Mom at Bedside, Appears Calm. (But she's not)

The other day my friend Dave, a physician, sent me this article from the New England Jersey of Medicine. It is an article wrtten by a mom remembering a period of serious medical problems for her son. Interestingly, though, this particular mom is a doctor and so is her husband, the father of the child. That status doesn't really help them though. They are frightened parents, just  like so many of us. It captures the fear and helplessess that so many of us feel when our kids are in the hospital..

It's worth a read. I am giving the link and copying the article below so you can read it either way.

My favorite line "admitteddischrgedadmitteddischargedadmitteddischarged"

Been there. Hated that.

http://www.nejm.org/doi/full/10.1056/NEJMp1312171?query=featured_home


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Mom at Bedside, Appears Calm

Suzanne Koven, M.D.

N Engl J Med 2014; 370:104-105January 9, 2014DOI: 10.1056/NEJMp1312171

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We carry a nylon lunch bag everywhere we go, royal blue with purple trim, containing two plastic syringes, each preloaded with 5 mg of liquid Valium, plus packets of surgical lubricant and plastic gloves. At the first sign of blinking or twitching, we lay him on his left side, tug down the elastic waist of his pants, part his small buttocks, and insert the gooped-up tip. Within moments, the motion stops, as if an engine has been switched off. Then he falls into a deep sleep. When he relaxes, so do we.

He's 5 years old, the first time. Our babysitter takes him to a pizza place for lunch. He laughs mid-slice, blinks his eyes several times, slumps to the floor, and climbs back onto his chair. She hesitates — what was that? — and then calls 911. She pages me. I keep the message stored in my beeper, periodically daring myself to relive my first reading of it.

I meet them in the ER at the community hospital near our home, showily flashing my downtown hospital ID tag. Soon my husband rushes in, wearing the ID from his downtown hospital. All the tests are negative, they say. Bring him back if something else happens.

Something else happens. The next day, I skip work and keep him home from school. He sits happily in front of cartoons while I pace and polish, pace and fold. Maybe the babysitter overreacted, I reason. Maybe he's just a goofy kid. The moment I stop watching him, he cries, “Look, Mommy! Look what my hand can do!”

Downtown. No mistaking it this time. Grand mal, big and bad, right on the gurney. Lumbar puncture. MRI. All negative. Before we go home, the neurologist asks if we have further questions. “Just one,” I say. “What do we do if he does it again?” The neurologist seems surprised. His raised eyebrows silently ask, “Aren't you both doctors?” He hands us a pamphlet.

Dilantin. Chewable yellow triangles three times a day. Triangles to first grade and the beach and day camp and a sleepover. The other kid has cochlear implants. “Don't worry,” his mother says, accepting my baggie of pills. “My kid comes with instructions, too.” We become members of an exclusive club no one wants to join.

One day, almost exactly a year later, the school nurse calls. “It's been 10 minutes and it's not stopping,” she says. I'm home that day and I screech over in seconds, leaving one tire on the schoolyard curb. He's in the nurse's office, lying on the plastic divan reserved for kids with sore throats, bellyaches. Fakers. I know what this is called, this shaking that will not stop. I know how to treat this, in adults. But all I know now is how to hold him, jerking, foaming, soaked with urine.

In the ambulance, the foam turns bloody. I ask the ponytailed EMT whether he will die. She pretends not to hear, turns to adjust his oxygen. At the local ER, I bark instructions. “He has a neurologist downtown,” I say. “He needs to be transferred.” The ER attending, who has been bending over him with her lights and sticks, straightens. “I think,” she says, not unkindly, “Mom needs to wait outside.”

Tubed, taped, lined. Ready for transfer. There is one last thing. The ponytailed EMT hands me a specimen cup in which the source of the blood that had burst my heart open rattles. “Here, Mom,” she says, smiling. “For the tooth fairy.”

Back at home, 40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops. The weeks go by like a slow and sickening descent, landing on the carpeted floor of the playroom in our basement. We spend most of the day there because it's the only place in the house where he can't fall down the stairs. At night we tuck him tightly into Star Wars sheets but still find him on the floor in wet pajamas. If the Valium fails, we call 911. A fire truck arrives with the ambulance, and the firefighters, with their giant boots and helmets, crowd along with the EMTs into the small bedroom our boys share, delighting our younger son.

