Pas de visite!

Passover Miracle

Pesach began on the first of April in 1999. Siobhan was going to Eretz Florida for Passover. When you consider the enormity of the responsibility of caring for her around the clock this was a very big deal. True respite really seems like a miracle. Siobhan was traveling with a family that has been a part of her life since preschool. They have been wonderful to Siobhan, even including her in a few of their family trips like the time in 2001 they went to New York and they saw The Producers with Matthew Broderick and Nathan Lane. To this day Siobhan has The Producers soundtrack at the top of her playlist. Who knew it would turn out to be true. But in 1999 they were going to Florida to join in celebrating Passover with other family members. That gave Linda and I  a few days to do something. Our Passover miracle was a three and a half day stay in Paris, France.

Churches and Museums

I studied French for many years. Linda never ceases to remind me of this because I have a marked inability to speak French. I can read fairly well, and with some looking up I can write, but when it comes to having a conversation in French I’m at a loss. Come to think of it, this is also evident in English. My vision of France, imparted to me by a few very good French teachers, was heavily informed by movies and restaurants. At that point in 1999 I have seen the good French movies (the ones without Gerard Depardieu) and I believe that the French, well, they see things marvelously differently so I was looking forward to experiencing the marvelous cultural differences. And from the French restaurants we visited in Manhattan I had a distinct impression that fine dining is a French national glory not to be missed, and I was looking forward to the glorious food. Linda was thinking churches and museums. And that is what we saw, churches and museums.
portrait of jesus looking up towards crown of thorns on head

The Relics

Since we were on the mostly church tour, and since I knew the story of The Relics, and because legend has it that the crucifixion of Jesus started at nine o’clock and that he died at two I made sure that we visited Notre-Dame Cathedral the afternoon of Good Friday for maximum effect. The Relics are only out of the crypt each Friday of Lent and for three days at Easter. But wait, what are The Relics, and what do they have to do with Notre-Dame? The Relics of the Passion at Notre-Dame de Paris are a piece of the one true cross, a nail of the passion, and (timpani booming) the crown of thorns. If you have questions at this point about the provenance of these objects I refer you to Helen, mother of Emperor Constantine; Baldwin the II, the Latin Emperor of the East; and the holy King of France, St. Louis. That is the chain of evidence. Look, either you believe in this or you don’t. I don’t, and that figures in our story.

Two Knights

Ah, but there is one more link in the chain. After the little matter of the Revolution in France the churches were hey presto no longer owned by religious orders, they became the property of the people. The Relics of the Passion were handed over to the Dean and Chapter of Notre-Dame Cathedral and given to the statutory care of the Knights of the Holy Sepulcher of Jerusalem. The Jerusalem part has me shaking my head but this is why two Knights are always in attendance when the Relics are presented to the faithful, and in the faithful part lies the rub.

Pas de Visite!

So the scene now set we join the queue in Notre-Dame Cathedral on Good Friday, the second of April 1999, at approximately the hour of the death of Jesus. Way up at the head of the queue is a man in the uniform of a Knight wearing rather incongruously thick white gloves. He has a pole in one hand, and at the top of the pole is a signboard. From time to time he thumps the sign board and calls out loudly pas de visite! pas de visite! and each time he performs this ritual some people peel off from the line and walk away. I am curious, but perhaps this is the marvelous French culture that I want to see in action, so I continue looking around and talking with Linda. Again the Knight thumps the sign board and calls out loudly pas de visite! pas de visite! and several people peel off the line never to be seen again.

Relics Revealed

It is not until we get up rather close that I read the sign. It is an admonishment! I had heard about the bristly nature of the French when you cross their cultural lines, such as ordering the cheese plate up front, horrors! The admonishment is very clear. As I’m reading it the Knight thumps the sign board and calls out loudly pas de visite! pas de visite! and several people peel off the line ahead of us and we only have about eight feet to go. The sign says that the Relics are not for visiting. No. The Relics are for veneration! And then we are even with the Knight and he is extending to me some sort of holy card for which he clearly expects an emolument. Not expecting this I fumble in my pockets for money. I come up with something that from his look is not enough and we break free into the main altar area of Notre-Dame, joining the line of venerators. And there they are, the Relics, ensconced in gold and crystal reliquaries laid out on velvet cushions with the Knights in attendance to make sure that you exhibit veneration and not visitation. There is a clear sign of your compliance. You are expected to bow and kiss the relics.
crown of thorns in ornate gold and crystal reliquary on velvet cushion in front of portrait of jesus wearing crown

Holy Moly

Remember I mentioned that either you believe in this or you don’t and I don’t? Proving that there are indeed atheists in foxholes, I was, how you say, conflicted but not by disbelief. I was immediately overtaken by the image of all those who had come before me and who had slobbered their lips all over the Relics. No time to think at that point. I just pressed my lips as shut as I could and barely grazed the Relics and joined the exit queue. Next time, I vowed, we would go to an atheist country. It took us a while, but after that we all went to Ireland so that idea was right out!

