With Thanksgiving

It is a Thanksgiving like no other.  Anthony has survived a year in hell, emerging like the iconic phoenix from the ashes. There were moments this past year when I did not think he would make his 26th birthday earlier this month, but he did. His health is a gift from God for which there are no words so all I can do is relax into the presence of the Divine with deep joy.

As the traditional aromas of sage and pumpkin waft through my home on this special day, my mother’s heart fills with gratitude and appreciation for all those who stood by us, supporting us, encouraging us, praying for us, loving us. We would not be standing in this moment if it were not for each of them. Today, the simple act of peeling potatoes for Anthony’s favorite comfort food, mashed potatoes, becomes an opportunity to offer prayers of thanksgiving, recognizing each soul that has crossed our path bringing their unique gifts and talents to the healing process.

Anthony has enjoyed a month or so of normalcy, living once again like a happy young man. He has made new friends and has blossomed in ways I never expected. While we still have a reversal surgery to deal with next month we are thankful for where we are now. We are confident and blessed; knowing that so much good has come from this experience and that much more will follow. We have learned to trust when we could not see, to have faith when we knew not where we walked, and to believe in the power of love.

For me, for the first time, I truly know the meaning of the words, Happy Thanksgiving.

The Eye of the Storm

I recently watched an interview with one of Hurricane Isaac’s victims. An exhausted, frail and very sad woman stood in front of her devastated home, the ragged remnant of what was once her life. Blue skies overhead and balmy breezes belied what was to come; she was in the eye of the storm.

She told the story of how the storm hammered her home and thus her life. It did not care that it wiped out all she knew, hurling her and her loved ones to and fro with an indescribable fury, slamming them all into stunned silence – shock. And then it stopped.  For the moment it was rather peaceful but she knew what was to come; the storm was not finished with her yet. Standing there trying to wrap her mind around the reporter’s inane question – “How frightened were you?” I could sense her fear; it was primal, visceral, and real.  There, in the eye of the storm, she had but a short window of time to assess the damage, salvage what she could, and muster her strength before insanity rained down on her and her family again. Her eyes, boring into the reporter like a Black & Decker drill spoke volumes – “You’ll never know until you’ve been there, Honey. You’ll never know.”

Except for a five hour stint in the ER this week, Anthony has been hospital free for over forty days now. His infusion treatments are kicking in; he is gaining weight. He is reaching out and socializing again with his friends – small forays of fun, but forays just the same. He is in the eye of the storm. While we know there will be challenges ahead, especially after they put him back together later this year, he has a long road ahead working with his medical team to find his new normal.  We are taking this time of relative calm to look back, assess what the heck happened, and then to plan ahead as best we can. Every nook and cranny of his diet and lifestyle is under scrutiny as we search for the slightest threat to his compromised health. It is pretty much a crap shoot with this disease – you just never really know when the eye of the storm will pass or what is going to happen, or when it is going to happen or to what extent it is going to happen; so you do what you can in the moment and you do it in blind faith.

In the eye of the storm Anthony is not tethered to an IV, bound to an alarmed hospital bed where he can only peer at the outside world from a 6th floor hospital window. He has started putting his life back together, physically, spiritually, and emotionally. His house has been redecorated, representing his new beginnings – an outward manifestation of what is going on inside – a re-creation. He revels in the occasional cheese pizza, a food now severely limited for him, and he is back to leaping excitedly from his chair when Payton Manning throws yet another amazing pass. We are working together with Trudy, Bridget, Amber and Jo to build a Crohn’s community in our area; we look forward to our first fundraising walk just days away. He is, once again, on speaking terms with God.

The other day I watched him standing in our garden. I watched him lift his face to the sun, close his eyes and breathe deeply; I could see his soul reconstitute itself as he did so. Then, snapping on his trusty Yankees hat he flipped the bill to the back, donned his Ray Bans and headed out in his Jeep with a rightful, well-earned swagger.

It is only a matter of time when you are in the eye of the storm.

