Eight Days a Week

We are just starting to recover from eight life altering days of a Crohn’s Disease learning intensive; our first lesson in what I am sure is a Masters level course with lessons in vigilance, patience, love, the tenacity of friendships and the power of prayer.

On February 9^th, Anthony was no longer able to endure the pain of the Osteomyelitis despite pain medication and typical antibiotics.  In agony, unable to stand upright, febrile and becoming disoriented from lack of sleep, he was finally seen by an infectious disease doctor who took one look at him and said Anthony must be admitted immediately – immediately.  And so after a frightful few moments in his office as I held Anthony, comforting him while countering his fears of a hospital and needles and assuring him he was not going to lose his job or die, I gently nodded to the doctor over Anthony’s trembling shoulder to begin the admittance process.

For the next five days Anthony was heavily medicated to relieve the raging pain while heavy doses of strong broad spectrum antibiotics flowed to his veins from the three and sometimes four bags hanging above him, an antibiotic cocktail. For the first time in weeks, his exhausted body knew sleep.  Family and friends briefly came to show support but intuitively knew to then give Anthony space to heal. Whole churches prayed for healing. Anthony’s beloved Samantha and I kept vigil, rotating in and out so that we could take care of things for Anthony – FMLA papers, his tax appointment, his banking, bringing his favorite blanket and pillow from home, shopping for the treats we knew he would eventually want, posting updates and working our own jobs as best we could around this nightmare. We massaged his feet and his one good hand that wasn’t track marked up and swollen from the IV’s, the seemingly endless blood tests.

On the sixth day, Trudy and Jeremy came; Jeremy drove two hours from Ft. Wayne. Together they sat with Anthony, Sami and I to share in what they knew all too well – something Jeremy defined for Anthony as, “the new normal.” We talked for several hours as only new students at the feet of master teachers can, absorbing every bit of wisdom they offered, every tip; drinking in the comfort and soaking up the knowledge that this disease comes with remarkable people who will come at a moment’s notice to tell you – you are not alone; people who will drive two hours to tell you – you will survive and you will be a better, stronger person for it even though you don’t see it now; people who will teach you what questions to ask and how to be strong and direct when medical decisions are being made by those not knowledgeable in this disease. It was in those moments that we knew the baton was being passed. Our day would come to return this moment to the universe, the day when we would walk into a hospital room, see a stricken Crohn’s patient with their family keeping vigil and we would sit with them and gently say – you are not alone; you will survive . . .

On the seventh day, Miss Nita, Anthony’s new Patient Care Provider (PCP) came into the room to check his vitals and IV. On the seventh day Miss Nita looked down at Anthony, smiled and said, “This morning I was reading in The Word and praying and the Lord told me someone was going to need me today. When I came in here, He told me it was you. Could I pray for you, Anthony?”  With tears in his eyes, Anthony nodded yes.

Miss Nita prayed like only an African-American mother can – with all the force and fury of her Pentecostal and Baptist heritage. In full, robust, resplendent verbiage she tore into the demonic forces of sickness like mother lioness defending her young. It was like nothing I ever witnessed as the fury of righteous indignation swirled around the room. With a rhythm running the full range of  human and otherworldly emotions, rising and falling, commanding and tender, Miss Nita bound the illness, wrapped it up with all the spiritual authority given her in that moment and sent it “straight back to the pits of hell from whence it came” in the name of all that is Holy. She then tenderly implored Jesus to heal Anthony’s body as she gently laid my child at His feet. Tears slowly fell down Anthony’s cheeks – and mine. What a powerful moment. It was palpable!  And then, as if all the sunlight in the world flooded into Room 6610, something changed. I mean it – something changed. Anthony’s countenance changed; the energy in the room changed. Something happened.

At Anthony’s request, Miss Nita prayed with him two more times that day – in the same way. Each time, Anthony grew stronger, happier; he was laughing and up and walking straight for the first time in weeks; his temperature went to normal ranges; his blood cultures came back normal.

On the eighth day, at the end of the eighth day, Anthony was released.

