August 12, 2011

It's all about me

How I, as parent and the main provider of 24 hour care for my extremely physically and mentally compromised son, react to the stress of this life is an issue of the utmost importance to me. I need to be able to perform to the utmost of my abilities at all times.

When Segev begins choking at 03.00 in the morning and I am required to wake and literally jump from my bed, grab the suction, place it properly and operate the tiny, nearly hidden, button on the device all within seconds, while repositioning his head as well as his jaw to help clear the airway, even when it is the eight time that night and will not be the last, after a very difficult day with him, with no rest whatsoever it is hard to say how long you can keep that up for. The days do roll one into another and therefor I never have any idea what day it is.

I had my hearing checked because for the last few years I've noticed a very significant decline. It seems that human voices are the most difficult thing for me to discern. At the end of the test I was told that I have exceptionally good hearing and that if it has declined then I must have started from an extraordinary level to begin with.
I now need more light to properly see. "How can you see that without any light, Eric?" is a sentence I've often heard.

The other day I lifted Segev out of the van and headed towards the stairs. I held him on the opposite side that I am used to because my back was acting up. Suddenly I felt a twitch in my back and down I went, my legs unable to support the added weight of Segev. Instinctively I held him tightly to my chest, high up, so that he would be the last thing to hit the ground.
He was still in my arms and not touching the ground when I was able to call out to my son, fortunately still in the house since his induction into the army was a few days away.  He took Segev from my arms and carried his little brother up the two flights of stairs while I tried to get to a standing position.  With home treatment I was able to stand up straight within three hours and lifting Segev again within another three.

I thought super powers meant that you had them forever. So now I am afraid. I've already had to resort to a leg brace when carrying Segev up and down the stairs for over a year since the torn knee ligament makes me unstable. An operation would put me out of the running and make it an impossible burden for his mother to care for him. I mentioned my son is in the army. Summer vacation has nearly ended and then my daughter, who does her best to help, will be back in school.

So I am a bit afraid. Now for the first time I feel as though I'm "winging" it. I'll just have to see how it goes. There is no control in that, no certainty and seeing certainty pulled from my clutching fingers is what has gotten me into this maelstrom I've been feeling ever since we left the hospital the last time. Segev hasn't returned to a "comfortable" norm since.

Recently he has gone through some horrific pains, apparently, but not for certain, a kidney stone. We had to rule out a number of things including pancreatitis, medication side effects, partial bowel obstruction (still not ruled out). One doctor suggested it might be a general neurological deterioration. Segev received a lot of pain medication. Treatments by me, with varying results, continued night and day. Sometimes a sudden smile would appear on his face only to be replaced by an excruciating scream a few minutes later.

This lasted for two weeks and made even the stertorous life we usually have even more heavy handed and unforgiving.

I'm becoming a blunt instrument, I thought to myself. For those of you who can understand this, my heart goes out to you. Because you've been there, like a zombie pressing on in some mode of instinct.

Getting a grip on things when you know you are losing your grip is a dangerous place to have to be. There is some new dynamic recently introduced into the picture, some help for the house and possibly for Segev. Change can be a good thing and I will certainly try to flow with it, looking carefully for positive effects that are so much needed.

Most of it is in the mind, I believe. How we react to a situation, especially when worn down by physical ailments and fatigue, is the one element we can have a modicum of control over. What happens outside is often not in our sphere of influence, but changing how we perceive things is actually within our abilities. All we need is willpower and the right tools.


  1. My heart goes out to you too...

  2. Because you have so much to share! Please stop by I would be honored to share The Versatile Blogger Award with you. Stacie

  3. Eric...I have so much empathy and affection for you and Segev. While we live a portion of your experience, your intensity of involvement far surpasses mine. I know of no parent of a severely disabled child who gives evidence on a daily basis of the depth of love which I see. Your hands preserve life, your energy is the spark which sustains that life. I always stand in awe of the depth of strength that you are able to muster...perhaps "a miracle worker"? My warmest regards and deepest admiration..I wish that that half the world did not separate us.

  4. "All we need is willpower and the right tools" -- I imagine those tools to include real help. May you receive some.

    And blessings and love to you both.

  5. I admire you for your absolute commitment to your beautiful son. Not many people would have the fortitude to go through the absolute physical and mental anguish that you experience daily. He's worth it. You do need to get some assistance though otherwise you will end up not being capable of providing the care that Segev requires. You will get sick or injure yourself through pure exhaustion if nothing else. I have relied on my other children over the years, and they have been amazing, but they need to move on and live their lives. So I know how hard it can be at that point. You realize how you managed when they were little - physically it was possible. My son is now 138 lbs and impossible for me to carry. You can't keep doing al that lifting - you will definitely suffer.
    I know it's hard to get good in home care - but with you supervision it should be fine. You still need to live.

  6. Thanks for the hugs,
    Phil great words of encouragement as always,
    Elizabeth, hopefully I'm open to it,
    Marcelle, good strong points, I appreciate your comments.