Imagine

I have just come from Anthony’s hospital room where he was finally able to drift off to sleep but not until after a Xanax and a very emotional day over which he had no control from where he lay. This was the day his  ex-girlfriend’s (as he now refers to her) belongings were finally removed from his house by a group of people close to him. Between insane trips to the hospital chasing an infection and more pain, it has been an unusually hard past few weeks for Anthony. It has been complicated and knotted up in the drama of his beloved’s  announcement that she wanted to move on and gee, oh  so sorry that her timing was bad. Every abandonment issue his father “gifted” Anthony with reared up with a vengeance. Once again my heart broke right along with his.

Imagine that you are in his shoes or better yet – his oddly colored beige maybe more sort of a mustardy yellow colored hospital socks with the rubberized bottoms designed to help prevent falls. Imagine that one day you wake up to find your life changed forever because of a medical diagnosis. Imagine going to work on the nightshift at a job you really liked, but that you worked while is great pain because you were afraid you would lose your job. Imagine trying to keep your energy level high as it rapidly, uncontrollably, oozed from your being. Imagine getting up each day to find your once muscular and tanned body consume itself before your very eyes and you are only 25. Imagine the shock of waking up after surgery to find a bag of excrement stuck to your side. Imagine that the one who said she would love you forever changed her mind and left you with all the warmth and tenderness of an iceberg.

I am not looking for sympathy here. I know, we all know, that broken hearts eventually heal. I know millions of people live with ostomys.  I know Crohn’s can be a manageable disease for many and it may well be one day for Anthony, but right now it is not; he is slowly learning to live with it. This is a disease with no cure nor rhyme or reason. What I am looking for is for the readers of this blog to understand that other’s like Anthony, be it Crohn’s or cancer or Lou Gehrig’s disease, live in a world where love is the best medicine of which they need massive doses plus an army of support – physically, mentally, spiritually, emotionally, and financially. They need all those they know to genuinely love them into a place of peace of mind and safety; they need you to be there for them no matter what, no matter how messy it gets, no matter how cranked out they are, no matter how dark the horizon looks. They need people around them who will not flinch.

I am asking you to support Anthony and others with Crohn’s by signing up today to walk with Team Greco on September 16 th here in South Bend or to form a team of your own to walk or to simply donate or to just show up and wish him well on that day. It would lighten his heart to know others care enough to do something, anything to help the Crohn’s Colitis Foundation of America to find a cure.  To learn more and to sign up please go to:

http://online.ccfa.org/site/TR?team_id=113674&fr_id=3151&pg=team

Once there, just click on the box to the lower right where it says, “Join Team” or to the right side to make a donation.

Imagine there is a cure.

In the Land of Uz

Job lived in the land of Uz. Anthony lives in the land of Here ‘n Now. Job, the Bible reports,was blameless and upright; he respected God and shunned evil. Anthony, though not having attained the Biblical credentials of Job (but definitely a human of note), is described by all who know him well as a good and decent person, compassionate and kind, hardworking, a person who shuns evil. While he comes from strong religious roots and was raised in a good church home, saved, baptized and a leader in his youth group of many years, he is not, at the moment, exactly happy with God.  As his mother and one who studies theology for a hobby, I have to say that I understand, given what he is dealing with, why he wrestles daily with his God. I would think it unhealthy not to do so. And from my limited point of understanding about the vastness of God (Who can know Him?), I have to say that I think God welcomes and can handle the rage of those to whom an unforeseen life burden has been assigned – a burden that would cause others to wither on the vine of intestinal fortitude if they were so planted. I have read and re-read Job, chapters 1 & 2, as I sit at Anthony’s bedside trying to figure out that bizarre conversation between God and Satan.

That written account lacks a much needed opportunity to observe body language and hear the tone of voice in this life altering (for Job) conversation. I really think we might all have a whole other level of understanding if we could watch the hidden camera version. Well, the result of that conversation, for those of you who have not read it yet, is that God allows Satan to destroy, no – obliterate Job’s life as Job knows it, as if it were just a bet between them, to see if Job will react in a very human way by crying out in anger against God. What is that all about? So?! What if Job gets ticked? Is God so insecure that He can’t handle someone being ticked off at Him? Does God think Job is but a mere casino chip in a cosmic wager? I shake my head in wonder as I move slowly through this book trying to understand why God, as depicted in the Old Testament, would intentionally inflict such horror on one of His creations. (To my learned colleagues on campus – no need to send me your commentary on Job; I need to figure this one out myself – as does Anthony. And with all due respect, unless you are in the middle of a mess like this, I’m not going to hear much of what you say anyway. Sorry.  Love you. But that’s just the way it is.)

