Letting My Heart Breath

Having an unusually difficult night.

Since Mom died I have had a hard time finding self definition. I was a Caregiver. That was my role. That was my life. That was my purpose and sole focus for over 4 years. Now what?

I am distant, even within myself. I feel the absence of a part of me. The part that was "knit within my mother's womb." The part that was hers. She was so much a part of who I am. I am lost without her. Each day going through the motions. Each moment is something to be accounted for, to get through.

Life is harder without her. Without a focus and drive. Without the visible goal, the fight. It's over. We lost. Cancer won.

I know that she's better now, that she is at peace. Filled with the joy found only in heaven. But I am lost.

Yes, there are moments of bliss and joy and laughter. But they are followed with moments of isolation and heavy grief over her absence. I miss every moment of her life. I feel like I am trapped within a world of shadows, the color has been lost.

Wishing I could return the joy and happiness to my daily life. I am living by the strength, family, friends and my love for her.

It's completely surreal to know that she passed less than 5 months ago. I have heard many say that the grief doesn't ever fully leave, but that it gets easier. All I want is a day free of it, but that would feel like an abandonment of her...

I read the following article tonight: "The Five Stages of Grief and Loss." I found it interesting that the part that hurt the most was "acceptance." Which brought be back to the stage of "anger" upon reading it. How the heck will I ever accept the loss of my mother?! Of course I can understand that her body was no longer able to fight the battle against cancer, that she was tired, that medicine was out of options, and that she was ready. And as much as I thought, hoped and prayed...I was not. I will never be. I am my mother's daughter. A fighter, stubborn to the end. Her loss has left a deep hole within me. Thanksgiving was a busy distraction. But I am worried that Christmas will be hard.

Since her funeral I have driven to her crematorium a couple of times. Each one feeling like a pilgrimage. It's a beautiful space. Almost like a Zen garden. I sit with her there. It's quiet and beautiful. I have watched the leaves change and snow cover the ground. She watches, I am sure as life continues on without her physical presence. I know she wishes love, so much love and joy to Ali and I. But it's a journey within that I have still to fully find. I need to go back to the place within myself that she planted and helped grow. The lessons of love, compassion, faith, challenge, strength, and hope that she taught me. I need to remember that I will always be my mother's daughter. And though I feel her loss just as raw today as the moment after she drew her final breath I need to learn that this is not a journey for those who rely solely on their strength. It a journey that requires partners and support. So thank you for those who have shared in our loss. Those who have shared your stories of her and her life. Memories which will always be welcome and treasured. Thank you for those who have hugged us, cried with us, laughed with us, and ranted with us. Grief is not an easy journey and I am grateful for those who have partnered with me.

Sending love and hope out. Breathing deep. And crying, the healthiest way to let these emotions pour out of me...

Please know that I will always be appreciative of a moment to speak about my journey and my Mom. I may not always be ready. But the questions and space to share memories are priceless gifts.

-Kate

Singing this one for you Mom.

And we'll go up, up, up but I'll fly a little higher...

Change has never been an easy thing for me. The irony is that change has been the biggest part of this journey with mom. Every day is a new adventure, every day is full of change. We have come full circle. She has battled cancer (and the blood disorders before that) for over 4 years. It's been an emotional, mental and physical marathon. We have learned more about ourselves and our relationship as a result of this journey than in any other time of my life and I love her now more than ever.

She is now facing daily fevers and has begun coughing to try to clear her lungs and airway. Her tired physical self is dealing with not only the loss of her immune system, as a bi-product of her renewed battle with the leukemia, but also the rapid regrowth of the Aspergillus within her lungs.

Mom is still surrounded with loving family (my sister, my Aunt Suzie/mom's sister, and many close friends who have grown to be like an extended family). However as much as we hope that love would be enough to sustain her it is not enough to cure her. She is at home and is enjoying the flowers in the field by her house, the comfort of her own bed, delicious home cooked meals....but this too is not enough to keep her with us. Each day is a 24 hour period filled with precious moments with her that will now have to last us a lifetime once she is gone. Unfortunately due to her rapidly declining health it will likely be weeks, at most, that we have left.