Three Days

You might also remember that up front I said that Siobhan was going to Eretz Florida for Passover. Excluding travel we had about three and a half days on the ground in Paris. When you really think about this it boggles the mind. We did make it back to Los Angeles just in time to get our car and hightail it back to the airport to pick them up. Such is the life of a parent, especially a parent of a child who needs round the clock care. Any period of respite is usually very brief, and during that time there are taxes to do, or the wash, or writing a scholarly paper or even this story or any number of things that are next to impossible to do when Siobhan is here. We were very grateful to have three and a half days to experience Paris and visit churches and venerate the Relics. I will never be the better of it.

O’Keefe & Merritt Stove

This year, part of what I am thankful for is a stove. Not just any stove, a stove with a special history.

Raised lettering tactile graphics O'Keefe & Merritt nameplate O’Keefe & Merritt nameplate on front of stove.


It’s now 20 years since we moved into this house. It was rented out prior to our buying it. It needed lots of repairs, which we’ve been doing bit by bit over the years. The kitchen is largely the same as when we moved in. It originally was two small rooms, one of them a dining room. The previous owner tore the wall down and made it a bigger kitchen with French doors. Thank you previous owner, this kitchen is great.

Old Stove

The stove that came with the house was not so great. It was an inexpensive Sears special. Over time it disintegrated due to improper venting of the heat from the pilot lights. The stove top began to split around the edges from condensation that rusted out the stove top. The final straw was when we were cleaning out the ceiling stove vent and someone stood on the stove to get the vacuum hose as far up as she could. After that I decided to look for a replacement.


My dad had a Sears credit card, so whatever we got was the Sears version. It was a pale imitation of Bizzaro world where on garbage day the Bizarros gleefully receive valuable garbage. In popular culture “Bizarro World” has come to mean a situation or setting which is weirdly inverted or opposite to expectations. This was annoying. So I went to Sears to see what was up with stoves. I saw that mostly all of them had a fake chef’s stove kind of thing going on. I didn’t look too much past the electronic doo-dads festooning the stoves. First thing to break, I always say. Besides, if I wanted a chef’s stove I’d go to a restaurant supply and get a real stove.


So I was inspired to look on Craigslist. I wasn’t expecting much and indeed, the results showed one listing. O’Keefe and Merritt stove, working condition. That was towards the end of the week and I made an appointment to go see it that Saturday.

Stove with double oven doors and pancake griddle top center in old fashioned kitchen
Stove in original owner’s kitchen.


That Friday I went to Antique Stove Heaven where I learned something about O’Keefe & Merritt stoves. I was hooked. Packed into a storefront showroom were beautiful stoves all restored and shining with impeccable porcelain and gleaming chrome. I had a 1955 Chevy, a 1959 Jaguar, and other old cars and old boats that I tinkered with and kept running. These stoves reminded me of the beautiful old cars I loved.

Original Owner

That Saturday I went to see the stove and arrived at the unmistakable scene of a home being dismantled. Some things were being discarded, everything else was for sale. The woman who owned the house was in a nursing home. Her relatives and friends were clearing the house out to prepare it for refinishing and sale. This is a thank you to the woman whose stove we now have. I can imagine that some fine meals were cooked on that stove. I also imagine that she bought the stove new in the early 1950s. She certainly took good care of it since it was still working after all those years. Thank you so much. Arigatou gozaimashita.


We arranged to buy the stove on 14 November 2015. We also bought a 1950’s Virtue Brothers white/gray “cracked ice” Formica & chrome extension dining table with extension leaf and 4 matching chairs in remarkable condition.Formica and chrome table with blooming christmas cactus and stove in background
Table showing gray and white cracked ice pattern with Christmas cactus. Stove in background.


