In ancient Greek mythology, Pandora, the first woman on earth, was given a jar which was not to be opened under any circumstance. Well, Pandora, much like the biblical Eve who ate the forbidden fruit provided by the friendly snake, opened the jar which supposedly released all the types of evil on the world, except Hope which was still trapped inside. Could this be the explanation why most bloggers are women who do what they aren't supposed to and challenge mankind to think and reflect? Regardless of this sexist innuendo, I am ready to open Pandora's mythical box or perhaps take a bite out of the forbidden fruit.
The opening of the jar releases my greatest fear and perhaps the greatest fear of all parents of quite severely disabled children: when I pass on, check out, am gone, sealed in a water-tight coffin or reduced to ashes with my urn placed on someones mantle, who will take the same dedicated, loving care of my child. Given our belief in caring full time for our son, in our home, and given the ever growing repertoire of therapies, the probably of Adam outliving us all is extremely high. Despite the severity of his injuries, his need for 24 hour a day care and his aesthetically imperfect hands and feet, all body systems are pretty operational and his spiritual system optimal. With loving care, his life expectancy far surpasses ours.
Of course, our daughter is charged with the supervision and execution of his care plan and well-being when we are dust. Of course, he will be cared for in our home. Of course, I can never guarantee the level of dedication and commitment that parents provide. So this is the fear which has erupted from the opened jar. Unfortunately, we all have to take a bite out of that damn apple and release this plague,.
One not so amazing observation is that no one has ever said, "If something ever happened to you and Sharon, we would be honored to step in and care for Adam, for however long it takes." The issue is not money for his care, in our case, as we have taken care of that; the issue is compassionate, consistent, loving care. I often ask where is that saint that will step up to the plate and make an offering...probably won't happen!
So, all you can do is live in the very present moment, give your utmost and trust in the universe to provide as it always has. Opening the jar, biting the fruit...you can never really stuff that dread back into the jar or make believe like you haven't tasted the apple. At least, Pandora didn't let hope escape!
Hi Phil, firstly I love all of your posts, you always hit the nail on the head... Sometimes your post is SO good that it's almost hard to comment. I always strive to be a better human, but in my eyes I have a longway to go. I wish I could say yes, I wish I was 'that' person (having 2 dependent longterm/indefinate) and maybe one day I will be. You and Sharon are truly exceptional and with you as role models for how humans can be there is hope for mankind yet. I love you guys and so happy to have your family in our lives. Xxx Oaties mum xxx
ReplyDeleteThe future is so hard to imagine sometimes. With Christopher's new diagnosis we have no idea what to expect. Hopefully Ryan will be there for him if we are not on this planet. He loves his brother so, I am sure he will be! The future is "the F-word for parents of kids with special needs"...as Ellen put it over at www.lovethatmax.com She wrote a great post on the F-word!
ReplyDeleteLove, love your blog Phil! Keep the eye opening posts coming!
PS...Please tell Sharon her book is a huge hit at Christopher's school!!! EVERYONE wants to read it!
Great post! Long term future is the only black cloud in our beautiful life, but as all big things, I think that some miracles aren´t in our hands. (forgive my written english, it´s a bit rusty)
ReplyDeleteI love your blog.
Mel, Lisa, Alejandra,
ReplyDeleteThanks for your kind comments !! The amazing fact that I have learned on this journey is that those people who have the most full plates in this life are the most kind and loving and generous. Your get it! And Alejandra, your English is not rusty, it's as good as mine, maybe better!
We love you too Phil xxx
ReplyDeleteLove this blog!It's a labor of love not too many are willing to take on. Not a day goes by I don't ponder this exact question and no one has offered to step in for my husband and I when we are dust either. Hang on to hope and live in the present moment is the best we can do. (cj's mom, I love the f-word reference:)).
ReplyDeleteWhy have you opened Pandora's box, Phil, Noooooo!
ReplyDeleteI swear to you I have not thought about it except for some 2.5 seconds, back in 2001. Realizing there would be no one that could or would try to take care of Segev I have simply put it out of my mind entirely. I've definitely come to take less risks in life because I want to be there for him: it's stopped me from doing certain things.
Now, the older Segev gets the shorter the umbilical cord that binds us becomes. As my own health becomes less I see that I have to adjust my outlook as well concerning the level of care I can provide for him. Being a single parent caretaking such a child has a tremendous price after all.
At first when you said no one comes forth to state that they will care for your son had me almost laughing. But thinking a little deeper it would be nice to believe that someone could selflessly offer themselves in light of the tremendous good that it would do. It may yet happen. Also, someone who offers it could renege and someone who hasn't offered might step forward if you were gone, but not before.
As always though I am glad to read your clear thoughts, especially now that mine are like muddied water.