The Passing of Earl Grey

Perhaps you have seen this Toyota commercial. A camera pans several families and individuals at various stages of life riding in and enjoying their varying model year Toyota Camrys. A mellow masculine voice hints at their stories; “Little Billy grew up in the back seat of one – Tina proposed to Bud in hers – Mary rode to her wedding in her Dad’s and John went off to college in one.” It’s a great commercial. It tugs at your heart because it is true; we live life in our cars.

This morning, as I was cleaning out my grey Toyota Camry (aptly named Earl Grey), preparing to trade it in, that commercial came to mind. I was sorry to think the boys and girls on Madison Avenue missed our Camry life story; Lisa and Anthony found life in one.

In this Camry we made countless rounds of doctors searching for intelligent enlightened care for his mysterious disease. We logged agonizingly long hours to Indianapolis as Anthony gritted his teeth in pain, afraid to move an inch worrying his temporary ostomy bag might not hold. And many a late night snow was hastily brushed off Earl Grey as we quickly loaded up for another run to the emergency room or pharmacy. In this Camry Anthony wrestled with his God and danced a metaphysical two-step with his soul. In this Camry we both cried and prayed and begged and pleaded for God to return Anthony’s health. In this Camry we groped our way through some of the most profound dialogues I have ever been privileged to participate in. And it was in this sleek grey box of steel, hurtling along at 70 mph, that I witnessed the growth of a soul.

Checking all of Earl Grey’s nooks and crannies for anything I might have missed, I wondered who the next owner would be. I wondered if they would be sensitive enough to intuit that something miraculous happened in this Camry – that a life almost lost was saved and that a soul grew up. Would they feel a mother’s exhaustion and worry? Would her prayers linger as a whisper? Would the new owners feel the energy left behind; anger, sadness, wonderment and finally the joy from our last trip home from the hospital when Anthony was declared in remission? Or would Earl Grey, our Camry-often-cathedral, pass away into nothing more than a really good used car?

Little Billy grew up in the back seat of one. Tina proposed to Bud in hers. Mary rode to her wedding in her Dad’s. John went off to college in one, while Lisa and Anthony found life in theirs. Farewell Earl Grey.

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New Shoes

Even though it has been years, it seems like only yesterday that I was taking Anthony shopping for his first pair of dress shoes. After much searching, he slipped his feet into some very sharp looking leather box toed dress shoes with tasteful silver buckles. I thought they looked great; Anthony looked at me as if I had lost my mind. Now you need to understand that when it comes to shoes, Imelda Marcos cannot hold a candle to Anthony’s shoe collection. He had, and still does have, canvas and leather sport shoes for every occasion a young man might encounter in life –shoes with color, shoes with shock absorber-like springs in the heels, shoes that radiate every aspect of his personality, shoes for a special date, shoes and more shoes. But, these glistening stiff leather “boxes” as he called them while gazing at me with dubious eyes, were not going to cut it. He was used to his usual kicks that reflected his personality and he definitely was not seeing his personality in these puppies. In his mind, he was only going to wear them once for a formal family occasion. In my mind (as I watched him clomp around the shoe department in disgust) I envisioned him stepping up in life, accepting more responsiblity, attending more formal occasions as he polished yet another facet of his wonderful personality.

So, the shoes came home with us and Anthony began breaking them in. Up and down the driveway he went, scuffing the smooth shiny soles so he would not slip on slick floors, bouncing up and down on tip toe so the uppers would begin to soften on his feet. It took time to get used to the new look down there at the end of his legs but, eventually, he became comfortable in them and was ready to don the new dress clothes completing his transformation from casual to a more formal, responsible look.  And of course my mother’s heart melted when he emerged from his bedroom, ready to go to that formal family affair, looking like a million bucks and flashing that mile wide smile of his– the same Anthony, yet different – he had taken a step up in life in those new shoes.

Anthony has been spending the last few months getting used to the new shoes life has handed him as a result of his battle with Crohn’s disease. As his reward for a battle well fought, Crohn’s presented him with a pair of sturdy shoes that are tight, restrictive and definitely not his style. But he put them on with many doubts he would ever feel fully comfortable in them. Knowing this pair was not going to disappear, he began breaking them in little by little, one scuff step and toe bounce at a time, learning his new normal as the shoes softened, ever so slightly, conforming to his feet.

