“For in grief nothing ‘stays put.’ One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?

But if a spiral, am I going up or down it?

How often — will it be for always? — how often will the vast emptiness astonish me like a complete novelty and make me say, ‘I never realized my loss till this moment’? The same leg is cut off time after time.”
― C.S. Lewis, A Grief Observed

As a part of a writing class on grief, I was asked to personify my personal grief…I was asked: WHO ARE YOU? TELL ME WHO YOU ARE?

This was my answer:

I am not bound by space. I am sometimes subtle…but obviously I am sometimes not. I like to play games with you. It brings me great joy to see you struggle, or cry, or get angry. I am something you cannot control and in that, I find power. I am something you can’t see therefore you can’t prepare for. But I will always let you know when I’m around. I like to hide in the shadows so you forget for a moment about me. But I also like to engulf you…that heaviness you feel when you think you can’t breathe and panic? That’s me. But I also enjoy brazing by you with just a light touch just enough to not let you forget that I am always here.

I am like the the characters in Screwtape Letters…I’m in your head, Stephanie. I know your thoughts. I know your joys. But most importantly, I know your insecurities. I know your guilts. And it brings me great pleasure to expand on them and make them reach wide…I prey on them…I enjoy to exploit them to bring you harm…I like to push them to the forefront of your mind even when you try to enjoy yourself.

Sometimes, I like to hang around you all day, giving you that sadness you just can’t seem to shake. I know that all it takes is just a whisper to plant a thought and then sit back and watch you crumble.

My job is to rob you of your joy.

Maybe someday you’ll be strong enough to push me aside or know what to expect when I come calling. But deep down I know the cycle will never stop and I’ll be hiding in your shadows behind you for the rest of your life.

And the pleasure is all mine…

[photo by Dani Luc Photography]

But do you get it? Do you understand a mother’s love?

I’m slightly wrapped up in my own reality…you know, that reality where you can’t understand unless you’ve been there and then all of our stories are unique? How can we possibly empathize and give justice to that?

There is no understanding…

Have I acted psycho, unpredictable, or unstable to you in the last few weeks?

Circle NO…wow…I love you but I’m happy you aren’t that close to feel the collateral damage…

Circle YES…well..congratulations…you are my backbone…I first feel the need to apologize. I feel like I need to say to you, “I’m sorry?” Because you hold me up and I just fight…

But please know, I’m sorry and not sorry.

Can you tap into that fear of when your smoke alarm goes off in your home? Most of the time it’s a benign effect but there’s that feeling in the back of your mind that there is a threat unseen. No matter the outcome, you are thrust into the the fight or flight stage. But it’s rainbows…I’m going to live no matter what goes down…

Hey…just replace the battery on the smoke alarm and all is ok. BUT…what if there is real danger? Do you ignore it because you’ve been overreacting to the status norm or do you take it to heart?

Living as a “caretaker” of a terminally ill mother enforces a didocaid of all realities…it’s been a month and I’m getting worse more than better.

Triggers are everywhere and prompt a reaction whether wanted or unwanted. If you come to contact with me over these days, I’m sorry to say that there are winners and there are losers. I interact with people that I love and don’t dwell on my hurt but yet hate you at the same time because you ignore my reality. I will look at you with disbelief like I’m living in denial but yet get mad if you don’t acknowledge our hurt.  I’m so sorry you can’t ever win. It’s been a month and the diagram tells me I should have a little direction…but eff that…I don’t follow rules.

A year ago I posted on social media:

I don’t like to be public with every day coming and going, but we could really use some prayers right now. Yesterday we decorated mom’s [Christmas] tree and the tears were streaming down her face the whole time. She finally admitted that this may be the last time she does this with the kids. I told her IT ISN’T THE LAST TIME AND THERE WILL BE PLENTY MORE. Being of a positive frame of mind goes only go so far. I knew it at the time, but I lied to her when I told her there would be more. I encouraged her that this was not the last…but it was…I’m a liar.

I can’t breathe…I can’t do her legacy justice…but please, feel her tears in these photos…that’s all I ask…the smallest things are the most important…

And you know what?

I want my mom…I want her to hang the most God awful ornaments on her tree because they have meaning to her…the annoyances of then are blessings of today…

These photos are from a year ago….

I wish I had a more grand way of sharing these to do my Mommy justice…

The littlest things are the biggest things.

This happened a few weeks ago, but I feel like we are here. We are in this horrible in between space of wanting more time with her, but can’t stand to watch her suffering.
To wish it done is wishing her physically away from us.
It’s agony…I wouldn’t wish this on anyone.
This is our cross to bear…it’s just SO HEAVY right now and I can feel us stumbling…
But even Jesus fell three times carrying His, right?