He is admitted. He is discharged. He is admitted and discharged again. Admitted. Discharged. Admitted. Discharged. Admitteddischargedadmitteddischargedadmitteddischargedadmit-teddischarged. My husband, too tall for the fold-out-chair bed, takes the day shift. I pad in slippers through the hospital at night with the other parents. We buy one another coffee. We commiserate. I grow more at ease in this sleepless company than with anyone else — my family, my friends, my medical colleagues. I also cling to the nurses, Jen and Sarah and Kristen and “the other Jen,” as we call her. One leaves my son's chart in his room, and I sneak a look. “Mom at bedside,” a progress note reads. “Appears calm.”

Finally, a break. The sixth or seventh MRI shows a subtle irregularity in the right temporal lobe, possibly a tiny tumor, a focus. We love the very word “focus,” a raft of hope in a vague and endless sea of anxiety. Never have parents been so happy to learn their child might have a brain tumor.

The surgery works. The medications are discontinued. I don't ask to read the pathology report, the operative note. I am startled by my lack of medical curiosity. I wish to know nothing other than that my son no longer shakes. After the staples come out, we pile into the car and take a 9-hour drive — unthinkable during the previous months — to visit my in-laws. On the way home, my husband glances at the back seat through the rearview mirror and, returning his eyes to the road, says, “He's blinking again.”

A second surgery. A third. This time, we're lucky. “The luckiest unlucky parents ever,” I joke.

Years pass. We renovate our kitchen and find the lunch bag with two dried-up syringes of Valium in a cabinet about to be torn down. Our emaciated boy doubles in weight and then doubles again. He graduates from high school. He graduates from college. He moves away from home.

I do not know how much he remembers. He rarely speaks of those years, except to comment on whether a barber has done a good or not-so-good job of hiding the scars.

As for me, occasionally my terror will snap to life again, as if I've been holding it by a long and slack tether. It happens when I am walking through the peaceful, leafy streets of our town, pumping my arms, working my aging heart and muscles, quieting my busy mind. A siren sounds. An ambulance appears. Though I know from reading the log in our local paper that the emergency is rarely dire — a dog bite, an asthma attack — and I know that my son is nowhere near, I still stop to see which way the ambulance is heading.

People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.

Disclosure forms provided by the author are available with the full text of this article at NEJM.org.

SOURCE INFORMATION

From Massachusetts General Hospital and Harvard Medical School — both in Boston.

Birthday Wish

Yesterday was the birthday of a new friend of mine. We've only recently met, but I can honestly say I adore him. I think he likes me too. He smiles at me regularly, though he doesn't say much.

Of course he's only 1, so that is to be expected.

He spent his first birthday, and much of his first year of life, in the hospital. It brought me back to Maggie's first year, the majority of which was spent in the hospital. She didn't spend her first birthday in the hospital, though.* The fact that my new friend had to is spectacularly unfair. Of course he didn't care. He just gave smiles to all and snuggled with his mom.

I know from experience how surreal and difficult it is to spend weeks in the hospital with your little one and I admire this mom, and all the others, very much. Perhaps it helps them to see me, a veteran of the war they are fighting, perhaps it doesn't.  I did realize something as I was walking home the other day. It is very different to have BEEN THROUGH something than it is to BE GOING THROUGH something right now.

While I remember the exhaustion and the surreal nature of that existence, I am acutely aware that I am not experiencing it right now. And believe me, the existence IS surreal. You adapt to the new world but can't remember how to live in your old world. Parents in this situation can converse easily with doctors and nurses using Latin terms like Caeser himself. But  if they are like me, they might have a hard time making a coherent sentence to family and friends. You know that the earth is knocked a bit off its axis and spinning unevenly, but you also know others don't feel that. They want to help and they do help, but they are not experiencing what you are experiencing. I felt like we were alone in this new world. It can be very lonely.

I remember the feelings. I remember the fear and the helplessness and the exhaustion and my general lack of "place" in the world. I remember the odd day when  I would actually get OUTSIDE and breathe fresh air and the way that felt for the first minute or two. It is not fun to remember those times, they were the hardest of my life. But I know I wouldn't be where I am now if we hadn't gone through them. And I know these other moms will look back the same way I am.

Fast forward 18 years and here I am - on the outside looking at parents who are doing what I did. I can relate and empathize with these parents, and tell them I really do know haw they feel, but I can also be happy that I don't have to feel like that everyday.