These new shoes have taken him to public speaking engagements to educate medical personnel about Crohn’s from a patient’s perspective, to classes to advance his education, to the sides of newly diagnosed Crohnies and to the cemetery as he carried his beloved friend, Bridget, to her final rest and now, straight into a leadership role in the Crohn’s community he helped bring to life. Although these new shoes are getting a good breaking in, we both seem to know deep down that they will always need work to keep them flexible and soft, yet stay sturdy enough to support the long journey they will take Anthony on.

Ready to head out to one of his speaking engagements, my mother’s heart melted once again as I looked at my son, now warrior. Hardened by his battle with a hideous disease, yet softened to the point where he can intuitively read the eyes of a fellow Crohnie. He was fired up, ready to give voice to others like him. Anthony once told me that while he would never want to repeat that year in hell fighting for his life, he said it was a good experience because changed him forever. It did. His comment reminded me of something a wise woman once told me; “Lisa, God does not call the qualified, He qualifies the called.”

There he stood before me, my warrior son in his new shoes, ready to go, flashing his mile wide smile. It was the same Anthony, yet different; he was now qualified for the journey God created just for him.

A Lioness’ Heart

Ever since Anthony began confronting crohn’s disease, my perspective on motherhood has drastically changed. It is from some very special and very strong mother friends that I learned how to be present for him in his darkest hours. It is from them we both learned to never waste one moment of his recovery. Patty, Clara, Barb, Colleen, Kay and Smiljka – thank you for all you have taught me about being a mother; this is for you.

It’s that special day when Moms are honored for all they do. It’s a day of breakfast in bed made by smiling little chefs offering a side of sticky kisses, a day of homemade or Hallmark cards lovingly signed, flowers, brunches, gift cards for a day of pampering, or perhaps just a day of relaxing with those who thrust us into motherhood.

For some I know, it’s a day of bittersweet remembrance as they open that special place in their souls reserved for sons and daughters who left this earth but never left their hearts. For Patty, Clara, Barb, Colleen, Kay and Smiljka, this day takes on a special significance too few of us stop to appreciate or worse, fear will happen to us—losing a child.

After watching some of my friends endure the loss of their sons and daughters, after seeing that indescribable look in their eyes, I have begun to understand the strongest trait that identifies motherhood; it is the courage of a lioness’ heart. From these women and others who have lost children, I learned never to give up during those darkest days of Anthony’s life this past year. From them I learned to fight for him and to protect him with every fiber of my being and to be willing to let go if that is what it would come to. It is from them I learned that our lives are not our own, but God’s, who has a unique plan for each of us whether through this life or because of a life lived. Every life these children touched is forever changed because they walked among us.

While I will never have the right words to say, while my efforts at comfort may be clumsy, I can promise that the sacrifice these mothers have given will never go unnoticed in my eyes or Anthony’s. On days such as this, when laughter and good times abound, he and I will pause and remember Josh, Keith, Scottie, Bridget, Christopher and Zorin. Together, through our work in the Crohn’s community, we will honor the depth of love only a mother’s heart, asked to give the ultimate sacrifice, can know.

This Long and Winding Road

We are on this long and winding road, Anthony and I.  And while we do not really know how we found ourselves on this road – here we are.

At first we felt like travelers suddenly bumped from our flight, strangers stranded in a strange land. We did not know the language, could not communicate with others and money was running dangerously low. Scared to death we would not be able to catch a ride home, we just started walking through the fog on this long and winding road. We did not even know if we were headed in the right direction because there really isn’t a map for this road. Right foot. Left foot. Right foot. Left foot.

With each step we learned a piece of the language. We met a guide who said, “You are not alone.” And one by one, at every bend in the road Crohnies and their caregivers fell in step to walk beside us; they told of their journeys on this long and winding road. Eventually the fog lifted and we started seeing others on the side of the road looking as terrified as we felt when we first stepped foot on this life path – we beckoned to them. “It’s OK. We got bumped, too. We’re all here. We’ll walk with you.”

