Solace

On Sunday morning, I gave a man who lives in a group home close to our apartment a ride home from church. During the short drive, he inevitably turned the conversation to the subject of my sister, since he's quite the fan. He said, "Your sister has an angel's heart. You are lucky to have her for a sister." I assured him that I wholeheartedly agreed.
My sister has ever been my protector and strength. She is the very definition of unconditional love. When we were young, I continually tucked her hidden trove of wild cherry Lifesavers in my cheeks or gave her Holly Hobbie doll stylish hair makeovers. She loved me still. I went through a rather moody and sullen phase during my early teenage years when I wasn't exactly a joyful companion. She showed me kindness anyway. She was always finding new ways to encourage and uplift me. While she was away at college, she routinely entreated her male friends to write me letters. It's hard to describe the impact this had on an awkward overweight high school girl.
My sister and I lived together in a duplex during my last two years of college since she was teaching there at the time. I didn't prove to be an exemplary roommate. When it was my turn to wash the dishes, they tended to pile up and up. This occasionally resulted in a mad scramble to stash them away in my closet whenever we learned our grandmother was en route for a visit. Even so, my sister remained my steadfast confidant.
It would seem that becoming an adult didn't magically render me entirely self-reliant. If I were to sit here and type all night, I would still be unable to relay how my sister has supported me at every turn. She is the one who rocked little Eli to sleep the nights I needed to stay beside Jason's hospital bed. She offered wise counsel during our times of financial hardship. She is the one who rushed to my side in the ICU at 3am when the chaplain called her after Jason coded. She regularly insisted that I take respite trips whenever my caregiving tasks became overwhelming. So, while I was in Chicago eating Lou Malnati's pizza or clapping at a Counting Crows concert, she was giving Jason insulin shots and shampooing my carpets. She went through the training for home dialysis so she could help be my back-up when I traveled to spend time with Dad during his cancer fight. She is the one who came to my door to tell me that his fight was over. She drove Eli to chess tournaments and youth rallies, and included him on family trips. She sat with me in a hospital waiting room well past bedtime while Jason received a new kidney. Even now, in the midst of her oncology appointments and an already heaping plate of responsibilities, she has been exploring solutions for our housing situation and walking me through homeschooling and the college application process. She is my staunch cheerleader, my sage sounding board, my abiding support.
It has taken me some time to find my words and get my bearings since learning of her cancer diagnosis. How to convey the absolute unfairness and utter helplessness I feel? My singular goal is to add my strength to hers as she battles this.

"Is solace anywhere more comforting than in the arms of a sister?" -Alice Walker

If Only In My Dreams

I remember eagerly awaiting the arrival of Christmas as a young girl. We passed countless hours leafing through the Sears Wish Book, earmarking pages. Nothing seemed outside the realm of possibility.
We had a live Christmas tree every year, adorned with bubble lights and excess tinsel. Dad worked at Gurney's Seed and Nursery for a few years. We all still remember the white flocked tree he once brought home during this time. We felt quite fancy that year.
Mom always made special treats during the holidays. This was the only time of year that she made batches of fudge. We also enjoyed her peanut butter balls and coconut balls. Before our farmhouse was remodeled, we had a large enclosed porch. Round tins filled with these treats were kept here. I was a frequent visitor to the porch this time of year.
Even though money was very tight, Christmas mornings were always magical. I have a vivid memory of the morning we woke to find a new television set. Instead of waiting in a line outside Best Buy at 5am with a credit card, our parents had sold apples to save up to buy this for us. I'm certain it took much creative budgeting to fulfill the wishes of four children, but we were never disappointed. We received joy in abundance. After we set aside the Life Savers storybooks from our stockings, we opened gift after gift. Christmas day was spent moving toy cars up and down an elevator on a Fisher Price parking garage, and making Weebles wobble.
Life's changes and loss have removed a bit of the holiday sparkle for me, but there is still magic to be found. Generosity and thoughtfulness still abound. That childlike hope remains in me yet.

"I'll be home for Christmas, if only in my dreams."

New Every Morning

Jason was pushing the cart yesterday in the grocery store when we paused to grab a bottle of mustard. Another customer stopped to greet Jason, and asked how he'd been doing. Neither of us recognized the woman, but Jason was pleasant as always. Her next question caught me off guard when she asked him, "How is your mom doing?" Jason smiled and replied that she's doing well. 

It has been difficult navigating Jason through the recent loss of his mom. It was the single most heartbreaking experience I've watched him go through. I tried to find the right balance between protecting him and including him in the days that followed. When we woke on the morning of her service, he asked the same question he does each day, "What do we have to do today?" He had already forgotten the grief of the previous night, about the hours spent at the funeral home for visitation. 

Because of his memory loss, each day is new for Jason. I can't bring myself to remind him continually that his mom is gone. In his mind, all is still well in his world. He hasn't tried to call her, or suggested we visit since he doesn't remember how much time has passed since their last contact. 

