exhausted. I feel like I’m on the verge of cracking up because I can’t sleep and when I do finally pass out, it’s not for long. I didn’t fall asleep until after 5am and then had to get up to make mom’s breakfast. Thankfully, she’s doing better so she can help with some things, but just the same, the weight of my responsibilities continues to crush me.

Added to this, my mom had a boil or hematoma on her chest near her mastectomy incision. I’ve been watching it and got her an appointment to see the nurse practitioner about it tomorrow. Well, it just burst and my mom freaked out. I remained calm as I looked at it, and then lead her back to her room, where I removed her bloody nightgown, cleaned up the wound, applied Silvadene, got her a new nightgown, made she was all right and then washed the blood out of her nightgown.

So I’ve been a bit on edge. I need to sleep; really, sleep and my body just can’t relax enough to do it. I will get through this somehow. That is one the good thing about bad days; they pass, and if you’ve lived through enough bad days, that thought alone is a blessing. Of course, sometimes those bad days pile up until you have bad weeks, months or years and you have to wait for some relief from the constant struggle of simply trying to get by.

When I was a little girl, I knew a woman who had survived the death camps in Germany. She rarely spoke about her experience, but she did mention that there were times in bitter the cold of those terrible days, when they would sometimes sing. She said their voices were barely above extremely hoarse whispers, but just the thought of being able to sing lifted their spirits. It’s hard to imagine people singing in the midst of those horrible smoke stacks that rained unnatural ash, but it is possible to believe in the capacity of the human spirit to find a way to rise above anything. Of course, I’m not saying that being a caregiver is in any way like being a German death camp, but there are definitely times when it has its moments.

There are moments when I feel trapped by this situation, and there are those when I feel like there is no end in sight to the constant fear and worry that sometimes plague me.

I wish I could find a better, more creative way of expressing myself, but there is no artistry to this particular kind of writing, just as there is no artistry to this situation.

But perhaps I’m wrong. Perhaps there is an art to many things we don’t consider artistic or creative.

Perhaps there is an art to care giving as much as there is to surviving.

I do feel that I’ve gone through a lot of this experience with a kind of seat-of-the-pants kind of mentality, and there is definitely an art to not being married to a set-plan, but allowing yourself to just do what needs to be done. There is little place for revulsion or upset. I must take care of my mother with as much calm as possible. I must not let her see that I’m struggling because then she will focus her energy on worrying about me instead of recovering her health. Or worse, she will become afraid and begin to imagine that things are worse than they really are. This will also affect her ability to heal, and I cannot, must not, allow that to happen.

So perhaps there is an art to holding back, and holding onto your emotions until a later time when you can let them out, because you must let them out or you will risk making yourself sick. I have walked this particular tightrope many times during the course of this experience, and I have come close to falling off, but I have always—well at least so far—been able to right myself and get myself back where I needed to be.

Yet, even masters of tightrope walking can fall. You can go online and see footage of the great Karl Wallenda falling to his death at the age of 73. Some will say that he died as he had lived, but the truth is that no tightrope walker wants to take that final plunge. The hope is always to make it to the other side as safely as you were before you took that first step. I believe that is the wish of all caregivers. We all want to get our loved ones and ourselves through to that other side. We may waver, at moments, because there will inevitably be bad days, but we must strive not to let anything make us fall.

There is too much at risk if we do.

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First steps on a long journey

I will find strength in weakness
Grace in despair
Beauty in the commonplace
New aspects of normality through each trial that comes
For my loved one and myself.

I will journey through darkness and never give up

Help my patient endure when endurance is all there is

Provide love, patience and understanding

I will not be perfect
But I will allow myself my own humanity
Even as I struggle, each day to be strong.
Even as I wake each morning saying the same prayer;
God, please give me the strength to get through this day.

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