A Pilgrim’s Progress

In 1678 John Bunyon wrote the quintessential classic spiritual work, A Pilgrim’s Progress. It is my understanding that this piece has since been translated into  more than 200 languages and has never been out of print. Pretty impressive. It’s a book that was required reading back at Riley High School in Mr. Covert’s English class, back when you could still openly read a religious book in the classroom as part of a required reading list for the well rounded student. I wonder how many high schoolers today have cracked the cover of this gem?

Christian is the main character, the protagonist. The story is about his allegorical journey from his hometown known as The City of Destruction, which symbolizes this present world, to a place known as the Celestial City, representing all that is indicitive of that which is to come beyond his current awareness. Along the way he of course encounters trials and tribulations, meeting interesting people with names like Obstinate, Pliable, Help, Goodwill, Watchful, Giant Despair, Discretion and Appllyon, to name but a few.  You can get an idea of what their roles are by their names and you can sort of guess about Christian’s allegorical adventures and spiritual evolution as he travels to such places as Wicked Gate, The King’s Highway, the Village of Morality and Mount Sinai.  It’s a “page turner” as they say.

This week, Anthony and I began our own Pilgrim’s Progress journey to a specialist at Indiana University Medical Center in Indianapolis; one of a slight handful of places that are knowledgeable in the management and treatment of Crohn’s Disease.  The one doctor we seek  also conducts extensive research most of  the time while seeing patients only 2 days a week. With the help of my Crohn’s guardian angel, Trudy,  who provided names and direct line phone numbers into the heart of a very complicated referral process, we got our appointment in Indianapolis for February 15th, through Anthony’s primary care provider. ( Trudy would be “Help” in Pilgrim’s Progress – the one who rescues Christian from the Slough of Despond, “a very miry slough” or in my world a very miry quagmire of medical smoke and mirrors.)

As we prepare to leave for Indianapolis, writing down questions, re-ordering our daily lives, paying bills ahead, getting coverage at work and wondering who will feed the cats, I am for the second time heartened to know that God is in charge because we got this referral so easily; Trudy tells horror stories of getting her referral for Jeremy.  This referral couldn’t come any sooner.  Despite that small miracle at the hospital with the CAT scan about a week ago, Anthony is still in severe pain, unable to sleep more than an hour or so at a time. At least now, we have a name for the pain and only because I stood my ground by demanding proper medical treatment for Anthony.

The pain is  called Ostemyelitis. It has taken foothold in over 65% of his bone structure all because some doctor (one of many in the shuffle of trying to get this kid initial help), just medicated the symptom, didn’t look deep enough, didn’t listen when Anthony tried to tell him about the pain. I have to let my anger over that monsterous medical oversight go if I am to keep the faith for that 3 hour drive down U.S 31 to our version of Christian’s Celestial City, where for the couple of days we take up residence while Anthony has more tests, is poked and prodded with needles. He hates needles. I have to believe that if God knows the very number of hairs on Anthony’s head, as the Bible says,  then surely He knows my baby is in pain from a dreaded infection stemming from a mysterious source, not seen, yet lurking inside Anthony’s body like a thief poised to steal his health.  And to top off the pain, let’s not forget the orginal problem that his intestinal system is all jacked up. Let’s not forget the Crohns.

And on top of all this, I wonder in amazement and anger – what in the heck do people do in this country of ours who have no access to health insurance, no advocate to fight for them, no Trudy, no Help to guide them out of the City of Destruction?  What do they do? You tell me because I can’t even begin to know how answer that one. I only know that something is seriously wrong in America, the richest nation on the planet.  I can, however, count my blessings that we have insurance for now.  Thank you to President Obama for passing legislation that grants access for  adult children to their parents’ health care plans. What we will do if we cannot connect to another health care plan soon, I do not know. I can’t go there. I can only trust that the way will be made clear and safe.

So as I pack and prepare, mentally and spiritually, I start one of my conversations with God.  God and I are tight so it’s OK when I look Him in the face (prosopon in the Biblical Greek – face to face, eyeball to eyeball) and say, “OK. We’re stepping out in faith here, God. Do your thing and please get this child some help in the form of an amazing medical team, significant help. I am one pissed off mom right now and you don’t want to mess with that.” (Like I said; it’s OK – me and God – we’re tight.)

And so it is as Anthony and I turn the page in our copy of A Pilgrim’s Progress.

Blessings,

Lisa