So, every day we get up and we walk and give thanks that we are still walking. Recently, the morning after we learned of Bridget’s passing, Anthony was declared in remission. He was saddened that he couldn’t share this news with her; he was shaken to the core and burdened with survivor guilt as he helped carry her to her final resting place. Right foot. Left foot. Right foot. Left foot. No matter how heavy your heart’s burden is, you keep walking. Right foot. Left foot. That’s how you make progress on this long and winding road.

Today, we rounded yet another bend on this long and winding road. We stopped long enough for an infusion. For many Crohnies, an infusion is sort of like stopping to tank up before you head off down the road again. Those at this stage of their disease have internal gauges that read E about every eight weeks, so they tank up. But from his last infusion to now, Anthony’s gauge hit E long before it should have and there was a trip to the ER – meaning remission is a fragile thing. Calls to his GI specialist, his GP – medications ramped up, doses of vitamins added – “Watch for signs on the road,” they said. “Wait and see.” Right foot. Left foot. Right foot. Left foot.

On this road Anthony almost lost his life. On this road he wrestled with his God. On this road he watched his mentor’s life slip away on the exit ramp. On this road he found an amazing community of Crohnies and a life purpose. On this long and winding road Anthony was forever changed.

Collateral Damage

We all know what collateral damage is. Collateral damage is the nice way of saying that someone, or a bunch of someones, became the unintended causality of a war. Talking heads on the evening news roll these words, collateral damage, across their lips as smoothly as if they were licking double chocolate fudge ice cream from the corners of their mouths – “ . . .The collateral damage was expected given the situation. And talk about unexpected situations! How about that blizzard out East, Al?” Collateral damage is easy to overlook.  In the segue reality is forgotten.  Do you think that perhaps the fallout, the consequences of war, are less real if we call it by something less threatening?

We recently lost our most stalwart warrior in the war on Crohn’s Disease. On the battlefield of this war, the war Bridget so bravely fought; collateral damage took many forms from strained relationships with medical personnel, to a promising life taken too suddenly and too soon and everything in between. But of all the damage done on this battlefield, none is more compelling than the precious little family left behind – her husband, Jeff, and daughter, Bailey. Collateral damage.

It was my privilege recently to share a meal with Jeff’s aunt who told me Jeff and Bailey’s story, of their days immediately following Bridget’s passing. Hearing her words, feeling her words, tugged at my heart. All I could think of as I tried to grasp the enormity of what she was telling me, of what they were dealing with, was that my comprehension was falling pitifully short of the reality – not fully grasping it all, going unconscious under the gravity. Collateral damage.

I could only visualize Jeff, carrying Bailey, as they walked slowly behind her casket – down the same isle Jeff and Bridget joyfully walked on their wedding day. It was compelling. It was truly mournful. I thought this adorable little girl, with a headful of curls, would not have her mother walk her to school on the first day of kindergarten, or help dress her for her first date or for prom, or help heal her first broken heart, or dance at her wedding, or hold the children she will one day birth – and I cried for all the life stories yet to be for this family. Collateral damage.

I wondered what Jeff was thinking as he made that journey, escorting his beloved and brave wife for the last time. His battle now is cleaning up the debris a severe and chronic disease leaves in its wake – mountains of bills in amounts that take your breath away, dealing with unthinking people on the other end of a call, how to explain it all to Bailey, how to just get up every morning and go to work, how to put the right foot in front of the left, how to even breathe underneath the weight of it all when you are so young and have so far in life to go. Is there a light at the end of his tunnel? Collateral damage.

His extended family. Bridget’s extended family. Their friends. The Crohn’s community. What could have been. Collateral damage.

It’s easy to see now, why some spin doctor in some political war room didn’t want us to think about the consequences of war and why a non-descript, benign tag was applied. It is because the reality is a hideous, distorted, freakin’ bloody mess that we’d rather forget dealing with because it is just too hard and we do not want to be held accountable for any of it. And if we did really think about it, about what collateral damage really is, then we would be compelled to help and we would have to make sure, with all that is in us, that it never happens again, to anyone, anywhere. Ever.