After Jason's brain injury, it was clear that his earliest memories were mostly intact. He still remembers the boundless love he received from his mom. Jason remembers her telling everyone that he was her baby, even after he was a grown man. These are the memories that stayed.

Of course, there is also a boy living here who does remember this profound loss. This boy remembers everything. He remembers a grandma who covered his entire face with kisses whenever she saw him. He remembers their special New Year's Eve parties together at her house, when they drank sparkling juice from fancy glasses. He knows that her face lit up each and every time she saw him and exclaimed, "Eli!"  I have assured him that he can talk about his grandma any time he wishes, since I am missing her, too.

I often question myself about what is best for Jason. I have no way of knowing if he would eventually remember if I were to tell him often. It is difficult feeling as though I'm keeping things from him, no matter the intent.
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." (Lamentations 3:22)

Love Always Hopes

I can still clearly remember falling back against the wall outside the ICU, my knees almost too weak to hold me up. The doctor was blunt and didn't soften his words. My sister stood beside me as we struggled to comprehend what he was saying. He told us there was nothing else they could do for my 33 year old husband, and that he would not survive. Through my haze of confusion and shock, I asked how much time we still had. The doctor coldly told us, "I am not God, and this is not a soap opera...there is no way to answer that." He did indicate that we should summon my husband's family to the hospital so they might say goodbye.
I passed the long hours of that night sitting beside my husband's bed, willing him to stay. Early the next morning, another doctor began her shift. She had been with us during the past several months, trying to determine the cause of my husband's symptoms with tests and biopsies. Her presence immediately brought a sense of calmness to me. I searched her face, and quietly pleaded with her to give me hope. She hesitantly told me that since he had made it through the night, she could offer me a small percent of a chance. A short time later, I witnessed an exchange between her and the doctor from the previous night. He must have questioned her, since I heard her whisper that she'd just wanted to give me some hope.
I fiercely clung to this hope for the next two days. Just as it seemed my husband was on the road to recovery, he experienced a life-altering setback. After going several days without sleep, I'd finally given in to my weariness. My sister had fashioned a little pallet of blankets on the ICU waiting room floor, and insisted that I try to relax and close my eyes. I quickly fell into a deep sleep, so failed to hear the "code blue, ICU" that rang out over the intercom at 3am.  I was gently woken by a nurse and a hospital chaplain, who explained that something had gone wrong with my husband's ventilator tube. The magnitude of the situation hit me when the chaplain asked if she could call anyone to come be with me. I have no memory of that walk to my husband's room, but remember the profound stillness when I entered.
Hope became my loyal companion in the months that followed. Together we faced the words: brain injury, unresponsive, seizures, low brain activity, coma. Hope seemed to waver at times in some of those who were caring for my husband. One day as I sat at his bedside, I heard one nurse ask another, "How long are they going to let him lie there like that?" During the two weeks my husband spent in a coma, it was often difficult to maintain hope. Hope seemed absent in the small room where the doctor took my father and me. With tears on her face, she asked me to sign a DNR (do not resuscitate) form, explaining that she couldn't imagine my husband enduring more trauma if something else occurred. I depended on the hope I received from my faith, as well as the unwavering support of friends and family during those darkest days.
We felt immense relief when my husband showed signs of coming back to us. The doctor had continually assured me, "He's still in there"...but there were times when I was uncertain. My husband responded with recognition upon seeing the faces of his mother and siblings, but his reaction to me was not as strong. Those first days after waking, when he looked at me, it seemed that he didn't remember me. Eventually, when the nurse asked my husband about his wife, his eyes flew to me. When he was finally able to speak, his first word was the name of our son, who was seven years old at the time.
Hope stayed with us during the next four weeks in the ICU, and through each complication that arose. After more than two months at our local hospital, my husband was transferred to a long-term care hospital to begin steps towards rehabilitation. Hope was a bit fleeting during his 6 week stay at this facility. It seemed as though we were unable to make forward progress, and were all beginning to wear around the edges. Hope returned when he was finally transferred to a third hospital for rehabilitation.
After spending five months in hospitals, my husband was able to return home. We slowly adjusted to the changes he'd undergone, both in personality and physically. By the time we became accustomed to his wheelchair, he was ready to transition to a walker. We rejoiced the day we were able to retire the walker to a corner in the garage. During his hospital stay, and in those first months at home, it was often difficult to recognize the familiar traits of the husband I'd known. I'd first fallen in love with his quick wit and joyful spirit. After all he'd endured, I found myself wondering if that man was lost to us. When we learned that his short-term memory loss would likely be permanent, we struggled to adapt.
Thankfully, hope proved to be incredibly resilient. It stayed close by as my husband made tremendous steps in his journey back to us. In time, our home was once again filled with his laughter. He was able to forge a strong relationship with our son again, through shared silly jokes and fierce games of checkers. Hope carried us through from those days full of chaos and despair to this place of calm contentment.