So, the chips go down and the story goes on. Job loses his wealth and income in the form of all of his flocks being killed off. His entire family is killed, except his wife, who is no help at all in all of this (given her behavior and outbursts through all this, I have to chuckle to myself thinking Satan did not bump her off as she played a huge role in the horribleness of it all). And just when you think it cannot get any worse for this poor guy, God gives Satan the “go ahead” to inflict Job’s body with festering boils.  Nothing like kicking a guy when he is down!

Well, like Job, Anthony has lost his income and we have no idea if and when he will be healthy enough again to hold a job that will support him. Like Job, Anthony has lost the one close to him – his beloved Samantha has decided to move on in her life. And just when you think it cannot get any worse for him, his lack of an immune system has left his system wide open for the infection that now plagues him AND one of his newly prescribed medications is causing his skin on his frail frame to erupt in all sorts of interesting ways.  YO! Can we catch a break here, God?

There are two things I have learned so far from my readings in Job. First, (keep in mind this is a lesson in process ) I am learning to be a better listener. Job had some friends who came to see him, to console him. For seven days and seven nights all they did was simply sit next to him in the ashes, saying nothing, just being present as Job scraped his boils with a shard while trying to figure out the whole insane situation. I hold this image close to my heart especially when Anthony pleads with me to “Just listen, Mom! Stop trying to fix it!”  When Job’s homies finally do speak, they speak as well intentioned friends who, in their own way, try to support Job – it backfires big time – lesson being it is better to just sit up and shut up when I have no clue whatsoever as to what it is like to be so destitute as to sit in ashes and sackcloth, covered with boils, grieving the loss of all I knew and loved.

Second, I have learned when your life is leveled like Job’s and Anthony’s, it is an opportunity to rebuild it bigger and stronger.  I believe we are given experiences for a reason and that it is up to us to use those experiences to help others who will cross our paths in the future. Anthony is in an excellent position, as a result of this experience and along with his personal skills and smarts, to be one amazing Crohn’s counselor or healthcare worker if he so chooses. This experience is worth a thousand internships and an advanced degree. And if that’s the truth, then I do not believe God wagers with The Dark Side to see what will happen when we are hit with personal tragedy. Rather, I prefer to think of God in this situation as a great teacher, who, upon seeing His student ready, gives the mother of all assignments in the hopes the student passes and goes on to become a teacher  of life themselves.  It has to be. It’s the only thing that rings true in my soul. It is the only explanation that gives me hope that all will be well one day soon,  ever reminding me of something a very wise person once told me; God does not call the qualified, He qualifies the called.

Job’s story has a happy ending – at least as happy as a story can get when the path to get there involves dead loved ones, collateral damage and other assorted calamities.  God blesses Job with fortune and love far more than he lost.  I can only pray that Anthony’s story will end in the same way.

On the High Wire

We had made it just over three weeks from Anthony’s last stint in the hospital to this one. During that time he had even worked up to eating real food, the solid stuff, food he craved like Chewy Chips Ahoy cookies and pasta.  He had gained back six precious pounds. Surely, we thought, the worst was behind us. Then, a couple of days ago at about 1:30 in the morning, I was jolted out of a sound sleep by an all too familiar scene; Anthony had made his way to my bedroom and had collapsed on the floor next to my bed in extreme agony – it was another intestinal blockage. How could this be? No! He was doing so well.

God seems to know that I process things like this through metaphors and this time was no different. In the middle of my son’s cries of anguish, in the middle of me trying to find the light and some clothes, I got a cosmic download.  For me, getting these downloads is like the movies when something significant happens and the scene flashes back to an earlier time in the character’s life; my mind flashes to something that ends up being my coping metaphor, the “visual” if you will, of what is happening in a way my mother’s heart can understand because I just do not have words to describe what it means watching my beloved son fight this battle while I can do nothing to stop it.  This time my mind flashed back to a family outing when I was six; it only took a nanosecond, but I understood.