It is time now to pick up where Bridget left off and to work toward a cure and spread the word, educating all who will hear. It’s time to keep reaching out to Jeff and Bailey and their families in very real ways, letting them know they are not forgotten and that we will love them for Bridget and because of Bridget. We will not allow them to live in our hearts and minds as collateral damage.

About Bridget

Every once in awhile a spiritual teacher crosses our life path, a person of other – worldly depth and wisdom; such was our friend Bridget. Some were fortunate enough to know her for a lifetime. We knew her for only a year but in that year, in that nanosecond on the continuum of eternity, she gave us a graduate degree’s worth of knowledge about what the Bible refers to as, “Fighting the good fight.” You see, Bridget lived with Crohn’s disease; it was one of the worst cases I have ever seen or read about and her life mission was to make sure no one suffered as she had at the hands of medical practitioners who failed to understand the nuances of this disease. She had to live with the results of their misinformation and ignorance. Bridget died on the eve of her 29th birthday, her  4 year old beloved daughter, Bailey, husband, Jeff, and her mother at her side. She passed only moments after she and Anthony had been having fun texting each other about the strange dreams hard core medication often provides.

On the day we met her, Bridget was holding court in her hospital room, her devoted mother and aunt at her side; a nurse was adjusting the myriad of pouches and tubes comprising her IV cocktail so that everything would course smoothly into the port near her clavicle. Physically, she looked tired and beat, like a prize fighter limp on his stool in the corner of the ring between rounds. But when she looked up and smiled at us the room was transformed. In that moment she welcomed us not only into her corner of the ring, she welcomed us without question or judgment, especially Anthony, into her heart. He never let go of the emotional life line she gave him that day; it was how he learned to fight his battle with Crohn’s.  Life school began that day – Bridget the teacher, Anthony her student. They became fast BFFs, soul mates, fellow fighters with others in her life in the battle to educate doctors, nurses, anyone, about this mercurial, mysterious disease that attacks young bodies. She was our poster child yet  5 star general, the face and strong voice of  the Crohn’s disease battle in Indiana.

Bridget would have been so happy to see all those who came from around the country to pay her tribute, to acknowledge what she had accomplished in 28 short years. The funeral home was packed, not a single open spot in the parking lot remained; from small children to community leaders, the Crazy Crohnies to the healthy; they came by the hundreds all afternoon and into the night – and they all bore the same message– that despite being in a battle for her life, Bridget always had a smile that lit up the room, that she never gave up hope, that she fought the good fight.  Because Bridget led the charge, a cure for this hideous and often invisible disease is one step closer to reality.

Today, as winter winds blow and snow swirls in the brutal cold, we will gather to lay our Bridget to her well deserved rest knowing her earthly body is but a shell and that in heaven, the port and the unrelenting pain is gone; that her weight is normal, and that on her 29th birthday she danced in heaven with her God.

A Christmas Letter

It’s that time of year when mailboxes are full of Christmas greetings and well wishes for a prosperous New Year. Some of those cards contain annual family newsletters; my mailbox is no exception to all the holiday greetings.  Two of my friends are wonderfully creative with their letters and I look forward to them when the snow starts to fly, actually passing them around to friends who stop to visit with a, “Hey! Check this out! Is this family a hoot or what?”  Others I read and, while happy for all their glowing successes, wonder – does life ever challenge them? Is life really this sugar coated and perfect? Why is it they never seem to have a problem to overcome or a testimony of triumph to tell?

Over the years, as a struggling single mom, I have been tempted to write one of those letters just so others would get a glimpse of what the other side of reality looks likes during the normal course of the year. This year, as a mom (still single) and now a caregiver, I decided to write a Christmas letter in gratitude and with thanks to my God for bringing Anthony and me through what was unquestionably the crappiest year we have ever had. Hopefully, readers will embrace it for what it is – a testimony of triumph and a nod to the power of love.

Dear Family and Friends,

Merry Christmas! The Greco’s hope this letter finds you well and happy as you gather with your loved ones. What can I say about this past year that you, as a faithful reader of the blog and prayer partner, don’t already know?  Perhaps my deepest thoughts about it all? Well, as has been written, it was the best of times; it was the worst of times.

