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To The Max

Recently our thoughts and feelings have been thrown for another loop. I think that is becoming more of the norm, then the exception! The following paragraph highlights something that has come up in recent conversations with friends. Something about trying to be in each others shoes, or trying to understand what our situation feels like. Well here is the only way I know how to share that, and I am going to use the events from the past week as an example:

First let me tell you about hope. This is a hope that isn't recommend for the faint of heart. If you are in any way suffering from naive delusions of happily ever after, then this hope isn't for you. If you want a hope that is a clear distinction between very bad, and very good, then it's not for you. If you expect miracles from this hope, then it isn't for you. This is a hope that is so slight, so thin, so painful, it doesn't seem like a hope at all. It doesn't offer comfort, it doesn't offer answers. You don't know whether you really want to have this hope after all, or whether life is simpler without it. When you first thought about it, you didn't know whether to smile or cry. Which is probably why on most days you cry when you laugh. You don't know who to believe or what to think anymore. You don't know what to say in conversations and feel awkward among friends, but yet you still hope. You hope that perhaps tomorrow will be easier, the next breath a little lighter, your shoulders a little straighter. Sometimes it helps to think that nothing matters, nothing except the task of the moment, whether it be changing a diaper or feeding the cat. A couple days ago, when you found an article that raised up all those issues you thought you had put to rest. It all came back in a torrent. The faces of the people in the hospital; their words, your thoughts; your pain. Perhaps this is a hope that will never manifest, never be clearly defined, never be truly attained. But now it's here, and suddenly you realize that it always was. A lone rock standing against the crashing waves. You know that this rock can never hold back the ocean, but somehow that doesn't matter, as long as you hold steadfast.

Here is an excerpt from the article : To define better the syndromes of hydranencephaly and maximal hydrocephalus, we followed 10 neonates demonstrating (by computerized tomography) virtual absence of the cerebral substance with serial computerized tomographic (CT) scans, electroencephalograms (EEGs), and developmental evaluations. The follow-up period ranged from 4 to 23 months. Two well-defined syndromes emerged. Five patients showed absence of cortical activity on EEG and a CT picture of minimal occipital brain parenchyma connected by a thin bridge of tissue to intact basal ganglia. These patients were shunted and showed no improvement with time, either neurologically or radiologically. Five patients showed minimal frontal cerebral mantle on CT and the presence of electrical activity on EEG. These patients required bilateral shunts to control head size and showed remarkable progress with time. Serial CT scans demonstrated the appearance of considerable brain substance, and neurological development was either normal or slightly delayed. We believe that the former pattern of only minimal occipital brain and absent EEG activity defines true hydranencephaly, whereas the presence of small amounts of frontal brain tissue associated with EEG activity seems to represent maximal hydrocephalus. The differences in CT pattern, EEG, and clinical progress all suggest a different pathophysiology for these two conditions. (Neurosurgery, 6:35-38, 1980)

Is this a hope that can be applied to our guy? Everyone who sees him is amazed at his behavior. How aware he is of his environment and how social and animated he is. How he is meeting most of his milestones. Could it be that his diagnosis, in actuality, is not hydran? And does he instead fit into this diagnosis of maximal hydrocephalus?  This changes everything! The first and foremost being that the latter does not necessarily have the same death sentence as the former. We do not have any official/medical support for this idea right now, but certain things have led us down this path. His EEG was interesting enough that the neurologist has asked for an MRI sooner, and even told Leo's PCP that perhaps, in his words,"there is more brain matter then previously thought."  This all brings us back to the word hope. And perhaps another good word is anger. If this is all true (hope) then why did they keep shoving the terminal vegetative state crap down our throats every opportunity? (anger) It is easy to get lost in all the emotions, so we have to go back to the base. The foundation of everything. And stand on it. Strong and steadfast.


  1. Even though we cannot possibly "stand in your shoes" it is our hope that the prayers of all may help broaden and shelter that rock.
    With prayers and love,
    The Whitfields

  2. Actually....all that does matter is the moment, for that is the way we moment at a time. One moment to love, and to feel and to give thanks for that moment. The prayers will never stop...and at this moment we are praying.

  3. Unfortunately, it is often about the "worst case scenario" when it comes to telling someone that their lives are about to be destroyed and their dreams are about to be pulverized. I don't know which is worse, or which is better. To believe that all will be better and find out it never will be? Or to believe that all will be misery and find out it might be better?

  4. Of course "kill the messenger," is not very mature, but don't you think that the messenger should be very aware of the deep psychological impact that every word in his/her message will have, and thus choose them very very carefully? I personally feel very damaged by some of the things that were said to us, and looking back, I think some of that could have been avoided. And YES I think it is always better to believe in the "better." Regardless of whether it will be ever or not, but at least it helps to have a positive feeling, instead of a negative. The despair will be there always regardless, so you might as well laugh with your tears! (it does help, at least a little...) :-) Thank you for your comment, it helps to verbalize my thoughts!

  5. hey guys. i too think from his scans and the recent eeg that definitely maximal hydrocephaly is the likely diagnosis. it is surprising to me that this was never mentioned as a possibility and the lack of active guidance in this area. just keep his environment as interesting as possible, stimulate him, talk to him, the more interesting and exciting his environment the better he will adapt!

  6. The lifeblood of Science is observation. Little baby Leo is what he is. He is not a diagnosis he is Leo. The paper you quoted is based upon observations of other babies who are not Leo. Your Doctor made his diagnosis based upon what he saw but Leo has more in store that the Doctor did not see. Leo clearly is charting his own course so follow him and watch, listen, pray, love and learn. What will be will be. In Christ.

  7. I'd be surprised, too, if maximal hydrocephaly was not mentioned as a possibility. When I ran the information past a friend who is a neonatalogist at Boston Children's, he mentioned it as a possibility.

    In any case, there is hope and there is despair, and I think either way both are along for the ride. The Little Lion is driving!

  8. With all the hugs & love and care he's getting from his family little Leo is going to grow and grow. Maybe to amaze us all. I can totally see how focusing on the moment works best.

  9. HI Leo
    My name is Jenna and I came across your site. U r a brave courageous fighter, and inspiration. U are full of smiles, life and spunk. U go through so much yet u never give up and keep fighting. U will be in my thoughts. I was born with a life threatening disease. My site:


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