Then there was a delay picking up the stove because it didn’t have a modern gas hose with a shutoff valve, it had a straight pipe. We tried to dislodge the valve at the meter, but it was stuck tight. We had to wait until the gas was disconnected at the meter. It wasn’t until 12 December when the gas had been shut off and the stove was ready to be collected.


I picked up the stove with my daughter’s good friend Juliana and her friend Lon, and put it in my backyard patio under a tarp. Shortly after that I had a stroke. It wasn’t until 6 June 2016 when I was able to focus on the stove. It was slightly worse for the wear being out in the weather, but nothing a good scrubbing and some elbow grease wouldn’t cure. Or maybe not.

Stove top off revealing lots of rust.
Stove top off, burners disassembled, drip trays removed revealing lots of rust.

And Double Hooked

Meanwhile I read everything I could about O’Keefe and Merritt stoves and after reading a website detailing an amateur rebuilding one of these stoves I concluded that my usual bumbling about while fixing things mode would not do. Risking gas leaks and possible explosions was not in the cards. Aside from the risk factor there were parts that needed refinishing, might as well get it taken care of professionally.


Antique Stove Heaven came to my house, gave the stove the once-over, and noted the problems. They came again to take it to Heaven and eventually returned it completely and beautifully restored. After that they came out to correct an issue with one of the burners. Great service!

Stove top off now cleaned and repainted.
Under the stove top repainted, burners re-porcelained, being reassembled.


I have to thank Antique Stove Heaven for making this O’Keefe & Merritt stove a beautifully restored part of our family. I imagine that we will be cooking many fine meals on it, just like I imagine the original owner did. Thank you O’Keefe & Merritt, thank you Juliana and Lon, and thank you very much to the woman who owned the stove and kept such good care of it. Thanks!

Stove with lid folded up fourd doors on front four burners and chrome pancake griddle in middle of cooktop
Beautifully restored 1950s O’Keefe & Merritt stove installed in our kitchen.

Linda hoding spatula in Hello Kitty apron with six pancakes cooking on the griddle
Linda making some gingerbread pancakes on the griddle.

Just Keep Swimming

Pressed for Time

This will have to be the short version without too many researched links because I only have a limited amount of time in which to write this post. Those of you who are caregivers for people with severe disabilities will probably appreciate this fact of life. Or maybe this is the modern human condition in general.

Adaptive Physical Education

In the #USA we have some laws: Education of all Handicapped Children Act of 1975, Americans with Disabilities Act, and the Individuals with Disabilities Education Act that essentially means that students with disabilities can join in all the reindeer games. You see, at least in the classic video Siobhan likes so much, Rudolph has a disability. His nose glows. Anyway, Siobhan was eligible for lots of services and Adaptive Physical Education (APE) was one of them. Again, pressed for time, I won’t go into all the less than effective methods of providing APE for kids who need it. Next time you’re among a crowd of severely disabled people notice how many seem fit and trim to you. I rest my case.

Swimming Achieved

One of Siobhan’s early APE teachers said that he would like to teach her to swim and he did so. Just like that. She was in school in Malibu at that time. We’re in the Santa Monica/Malibu Unified School District, just to explain how she came to attend a Malibu school. She had a long bus ride to and from the school and other aspects of it were very bad for Siobhan but Gary, the APE guy really did begin the process of teaching Siobhan to swim. This was nothing short of a miracle as far as I was concerned. Thank you Gary.

Pool Access

The next year Siobhan did not go back to Malibu, She came back into Santa Monica where it was easy to drive her to school. And we wanted her to continue her swim program which was the only part of APE that she was benefiting from. She can’t run, and she can’t jump, and she can’t kick a ball easily, but she can swim. There are some details I’m going to get wrong since I’m writing this quickly, but what I remember about this stage of events is that the school principal wanted to keep Siobhan out of the pool. If she had a bathroom accident in the pool they said they’d have to drain the pool and charge us for cleaning and replacing the water. This probably sounds familiar to other people who have been banned from facilities use because of the color of their skin, or their religion, or any number of other things. In any event, we persevered and got pool access, and Siobhan never had a bathroom accident and by the way Olympic swimmers pee in the pool all the time.