So listen Buddy, I have a birthday wish for you.  Get better. Get out of there. I want your second birthday and all those that follow to be at home with your mom causing all kinds of trouble. I want her to forget all the anatomy and Latin she has learned because I don't want her to need it anymore. I want her to buy you trucks and cool clothes and I want you to give her fits when you are a teenager. That's a tall order for such a little kid, but if anyone can do it, I know it's you. Happy Birthday.

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*If I remember correctly Maggie only spent one birthday in the hospital and she was admitted on her actual birthday. When you consider the hundreds of admissions she's had and the length of time she's been hospitalized, that's pretty good.

Neurology for $200, Alex

Maggie suffered a brain injury either before she was born or shortly after or both. It’s never been entirely clear because there was always so much going on that her delayed development was attributed to her medical issues unrelated to her brain. Eventually it became clear there was more going on and we started checking things out.  That meant visits with neurologists.

 A consultation with a neurologist first happened when Maggie was about two months old and still in the Newborn Intensive Care Unit. That doctor told me a a thick European accent, that “yore babee eez floppy.”  What did that even mean? I could feel panic rising. The nurse told me she says that about every baby and Maggie had all these medical problems so of course she was floppy.  Not wanting anymore problems, I ignored that doctor. Of course she was right.  Maggie was floppy and her medical problems were not enough of an explanation. But I had to deal with things we could DO something about.

I think we next saw a neurologist when Maggie was a year old because that is when we got the spastic quadriplegia diagnosis (a form of cerebral palsy). By the time we heard those words, though, we were already quite aware of her problems. It was confirming what we already knew. Maggie did not and does not have any seizures. Her neurological problems are what they are and other than constant therapy and occasional monitoring, we don’t need to see neurologists very often.  And  that is A-OK with me.  We’ve probably only seen one five times in her life. Now I go every three years and have a nice chat with the neurologist.

 As is their very difficult job, the neurologist tells you all the things your child will not be able to do and the limitations she will face. When Maggie was little, I would listen to the parade of horrible and wish I was somewhere else.  It’s never fun.  In fact I read an excellent blog post describing what it can be like for many families, especially those looking for answers.Check out  Annoyed at the Neurologist 

We, of course, are not like many families. I actually have a neurologist story that makes me laugh to remember. When Maggie was about three we had an especially entertaining visit. Well, entertaining for us anyway.  The attending neurologist was preening a bit for his residents and going on at length about what Maggie would never be able to achieve. I sat there like a punching bag largely ignoring him, because it wasn’t being said for my benefit. Don’t’ get me wrong, he was correct in his assessments, but just kind of coldly listing them off.

I interrupted him at one point and said, “Yes, she does have physical limitations, but she is cognitively intact.” 

There was a long silence until the neurologist said to me in a rather patronizing way,

“And just HOW do YOU know THAT?”

I looked at the several doctors and said with a grin, “she laughs at my jokes. She MUST be smart”

Silence again, except for my snickers (and probably Maggie’s). The doctor just looked at me and made a notation in the chart. That was the end of that visit. I don’t know what he wrote that day, but I presume it’s something like “Mother delusional.” Again, he may have hit the nail on the head there, but I was right about Maggie’s intellect.

Maybe I should publish a study.

Here Comes Trouble

When Maggie was younger and we were facing life and death things all the time, we had a hard time relating to the everyday problems in life. When folks would lament over traffic jams or having to host a holiday meal, we were very poor listeners. We were too distracted. Steve and I had a catchall saying for how we dealt with this in those days, which was, “They need more to worry about.” Today we don’t live on the edge of the cliff like we did then and can partake in the normal ups and downs of life like everyone else.

Now I find myself witness to a phenomenon that screams the opposite. I know and encounter several people who exaggerate a child’s circumstances to make things look much worse than they really are. Instead of saying “they need more to worry about,” there are people to whom I want to say “You have nothing to worry about. Be happy for that.”  Can anyone explain to me why some parents want to exaggerate the issues their child faces?  To make a situation seem dire when it is not? What could possibly motivate them?

Before going on, I want to differentiate this phenomenon from parents who have a hard time dealing with the issues their child DOES face, (even if I would trade them in a minute.)  That is completely understandable. Parents can handle only what they can handle. Any issue a child faces  -- from being teased at school to an isolated medical problem, or a chronic situation -- is difficult on the parents.  When a parent in this situation says to me, “I shouldn’t complain to you, look that you have to deal with,” I tell them my situation has nothing to do with theirs. It is not a contest and there is no measuring of grief or concern.