When I try to imagine a life without you in it, I can’t breathe. You knew me before any other did. You grew me inside of you. You labored for hours in agony to bring me into this world. And now I have to watch you leave it in a different kind of agony…

It’s the unknown that’s scary; what awaits you? Will you be blissful in the arms of Jesus and not think of us again until we join you? Or will you see everything we do and be with us more completely in death than you ever could in life? I guess I won’t know until I myself die.

But I’m so selfish…I want you here. I want important things like you telling me I’m doing a good job with raising my kiddos and such frivolous things like telling me my outfit looks nice. I want you to play with my hair and rub my back when I cry. Who will do that when you’re gone?

I feel like an orphan already. Dad left by choice. You are leaving by scratching and clawing against your will. I’m so scared about what life will look like when you’re gone.

Tonight is the first night since you’ve gotten sick a year ago that I’ve been angry and selfish asking, “Why us, God?” I don’t want to learn the lesson You have for us. I don’t want to be stronger. I don’t want all those cliche virtues I’ll supposedly gain after going through this trial. I want you, Mommy. But I want you to feel happy and feel loved and not feel pain anymore. I guess those two are not going to happen together, so I must give you up. But I’m scratching and clawing the entire time…

Claire’s kindergarten teacher at the Catholic school, Miss Tieken, taught my daughter this and we’ve been saying it ever since. When mom was in the hospital last year, we would read the book “Guess How Much I Love You” which ended with the infamous, “I love you to the moon and back.” That never seemed enough. It was finite. Every mother knows that her love for her children knows no bounds. So love you like a circle became our motto. We had bracelets and necklaces with circles which we still wear as a symbol of our commitment to one another. 

The day that mom came home, Chrystal and I joked about all of us getting circle tattoos, knowing there was no way she would agree. She’s always been against tattoos and shakes her head at every one that my sister and I, or anyone for that matter, has. She’s old school from the south…raised a Bible thumping Baptist. Tattoos are a sin to her.

As we were joking, she said, “Yes. Let’s do it.”

So we loaded her up a few days later and took her to a tattoo shop. I can’t remember the last time I was that giddy. It was one of the greatest moments of my life. They were strategically placed on our right wrists so that everything we do and reach for, we are reminded of our love for one another.

So the woman who is near death, who thinks she may be committing a sin, does it anyways because she knows it’s important to her girls. She sacrificed to give us a piece of her and a memory to hold onto for the rest of our lives. A mother’s love and sacrifice knows no bounds…

……….

Everyone has asked how my kids are doing…

From day 1, Claire has had to tuck in her Mamaw in every night. And boy does she tuck…every last bit of comforter is tucked under her and she can’t move like a mummy. It’s quite humorous.

Claire is such a loving and caring soul. She is Mamaw’s little sidekick. For right now, Claire is doing ok. She doesn’t cry anymore. But the first couple of weeks were rough on her. She cried almost every night. She’s way beyond any of us in processing this. She’s thinking of future events that Mamaw will miss: birthdays, Christmas, graduation, her wedding. At eleven, she’s saying things like, “If I had known this would be my last birthday with Mamaw, I would have tried to make it the best ever.” Oh my dear child. The guilt starts young. And how do we answer a child’s “why” when we can’t reconcile it to ourselves.

All I can do is hold them while they cry. It rips my heart to pieces to see them hurting. Which then makes me realize that’s exactly how our mother feels when she sees us cry. Someone please come mend our broken hearts…

One particular night, Claire was sitting in mom’s lap crying. The conversation went a little like this:

Claire: Mamaw, I can’t stand the thought of you not being here.

Mom: I’ll always be here. Just not in the way you are used to. Mamaw will be in the wind. Every time you feel the wind against your face, that is Mamaw telling you I’m here.

These windchimes that hang at my mom’s house will be Claire’s when she grows up.

Jack is dealing with things exactly how you’d expect a eight-year-old boy to process things. One night he ran up to my mom and exclaimed, “You know what’s going to happen to your heart when you die? Its going to go, bump, bump, bump…and then it’s going to stop.” Oh my dear sweet boy.

……….

When she came home, she said that she wanted to have a Christmas before she goes. Christmas is her favorite time of the year. There is so much joy and love and giving wrapped up in that holiday…why don’t we treat every morning like Christmas morning? So Christmas is scheduled for this weekend. When she picked the date, Chrystal and I were nervous that she wouldn’t make it this long. She proved us wrong once again. We’ve wheeled her through Toys-R-Us. We’ve been wrapping presents. The kids have their little trees put up. We made Christmas cookies. We have a turkey thawing. Tomorrow will be our Christmas. Her Christmas.

May you also treat tomorrow like Christmas morning and then every morning after that.