Lifelong Skill

Nobody expected that Siobhan would go on to win Special Olympics gold medals because they see her disabilities and dismiss her. This is the essence of disablism. We have had to fight for pool access ever after that, including in the present, now that she’s out of the school system, but Siobhan continues to swim four or five times a week. And she’s trim and fit. And it was all worth it. Just this week she had a tough time with two other swimmers in her lane at a public pool but she persevered. As Dory in “Finding Nemo” says: Just keep swimming, swimming, swimming, swimming, just keep swimming…

Joe and Lucy

Irish Emigrants


My mom, Lucy, was born in Tullamore, Co. Offaly, Ireland in 1921 and lived in a small house right next to a church. One wall of her house made up one of the walls of the churchyard. She had a brother, Jack, who was hit by a car when he was young, after which he was in a coma for months. What they said about Jack was that “he was not right” after that. Lucy’s dad was a baker, and her mom was somewhat of an invalid. She had what they called a milk leg. This, it turns out, is lymphedema, and it runs in the family. I have the condition in my left leg, as does one of my cousins. When she was eight years old, Lucy’s dad died, and her mom died when she was twelve. This left her to care for Jack and herself, so she went to work in a sausage factory. Her mom’s four sisters had all emigrated to New York and eventually they sent Lucy passage on a converted Liberty ship and she left Ireland in the late 40s. Later, when she had saved up enough, she sent for Jack. He described something he witnessed on that Liberty ship: “There was a storm, and you could see the two ends of the ship rising up and the middle bowing down.” It’s a wonder they lived through it all.


My dad, Joe, was born in 1917 in the kitchen of the family farm in Ballyheigue, Co. Kerry, Ireland. His mom, Mary Ann, emigrated to New York sometime after he was born, leaving him to the care of the family. He grew up wild, and would do anything to have a bit of fun. He told me about being very young and hiding in the thatched roof of a house where there was a wake in progress. He and his friend Mikey spit down on the people inside and eventually one of the women below remarked “wid a wah, it musht be raining” in a slow Kerry drawl. He talked slowly all his life, though he eventually did acquire a mild New Jersey accent later on. He fished, and helped with the farm work, and tended lobster pots and had many stories to tell about dangerous adventures at sea in a currach, which is a wood-framed tar-paper-covered canoe they made themselves. I’ve seen the waves on the wild Atlantic coast where he was raised and it’s a wonder that they lived to tell the tale. He also attended a one-room schoolhouse where the fee was a lump of coal a day or maybe some spuds. We have stayed in the Old School which has been restored beautifully on our visits to Ballyheigue and I highly recommend it. He did not come into the farm, and figuring that he’d try his hand at making some money, he went off with a friend to Dublin, then worked the sugar beets in England, and finally emigrated in the late 40s to New Jersey where his mom lived.

Joe and Lucy

At the time they arrived in the New York area, though the Irish made up a sizable portion of the population, Dad told me that when he went looking for work, there were many factories with signs that said NINA, or no Irish need apply. It also meant no Italians need apply. He did find work though and he was never without it again. He had an iron willed work ethic and seeing my somewhat less enthusiastic approach to work he said of me: “he loves his job so much he’d lay down beside it.” Nonetheless, I was also a hard worker even though he called me a “narraback” or narrow back from a lack of hard labor like cutting turf or tending lobster pots. My dad was interested in dancing and sports and meeting up with the new friends he made. Weekends saw him up in The Bronx at what they called Croke Park which was actually Gaelic Park. There, at a dance, he met Lucy. They eventually married, settled in Bergen County, New Jersey and had two children, me and my sister Una, who still lives there. Joe and Lucy are gone many years now. I’ve tried to live up to their expectations and think I have. My heart aches at missing them, but this is the way of the world. We don’t get to stay forever.

I Want Santa Claus

Giant Twinkie

When Siobhan was very young and was finally able to sit up by herself I had a habit of putting her in the supermarket cart seat with the cart reversed. Pushing with the cart reversed meant that Siobhan rode up front with an unobstructed view of things. She loved it, and would clap her hands in approval.

We were nearly at the end of a supermarket aisle when it happened. A seven foot Twinkie came around the corner face-to-face with Siobhan and it said something I couldn’t hear. She flipped out. The Twinkie then made things far worse. There was a grill on the Twinkie body so the wearer could see and breathe but the grill was way lower than the costume’s printed face. Shifting in the costume to make his face visible through the grill the guy in the Twinkie started repeating “It’s OK!” right in her face. By this time she was wailing. This all took a few seconds but by the time I was able to say “Stop!” and reverse the cart the damage was complete. After the Twinkie there was no consoling her.

