Template for a Crisis

First, let me say a heart-generated THANK YOU to everyone who has held Philip up in their thoughts and prayers. My beliefs are such that my request for prayer and positive thoughts are no trivial affair; not just a feel-good measure for me, or a subtle cry for emotional help. There is more and more scientific evidence of the true power of our thoughts and intents than we have eyes to see or ears to hear, and the unified thoughts of a believing community are an unprecedented power. 

Having said that, let me tell you that it’s been a journey into uncharted territory for us, hence the title. Living with and experiencing Duchenne has been, is, and continues to be an eye-opening and challenging life, with no charted course. You have to make it up as you go, because what works for one person may or may not work for another. Each participant is utterly and completely unique. This puts us all in the position of basically having to make up the rules as we go, according to our beliefs and convictions. 

Part of the package that is Duchenne is knowing that while the disease is a slow moving vehicle, changes can manifest very rapidly, primarily when peripheral systems take a hit, like the heart and/or lungs. In this case, Phil has a near complete inability to cough and clear his lungs. Therefore, the annoying cold that went around the house becomes a potential life threatening situation if you can’t, in fact, spend that dreadful day or so hacking. Think about that next time you are frustrated by a cough. Your cough is your friend, believe me! 

Knowing that information is essential, but that is all. In fact, once I knew it, I tucked it away in a file in my mind, labeled “Intentional Denial”, because thinking about it daily, obsessing about it even in times of good health, lamenting it and crying about it and cursing it I found to be a complete waste of my energy, devastating to my mental and emotional well-being, and turning me into less than the best mother I could be to Phil. Have the file handy, but don’t bother to keep it open on the desk. One day you will need to act upon it, but if today is NOT that day, then rejoice and truly LIVE another day in your amazing life. 

Last week I had occasion to have to access that file when Phil came home from school sluggish, tired and weak. He actually asked to go to bed…red flag for him. I get him in bed and mentally pull up the file. What now? 

First, I need to remember the importance of my part in the partnership that is me and Phil. It would be in neither of our best interests if I become an emotional or mental basket-case at this time. So I sit, and I meditate, and ask for a higher perspective from which to function…a place of clarity and deliberateness. I tell Time that it is dismissed. For the duration of this experience, it will not matter. My sole focus will be Phil and his well-being, and my role as a caregiver will require attention that cannot be structured by the clock. The circadian rhythm is the only indicator required to measure time now. And I settle into that. 

Next, and most importantly, I make a conscious decision to walk through this in a state of love, and not in a state of fear. The things that my brain would like to remind me to fear are many and threatening, but I must bring myself to that place that understands LOVE for my son trumps anything the external and physical world can throw at us. 

With the responsibility as my son’s caregiver to be his hands, arms and legs, to carry him, as it were, I must remind myself that no one wants to be carried by an unsteady or fearful horse. For him to endure his part of whatever this is coming at us, he has to be confident in his ride. No spooking, no bolting, and certainly no white-eyeballs. (Perhaps only horse-people will get the analogy…J ) He needs to know he’s safe and secure in my love for him. Perfect love casts out fear. True story.

The last stop on my meditation was to address the fact that I am not in this alone, and there is no need to try going it solo. We are all connected, and these are the times when we do well to draw upon that connection for the support that we need. And so with much gratitude for the companions that walk beside me in the physical, Mark and Phil’s caregiver, Sammy, I also sent out a request for assistance from both my family and the Duchenne community. I know that the energy released from each heart as they read my request was transferred instantly into our Prayer Account, and knowing that…it was Game On. 

Step one, I decided with all clarity, was hydration, medication and respiration. Grateful beyond all reason that we had a g-tube placed two years ago before his spinal fusion. This enabled me to give him a constant supply of water, vitamin C, chicken broth, and herbal teas at the rate of 400 cc an hour. Then guaifenesin to thin the mucous in his chest, Benedryl to dry up the leaky nose and eyes, and albuterol in his nebulizer to help open his airways. And finally, his cough assist – a rather obscure machine that coughs for you – if you have what it takes to actually let it. We humans have a thing about breathing on our own subconscious level. We do NOT like it when some machine tries to breathe for us. There may come a time when desperation for air makes it a palatable option…but not when you can still do it yourself. Then it can be an anxiety ridden battle for the breath. 

I’d like to be able to give a clear and concise breakdown of how everything went after that, but things became rather blurry. An hour at a time. A fever develops. His vitals fluctuate…up, down, up down. Awake, asleep, out of bed, back to bed. At one point, I have started to ponder the parameters and at just what point his care may have to be turned over to the medical establishment – a contemplation that as of yet brings no peace, so I abandon it in favor of just sitting with him and watching movies, and keeping him comfortable. Instead, I contemplate the balance of my Prayer Account, which, instead of depleting seems to be on the rise. And I sat in awe as his 103 fever evaporated in 15 minutes without him even breaking a sweat. I thank you all for that. This gave both of us a much needed infusion of hope. 

Over the course of the next few days, we continue on our hydration, medication and respiration efforts. On Monday he had a standing appointment for a spine x-ray at Children’s Hospital, and he is actually sporting a bit more energy. His x-ray looks good, but I am unable to get a desired chest x-ray done. Part of my reluctance to turn his care over to the medical establishment is rooted in the fact that his care is managed there in a manner that frighteningly resembles The Manhattan Project: 130,000 people, two billion dollars and nobody knows what anyone else is really doing. Coordinated care is an oxymoron at this time. As per my previous analogy, this is one horse I don’t want to ride. 

By the time we arrived home yesterday, Phil was exhausted and needing hydration, but in good spirits. My mother called, and I was reminded that it would be good to update those who have been praying, and today is my attempt to do just that. 

Today Phil woke up pretty congested, so we started his day taking the last of his antibiotics with a side of vitamin C.  His fever has not returned, and despite extreme difficulties in scheduling his future appointments this morning, I am very optimistic for his complete recovery. 

We are not out of the woods, however, because the fact is that we live in the proverbial woods. Like the boreal forests of earth, it is as beautiful as it is dangerous; as delightful as it is deadly. It’s a world of extreme polarity, which leaves the residents with a choice of how to respond to its environment, in either love, or fear. I lived too long in fear… a place where the mind wanders into all the horrible things you may see or experience in this unstable place. Enough of that already. 

Instead, I have chosen to purposefully pursue the path of love through this forest. When I stepped out in faith on that one, I was immediately rewarded with bird’s eye view of my life, and the transient nature of it. When I begin to understand the scope of that, I realize that all fear is doing is robbing me of the extreme beauty all around me. In fearing and thinking about what might happen, I miss out on what is currently happening – and thereby miss a good chunk of the stuff of life. If Duchenne has done nothing else, it has made me acutely aware of very preciousness of every moment we are alive! 

And so I choose to live in love. And in charting my course – or creating a template for any crisis that may arise, I have begun to truly understand the place for prayer, which is generated from the place of love in the petitioner. It reconnects us on a spiritual level, and produces the most healing results. 

I no longer curse anything about my life in this place. It simply IS. How I choose to frame it is entirely my choice – and I will benefit from the fruits of love, or crumble under the weight of fear. Thank you for joining me and upholding my son in the light of grace and carrying us through this current crisis. We are going to be okay!