I know I needed that reminder…some days are so hard, I know…we are tired. Life gets us down. We are busy and run ragged. But we can try.

Take it from Claire and make it the BEST EVER…no one knows if you’ll get another.

May the peace and joy of Christmas be with you, my friends. We love you.

Today is the last day of the year where there is perfect balance between the light and the darkness. Starting tomorrow, there will be more darkness than there is light…

And at 36 years old, I am still afraid of the dark.

It was the same time last year that we were in the trenches of the same war, with the same disease. Last year, we were afraid because we didn’t know the outcome. This year, I am afraid because I do.

In case you missed the news, back in March, we received the “all clear”. The stage 4 lung cancer was in remission and we had our miracle.

There was much rejoicing amongst family and friends. I must admit, that I never allowed myself to completely be content with this new idea. I don’t know if it’s the scientist part of me that needed someone to lay it all out in front of me to believe, or if it was typical Stephanie to never quite embrace happiness because of the fear of having it ripped away. It’s a protection mechanism I’ve perfected. I want to do everything in my control to prevent a blindside…but as we all know, life is made up of the unpredictable.

On Thursday, August 27, three days after my mother’s 60th birthday, I accompanied her to her PET scan follow-up with an uneasy feeling. Sure the previous three scans of her lungs were clear, but this was of the entire body and mom had been having some health troubles and pain unrelated to the lungs. That morning, with my sister on speaker phone from Kansas City, we received the news that we were dreading: the cancer had metastasized. The lungs were still clear, but it had spread to the lymph nodes of the lungs and in her abdomen, into the bones of her femur and pelvis, into her spine, and a small spot on the brain. The following Tuesday they were to perform MRI’s of her brain and pelvis to get a closer look and develop a game plan. We had hope. We beat this once; we could do it again.

She did get her MRI on Tuesday, but not in the way that was planned. I had been gone all weekend shooting and picked up the kiddos Monday after school and headed home (for those of you who didn’t know, I moved in with her). When we arrived, I found her despondent, confused, and repeatedly vomiting. Emergency. The babies stayed with Papaw while I somehow got her to the car to speed there.

It was alarming…she was confused…she didn’t know the month…she kept pulling out her IV…she stared into space almost the entire time…

She had an infection…her WBC was 24,000 so she was septic. We thought we had the culprit nailed down. Then the results from the CT scan of her head knocked me back into my seat. Her skull was full of tumors that were bleeding. Surgery had to be done immediately. The doctor told me to call the family as there was a good possibility she may not make it. Papaw didn’t answer the phone. But my brave little Claire did. I gave her the watered down, kid appropriate version and she went into his room, woke him up, and told him what was going on. She’s so brave. It was like a scene out of a movie: personnel rushing around the room prepping her and them trying to rush me out because they were going to intubate her. I said not before I had some time to pray with her. Claire also snuck in a Facetime with us to tell my mom she loved her. Even over the fear of what was going on, my heart was overflowing with love and pride over the strength of my little girl.

Before I left the room, the neurosurgeon asked if I had any questions. I asked a question about the blood thinner she was on because she had developed DVTs a few months before. He stopped cold. It didn’t say in her charts that she was on blood thinners. That changed the entire gameplan. They gave her Vitamin K to clot her blood and hopefully stop the brain bleeding, an antibiotic, and steroids overnight with the plan of an MRI in the morning. All we could do was wait and pray.

Morning came. She was holding steady. She had her MRI. We waited some more. I walked out to call my sister and when I came back in, she said, “Did they tell you that there is no hope?” I asked who told her that. She replied, “That man did.” There was no man. There was a team outside of her room in ICU and I asked them if someone had been into see her. They said no. But then they asked me to have a seat. That’s never a welcome request in a hospital.

“Your mom’s one brain tumor from two weeks ago, has multiplied into six large ones. There will be no surgery. There are no more treatments. We are guessing she has 2-4 weeks to live.”

……….

“You never know how much you really believe anything until it truth or falsehood becomes a matter of life and death to you.” – C. S. Lewis, A Grief Observed

What would you do if you were only given 2-4 weeks to live? How would you spend those precious seconds? Would you travel? Would you want to embrace the ordinary at home? But more importantly than how, is the who…with whom would you choose to spend that time?

Chrystal was on her way light speed from Kansas City. I made several difficult phone calls but chose to tell those closest to her in person. I felt so unworthy and inadequate to deliver such news. I thank God over and over that the doctor came in with me to tell her. The steroids and anticoagulant were doing their job; she was having moments of lucidness. And this was one of them…it’s the most I had seen her cry, I think, in my life. She didn’t want to leave us. She worried about us. She wasn’t done enjoying my kids. So many things left to do that will never be done…

I cried myself to sleep beside her in the recliner…it was the first wink of sleep I had had in 36 hours. When I awoke, the most kind nurses were giving her a sponge bath and my mother was beaming. She said, “Look! I found Chrystal!” She had confused one of the nurses for her. I couldn’t handle it. How could she not know what came from her own flesh and blood? What a cruel disease.