What I’m talking about are people who exaggerate or simply lie about their children, or children they know.  Perhaps others have not witnessed this, perhaps it’s some strange reaction elicited because of my life with Maggie. Perhaps these people are trying to relate.  I cannot explain it, but I see it regularly.

If they are trying to relate, I can tell you it is not working. It makes me want to run in the other direction. I have the exact opposite mentality. My glass is half full. Maggie’s glass is half full. And, as I told a friend recently the reason the cup is only half full is that I already took a big gulp and enjoyed every drop. We put the best possible spin on everything and proceed accordingly.  Sometimes that is hard to do, but it’s just the way we roll.

I get that everyone does not share this attitude, and I probably drives a lot of people crazy. I get that depression and concern are part of this life for all parents and some can handle things better than others can.

 What I do not get are those who take news and deliberately ratchet is up several notches to alarm themselves and others in the child’s world, perhaps even the child him/herself; or worse, those who don’t even get any news but simply decide a problem exists when it does not. These people I want to shake and tell them to thank their lucky stars they do not have real problems. I don’t shake them, in fact I generally raise one eyebrow and then ignore them. It’s easier. If that doesn’t work I give them this one line and go about my business.

 “Don’t look for trouble. It will find you.”   

Welcome to the Club?

I don’t want to belong to a club that would have someone like me as a member

                                                                                    --Groucho Marx

As a parent of a disabled child, I am a member of a group on one wants to join. The club is not exclusive by any means. It absolutely does not discriminate based on race, religion, sex, age, sexual orientation, socio-economic status or any other classification that I failed to mention. Disabled children are born into every conceivable type of family, in big cities, small towns and every other part of the world.  Where in the world you happen live often dictates the child’s survival and quality of life, but the disability happens everywhere.

I remember when Maggie was just venturing out into the world. She was about four months old and spent the first three months in the ICU. We went to pick up Eddie from his end of kindergarten picnic. The mother of one of his classmates came over to admire the baby. Everyone in the school knew about Maggie and her saga. The woman, an immigrant from China, looked at Maggie and said in broken English, “You are lucky she was born here.” I knew immediately that she was right. In many places, systems are not set up to handle the Maggie’s of the world.  Doctors may lack the skills or the support to save the child. In many other countries and in many parts of the USA, Maggie might not have had a chance at life.  She got that chance here and I do feel lucky in that regard.

In reality, though things are better here than in many parts of the world, the US as a society, is not really set up for the Maggie’s of the world either. People think they are, which almost makes it worse.  The infrastructure needed to provide care for her and her peers does not really exist. Rather, there is a series of disconnected, overlapping services that does not have a central intelligence or hierarchy. It is a competition between various departments of the government to avoid providing service. Each points to another department to provide what a family needs. It is the family that has to find its way through a morass of governmental, non-profit and private services. It is the family that has to track everything down and make it all work for their child.

Emotionally overwrought? Buck up.  Need money? Get a job. Can’t work because you have to navigate for your child?  Welcome to Catch 22.

No wonder no one wants to join our club.

When I hear of a family having to join our club, I feel bad. That does not mean I hate my life, I am used to it; but I know how hard it is for the parents to deal with everything.  It seems lately new members are arriving every day. Hopefully some will have only a short stay and their child’s issues will resolve. That happens to a few lucky ones. Some are lifetime members. This club changes you. Once you are a member, even if only for a short time, you see things differently. You learn quickly to appreciate whatever gifts your child and everyone else’s child brings to the table.  

Current club members embrace and assist new members in any way we can, but we’re really not in the market for new members. Nonetheless, they keep coming. 

Double Dutch

Some of you have been kind enough to encourage me to put Maggie’s stories in book form. Honestly, I would love to do that and hope someday to make it a reality. At this point,it’s more a matter of organizing and editing what I have already written rather than starting from scratch. Still, it is a daunting task and something I approach in fits and starts when I need to go full steam ahead.

Even in this day of electronic book readers, there is something about a BOOK that is so inviting. A book tells you to plop down in the easy chair or to put a couple of extra pillows behind yourself and get comfortable. You can carry a book around with you and forget it in the coffee shop where someone else picks it up and reads it. It’s a slow motion connection to relaxation and enjoyment.  And to know people were reading something I wrote? Delicious. Who wouldn’t want to see their name on the cover of a book?