To this day she gives a wide berth to costume characters in enclosed suits such as may be found at Disneyland. Princesses are somewhat OK since their faces are showing and she loved the Little Mermaid for a while, even standing next to her to pose for a picture.

Public Service Announcement

Just a public service announcement to people in general about the actions not to take when you upset someone, as the Twinkie did to Siobhan. Getting in your victim’s face and repeating “It’s OK!” is not a good idea. Thank you.

Mall Santa

Siobhan went to get her picture taken with the mall Santa a few times, all unmitigated disasters, and we decided Santa just wasn’t for her. Two years ago when Siobhan was twenty years old we were out walking on the Third Street Promenade here in Santa Monica. I happened to mention that Santa was at the mall a few blocks away and we should go visit him and walked with her in that direction. A block away from the Santa entrance she made a sharp right and walked all the way around the mall to the entrance where Santa was not. A trip to a mall Santa this year confirms her undying revulsion. She’s right, you know. The Krampus agrees.

Seasonal Expectations

Left to my own devices I wouldn’t do anything to mark the Winter Solstice, but Siobhan has high seasonal expectations. Many years ago I put up old fashioned holiday lights on our front porch and took them down in January. She insisted that they be put up again, and so we have red, green, blue, and white holiday lights on our porch year-round. At least it makes it easy to give directions to sighted visitors. Mind you, Siobhan does not read or write or speak vocally, but she knows when it is time to start watching “It’s the Great Pumpkin, Charlie Brown” in advance of Halloween. She also knows that around Thanksgiving is when you start watching (the original, black and white, please) “Miracle On 34th Street.” She has a finely tuned sense of the time of year and the passing of seasons. She is elemental. She is smart.

Santa Letter

In 2013, out shopping on December 24th, Siobhan stopped in front of a train set. Trains are a passion for her. She looked long and hard at a train set, and returned to it again after moving away. After she came home I raced to the store and picked it up. That night I helped Siobhan make a picture letter. At the top was a picture of Santa, followed by a picture of the train set. I told her that this was a letter to Santa from Siobhan and her eyes got wide. Then I asked her if that was the train she wanted. Yes, she signed, very emphatically with a very visible up and down motion of her arm and flick of her wrist. I had her write her signature on the letter, and I told her that we had to wait for Santa to come that night. The next morning the train was under the tree. Did she believe in Santa, or not? She didn’t like the mall Santa, but that might be attributed to the Twinkie effect. How could we tell? Why is this significant to me? I’d just as soon go to Disneyland on December 25. As a matter of fact, that’s where we were this year, eating at the Blue Bayou inside the Pirates ride. Well, it turns out that I’d like Siobhan to believe in Santa as a matter of her personal growth, yet she had never asked for Santa on her own. What was up with that?

Pure In Heart

What’s the one thing that was missing in this equation? She doesn’t like the mall Santa but she clearly has a very good idea of exactly who Santa is. How is it that Siobhan knows in her heart and mind that Santa can bring her a train? Maybe she doesn’t. We never engaged in “what do you want for Christmas?” with her, she’s never watched commercial TV, doesn’t know from toys or gadgets. For that matter, she’s always been totally indifferent about birthday presents and presents in general. Sure, she loves tearing off wrapping paper, and she’ll gladly unwrap all the presents, even those not meant for her, but this is nothing other than a fun process to her. At her birthday each year we have about forty people over and we tell them in advance, “Siobhan doesn’t want presents, she just wants the experience of your company.” And it’s true. So if Siobhan doesn’t want presents, and she can’t stand Santa “in person” then what is the essence of her Santa experience? It turns out that Siobhan is pure in heart in that she loves Santa for what he does and represents, not for what he can bring her, and she learned this from the large number of DVDs she has that include Santa like “The Rise of the Guardians” and “Rudolph The Red-Nosed Reindeer” and “Frosty The Snowman” and many others.


So what was missing from this picture? What would let us know that Siobhan wants to talk about Santa at Solstice time? Well, perhaps having a word in her Augmentative and Alternative Communication (AAC) system would help. Dopey Daddy! Just before the Solstice, as soon as I made this brilliant long overdue connection, I put a Santa Claus icon in her Speech Generating Devices (SGDs). With all the thousands of words available to her, Santa was missing from her SGDs. Turns out Siobhan hit that button 112 times since then. Now at Solstice time Siobhan will be able to join in all the reindeer games, talking about Santa, and lights, and things that make the season merry.

Icon: Santa Claus