Phil and Lessons from the Giraffe

This is a YouTube video clip that Phil has watched over and over – I am guessing in excess of 100 times. He knows it by heart, and despite the "tragedy" of it all, his rendition is quite comical. He gets a lot of latitude as far as what I allow him to watch, and yet this is on his most frequently played list, and I guess that given the content, that’s not too surprising.

The five stages of grief as we have come to know them in pop culture: Denial, anger, bargaining, depression and acceptance. If you’ve never experienced this cycle, this is probably good news for you, but if you have, you can relate. And if, like Phil, you have to revisit each and every stage pretty much daily, I suppose the appeal of this clip is self explanatory. A quasi-humorous look at a day in the life of someone terminally ill – even if they aren’t quite aware of this just yet. 

The truly sad part is when we who must live this daily get stuck in one scene or another for too long – and how lop-sided our life gets as a result.

We linger in denial as our boys look pretty normal in the early years. The biggest questions are things like where to go on our Wish Trip, and which doctors to go to for when…well, you know…for when we will need them, which is not any time soon, mind you…just for future reference. We carry on – status quo – just livin’ the American dream – doing our thing, planning our plans, and living our life. Not a bad place to linger, actually, until one day you go in for a routine visit, and they tell you it can’t be fixed. You have to start thinking scooter, or wheelchair, and would you like your kid to go to cripple camp? This stage collapses a lot easier and with a lot less personal noise if you start disassembling it early on, rather than have it pulled out from underneath you suddenly and without warning. Talk about an awareness campaign – be aware – be very aware.

And then the anger. Oh my – you seriously have no idea. One day I suppose the world will be ready for me to unleash my journals – and even then I suspect they will be edited heavily! No, no, NO!!! Goddammit, NO!!!! Not my son, not this disease, not this verdict, not now, not ever!! Stupid disease! Stupid people! Stupid genetics! ARGH!!! 

This, in my experience, has been the absolute worst place to hang out. Having my denial stripped away was one thing, but now I am angry, and I have every right to BE angry, and you will not take my anger from me! I will coddle and nurture this anger, and I will wear it on my sleeve, and I will use it in every capacity I can – to console myself, to justify my ugliness, to fuel anger directed at anyone and everyone who does not see things the way I live them. I can be crass, and mean, and hurtful. I can lash out at others with self-prescribed immunity, because I am HURT! I am ANGRY!!

Yeah – try living there and watch as your whole support system packs its bags and scatters. They will tire in a hurry at your justifiable temper tantrums, because they are either people who actually DO understand your position, and will only empathize with you so far, or they in fact do NOT understand, because they have healthy kids and healthy lives, and though they try, their sympathy will only last for a short while, especially if they should catch the upswing of your angry flailings. Be thankful if you start hearing things like, “Get over it,” and “Deal with it,” -  you will know it’s time to move on.

And we collect our weary selves and proceed without passing “GO” to the bargaining! This is where we call with all earnestness on God as we understand him. This is where we realize that earth has no answers, therefore we must seek a higher plane – the next level, as it were. And like all the stages of grief, it’s a good place to land – but a bad place to set up camp.

I believe every one of us who has been served their Duchenne papers has had to reevaluate everything they know to be true about God, and the devil, and angels, and things unseen. What’s it all about? Why? Why me? Why my son? And the benevolent god that we have been taught to believe is the be-all and end-all of all that is in existence suddenly gets the hot seat. While this spiritual day of reckoning is a good and needful thing, to get stuck here is to dissolve into a rather pathetic state of never being good enough – never being adequate – feeling like you did something wrong to “deserve” this, and supplicating a Force that quite frankly had precious little to do with a random package of genetic mutations. One needs to be able to adjust the theory to fit the facts, and revisit their belief system to see if it actually works in this scenario. To consistently make excuses for why a deity would allow this is just plain wrong, because it leaves perfection-versus-imperfection, and guess who loses, no matter how well formulated your argument is? 

How is your faith working for you? If it’s not – then it might be time to dump out your bucket of faith and carefully look through it, and only put back into the bucket that which you find actually works for YOU. This will put you in a place where you are not constantly supplicating a force to change something that will never change, and will allow you to collect your bargaining chips and carry on to the next stage.

