December 14, 2010

Day 4663

I've been going into the past a great deal lately. I think it may have something to do with my mother's condition but also this long hard journey with Segev. I find myself thinking about experiences I had as a child but also a lot about the beginnings with Segev. When I started corresponding with families around the world, reaching out through support groups and forums and the facebook pages it was clearly because I knew how lost I was then, despite my medical training, no one offering the slightest inkling of help or advice, what to look out for, how to deal with certain practical issues. 

I had to not only learn quickly the medical aspects to investigate as well as treat certain conditions, but because no physician out of dozens could offer more than a shrug I was required to know more  than what the professionals knew and I guarantee you that in many specific areas of study, I succeeded. Not everyone can do that so I felt compelled to try and share some knowledge, succeeding somewhat. Giving free consultations, as it were, since I have little else to do in between the moments of caring for Segev and believe also that after Segev extremely disabled children is where my calling lies.

I have to wonder just how long can Segev last.  I have to live each day as it comes. It isn't possible to plan ahead when even treatments or diagnostic appointments routinely get canceled because Segev isn't up to it. We never go out anymore. Too much equipment to prepare, bring, coordinate, attending to Segev too complicated to do properly out of the home.

Every thing changes with Segev all the time. His environment is stable. His body changes; his chest expanding forward, his hunchback backward causing his breathing to become less and less efficient, more laboured. He has an exacerbation of his bronchiectasis each week now. He vomits frequently, aspirating some, adding to the cycle.

Segev's bowels are always in trouble, in danger of becoming obstructed once again. Work to move his bowels by pressing and massaging his abdomen is not a daily thing; it is an hourly thing.

The number of times Segev gets chest physiotherapy depends on how filled up his lungs are. On good days, with no fixed schedule for each session, they number about five times in a day. On bad days you don't keep count.

It's winter now and since Segev doesn't move; his poor circulation lets his feet and lower legs become icy cold. Keeping them warm is a 24 hour occupation.

Segev continues to have about one hundred seizures a day, despite the three medications and ketogenic diet. I try to rotate out medications, gradually reducing the dosage in order to see if a particular drug is still effective after so many years, having eliminated others altogether. Any reduction sees his seizures increase in frequency and severity. One of the drugs even increases his small seizures, but my concern is naturally for the big ones. The ones that come along like a freight train and take.him.out.

I even went so far as to have the VNS machine implanted despite a very slim possibility for success and now it sits their in his body a cold useless piece of circuitry.  You can't even take it out because the wiring is wrapped around the vagal nerve in the neck and fibrosis won't allow a clean, injury free removal.

You might think all of this is a routine for me by now and here and there I've certainly mentioned these difficulties before. But there is no routine when you can see how coordination suffers in the morning, demanding even more of you. When you forget things and there are time when you find it difficult to focus even on the task at hand. It's like one of those plate spinners who has to run around from pole to pole keeping the plates spinning lest one fall and break.

Segev is ill, so are we all but it certainly has wrung something out of me to keep his treatment up to par. My other two children are Segev's assistant caretakers and they have had to shoulder a little more of the load lately since I decided I can no longer be entirely alone with Segev for two days at a stretch. They know that if they want to go out it depends on how Segev feels. This has always been a shadow over family life but it actually has only started to become the de facto rule recently, since I feel my strength becoming less. 
Early next summer my oldest has to go into the army for three years. I can't possibly think that far ahead but perhaps I need to force myself to do it. It seems that the more decrepit Segev becomes, the more I cling to him and all the more I can feel some other reality beating at the door. How many other responsibilities am I letting slide? I even thought I should devote more time to try and stabilize the financial situation, at the cost of Segev's health since the bigger picture can bring our health down as well. There was a time when I could have shifted my focus but now I no longer even see a way how.

Things appear to be getting more and more complicated and I ask myself how much am I contributing to it? 


  1. I read, and I know the feeling of heavy overwhelmingness. I have no words of consolation. Sometimes I find that letting go of my attachment to Anaya helps. I still love her, but sometimes let go mentally of my need for her to live. It lifts the weight for a while, until I am ready to shoulder it again. I remind myself that it's her life- not mine to control - just to help as best I can. When the time comes I pray I will be able to let her go with grace. Until then keeping her comfortable can be such a's such a dichotomy. I'm ok with death but not with discomfort. Can you really have one without the other?

  2. After 12 years of caring for my severely disabled son, I understand the depth of your weariness and exhaustion. All I can offer you, my friend, is understanding of your feelings and thoughts. Several years ago, my one consolation and re-motivating force came from a comment my "shrink" made to me: "Don't you realize that you and your son are one person, the same person?" I reflected on that for years and am still deciphering its meaning? I send my warmest regards!

  3. Camara, death is inevitable so the focus must be on life and making her comfortable. You've all been "cheated" in this life, but there is no doubt in my mind our children are given to us for a reason - the trick is to find what that reason is. Stay warm over there!
    Phil, thank you again for kind words and intentions. I actually wrote about being one with my son but I reject it. He may be wholly dependent but he in the end is his own being. I suppose the connection is so strong that it makes us one. Best regards to you.

  4. My grandmother, who was confined to a wheelchair and completely dependent on us for her care, lived with us from the time I was 10 until my parents had no choice but to move her to a nursing home, as my mother and I could no longer care for her at home. Her caregiving was not nearly as time dependent as caring for your son is, but it meant that someone needed to be there at all times for her. It was both an honor and a duty to care for her, but as an adolescent it was often hard to understand why my sleep cycles were dictated by my grandmother's. And yet, when she was gone, I would have gladly shifted my sleep to match hers for another day with her.

    Your words go out into the world and are heard. You and your family are held in your readers' hearts. I am sure that those who believe in a creator offer prayers on your behalf, and those who claim no creator still hold out hope to the cosmos that you will be comforted, yours, your family's, and Segev's journey eased. I wish there was more I could offer than words.

  5. Kwombles thank you, for me words can mean a heap and your words show you can relate to something that is difficult for me. Without Love there is nothing.

  6. Then I send you words and love and the promise that I will continue to read your words so that you will know they are heard and felt and that your family is cared for.

    It is an honor to read your journey and to be able to share some of it.