Cratered lives: a black hole and a ray of sunshine

It is far too long since I have committed any thoughts to this blog. In fairness, much has happened since my last post. Some good, some devastating.

Casey, Eva, Preston, and I left my beloved Miami University and southwest Ohio in April so that I could take a CIO job at Armstrong Atlantic State University in Savannah, GA (my hometown). We were set to have a wonderful family time where my Mom and Dad could be a direct part of the twin’s lives as they grew up. This was not to be.

A delighted Grandcí in March 2011 holding her beloved grandchildren, Eva and Preston.

For about 2 months we lived at my parents’ home. Mom and Dad offered  us to stay as long as we wanted. I was tempted to stay there and hoard cash; however, Casey felt no such temptation. Somehow living above the garage (even though it is really nice) isn’t the life she imagined, even though I’m sure Dave Ramsey would be on my side.
Three weeks in to our stay, Mom wasn’t feeling well and it was showing. She had been diagnosed about 3 years earlier with a lung condition. The original diagnosis was Idiopathic Pulmonary Fibrosis (IPF), which has a 90% five year mortality rate. However, upon further review the diagnosis was changed to Nonspecific Interstitial Pnumonia (NSIP) which was much better than the original diagnosis. Essentially, this is an autoimmune disorder in which her body was attacking her lung tissues. The attacks cause scarring in the lungs which meant that she getting progressively less and less oxygen (O2) during respiration.

When she was diagnosed with NSIP she was given good odds for a 20yr survival rate. She became a new person. She dieted, exercised, and was more vibrant that I’d seen her in a long time. She responded well to treatment, and things looked good.

But, the disease accelerated, and she went into the hospital on May 4, 2012. Initially, things were hopeful as she once again responded to the treatments. The doctors kicked in high doses (1000mg/day) of prednisone to try to stop any progression of autoimmune based attacks. She was doing well enough that she needed to go to the long term care place in the hospital to get weaned off of the high pressure O2 she was on.

She worked at it hard and rallied. We saw the O2 pressure and concentrations go down, and hope grew. We just knew she was coming home to resume the happy life that was waiting outside of the hospital.

There were fun moments. The hospital had these cupcakes that were so good they had NO business being in a hospital. I’d swing by the cafeteria after work, and Mom and I would talk about the day and our future plans as we ate a delicious cupcake. We talked about how good it was for Casey, the twins, and me to be home. We talked about the decision to buy a house, and then which house, and then the things we would do to fix up the house we selected. We spoke of co-hosting Thanksgiving in the new house.  We talked about seeing Eva and Preston in front of a Christmas tree. We talked about Grandcí and Bobboo (their grandparent names) spending the night at our house. Those moments are irreplaceable to me.

Progress slowed, and it became apparent that things were moving in a direction that we none wanted to think about. Concentration and pressures of 02 increased again. Her O2 saturation would dip low for simple things like going to the bathroom. It took some time for the external O2 to help her catch up. During that time the panic of not being able to breathe would kick in. Breathing is one part physiological (the mechanics of gas exchange) and one part psychological (think how watching a movie about a submarine with folks trapped underwater elicits that breathless panic even when you are in a room full of O2). Both of these aspects impacted my Mom. So, she would need meds to help her relax and mute the panic reflex.

I sneaked the kids into the hospital to see her. It was a good visit, and we captured it on video. It’s a good thing too. It would be their last visit. I can still see Mom playing “peek a boo” with the cannula in her nose and Eva, as she was worried that it may frighten the her. As they were going away, indelibly in my head is the image of Mom reaching out for Preston’s curls.

Each day brought a heavier realization that, outside of a miracle, Mom would not be coming home. There were tears, oh so many tears. There was comfort in Mom’s faith, and there was hope. She said all the time, “I’m want to get better. After all, I have every reason to want to live.” The cycles of O2 desaturation/panic increased in frequency, and more time was spent on sedating meds. Still, she was lucid and talking about the future.

She let me and Dad know that she was prepared to die. She wasn’t worried about after death, just the transition. Her faith in Christ sustained her to the end. She was worried that it would be painful. Particularly, she worried about dieing while feeling suffocated (that mental part of breathing). We promised her we would do everything we could to keep that from happening.

I would give Dad a break so he could go home, shower, and eat. During our times Mom spoke of her wishes; we spoke of good memories; and she was actively engaged in giving opinions and ideas for the house Casey and I decided to buy. She loved looking at the “Houzz” app on my iPad. She enjoyed looking at Facebook. Eva and Preston videos delighted her. She actually got to hear Preston say “Grandcí.”

She was worried that Eva and Preston wouldn’t remember her. That hurt her as those grandkids were so much a part of her life. I promised her I would not let her memory fade from them.

