Wednesday, December 22, 2010

On the fence

At times I feel inadequate to take on this parenting roll of a child with such complex medical needs. I often get frustrated with the feeling of being "just the parent" and not being perceived as an integral part of Wyatt's care team. However, right now I'm feeling as if I am "just the parent." Confused, analyzing, deciphering what was said and the meaning that it has on the situation. While I may be one of the experts at how my son is feeling and have opinions as to why, I don't like being the go between relaying medical information.

I am a frazzled mother searching for an answer for my child. There have been many of times that I was content with not knowing why the storm was raging inside my child's body. We didn't have an answer. There have been many more times that I have been determined to find the answer to this boys suffering. He's my little boy, after all.

As I read through the clinic note from our trip to Atlanta I'm confused. Bryan and I left the appointment feeling as if we had a good understanding of all that was said, found in the testing and what was happening within our little medical world. And now I sit scratching my head and wondering where is the rest of it...we talked thoroughly about so much more than what was contained in this note. Did I misunderstand his words? Did Bryan and I misconstrue what was said? Bryan and I talked through the appointment several times since and our understanding of what was said aloud. We were in agreement with our thoughts. So, where did things go awry? What are we left to believe....the clinic note or the words that were heard?

I don't like being 'on the fence.' That's how I feel in this journey, as if we're teetering atop a crookedly narrow picket fence waiting for a test result, a doctors opinion, a new symptom to push us to one side or the other, flailing our extremities in an effort to ease or slow our fall to the hard, unforgiving ground. Someone just give me a good shove, already!

Now, we are left to pass along what was said within this all important appointment and we will fax the corresponding clinic note on to the various specialty doctors, as well. But what we understood, heard, is not exactly what is in the note. We plan to explain what we heard, understood and are confused about. But it's frustratingly depressing to be so close to closing this mind boggling chapter in our lives, yet now feeling so far away from beginning the new chapter. It's apparent that we're still stuck in that swirling state of confusion that we have been for many years now.

I didn't want any of this for my child, my family. I wish to wake up from this nightmare of a dream, but can not. It's reality.

Trusting, reflecting and praying this night. Thanking the Lord for all my blessings, seen and unseen.
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  1. Man do I ever know that feeling. ((hugs)). And I think no Dr. can even begin to understand why those notes need to correlate what we understand.

    Lisa (skssmommy on p2p)

  2. So sorry to read this. Is it possible to contact Dr. S to discuss further?

    Hang in there.

  3. Monica- We're unsure of how to contact him directly. It states that he does limited follow up and will talk with our doctors, but asks the parents to save the questions for follow up appointments only. Which is what we did and left feeling as if he answered all of our questions...which is why we're a bit confused now. I would have had more questions if I saw the clinic note before leaving his office! We're going to fax the clinic note along with a recall of our understanding of the appointment to our GI next week. She's planning to call him to discuss things further.