(I wrote this today for submission to a book that publishes short inspirational true stories)

Grandpa

As far back as I can remember, my grandpa always enjoyed teasing me endlessly. Each time we visited my grandparents when I was young, I took great care to keep my feet far from his fingers.  He still never failed to find an opportune moment as soon as my guard was down to grab a foot and give it a good tickle. As much as I squealed in protest, I secretly delighted in the ritual.
I'm not sure how old I was when Grandpa first discovered that I don't particularly enjoy being mimicked. During every single visit that followed over the years, he never failed to mimic my words or actions.  He always greeted me with the same query, "Has anyone mimicked you lately?"  If I was ever absent from a family gathering, he instructed my parents to mimic me for him the next time they spoke with me.  He took great joy one year in presenting me with a special gift.  He had found a toy parrot that would repeat whatever I said, so that I would not feel neglected while he and I were apart.  Even during our last time together, he asked if anyone still mimics me.
My grandpa possessed an extraordinary sense of humor.  He found great happiness in making us laugh.  His sharp wit was unmatched.  He had a way of making each of us feel special and treasured.
The time spent in our grandparents' home was nothing short of idyllic. We learned early the definition of genuine kindness and concern. We felt safe and secure in the knowledge that we were dearly loved.  This feeling never wavered through the years. They prayed for us in our days of struggle, and rejoiced in our triumphs. Losing them has taken some of the magic from this world.
"...then in a little while you will see me again." (John 16:16)

Paging Nurse Donna

In recent weeks, my caregiving duties have significantly decreased.  I've often had a nagging feeling that I'm forgetting to do something.  No more wearing masks to set up a machine for home dialysis.  No more trips back and forth to a dialysis clinic.  I no longer need to keep track of daily urine output, or change incision bandages.

Over the years, I have gained much hands-on experience in caring for Jason.  The night before Eli was born, I found myself packing gauze into Jason's wound following a surgery.  In the years that followed, I learned to give IV's, transfer Jason from a wheelchair to bed, give nourishment through a feeding tube, test blood clotting time, organize pill holders, check blood sugar, perform peritoneal dialysis, flush drains, and give shots.  I became Jason's caregiver, his advocate, his protector.

While Jason was still in the hospital after his transplant, I received a message from a wise friend.  She wrote, "I pray that God will redeem these years of being confined to home, that your family will be filled with joy and life, and years of serving the Lord."  We are happily adjusting to yet another new normal.  I am determined to bring joy and purpose to our days.  In the past, we often felt limited by treatment schedules, or simply lack of energy.  I honestly feel as though I'm just now emerging from battle.  I believe I'll hang up my nurse's cap for a bit, and enjoy being a mother, volunteer, wife, friend, daughter, worker, sibling, and child of God.

On The Anvil

While Jason was in the hospital, a friend brought me some books to help fill the long hours.  One of these books was On The Anvil by Max Lucado. Eli ended up reading this for his monthly school book report.  He was quite impacted by the lessons, so much so that he asked if he could speak during chapel this morning at school.
The author writes, "In the shop of a blacksmith, there are three types of tools.  There are tools on the junkpile:  outdated, broken, dull, rusty.  They sit in the cobwebbed corner, useless to their master, oblivious to their calling.  There are tools on the anvil:  melted down, molten hot, moldable, changeable.  They lie on the anvil, being shaped by their master, accepting their calling.  There are tools of usefulness:  sharpened, primed, defined, mobile.  They lie ready in the blacksmith's tool chest, available to their master, fulfilling their calling."
At the end of his report, Eli said, "This book shows the value of life.  It shows that there is always hope.  It shows that you don't have to be dusty in the corner of the workshop.  This book probably leaves everyone with the question of which tool they are.  I believe that I am on the anvil."
I was quite struck by his insight.  I've seen such growth in him recently.  Last Sunday he worked up the courage to pray at the communion table for the first time.  This was the second time this school year that he's volunteered to speak during chapel.  Circumstances in our lives over the years have certainly shaped Eli by fire.  However, along the way he's also been forged by the examples and influence of those around him.  So many have stepped in to fill gaps that Jason and I are often simply unable to cover.  There is the uncle who has willingly played the part of bad cop in order to convince Eli to participate in worthwhile activities.  There are teachers who are selfless and inspire Eli to be more like Christ.  He has an aunt and uncle who throw his suitcase in with the rest, and drive him to youth rallies and camp.  There are those who tirelessly encourage Eli to leap beyond his comfort zone.  This mom thanks you from the bottom of her grateful heart.

"In the same way, let your light shine before others, that they may see your good deeds and glorify your father in heaven." (Matthew 5:16)