Chrystal arrived to the hospital at 1am…we only talked a bit but mostly just sat in silence together…there weren’t any words that could have been exchanged to wrap our heads around what was happening so quickly in front of us.

She took the place of vigil beside my mother’s bed and I rushed home to see my sleeping babies. How was I going to tell them?

I kept them home from school the next day. When I started to tell them, Claire said that she already had a feeling Mamaw wasn’t going to live very much longer. Being a mother and watching your child process news like that is something I wouldn’t wish on my worst enemy. I question all the time whether I did it the right way…did I say the right things…all I know that I did right was hold them while they cried. News came from the hospital that they had stepped her down into a regular room so the kids could see her. It was a very quiet ride to the hospital. I wonder what they were thinking. My question of such was always met with the infamous, “I dunno.”

I feel it important to point out the kiddos’ facial expressions…what are they thinking at this moment? What are they feeling?

Claire made mom her own version of “Guess How Much I Love You” which ended with “I love you like a circle with no beginning and no ending.”

I had to remove the cross necklace that Chrystal bought for her when they started the testing on Monday night. That day, it went back on the rightful owner.

The hospice staff interrupted our visit to begin the business part of bringing her home to die…

Wow…were we up to that responsibility physically, mentally, emotionally, and spiritually? Could we do this? It wasn’t going to be perfect…we were and are stumbling…but we are putting every damn thing we have into it.

……….

“It is harder when I think of hers [suffering]. What grief is compared with physical pain? Whatever fools may say, the body can suffer twenty times more than the mind. The mind has always some power of evasion. At worst, the unbearable thought only comes back and back, but the physical pain can be absolutely continuous. Grief is like a bomber circling round and dropping its bombs each time the circle brings it overhead; physical pain is like the steady barrage on a trench in World War One, hours of it with no let-up for a moment. Thought is never static; pain often is.” - C. S. Lewis, A Grief Observed

That night I came back and it was the three of us…alone for a few hours…mom’s mind was back to her old self. It was hard to think she was going to die when she was improving. We evaded discussing the obvious and tried making a pretty selfie. I think there may be one good one in there?

The next day, she came to her physical home to begin the journey of her going to her permanent home.

For now, she’s holding on. She’s slowly getting weaker. Symptoms are slowly getting worse. Her pain is increasing. But we are still here. And we are still thankful for each and every moment and for each and every one of you that has reached out to our family. We are surrounded by love. And words cannot thank you enough.

But the night is here…

And the rest of the year will now see more darkness than light…

But there’s still light.

Even though it may be lessening, there will always be light.

#loveyoulikeacircle

“Perfect love sometimes does not come till the first grandchild.” — Welsh Proverb

(photo credit Emily Tesnow Photography)

This isn’t going to be a wordy post filled with sadness or lamentations at a milestone on this journey…this post is going to be about unconditional love and how that love brings joy and comfort in any kind of situation…

These two have that bond…love like a circle.

This is love like a circle…a love with no beginning and no ending…

Tuesday of this week, we had family photos done by My wonderful friend Emily Tesnow. She drove all the way to us and hour one way because she knew Mom couldn’t handle much of a drive. It was such a mixed bag of emotions. I was a nervous wreck because I wanted everything perfect and the day wasn’t going that way… But you know what? It turned out perfect. I cried watching her hold my kids. This is the only time she cried too. This photo takes my breath away… 

You can view a slideshow of the session here: http://vimeo.com/m/108022011
Thank you Emily from the bottom of my soul for giving this gift to my family…

That night, after the session, started an ugly downturn of negative emotions for my mom…she had lost her first clump of hair while getting dolled up for the session so things started to feel very real to her all of a sudden. The chemo is causing her to be paranoid: paranoid that we don’t love her, paranoid that the kids will forget her and replace her. She feels guilty for things beyond her control. She wants to fight. She is angry. Rightfully so…and we reassured her it was ok to have those feelings. But we also reminded her not to live there…not to stay there…feeding those feelings will suffocate her spirit just as the tumors do her lungs… We must be her voice of reason and reassurance constantly to help her keep those ugly feelings at bay… I just wish she could really see how we all look at her in amazement. So, this is where I sit before you today… This is so hard to watch…yes, the physical pain and sickness is horrible to see her go through, but the emotional pain is “more hard to bear”. My heart is broken… …and I can’t hide it. Love you like a circle, Mommy.

If you missed the first post of our journey, you can find it here: http://everydayphotographybystephanie.com/blog/?p=612