Family came to visit. Mom was tired with the visitors, and it took a lot out of her. She was gracious and shared a laugh with each person. At the end of it, she said that she knew they were coming to say goodbye. Casey came up, and they had a great moment that was filled with love and tears.

I can’t and won’t go into all of the conversations, but I have written many of them down in a private journal. Those memories will have to sustain me.  The machines were on 100% saturation and 100% pressure. There was nothing more we could do. A transplant was not an option. No stem cell therapy. No clinical trials. We were out of options. Science let us down. God let us down. We were out of hope.

Dad called me early Sunday morning on May 20th. I could hear a night of tears and quiet desperation in his voice as he told me that she had panicked all night and was only okay sedated and that he wouldn’t let her suffer another night. We conferred on the phone, and decided that to honor Mom’s wishes, today was the day we would be sending her home to heaven.

Out of the promise to not let her feel suffocated, she was fairly sedated when I arrived. I told her I loved her as I walked in the room. She rallied a bit. And with a strained voice she told me she loved me, and lifted heavy arms to reach for me. That was the last hug from my Mom. She said she knew that today was the day, and she was at peace.

Close family gathered around. Casey had to be with the twins and so was not there. Dad was on her right side holding her hand. I was on her left side holding her hand. Her sisters, nieces and nephews, and a cousin were in the room. We all told her we loved her, and I read her favorite scriptures out loud. The xanax, valium, and morphine were increased to make sure there was no suffering as we tapered the O2 down. As she was a fighter, Dad and I gave her permission to die.

Even against this terrible backdrop, somewhere in the back of my mind, I had this secret hope that as the machines were turned off that we would get one of those miracles. This did not happen. She lay there and took what looked like sips of air with her mouth, my Dad and I felt her squeeze our hands, and she was gone.

Gone. The woman who had loved me unconditionally for 40 years; who I talked with at least once a day; who was a confidant; a counselor who pushed me to be the best person I could be was gone. The lack of ability to do the simple gas exchange of C02 and O2 that we each do about 28,000 times per day is what caused my Mom’s death.

Grief is somewhat a self-centered thing. I mourn the loss of our daily interaction and the overall guiding presence. There are far too few people who are in our corner, and I have one less. Mom had chronicled my life, and I lost that connection to my childhood. I lost that bridge who would tell stories to my kids about me as a child. I lost love in its purest form for me and my kids.

My Dad and I have always been close and now even closer. He will be with us, and we will be a family. They were married 43 years, and his pain is unthinkable and unceasing. All I have asked of him is to honor Mom by being the best version of himself he can be and to help me let the kids know who Mom was.

This is the picture my Mom asked to put on her Facebook account as her “going home” shot. She was 59 years old when she died. Far too young.

The pain and sorrow have been unimaginable. Casey has been my source of strength, and the kids my source of joy. Dad and I have leaned on each other and are surviving the cratered life we now live.

In June 2012 Casey and I found out that we are having –quite unexpectedly– another little one due in March 2013. Just a few weeks ago we found that it was a little girl. Her name will be Ella Cynthia Sue Howard.

“Ella,” which means “bright light” because she is bright light in a time of darkness and sorrow (also a family name on my side from the 1700’s). “Cynthia” to honor my Mom, and “Sue” to honor Casey’s Mom.

It’s hard to think of this little one coming into a world where she will never know the direct love of Grandcí. Stories and pictures will have to do.

Tomorrow is Thanksgiving, and Mom is still co-hosting the event. Her presence is missed, but her legacy will live on.

I will find ways to honor my Mom for the rest of my life. Since her death I’ve run a half marathon to honor her and will spend the rest of my life helping people reach their full potential…because that’s really what Mom was about. And this is a good way to spend a life.

Mom, I love you. Thank you for loving me and guiding me. If there is anything good about me, it is because of you and Dad. Love, Friz

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5 thoughts on “Cratered lives: a black hole and a ray of sunshine

  1. Sandy, my keyboard is fairly salty from writing this. There are so many things that need to be said that I am just now beginning to be able to say. I appreciate your kindness and know that you understand the pain of loss. God bless you and your family. Hope you have a happy thanksgiving!

  2. Pingback: 5 Lessons from my Mother’s Life | Me. As it relates to You.

  3. Wow , i just googled Survival Stories of NSIP and came across this.
    must say it made me tear up. my mom was diagnosed with NSIP 1 month ago.

    • Zyanya,

      Thank you for sharing this, and I know that the world looks to be a scary place for you and your family right now. I think there has been some progress with Intermune’s perfinidone for this. It was too early in the trials for this to be available for my mom.

      I will pray for you and your Mom. I pray that she lives 75 more years in good spirits and good health, but even then remember that each moment is precious.
      Robert

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