We are overwhelmed by the constant desires from all of you to help us! I know how hard it is to be helpless in this journey, unsure of how to aid and comfort us. I too experience that with mom. But it's the little things that mean the world to us. The cards, the emails, the texts. We are looking for people to do grocery shopping and some meal drop offs for us so please sign up on Lotsa Helping Hands if you are interested.

Your support means the world to us. So be our cheerleaders and voices, share stories of how mom (and her chicks) have impacted your life. Remind her that she is leaving a living breathing legacy for all of us. And help others like mom live! Join the National Bone Marrow Registry (a transplant match through them allowed us to have an extra 16 months with mom), donate platelets and blood (that is being transfused into her daily), and love those around you. Share the love that she has shined so bright into the world.

Unfortunately because of mom's decline we are asking that you give us time with her and that her visitors be kept to a minimum. If you have any questions in regards to this please email me at wolkate@bethel.edu.

Thank you again everyone for your continued support.

All my love,
Kate

Song of the moment: "Clouds" by Zach Sobiech

With growth and change comes apprehension and fear

I will be the first to agree. This winter/spring sucks (here in Minnesota)!!! Global Warming appears to be showing the beginning of her wrath for our abuse of our beautiful planet. It's been months of snow, cold, and minimal sunshine at best. We have all felt it many of my friends agree with me that the lingering winter and the constant irony of "winter storms" (even though it's now officially spring!) has left us all feeling a little more down that usual.

My mom is no exception. Though she is still doing as best as she can with her current remission, her cell counts are now plateauing and her kidneys continue to be naughty (their counts being too high for her to maintain the regular levels of her anti-fungal and anti-cancer meds). She's now on the minimal dose of both and we are all praying that her body will behave itself.

In the mean time she finds herself alone frequently missing the company of her sister and volunteers around her. Most of us are now back to full health and well-adjusted post-flu and cold season. If you aren't sending lots of prayers of healing your way! Needless to say mom would LOVE some socializing. So if you have time for a phone call or even a cup of coffee I am sure she would appreciate the moment shared.

Hopefully will be around a little bit more myself now that the weather is less threatening.

Lots of love to all of you! And happy Spring!

-Kate

Something to make us all smile-and the Dixie's Chicks favorite dance jam:
http://www.youtube.com/watch?v=ehu3wy4WkHs
Michael Franti and Spearhead's "Hey You (I Love You)"

Breathing with God

Wisdom from my roommate. Every time he blows his horn (which is a long metal cylinder with a deep vibrating sound) he apparently “inhales all that he can and blows out all he can to God.” Sending forth a rippling effect of his intentions and prayer.

I going to attempt to do this with my own vibrations, in my case my words and my breaths.

I also need to remember that mine is not the only story being told. That in truth the life stories of those around me are of equal value and impact on the world. And in their life I am a character and their journey is not mine to live. I have my own path.

So deeply grateful for the wisdom shared by those around me. :)

A song to leave you with, Regina Spektor's "Laughing With"

http://www.youtube.com/watch?v=-pxRXP3w-sQ&list=SP45FE615740733CF8

Coming out of the cocoon

I am sure you know it, you've felt it. That moment of existential growth. Feeling that tangible wall of change that you just can't seem to push through. The one God holds in front of you until you're ready to accept your new self. Your evolved spirit.

These past few months have been that for me. The tight-rope walking transition of learning to live with the possibility of immediate life-altering change. That my mom, and all of us, could die unexpectly at any moment. I don't say this lightly, but as my dear roommmate pointed out it is the reality of existance. In fact, it is a large portion of what makes life so precious and beautiful. The contrast of death causes many of us to live our lives to the fullest of their potential. Mine stopped. It hit a wall.