My parents had taken me to the Ringling Brothers Barnum and Bailey Circus – the real deal – three rings of astonishment and wonder wrapped in wafting aromas of roasted peanuts, popcorn and cotton candy; three rings all swirling at the same time to loud zany calliope music, colorful clowns and huge trumpeting elephants. High above it all, the crème de le crème, the best of the best – the high wire act. It was sensory overload for a six year old. I remember my little neck getting stiff from dropping my head way back so as not to miss a single step taken by those beautiful, glittery, sequin and spangle covered people holding long willowy poles to help keep their balance. With their toes gingerly pointed forward, cautious steps were taken, inching along, inching, inching. I didn’t dare breathe for fear that my six year old breath would become a gale force wind that would topple the daring people walking on air above me. My little mind could not fathom what would happen if they fell; fortunately, if they did, their rescue team was right there to pull them from the safety net spread beneath them.

Anthony had plummeted from the high wire we have come to call his battle with Crohn’s disease. Narrow, fragile, precarious and with no room for error, my son daily walks the high wire, the safety net below held by his medical team, the hospitals and his loving support circle of family and friends. He had made it quite a way across the high wire these past three weeks before falling. Hopefully, each time he climbs back on he will make it farther and farther out along the wire, clutching his willowy pole of courage for stability as he inches along to the other side – remission.

Still half asleep but not missing a beat, I stumbled around my tiny bedroom pulling on clothes, trying to focus my ever blurring vision and shooting questions at him –When did the pains start? Can you walk? Do we need an ambulance? His answer was the same to each question; in anger and pain he responded, “I need to go to the hospital!” Now somewhat presentably dressed (I later realized my t-shirt was on backwards), I helped him down to the car and we were off; thank God there were no cars on the street at that hour as we sped toward the incredible people who would pull him out of the net and set him back up, once again, on the high wire.

Cicadian Rhythm

Click. One one thousand, two one thousand, three one thousand, four one thousand, five one thousand, six one thousand, drip, drip, drip. Click. One one thousand, two one thousand, three one thousand, four one thousand, five one thousand, six one thousand, drip, drip, drip. Click. One one thousand, two one thousand . . .  The soft modulating sound emanating from Anthony’s I-Med regulator that controls his IV’s and the white noise from the room’s air filter are the only sounds in the room as we enter into Day 7 of the battle. Anthony is asleep. Only the night light guides as I tip toe around his bed to my post in the corner. Sleepy eyes open slightly and he whispers, “Morning, Mom,” before drifting back to sleep. As I backtrack to his bed to kiss his forehead my Motherly Third Eye quickly scans his body, checks his face to see if sunken cheeks have filled in any more, observes skin color; he looks good. Thank you, God.

I have just come up from one of the three sleeping rooms the hospital keeps hidden for stressed out family members and for which I am extremely grateful. It’s obvious it was a good night because of the amount of medical debris left from the night shift – cellophane packs, needle guards, extra tubes, gauze wrappers, tiny rubbery blue things. Not much here to speak of compared to the previous nights’ fragments which at times have been mountainous; the smaller the pile, the better. The debris is left behind after a crisis moment when the Call button has been hit and nurses rush in to calm the pain that doubles Anthony’s  retching, hacking body into a fetal position.  Bodies bend over him, packets are ripped open, IV bags are checked before the line is opened to accept relief from syringes, tubing is adjusted, voices ask – “How we doing, Anthony? Are you feeling it yet?” In their exacting haste, they don’t think about the debris and so I have learned to read it – I can tell how many of those crisis moments he’s had by what is in the pile; I am glad they leave it all behind for the morning shift to clear away – it is my oracle.

It is my oracle and today, it is also sign of hope; if he had a good night, it’s the first in a long time so perhaps we have rounded the corner. Just to make sure I check with his night nurse who assures me he had a good night and slept well. Thank you, God.