 To recap, in case you missed an installment, Anthony came close to death, twice. So close that my heart was shocked into a state of numbness, my breath ripped from my lungs with all the velocity of oxygen being sucked from a punctured airplane cabin at thirty thousand feet. My life force drained as I sat by his bed trying to make sense of it all. This state of existence went on for me, non-stop, 24/7, for fourteen months; not one moment of anything different – high level, constant, non-stop  adrenalin stress rushes. Anthony’s life was flattened on every conceivable level and I was helpless as all he knew collapsed like a house of cards – health, employment, finances, and matters of the heart d.o.a when the love of his life was called upon to endure a short term inconvenience.  It was all gone in the twinkling of an eye and I was left to wonder what in the heck God was doing to a kid who had only been good and loving to all who knew him. It made no sense. In the deepest pain of my heart, I could not see God. I was pissed. It was the worst of times.

But people rallied. They prayed – unceasingly. They loved us. They gave when the gas gauge hovered above E. They put food in the refrigerator. They paid a bill. They tucked money in my hand. They gave hugs. They found ways to encourage Anthony and uplift his spirits in ways I could not. They taught me what it meant to be a caregiver. And then, one day I looked up from the deepest pain of my heart and there He was; I saw God. There He was looking every bit like Trudy and Jeremy, Clara, Amy, Carol and Wes, Ed, Justine, Joleen and Richard, David, Tony, Eric, Bridget, Carolyn and her Bible Study ladies, the Chinese Church in Chicago, Terry and Rebecca, my walking buddies from the Grove,  my church family, my family, my newly found CCFA family, Anthony’s medical team, his therapist, hundreds of people lifting Anthony in prayer and healing light and others I’m sure I don’t know about now, but will meet one day in glory.

You see, it would have been easy to default to trite platitudes of, “God will provide” and hope it would be so, but hope is not enough in situations like this. No. You have to KNOW in the very DNA which gives life that God’s intention is only the highest and best for each of us and that He does not call the qualified but qualifies the called. It is a far more powerful and empowering experience to be hit smack between the eyes with absolute KNOWING.  I now know, that I know what I know. I have learned, in my nano second of enlightenment, that God never abandoned us and that His ultimate plan for any of us does not include illness or a “less than” existenence as a permanent state of being on this physical plane. Illness is not an act of retribution by the god many would have us to believe.  No, I feel strongly the plan is about finding reason, meaning, and purpose for everything that happens to us, even a dire life situation. Life is about finding out what that reason, meaning or purpose is and then doing some good with it in the world vs. waiting or whining or whimpering about for the answer to be handed to us. And while my take on God may seem a laughable one to some of my colleagues, given the couple of advanced degrees in theology I hold, it is apparant many of them do not walk their talk because by their fruits you shall know them, right?

 God is in each of us, from the doctors who worked feverishly to restore Anthony’s health, to the housekeepers who cleaned his room everyday, to every person who offered a prayer, to this bone weary mother praying without ceasing and crying herself to sleep– He was there and He still is and He always will be because He is in me and all others who believe. Imagine what this world would look like if each person understood, really understood, that they have the capacity to express God, the Most High God, through every waking moment and through every action of their life? How would we all act? Would we be shooting each other? Bombing each other? Fretting over whose taxes get raised? Wondering if Honey Boo Boo gets another season? Keep throwing each other under the bus? Feeling inferior because we don’t have granite countertops and vacation homes?  Or would we rise to the level of the Divine capacity within and shine like the sun? Would we wipe away tears, lift a burden; reach out at every opportunity to do good and acts of kindness no matter how small or unseen?

Yes, it was a heart wrenching crappy year for sure, but Anthony is on his way to remission and for that I have no words to express my profound gratitude; my mother’s heart only knows to sing praises that would be held captive if left to mere words for expression. Yes, it was a hard year for which Anthony says he would not change a single thing because it turned him into a better person.

It was the worst of times; it was the best of times.

Merry Christmas,

Lisa