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.

A Trilogy

Earlier this week Anthony and I returned from Indianapolis where he had his surgery.  This blog entry is  a trilogy of thoughts I had as we prepared for,  journeyed through and returned to face our “new normal.” I have held off posting it until today, Mother’s Day, because while fighting this battle with Anthony’s Crohn’s disease I am learning there is a whole other level to motherhood.

Posting today gives honor and love to my mother friends who have lost a child or who stand tirelessly by their chronically ill child; in doing so, these extraordinary women have modeled for me what it means to be inducted into this special realm of motherhood – no matter what age their child is. These courageous women have lovingly opened the door to a place of special knowingness, a place where only the heart can fathom the impact of a battle such as this. It is a place where the soothing balm of their words, “I know” flows from their lips and heart filling my soul.

Packing Hope –

I look down at the jumble of items on my bed and wonder what I really need to pack for this part of the journey; I’m not sure.  Well, definitely the jammies and undies, a couple of pairs of jeans and tops, my comfy blue cardigan with the big pockets to hold a myriad of things like tissues, cell phone, mints, a bit of money for the coffee shop at the hospital, spiritual reading material and a bit of make-up so that I don’t scare the snot out of the nursing staff at 2:00 a.m.  I cannot forget the massive red binder in which I have stored the medical and financial history of Anthony’s battle so that I can check and record information against the doctors’ records; in it goes.

The yawning canvas weekender bag I bought from Chico’s a couple of years ago for happier travels easily accepts my offerings.  Plenty of room left.  I peer inside –almost in a numb trance, moments pass and my mind races.  So this is it – this is what you pack for battle – comfy clothes and binder full of information?  Then I remember.  Reaching down into the deepest part of my heart I grab a handful of hope, bless it and gently tuck it into the pocket of my blue cardigan.

Bedside Manner –

Room 333 is nicer than the last hospital room we were in. This one has more of an executive feel – mahogany trim, little glass tiles accenting the natural stone tiles in the bathroom and the strangest toilet I have ever seen – obviously created to accommodate the various sizes of posteriors that will grace it. Soon the mahogany panels on the side of the door swing open and Anthony is wheeled in, groggy from surgery, but alert enough to know where he is and what is going on.  Minding the IV tubes, I reach across the bedrail and take his hand; my other hand strokes his forehead – “I am here. I love you,” I whisper. Not able to talk yet because the vent tube from surgery has roughed up his throat pretty bad, his lips form the words, “I love you,” back to me. His eyes plead with me to make the pain go away.  I am helpless.

As I hold his hand, I silently pray a prayer I am sure God has heard a billion times upon a billion times and in languages and dialects as vast as the span of life on this planet; it has surely echoed through the ages ever since mothers have had children . . . “Please God, heal this child. He didn’t ask for this; he doesn’t deserve this. Let it be me instead of him – this is my baby – please heal him. Please.”

With Each Step –

It is time to go home. The ileostomy is done; now we wait for the internal healing process to complete. With promises of a surgical reversal once the internal healing has occurred, we are loaded up with information booklets bearing titles like, So, You Have an Ostomy(!) and flyers touting the joys of Jell-o (it is a “yawner” so don’t bother reading that one), cards with numbers to call if there are problems, extra supplies, stuff and more stuff.  The discharge nurse wants to know if we have any questions – we don’t. We do not have any because we so new to this part of the journey we do not even know what to ask. I am sure we will have them at some point though. Anthony just wants everyone to shut up so he can go home.

A young man with very cool dreadlocks and pushing a wheelchair for the trip down to our car arrives; he chats easily with Anthony quickly finding out during the elevator ride they have something in common – Halo.  For the first time in quite a while, Anthony flashes one of his million megawatt smiles as he anticipates meeting his new buddy on-line for a game; they swap their gamer names and make plans.

We pack Anthony’s ever frail frame into the car for the trip home – almost four days ahead of schedule. God was good. The surgery showed Anthony’s intestines were in better shape than anticipated and so it seems that Hope I packed came in handy.  As we pulled onto the traffic circle and headed back to the highway, I knew God heard my prayer before I ever prayed it – the healing had begun before the surgeon even got inside to look and while I knew we still had a long way to go with many more steps to take, the next one would be easier than this was.  I know He continues to show up and walk beside us with each step.