For those few months of mom's relapse to current remission my life was on the back burner again. However instead of focusing every moment of my day on her healing I was paralyzed. I couldn't think, I couldn't breath. I realized that my entire defination of who I am is based on my mother. That my entire defination of my family unit was based on her. So for those two-ish months of constant fear of her loss my heart, mind and body were in constant awareness that at any moment I might lose her. The heartbreaking part of this journey was that I didn't realize what I was experiencing fully until now. So instead of drawing closer to my mom and those around me for support I went further into myself. I went to the deep, dark, ugly hole that is depression. I was overwhelmed by my lack of awareness and understanding.

Last time Mom was diagnosed I learned EVERYTHING there was to know about AML, Bone Marrow Transplant, even Natural Killer Cells. The entire journey was about getting her to transplant-once that happened my brain shut down. It didn't know how to deal with her survival. Not that I wasn't happy! I just hadn't researched what to expect with her beyond Day 100 (post transplant). Maybe that's part of why her relapse was such a shock. It's not unexpected in the medical world. If a patient makes it more than 2 years without a relapse they are much more likely to live a life free of leukemia. Mom made it 17 months. Her second diagnosis shattered me. I went autopilot and angry-defensive instantly. (Thank God I have an incredible sister who was able to fill in some of the emotional gap for Mom in the meantime!)

So there's my confession. My soul bared. I too am healing, as is Mom. I am starting to live again, one day at a time. Starting to remember how INCREDIBLY blessed I am in my life. A second (or rather third) chance with mom, an incredible team of volunteers, a wonderful boyfriend and roommates and friends, two jobs that I enjoy, the list goes on and on.

So here's my message to myself (and my wish for all of you): Take a moment to breath. Look deep into the interconnected webs of your life. Try to see which strings connect to each other. Watch the 6 degrees of knowledge and love infused. Realize the plan outside of your control and learn to love the mystery of it. Go bravely into the labyinth of emotions and self discovery, returning as a new and reborn version of yourself. Become the butterfly emerging from the cocoon.

With all the love in my heart,
Kate

My song of the moment: "Extreme Ways" by Moby (http://www.youtube.com/watch?v=sT6CXzgrWMg )

Take the good, even with the bad!

Mom’s initial diagnosis back in January 2011 taught me a very important lesson. Life changes in an instant. Nothing can prepare you to have your world pulled out from under your feet. You’d think I would have remembered that lesson when she relapsed in November 2012. However the bliss of ignorance was so sweet. I was temporarily distracted with the celebration of mom’s remission for that year and a half that I forgot the potential of instantaneous change. These last few months my mind has been once again reeling from the whiplash effect that all of you have been witnessing. The traumatic realization of mom’s leukemia returning, the rapid decision process on her plan and potential prognosis, her cellular decline and battle with Aspergillus, her quick in and out inpatient periods, rotation and maintaining communication and volunteer shifts with all of you. It’s quiet the experience and I cannot begin to express my deep unwavering gratitude for all of you. The irony is that many of you express that you don’t understand how I deal with all that happens with mom. The fact is I don’t. Or rather I do very rarely. My heart has been broken time-and-time again through this process. Developing hope that mom will live many more years and we have countless number of evenings and weekends to spend with one another. Then a day later I will be hearing about her relapsing, developing a aggressive lung infection, having to decide on a DNR and DNI, watching her counts rise and fall. I slowly become more and more apathetic to the rollercoaster. Feeling myself continue to grow with her on this journey but trying my hardest not get my hopes too high only to have them shattered again. Your prayers and positive thoughts are my daily bread. The driving force that keeps me going. The truth as my roommate so eloquently reminded me upon mom’s diagnosis is that “she will die. In fact so will you, and I, and everyone else on this world. Our time here is limited.” This was the hardest hurdle I have had to accept during this process and I fully admit that I reacted incredibly negatively when he stated this to me. But he said it in truth and love, tough love, but still love. He wanted me to understand that my time on this earth-specially with my own mother-was precious and something to appreciate. My denial of her decline was not helping anyone-especially her or myself. So with that truth in my heart and mind I send a blessing to all of you. May you live each day in the present. May you be surrounded by loved ones always (here on earth or by those who are no longer physically with us). May you be appreciative of all the little things in life. And may you, in time, be grateful for the hard times as they make the beautiful moments that much more precious. With love and the deepest gratitude, Kate