Actually, that’s the only part of my book I have completely planned – the cover.  If I’m going to dream about this (rather than work on it) I might as well have it pictured in my head.

The title will be a reference to the essay Welcome to Holland a little piece of prose known by almost every parent of a disabled child. The writer, a mother of a child with down syndrome (I believe), compares having a disabled child to an unplanned trip to Holland when one was expecting to go to Italy. While Holland isn’t the expected destination, and all the sights of Italy will be missed, the traveler eventually realizes that Holland has its own benefits – it’s beautiful, the people are kind and it is full of flowers.  No, it’s not Italy, but it’s not bad. It’s just different.  

I have  love/hate relationship with this piece of writing. Originally, I loved it for its simplicity.When Maggie was a baby I found it a helpful way to come to grips with the foreign world I found myself part of.  As time went by, though, and the distance from Italy grew  farther and farther every day, I grew to hate the essay for the very same simplicity. I felt it oversimplified and cheapened the existence I was living. Other parents of disabled children I have talked to feel similar. One mom I know simply says F** Holland and another says it should be called “Welcome to Somalia.”  It is more comforting to those without a disabled child because they THINK they can grasp an understanding of what it’s like – and they can tell themselves it’s not bad, just different. If no one else will say it, I will: raising a child with disabilities is always different, it is sometimes great, but it is often very very bad.

What then will be the title of my book that may or may not ever materialize? 

“I Think This Might Be Holland.”

Despite the "hate" part of my love/hate relationship with“Welcome to Holland”, I have to acknowledge its role in the world of parenting a disabled child. It is iconic. Besides that, I have the perfect picture to go with it.  In 1980 – yes thirty years ago – I went to Europe with my lifelong friend Nonie.  We were in our 20’s and went for over six weeks with backpacks and train passes. It was a great time and we travelled through several countries.  A year or so ago Nonie found some pictures from that trip. She was handing them to me one at a time. After so many years the various places and adventures from that trip blend together. She was  trying to remember each one saying, I think this is Germany, I think this is Spain, etc etc. Then she handed me this one of me and said in a perfect dead pan  “I’m not sure  but I think this might be Holland.”

I knew there were some big shoes to fill. 

Ambassadors

Parents of children with special needs have many responsibilities. Caring for the child is the biggest and that can be exhausting both physically and emotionally. Educating themselves about their child’s specific needs and advocating for those are right near the top as well and that can be all encompassing.

But there is more.

Every kid, typical or otherwise, need parents show them how to interact with the world. Parents teach best by example, but sometimes they have to intervene to steer a child off a wrong track or even resort to the dreaded lecture to drive a point home. Special needs children need the same thing, but often because of their disability, they cannot understand or apply the information in the same way. Parents of special needs kids have to be more creative. Our kids also have to learn how to deal with the non-disabled world that does not understand or even particularly care about their differences. Like every parent, we have to pave the way for our children; but, because the road is rougher, the job is tougher.

Part of that is deciding how to interact with inappropriate remarks, questions, stares, etc. We have to figure out our own responses first before we can begin to teach our children. When the inevitable stupid remark or question arises, the easiest thing to do is get angry or dismissive. Easy is not always best. There are certainly times anger is warranted, but often it serves only to further isolate the special needs child as well as the parent. Often we have to swallow our first emotional response and act more diplomatically. We have to be ambassadors. We have to be the ones to bridge the two worlds.

It is very easy to become isolated in the world of special needs. We need to keep one foot in the rest of the world or we will go crazy. If you alienate your contacts outside the special needs arena, it is more difficult to protect your sanity. Sometimes, however, those contacts are the ones saying the stupid things. What to do, what to do.

When Maggie was little, I read a book called Facing the Crowd that dealt with this issue beautifully. (I do not remember the author and I believe it was published in Australia but it is long out of print now.) Jeri Hart, Maggie’s home counselor from the Blind Babies Foundation, lent it to me. (When I spoke with her last night, I learned they are still using that book for new parents.)

