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.
Confronting Crohn's 