Should we really be talking about this?

Let's start at the end: what will be will be.

It isn't that I am giving in to fear or to assuage my fears. Yesterday when I went shopping my daughter came with me. She will be sixteen in January and she has had Segev as her little brother since she was three years old. We are still sitting in the car and I explain to her, in an attempt to inform in a calming way, the need for Segev to undergo the surgery for a tracheostomy. It isn't the first time she's heard me talk about it. She is nearly in tears.

I wish I could just cave and cry because it's nice to let yourself go like that. Not have to be strong all the time. But when I cry, and I've only started recently, it gives me a headache that lasts for a few hours. I cried for Anabella Ringgold when she passed away, for Owen and for Sebastian when I discovered his story and though he had already passed away I wrote this poem in his honor.

My daughter let me know that she well understands the danger for Buddhi having to undergo general anesthesia. I reassured her that I was not in a rush but on the other hand this has been four years in the making and his situation is getting worse.

Usually when a parent is in such a situation, and here it doesn't matter if it is with an extremely disabled child or not, a doctor will inform them of the necessity for the life saving or life prolonging procedure.  Some parents leave it at that, others investigate, learn, form an opinion, get a second and third opinion and then finally, like Timothy Ringgold and his wife did for the treatment for Anabella, make a decision to go ahead with it.

The outcome is uncertain. In the Ohtahara support group on Yahoo the notifications I receive are of parents looking for answers, procedures, medications, experience and also to notify that when they woke up that morning their daughter or son was no longer with them. When Segev had the VNS implanted it was the result of six months of convincing the neurosurgeon since he didn't like the odds of the surgery going smoothly with Segev being in his fragile condition, which wouldn't reflect well on his record.

When I wake up in the morning, after a normal night of getting up to Segev several times to perform physiotherapy, inhalation, turn him over, change his diaper and suction him some four to ten times, I wake with the feeling that, if he isn't with me anymore, it's OK. I mean to say, that I am aware of the possibility, the danger being ever present. Technical issues can lead to this with his pulseoximeter which sometimes slips off and doesn't sound an alarm. He hasn't had an episode of central apnea since the operation in '06 but of course his seizures cause him to stop breathing and SUDEP is often a result of suffocation after a seizure. 

Segev is so fragile in that his staying only slightly ill instead of plunging into full out severe lung infections is always only a few hours away. His body tricks him into not breathing. He is utterly defenseless, even against the ravages of gravity on his soft tissue, his veins, tendons and cartilage, his spine. Ironically, if not for his massive number of seizures each day, his muscle tone would be next to nothing and, I theorize, he would waste away even quicker. This is quite a thought by the way, that his seizures have given him a physical strength that assist him in some way.

That is the tension that exists each and every day and every hour: the difference of being ill and heading toward an inevitable end versus the will to survive and the tremendous effort and hundreds of little details that come together to make it so. One breath in, one breath out. Keep everything functioning. Only so many experiments to be made, with medications, with therapies, positioning, oxygen.

Segev doesn't complain about his breathing, no matter how bad it gets he never moans or cries or screams because he is breathing badly. If he cries then it's because he has real, hard pain.  This is why the sound of babies and children crying is so very nerve racking for me. Segev doesn't cry for food or because he is cold, it is from pain.

So he doesn't cry often, but when he does, it can go on for eight hours without stopping. Heavy narcotics can relieve him for fifteen minutes to perhaps an hour, but if the source of the pain isn't found and corrected it will just go on and on. He won't get tired, fighting, his body moving jerking and twitching for hours without respite.

Thankfully this has become rare. If I think back to the amount of suffering he has gone through I think, a normal person can not go through such a thing, not physically, exhaustion sets in, and not mentally. But Segev takes it. If he can so then I can shut up and hold him for five hours, pressing, massaging, administering medications and treatment, remaining (for the most part) calm and focused, paying attention to changes, sensing, so that I can either think or feel a solution. At the very least hold on. If I'm not stronger than him, I'm useless to him. A kind of reckless abandonment possesses me.

I look back and say, there is no way I can go through that again. I don't know if it is easier or harder. Things are changing. Have you seen the video on this page? Segev looking. Where did that come from? He is still growing, ever so slowly, his body maintains proportion, strangely.

And now the surgery. Everything that came before, relevant. So you see, every decision is connected, by emotion and by every moment of difficulty leading to this moment, the looming surgery. Of course this is a separate thing, but the difficulties accumulate, the lack of sleep continues, the stress more than necessary.

Then we look for calming influences and we look for strength. Still there is a risk and to take a risk you need courage. A mother like Jennifer needed enormous courage to say at her son Owen's funeral,  

Owen provided light and goodness to all those around him. He graced us with the gift of his smile, his laugh and his wide-eyed gaze. His effect was so profound, it is easy to imagine that he was heaven-sent for the sole purpose of bringing love to us earth-bound mortals.

There is no doubt: his energy was generous and loving and all encompassing – his value to this world is not to be underestimated.

But as I contemplate this thought, the circle of Owen’s life now complete, I know that there is much more to his story than this.

Owen came with immense challenges. Throughout his entire life, he was impossibly – sometimes unbearably – vulnerable and needy. Was he this way solely for our benefit? Surely there are easier ways for a soul to spread love in the world.

I believe he came as he did because he was on his own path of discovery, growth and healing. To only see him as an angel sent from above is to possibly miss the entire point of his life.

Perhaps his brilliant light shone because Michael and I chose to expose him to the world, love him completely, and not hide him away – and this community responded by looking – by holding our son in its compassionate, loving gaze. Maybe this is what he came for – to fulfill his soul’s need to be seen and loved, broken body and all. Perhaps his karmic need to be loved was so great that there was no option but to arrive in the body he did.

If this is the case then the value of Owen’s life is realized not in spite of his disabilities, but because of them.

Owen came to us, in his perfect broken state, seeking unconditional love and care. Your profound expressions of love and compassion, every day of his life, showed him he was worthy – giving him the lightness to smile back and say thank you.

Owen could have remained invisible, as so many like him are. Instead, we loved him deeply – and because of this I believe he returns home fulfilled and whole.

Words of very deep wisdom, like Claire's  My Prayer, absolutely brilliant. I view these two pieces of thought, Claire's and Jennifer's, like bookends and Segev, Owen, Sophie, Anabella, masterpieces of life. But never with the "what if?", what could have been of potential gone astray, of things lost. But rather,

where frailties which can no longer linger in blossom 

are all the potential that God has forgotten

the hidden things that need to become visible, not truly forgotten, only the appearance of forgotten.

Very well then, everything visible, the fears for Segev's future, the constant worry, specific to very real issues, open for all to see. Not, we shall see what happens, though, but rather looking at choices, to uncover that potential for the best possible future for Segev and not just, what will be will be.