Tuesday, August 16, 2005

powerlessness

I despise my powerlessness. My weakness. My ineptitude. Anytime I cannot or am not permitted to help, to control, to contribute, to lead, to do something... I hate my powerlessness. It is a tortuous disease eroding my sanity, my self-respect, and my soul.

Scarcely can a man feel more powerless, more weak, and more inept than when he's trapped at the mercy of the medical system, in a foreign country, dealing with his child's irregular vascualar condition, realizing that this baby girl is slipping into a medically-administered semi-comatose state before, about to be blasted with magnetic radiation in an attempt to see what might or might not be behind her skull... and there's very little that he can do about it.

Truth be told, I was downstairs when it happened. Trying to get an accurate number for Olivia's weight from the files down at the Kinderpolikliniek. We didn't have a number off the top of our heads -- and we certainly didn't want to guess when powerful sedatives were involved. But of course, I was a pawn in this game on this day. And no amount of kindness from the receptionists and nursing staff could change the fact that they didn't have Olivia's files. The files were upstairs -- of course -- in Radiologie... the same place where the ignorant nurse had asked and then shrugged off the lack of a specific weight without even glancing at the charts... and the same place my wife stood crying as our baby choked back the fumes from the gas mask and passively absorbed parting kisses before being wheeled into the lead-plated chamber for the MRI scan.

I arrived back in Radiologie, wachtkamer 6, only when it was too late. The gates had already been sealed. And I was powerless. Standing in the cold on the outside. Drinking machine cappuchino from a paper cup. Pathetically trying to enjoy a book... But mostly stewing in my impotence.

Of course, I was glad when it was over. When we could see Olivia again. It did me good to see her tiny frame stir and shake off the heavy mantel of anaesthesia -- slowly at first, with a drunken swagger and weary eyes, but gradually strengthenening and rising up again. Her resurrection gave me hope and a moment's respite from my own powerlessness.

Yet deep within me, I know that I cannot and will not ever escape my weakness. Yes, my daughter is back at home -- her usual beautiful self -- but we remain as nothing but blades of grass, blown by the winds of greater powers. We cannot interpret the MRI, the EEG, the IBOTMS (infuriating bureaucracy of the medical system)... We must simply wait to hear the neurologist tell us the results, yet we don't even know when we should be expecting that call. We must wait for the neurologist to consult with the vascular surgeon, who must consult with the plastic surgeon, and it seems purposely vague on when we will come to the end of this chain... Then assuming the doctors will approve surgery and move forward, we must wait on another waiting list until Olivia will see the inside of an operating room. And it pushes me to insanity that we can do nothing about this. We are powerless. Weak. Inept. Impotent. We must simply wait...

I understand that -- unfortunately -- the problem goes a lot deeper than the pursuit of treatment for Olivia's hemangioma. Our weakness is so widespread. We cannot heal our daughter. We cannot alter the passage of time. Furthermore, we cannot affect the earth's weather and climate patterns. We cannot predict the day of our death. We cannot make people love us... We can do so little, when you really think about it.

And I hate this. I am angry about this. My powerlessness...

When it comes down to it, my only choice is for faith and trust: trust the doctors... and, more meaningfully, faith in God. Frankly, I don't like being dealt that hand. But I guess it's preferable to the alternatives: despair, fear, and anger. So I try to shake off the wearying pessmism that drugs me, blink away the eyes of anger, and stagger to my knees in a resurrection of my tireless typical powerlessness...

5 Comments:

At 3:54 PM, Blogger Noel Heikkinen said...

Love ya, Eric.

 
At 5:04 AM, Anonymous Marcey said...

Hi Eric,

From across the ocean now I read your blog regularly and feel that in some ways I am getting to know you better from here than from when I was there, sadly.

I immediately connect with this post. When we handed a slightly drugged up, two and half year old Lainey to the nurses who then took her down a long hall to a waiting operating room, we too felt powerless.

When the nurse came out to us after 45 minutes to give us an update and she told us that Lainey's life was now being supported by a heart-lung machine, and we realized that meant that our daughter's heart was not beating at that moment and wouldn't be for the duration of the surgery, there was a profound understanding of just how little we control.

Now, years after that, as we visited with a new heart doctor here in Charlotte, and he casually mentions new research showing that the other procedures Lainey also had years earlier now show increased risks of aneurysms...well...I can only thank God that it is not my hand that holds her. And I thank God that Olivia is in the hands of the almighty God.

A favorite quote of mine, although I don't know who originally said it, is: "Choosing to have children is choosing to have your heart walk around outside of your body". It is only because of a faith in God that I can deal with that truth.

We love you all, miss you, and will be with you in prayer as you walk this path with her.

 
At 7:35 PM, Blogger Eric Asp said...

Thanks, Marcey, for your sympathy with our situation... It's good to be reminded of the Laineys of this world, who turn out happy and healthy in spite of early childhood medical stuff... And it's good to be reaffirmed of God's sovereignty.

 
At 1:37 AM, Anonymous mom said...

Eric & Marci, I'm praying constantly for wisdom for the doctors and comfort for you guys. I remember how hard it was when you had your tonsils & adnoids out, and again when you underwent anesthesia to set your broken arm, Eric. And those things are nothing compared to what you are dealing with. I wish I were there to share your burden-but of course, you're only a prayer away.

 
At 8:26 PM, Anonymous Anonymous said...

Eric,

I had to comment on this and let you know that you are not alone in your feelings of "powerlesness". I first read one of your blogs from a link posted on the MSN Vascular Birthmark Support group where you talked about perception....what a great lesson. My son has a hemangioma and as a result has undergone two MRI's with G/A at a young age. I certainly understand the feeling of being at the mercy of the medical community when it comes to the well being of your child. I wish I could get my thoughts across as clearly as you do. Thank you for giving other parents a voice.

Sarah (Devan's mom - nasal tip hemangioma)

 

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