September 02, 2011

Oh goodness

"The question is, if all that effort is really worth it."

Who do you think said that sentence to me just the other day? I'll let you ponder. It has been on my mind lately and then someone said  it. Only the way that I've been thinking about it has absolutely nothing to do with the context it was actually said in.

It is not that I feel regret at giving it my all, but I do regret not being a lot less naive, not learning quicker. Without the right tools any endeavor can lead to an enormous waste of time and effort, not to say terrible mistakes. In that context I feel that throughout Segev's life like I have been chasing an apparition. Something which others are adamant does not exist: the Solutions to Segev's many complications. And by solution I mean that technique, diagnostic method or substance, which will make his life better. I am so confident in human ingenuity that I am not expecting ready made answers   as I have contacted dozens of people through the years, especially non-professionals,  in this quest to help Segev. The ingenuity works and comes into play when we attempt to understand an issue, often allowing a modus operandi to establish itself.

There may be great difficulties to overcome but the guiding light must be the willingness  to participate and when necessary, create something new.

Then again there are instances when I must bring all of my ability to focus on the prize to bear because I run into these:

Do you all remember the pediatric hematologist in the children's hospital who said about the ketogenic diet, "You know I don't deal in alternative medicine?"

The gastroenterologist who wanted to send Segev home with Losec when he was seizing every four minutes?

Do you know about the highly regarded pediatric neurologist, a specialist in epilepsy who had said I was confused, unknowledgeable, but after studying the data shook my hand and said I was right? Yet who later told me, "why would I want to study your son, when there are none others who have survived to his age?"

The pediatric pulmonary physician who "wouldn't take the responsibility" of prescribing inhaled antibiotics for Segev's bronchiectesis despite that the most highly regarded doctor had already done so in the past. Despite that Segev required constant physiotherapy and oxygen, was sick with pneumonnia on a regular basis he said,  "Let's see how we get through the summer and then come back to me."

The chief pediatric neurologist who said that there is no such thing as esophageal colic and when I told him which standard medical textbook he could find it in said, "we don't use that book."

The professor, head of the pediatric department, Segev's coordinating physician at the time who, when I called him on his cellphone for help because Segev was barely breathing, coughing blood, said, "you know Fischer you have some nerve calling my private line, this is for emergencies only!"  The same doctor that on a previous occassion refused to prescribe antibiotics despite lab evidence of infection because the generic doctor at the imaging institute concluded that the CT scan did not show clinical signs of bronchiectasis even though two of the countries' top pediatric pulmonologists  saw the CT and concluded that those very signs cited proved that Segev suffers from bronchiectasis. (The doctor is still chief of pediatrics in a major hospital)

The doctor who said, "Segev can't possibly live more than a year."

The professor of pediatrics who said, "put your son in an institute because as his situation worsens you will have to see him suffer and you won't be able to care for him."

The chief (non-pediatric) neurologist who incorrectly diagnosed Segev with hypsarrythmia and through the pediatrician assured me that every hour I waited to start the "treatment" I was bringing  my son closer to death.

Of course there are many more and each case was yet another doctor pissing in the well. It adds up, if you know what I mean, all this wasted effort, the needless anxiety, the complete lack of interest, the lack of knowledge or willingness  to learn, to study.

Recently on a Facebook Ohtahara page a woman asked how other parents react when, in a casual conversation you are asked about your children. The how and if of investing in your response anything concerning your special needs child, severely ill, physically and mentally compromised child, your prickly difference.
I responded with,
      I guess I'm a bit of an egotist because any questions I get about my children always ends up being a brief history of Segev's condition, his uniqueness and the issue of my beliefs on providing love and attention to children who are in mortal danger, struggling to have a place in society. I just feel there is a need to be vocal and to educate, for that very reason I used to take Segev with me shopping: so that he could experience fresh sounds and energies and so that others would see that this amazing human being was a part of our existence as well.

But unfortunately there is certainly no educating physicians about the importance of finding the proper standing for a child such as Segev. Then again this isn't meant to be a rail against doctors specifically. The examples are meant to highlight  the feeling inside of me that has been gaining  momentum since we left hospital last time; that the finite energy I have, or more correctly the diminished capacity, leaves me contemplating what are the right places to invest that energy.

The living environment continues to present as problems of  inconvenience, high maintenance and poor air quality  although the recent addition of eight hours a week of in home help assigned to me through various agencies and represented by a woman who appears to be quite capable (despite no prior experience with children) has certainly come at the eleventh hour and is definitely felt as a partial reprieve.

Even when you have wind in your sails, like I do, those situations still bring you down, adding complexity to an already complex life and certainly increasing the energy you need to expend.  And then comes the quote that opens this post. Coming from his mother. I've literally been called, "crazy", "obsessive", "excessive" in context of caring for my son. So be it.
I'm certain many have felt the blow of not receiving support from the very people who you would expect that support. And yet you find support in unlikely places. Support that some will chastise you for as being "virtual". Someone once said, "I'm a bad blog-friend" and I responded, "better bad blog-friend, than no friend at all."


  1. I don't know how to respond to this because I know where you're coming from. My situation is intense but I have someone to share it with and other supports that get me by. I, too, have had that question thrown at me over the years. I get very angry inside when I hear it. I know we've all considered our lives without this situation and there are those moments when you question yourself. Fortunately, I have found those down spots to be fleeting and easy to dismiss. I get so much more from my son that easily outweighs the bad stuff. I know there may come a time where the bad stuff over runs the good - but I try not to think about that. It's not helping anything.

  2. I'm glad you've got a partial reprieve, but wish it were more, that you and Segev had more help. You and yours remain in my thoughts each and every day. ((()))

  3. Again, Marcelle, it has never been a question for me about "is it worth it?" Just as I've never for a second asked myself, why has this happened to me. The down part is simply those that could care but don't, those that could help, but don't. I've spent a great deal of energy 'fighting the good fight' educating, whereas perhaps I should be concentrating on other things.

  4. Thank you once again for your thoughts KW!

  5. If you have to ask the "is it worth it question", you have never really got the big cosmic "IT". IT is simply about an act of unrequited love and that what is what life (IT) is all about. If you are immersed fully in IT and committed fully to IT, the question is never there. It is only there when others seek to allay responsibility, to hide, to evade that which is important seek to distract. Those who ask the question become a distraction to us and the energy depletes us (although they have no clue about what this type of depletion this is). I know where you come from and are going. When people live consciously unconscious lives, education can't happen because the door is not open...if it were open, new responsibilities would flood the self...a state of chosen homeostasis would be challenged. Not a lot of people are willing to go there because IT's a "no man's land."

  6. Absolutely Phil. I never bother myself with these thoughts but when someone else presents with this mysterious ignorance I feel that the best thing is to bring it out into the open so that we can progress. All the best to you and your family.