It is hard to know what this day will bring, but I do know that whatever it is, it will be one step closer to health for Anthony – hard fought and hard won, but nonetheless a step closer to health. And so as I quietly, slightly, open the curtains  to welcome the morning sunshine and settle into my chair to wait for the doctors to make their rounds, I link my circadian rhythm to the pulse of the room, watching, waiting, praying, keeping vigil and giving thanks knowing that God’s plan and vision for Anthony is health and peace. Click. One one thousand, two one thousand, three one thousand, four one thousand, five one thousand, six one thousand, drip, drip, drip. Click. One one thousand, two one thousand, three one thousand, four one thousand, five one thousand, six one thousand, drip, drip, drip. Click. One one thousand, two one thousand . . .

 

 

 

Teflon Love

The anger rolls off him like heat waves on a stretch of blistering hot dessert highway; you can see it, feel it. As the squeaky wheel on his IV cart announces our presence in the fifth floor hallway at IU North Hospital, Anthony turns his head slightly to answer my question about his walking goal for the day. Without making eye contact he tersely snaps back; “No. She said I only had to do four laps. I don’t want to talk, Mom.” He trundles on, anger waves undulating off stooped shoulders that now bear the weight of a chronic disease life sentence. I follow behind as the IV cart slowly moves ahead of his cautious steps. I bite my tongue.

My daily “go to” prayer begins – “Lord, help me to remember it is not me he is mad at, but the Crohn’s. Please help him to start seeing and appreciating all the good things that have happened to him and for him even in the midst of all this craziness. Help me to teach him to count his blessings.”

I pray this prayer I don’t know how many times a day. I pray it when he has bitten my head off for the 100th time that day or whatever day we happen to find ourselves in, or when he has been terse with a health care worker and when he just cannot seem to imagine that there are those worse off than he is. I pray this prayer when I am so bone tired and scared I want to scream. I pray it when I am about to smack him upside his head because he cannot, will not, find one iota of positiveness and blessing in his situation when I can clearly see dozens and dozens of blessings that cover us daily.  Why can’t he see those blessings, too? Will he ever?

A scene from an old Bill Cosby show plays in my head as we round the corner of the hall: the scene where Cliff Huxtable (Cosby) is mad at his son, Theo (Malcomb Jamal Warner), for something and Cliff says; “Don’t forget. I brought you into this world and I can take you out!”  A smile crosses my lips as I remember that show; I know the feeling Cosby’s character is conveying – parental frustration that only comes because we are farther down the road of life than our children are and we are trying to save them from the pitfalls we know are in their path.

I have come to learn that this type of anger is not personal and that Anthony is in survival brain mode right now. He has been handed a sentence that no one wants and he is only twenty-five. He is royally pissed. He wants to be home doing normal things like riding in his new Jeep, having fun with his girlfriend,  going to work, hanging with the guys and playing Halo. That’s all. He wants his life back – but he can’t for now and it is this that makes him angry at the world, God, and everyone else he comes in contact with. He has pulled himself inward and set a thorny hedge of anger around him that only the lovingly brave dare tackle. So, countless times a day, his doctors, nurses and I throw ourselves at that hedge, getting scratched, scuffed and scoffed at in the process because we know there is a new normal for him and we are all committed, thorns and all, to helping him see it. We are undaunted.

The hardest part of this journey for me so far has been learning that every tool, save one, in my parental tool box doesn’t work when your child is in this situation; the only one that works is love and even that has to be modified somewhat – sort of like buying the “contractor grade” of tool at Lowe’s instead of the homeowner version. Love has to be amped up to what I have come to call, Teflon Love. Teflon Love can take anything you sling at it yet remains unscathed. Teflon Love can stare down demonic forces and not be fazed. Teflon Love can hold a pile of outrageous medical bills and know that somehow they will be taken care of. Teflon Love can gaze upon the seemingly ever diminishing body of its beloved child and see through to robust health. Teflon Love can take the F word and icy hostile stares of anger because it knows love is the safe place for those feelings (which are normal under such conditions) to find sanctuary and eventual healing. Teflon Love is warm and mercurial; it repels all negativity by adapting to each moment like a warm blanket wrapped protectively around trembling shoulders. It generously gives what is required; it asks nothing in return. It flows soothingly across wounded hearts, souls and bodies that eventually rise to give testimony to the healing power of Teflon Love.