Long Overdue -- A Day in Their Life

(This piece is from back in August. My apologizes for the lengthy post gap, and my thanks to you, loyal readers, for bearing with me).

When in London, we like to visit friends, and one family in particular who we're pretty sure we won't be able to see on our side of the world, since they rarely travel outside of England.

Their first-born, D, is a handsome, dark-haired boy with huge brown eyes, who came into the world with an exceedingly rare condition that has left his mind stranded in early infancy, even as his body continues to grow. On our last visit, when D was five, they shared with us one of his recent accomplishments -- reaching forward to push a large button on a musical toy. Now he is seven and he is much the same, only bigger and heavier.

Our time with them this afternoon was brief, which was really too bad, but during that two-hour visit I began to understand a little more about a few aspects of their lives. Here are some of the "simple" things, things I'd barely thought about before now.

Recycling. I offered to take a couple of glass bottles out to the curbside bins, and casually remarked that I wished Israel also had a curbside recycling program. Our friend, D's mother, pointed out that since cardboard was added to their borough's list, only a few months before, their lives had gotten a bit easier. Previously, they disposed of all those carton containers housing D's special feeding and care supplies only by dividing them among their neighbors' waste bins, since London's notoriously strict waste collection laws require that all items fitwithin the bin, or else forgo collection.

Shabbat. As D's body grows, he gains weight but not strength, and his parents can no longer lift him with ease. Several rooms in their house have been fitted with ceiling tracks for an electric hoist system to aid them in day-to-day care for D. But the hoists cannot be operated on Shabbat, nor can they be fitted with a time switch, since their control requires precise adjustments in real time, or D could be crushed. If they exchange the electric hoist for a hydrolic one (their health plan will only fund one), they solve the Shabbat problem but are stuck with an awkward manual one seven days a week. (One potential solution? Ebay...).

Unplanned "surprises." D and his family have known many good days in a row, days in which D can enjoy his classmates' company, bang away on his keyboard, and lie peacefully while his siblings play around him. And then comes the now long-expected unexpected: nonstop seizures that can last through day and night, leaving D exhausted and confused, and his parents feeling exhausted and helpless. It is just awful watching your child suffer, his mother writes me, and D clearly suffers.

Food and drink. D has dysphagia and struggles to swallow. All his liquids must be mixed with starch until they form a paste, to prevent them ending up down his windpipe. All foods must be pulverized, and even then he struggles to consume enough calories, and there are days when he suffers seizures and cannot eat at all. During these times he receives his nutrition via a PEG directly into his stomach, up to four times a day.

A day off. If our friends want to go away for the weekend, or even for the day, they must book hospice care for D in advance. Since hospice costs £400 - 1000 per diem, they must remain within their sponsored allotment of 20 days a year. (Last year it was 30; just another microcosmic fall-out of the market implosion). Twenty days of respite sounds like a lot, until you start to do the math:

One weekend = 3 days of hospice

Since any trip they take requires setting up D at the hospice care (half a day, plus/minus) and picking him up (another half a day), that's nearly one full day, already gone. One short trip abroad would use up half their annual allotment. (And yes, each of them has family abroad).

I haven't even touched on their morning routine --morning time, school travel, bath time, bed time -- since I don't know much about those things. Our conversation touched on other, "regular" issues, like our satisfaction level [medium-to-low] with our respective kids' education systems. (They have other, "normal" children and work hard to make sure these children lead "normal" lives, inasmuch as the siblings of special children live normal lives).

These friends are some of the brightest people I know. They are well-educated, balanced, hard-working, and kind. They have family for moral support, some extra help at home, and a hard-earned familiarity with "the system." But this is their reality, every day, and it is exhausting. Sometimes, when I feel my own exhaustion at the end of a long morning of work and an even longer afternoon of whiny children, I think of them. I don't know how they do it. But they do it.

If, despite the crash, you still have a few shekels / dollars / pounds to spare and would like to donate them to a worthy cause, please consider a respite program such as Shalva, a rehab hospital such as Alyn, or any similar organization -- there are hundreds -- you feel is worthwhile.

Keep the balance,

ALN