Round 4: Depression. I’ve established a rule of thumb for myself here, because left to myself, I will languish here in a prison of my own design. I have given myself permission to have a pity party with all the trappings from time to time. Party of one – I try to keep things to a dull roar as I ache and pain and cry my way through the reality checks that just keep coming even when I refuse to cash them. Can’t say how long the party will last, but I really do try to keep them under the 24-hour mark. A sob in the shower, followed by an evening full of sniffling and moping, and a few glasses of Zinfandel after the kids are in bed – and maybe even a few more on occasion. It’s my party, and I don’t want to make dinner, or do the dishes or the laundry or help the kids with their homework or do eBay or anything! I just want to turn this sad, sorry story over and over and over in my mind, convincing myself that I have been cosmically wronged, that nobody cares, that nobody understands, and that life is just one pointless frustration after another, with no end in sight. I want to fall asleep on my tear-soaked pillow, the saddest person in the whole, wide, nihilistic world.

If someone has to tell you that this is not worth carrying on for over 24 hours, you need help. This does not resemble hell – this IS hell. A good cry about the perceived injustices of life is a therapeutic thing – a pity-party animal is nothing anyone can stand being around, yourself included. The place we aspire to is yet up ahead.

Acceptance. Now this is the place where you want to set up housekeeping and pick out curtains. It is what it is, you are content in knowing that you don’t have to have all the answers, you don’t have to even know all the questions. You just take your lemons and you make lemonade – and you’ll even have enough to serve your guests! Your life – your son – is no longer a problem to be fixed – he's just a fact of life, and once you get past all of the wouldas, couldas and shouldas, you find that you can simply enjoy the marvelous person you gave birth to, with all that they bring to your table. You can look at the hand you were dealt in the cosmic shuffle, and know that regardless of what cards are there, you are still in the game! 

You can take the reality of your life and spin it any way you want to – just like the news! Rain is either that which ruins your plans, or that which brings forth life from the earth – take your pick. Even if it’s both – try and focus on the garden! It will be up to you how you filter the information through your brain. Be it for good or for evil – you get to decide. When you are wrapped up in the middle stages of grief, you really have a hard time seeing this. Once you arrive on the shore of this island, you realize this is just what you’ve been waiting for: The Peace of Acceptance. 

But – like most vacation destinations, they are not really set up for permanent residence, and we will find that at some point we have to go back home, to our denial, anger, bargaining and depression. They are all part of the process – and it seems to me that we cycle through these things over and over again, each time spending more time on the island of acceptance – until at one point – you are granted residency. Many parents who have already bid their sons farewell live here – and are the most welcoming, wonderful, grace-filled people you will ever meet. They have been tried by fire, and they have risen like the Phoenix, and despite all that they have been through, would not change one single thing. They don’t look at this Duchenne situation as one of having loved and lost – (a negative spin, for sure) – but having loved…deeply, richly…and having gained everything. They remember these years, that we are now facing down with our bull-dog determination to fight, with fondness for all that they lived and learned there. They understand the stages of grief, and can waltz through each one now, unaffected by the slippery-sloped floor that still throws us off balance. They will smile genuine smiles through their tears, when the most we can pull off is a pathetic smirk to cover our tears. 

They are not looking for a cure any longer – because on the Island of Acceptance, you don’t need one. There is nothing left to chase – you are where you are – you have arrived, and everything is okay, and it always has been. We just can’t see that through the pain of the experience at times.

And so, with the help of a Giraffe and a patch of quicksand, Phil and I muddle through the abbreviated whole of life’s experience – a Cliff Notes essay on LIFE here on this planet – examining every aspect of the cycle, not lingering too long in any one place, but giving ourselves permission to visit each one, forgive ourselves for our shortcomings and temporary obsessions, and granting ourselves the freedom to experience our experiences and move along. 

Phil cornered me the other day, just when I was planning on having another pity party, "Hey Mom...Are you feeling like the giraffe?" he asked in all of his perceptive innocence. 


All I could do was laugh. "Yeah...you busted me. I totally am feeling like the giraffe today, Phil..."

And he laughed, too.