Facing the Crowd suggested that a parent stop and mentally categorize the person before responding. If this person were important to you or your child, e.g. a doctor or family member, you would have a different response than you would to a stranger on the street. A neighbor that you would see often might warrant a kinder, gentler response than a staring stranger at the drug store. Some you have to educate and inform, others you do not. Not everyone is going to be interested in your child’s challenges, and it is not our job to change their minds. It was an excellent tool to get me through those early years.

I’m not sure I still do that because after this amount of time we are just living our life. I am no longer interested in educating the world about Maggie nor do I resent strangers who don’t care. If people say stupid things I may kindly respond or I may snap at them. These days it is much more about my mood than the role that person plays in my life. (In other words, WATCH OUT!)

Playing the ambassador role worked for me, but it does not work for every parent. Some do not want or need to, but that is rare. Some simply miss the opportunity to be ambassadors. Some just cannot handle it. Some are too angry to do it effectively. Most however, do this seamlessly and bring two worlds together.

It just comes with the job.

Pay It Forward

The Family Advisory council (FAC) met last night. This is an advisory board of sorts for the UCSF Children’s Hospital. The head of the hospital attended the meeting to thank the council for its commitment to the Children’s Hospital. We do not really see the effects we have anywhere but she assured us that we have a lot of power within the institution. For example, if the FAC has approved something, folks are reluctant to mess with it. That was nice to hear, because it’s easy in a large bureaucracy to feel small and insignificant.

Several new members joined the board last night and we took time to make introductions and explain why we are members of the board. For the parents on the board, the reason is simple: we have a child that was or is served by the UCSF Children’s hospital and want to give something back.

Many of us have been part of this board for two or three years and know the stories of each other’s children. With all the new members, though, everyone explained their situation just a little more clearly. On the other hand, maybe I just decided to listen closer. The stories are as varied as the children themselves. There are patients who spent weeks in the hospital protecting their unborn babies from high-risk pregnancies, some with positive results, and some without. There are parents of children who needed just one outpatient procedure and those (like me), whose child has permanent and ongoing medical issues. There are parents whose children made amazing recoveries from the brink of death and those who lost children despite the best efforts of a great hospital.

As we went around the table telling our stories, I was struck by the individual drama of each story and each parent’s willingness to put that drama aside and work to make UCSF Children’s Hospital a better place for all families. It was humbling but it made me proud; I was feeling two competing emotions at the same time.

If the only change we effect is small, it is worthwhile. It is worthwhile to hear and understand that other families have stories more compelling than mine, and that they appreciate the importance of sharing their unique body of knowledge to assist others in the same position.

There is nothing good about having a sick child, or losing a child, but something good can come from it

Choose Wisely*

It seems there has been a lot of focus on the word “choice” in the past several years. It seems everyone uses that as an explanation or excuse for everything. “Well, you made that choice, now you have to live with the consequences.” (aka, you made your bed, now lie in it) Or, simply: “that’s your choice.”

In short we are saying to other: I respect your right to make a choice, even if I disagree with it.* But often it doesn’t sound like respect at all.

In my opinion, this is not an embracing philosophy, but often a way to distance yourself from another person. To suggest one deserves a situation because they chose it is often mean spirited and dismissive. It negates the effect of outside forces and fails to acknowledge that one’s circumstances may limit the amount of choices available. If circumstances leave you with three bad choices, choosing the least of three evils is the best thing you can do, even if it is still “evil”.

Don’t get me wrong. It is important to teach our children to make the right choices for their life and important for us to be responsible in our decision making. It is important to teach that actions have consequences; and we have to take care when we take action.

However, it is also important to teach that sometimes life throws you a curve. Sometimes all you can do is stand there and take your swings. Not everything is done by choice. Things happen. As the commercial says, “Life comes at you fast.” We have to have tools for that as well.

I certainly did not choose to have a disabled child, or to lead the life I’m leading – but I did choose to make the best of it. Making the best of it severely curtails choices in every other area of my life. I’m ok with that; often others are not. I guess that’s their choice. (was that dismissive? Maybe so.)

We have to recognize that people in different circumstances have different menus from which to choose. The circumstances don’t have to be as dramatic as mine. Financial, geographical, family, health, and many other concerns can have different effects on us. Those effects can be provide or limit opportunities and choices. It is important to remember that because when you do, you validate the person you are talking to and the life they lead. Not the life they chose, not the life you think they should have chosen, or that you would choose, but the life they lead.

Recently a friend told me how he admired my family and what we have done for Maggie. This generally makes me very uncomfortable. Maggie is my daughter and I care for her. It’s as simple as that. Her care is complicated, but being a mother is not. I thanked him and said, “well, that’s nice, but it’s not like we had a choice.” I’ve said that to many people and that usually stops things before they get mushy. But not this time. Not with this guy.

He looked me in the eye and said, “But you did have a choice and you made it a long time ago and I’ve seen many families who made the other choice.” It was understood that the “other choice” is to institutionalize your child or reject her outright. (He’s a doctor, so he has seen the other choice.) I had to think about that. Ours was never a conscious choice; it was instinct. We are parents and we have to care for our children. The concept that this is really a choice was foreign to me. It still is.

But my point is this: He took this concept of “Choice” and, rather than use it to distance himself from my situation, he put it in a positive light. He embraced the different circumstances of our lives and used them to tell me that he understood and appreciated me. I’m still not sure I agree that this was a choice, but I know this: the way he “chose” to say this was perhaps the greatest compliment I’ve received in my life.

* (I’m not talking about Pro-Choice or Pro-Life)

Teach your Children well

We went to Mass at St. Ignatius on Christmas Eve. St Ignatius church is an amazing place. My family frequently went to this church for special occasions, including my dad’s funeral mass. The place means a lot to my family and to about 10,000 other families like mine. The church is visible from many parts of the city because it sits on top of a hill right in the middle of town. Our house is just a few blocks below it and we can see it out the back windows upstairs. Though not politically correct, the church is lit up at night and it is spectacular. It is also enormous. I think the church holds something like 3500 people. On a regular Sunday with the regular churchgoers it seems almost empty; but on Christmas, the place is packed.

There is a Christmas Mass at 4PM on Christmas Eve. That is perfect for families who want to go but cannot get everyone to church on Christmas morning. It is perfect for us too because we start our Christmas with that Mass and come back here for Christmas Eve dinner. As I noted before, Maggie was well enough to join us this year, so everything felt right.

There were HUNDREDS of little kids there. They were all dressed up and running around. It is very cute. They stare at Maggie open mouthed, which is not that cute. She sits in her wheelchair in the aisle, so she is quite visible to all of them. The bravest kids walk right up to her chair and start investigating all the nooks and crannies. We are talking little kids, maybe 1.5 to 2.5 years old. It does not bother Maggie and therefore it (generally) does not bother me. (Ok, it does a little). I understand that Maggie is different and her wheelchair is a HUGE draw to the children. I guess I do not always understand their parents. Or many parents.

One little boy wandered by uninterested in Maggie. He was about three. He walked up the aisle, back down and up again. He was looking for his parents. I watched his face change, saw the lower lip go out and knew he was lost. I told Steve to watch Maggie and approached him. “Do you want me to help you find your mom?” He nodded and took my hand. We walked up and down a couple of aisles. I presumed I would see his mom or dad frantically looking for him. Nothing. I walked across the back of the church and asked the people standing if they knew to whom he belonged. Nope. They thought he was with me. We went half way to the front to the church and I picked him up figuring again, that I would be able to see someone searching for him and he would be more visible in my arms. Remember, there are over 3500 people in this church. Nope. I asked him his name, told him mine, and said, “Let’s go up another aisle.” He was scared to death and trying not to cry.

We walked around for at least 10 minutes. I went farther across the back of the church when suddenly a man appeared, grabbed the child and said to him angrily, THIS is why you don’t wander away from me.” Not a word to me. Not ‘Thank you’, not ‘Merry Christmas’, not ‘Keep your hands off my son’, Nothing. He just grabbed him and walked away scolding the frightened child. I just stood there and quietly said to no one, “You’re welcome”. A woman standing next to me saw the whole thing and just said, “Poor kid.” My thought exactly.

I missed a good portion of the mass dealing with that little guy. That is fine, but his dad was a creep. I am sure his father was frightened and I hope he had been looking for him the whole time, but … please.

You do not know what you have there, mister. He is a perfectly healthy little boy who needs you to tell him he is safe. He needs you to keep him safe. Do not blame him when you screw up. Pay attention. Be a responsible parent.

I made my way back to my family and sat down. I just shook my head and watched the kids investigate Maggie’s chair again. It did not bother me so much after that. They may have been slightly inappropriate and their parents seemed to encourage the inappropriateness, but at least those parents were watching their children.