Maggie and I went shopping on Saturday, as we are wont to do. I am currently boycotting Stonestown mall because of an incident a few weeks ago involving a broken elevator and a security guard who found our predicament amusing. I wrote about that here and sent them a fax describing the situation, but not even the courtesy of a reply. We will go back, eventually, but I need to be completely over it first.

Maggie kept saying on her talker "Mom I go to the mall" and I would say,"well no, we are going to go downtown. No mall Macy's for us, Mag, - we are talking 9 floors of fun!" She switched gears and tried to make a sentence that said we are going downtown, but she could not make it happen. She kept saying "Mom we are going down" and I would say "right, downtown. Do you want me to help you spell town?" She slammed her fist down which is her response for NO! She kept trying. I kept offering and she kept rejecting me. Finally I said, "you know down and town rhyme." That seemed to make it click for her.  She cleared her sentence and went back to work. My husband entered the room and she made this sentence:
y

"Dad I will go to down down Dad"

I cracked up and said Way to go Maggie. That's close enough. She was very proud. Steve was a bit perplexed for a minute, but then he got it. From here forward, we will likely refer to it as Downdown"

As we shop - or do anything -  Maggie and i keep up a running commentary. She says "Mom. can I say something please," and i say "Please do" as we peruse the goods at Macys'. Then it becomes, "Mom I want to listen to music." and I say, "there's Music playing in the store, can you hear it.?" (makes sign for) Yes. "Do you like it?" NO! Usually it's "MOM MOM MOM MOM" and I say "what what what what?" This type of banter is non stop. Others look at us quizzically, but generally smile and move on. Once in a while I get "That is amazing" and I smile and say, "Isn't it? She's smart as a whip"

Perhaps because that is the norm, I was more than taken aback by a woman who chided me for not paying attention to Maggie. I was paying for some purchases and Maggie was saying MOM MOM MOM MOM. A woman was suddenly next to me saying, "Hey, She needs you. She is trying to get your attention." I glanced at Maggie and back at this very angry woman and said calmly, "I'm on it, thanks.  She was not to be deterred. She said, SHE NEEDS SOMETHING. I looked at Maggie again who was happy as a lark but a bit wary of this strange encounter, and said evenly but a little icily, "she's fine, Thank you."  This woman just GLARED at me and then looked over at a cop who was a few feet away. This cop had opened the door for us and we exchanged pleasantries when I entered. I thought. Go ahead, Lady. Make my day. I just looked at her disapproving face and said "You really just need to mind your own business, you have no idea what's happening here." She huffed and started to walk away. 

I finished my purchase and looked at Maggie. THe lady had frightened her a little bit because she was so angry. When she heard me tell her to mind her own business, Maggie started laughing her head off. The cop, who didn't seem to notice the exchange said, "Wow, she sure is happy isn't she." 

I smiled sweetly and said, She certainly is. Maggie laughed again.

And the cop opened the door so we could leave.
 

The Importance of NOT Being Earnest

Several of you have forwarded me this post from the Huffington Post about the woman responding to a nasty note on her windshield chiding her for parking in the disabled spot. Turns out the woman was legally and more than justified parking there. She has two disabled children, one of whom has invisible disabilities.  Mom writes an eloquent and impassioned response to this anonymous note leaver.

Good for her.

I guess.

Frankly, I wouldn't have bothered. As my friend Elizabeth pointed out, it's too exhausting to be that earnest. If I ever had that level of earnestness and need to have people understand our life, I left it behind years ago. People don't understand and it's not my job to make them understand. I couldn't if I tried. And that's OK -- or not OK -- but that's just the way it is.

Don't get me wrong, I would have made fun of the person to no end. I would have tossed invectives like confetti, but I wouldn't have bothered explaining myself or my life to anyone. Especially not to someone who is so nervy and so cowardly at the same time. Nervy: S/he was willing to raise the issue. Cowardly: only willing to do so in an anonymous and chiding manner. This is not to say that my way is better; I doubt it is, I just know that's what I would do.

 I would not have taken even a moment to bother trying to figure out this person's life, which the mom sees as "Black and White." That assumption is just as offensive as the note, and I suspect its entirely wrong. Who knows what drove this person to leave this note. Maybe it is a disabled individual, maybe it is the parent, child or sibling of a disabled person. I doubt that person's life is black and white at all. At least they recognized the issue, even if they went about dealing with it in a ham handed fashion.

Still, Mom was right to be offended by the note. It was offensive to target her specifically, especially when the note leaver was so clearly mistaken. I raise the issue of the problems with handicapped parking all the time, but I do it generally. I don't target anyone specifically. Even in my general comments, I have been wrong plenty of times and you have educated me. There are both general and specific problems with this issue, but it's a lot safer and smarter to keep comment general and not target people specifically.

My general instructions for today are the same as many other days.

•  Don't take handicapped spots illegally. 
• Don't use handicapped placards illegally. 
• Be careful about judging those who have the placards. 
• Many people have invisible disabilities. 
• Many are stealing their grandmother's placard. 
• But you just don't know which is which. 
• If you are seriously moved enough to questions someone (as I was last week), tell a cop, if you can find one. It's their job to check, though it seems like a very low priority. 
• Finally, don't explain yourself to anyone other than a cop. It's just none of their business.

When you have the letter and spirit of the law in your favor, you don't have to explain yourself. Many years ago I was verbally accosted by a woman who decided I was using the placard illegally. She couldn't see Maggie because the windows in the van are tinted. I ignored her.  I wasn't dong anything wrong and I knew she was going to feel stupid when she shut up long enough to take in the reality of the situation. She jawed at me for several minutes not noticing I was loading Maggie into a small wheelchair. (Before the ramp days). She kept it up, infuriated that I wouldn't respond to her. Finally she stopped for air and realized what was going on.  And then she started stammering incoherently.

 I'm not going to lie. That was a delicious moment for me.

Praise the Lord and pass the IPAD

It is Sunday evening at the end of what was technically NOT a long weekend, but certainly felt like one.  I am tired and content.

My plan was to recap the weekend in this post, but I have to limit it because there's too much to report from the 4th of July.

First and foremost, Eddie was home with Grace!! They arrived around noon and Maggie was very happy to see them. Though Steve and I have both seen Eddie a few times in the past months, he has not been home, so Maggie has not seen him since before Christmas.  She was very happy and excited to have him here. She hasn't seen Tim since he left for Chicago in January, so there has been a serious big brother drought around here. With Eddie here Maggie World righted itself a little bit.

I tried to take a picture of just Eddie and Grace but Maggie was in the background and this is now my new favorite picture of her. She's still just delighted even while she's covering her face. It's as though she cannot believe her good fortune to get to see one of her boys, and Grace is just a bonus. 

We did have the traditional 4th of July barbecue and my mom, my sister Kate and Eddie's friend Chris joined us. Steak and flag cake all around!

But that was the end of the evening. There was one very strange encounter in the morning. 

Maggie and I made a quick trip downtown to FINALLY buy her IPAD. She was excited and she impressed the hell out of the geniuses in the store with her opinions and preferences. She picked the color and responded appropriately to several complicated "yes/ no" questions.  I was impressed that they actually seemed to "get" her differences and needs and that they respected her intelligence. (Genius recognizes genius) Of course the accessibility expert was asking me a ton of questions for apps etc, and I was passing along the info I learned from Diane, Maggie's former therapist and assistive technology guru at CCS.  

That was all good, the strangeness came when we left the store.

There was a man washing windows at a building a door or two up from the Apple Store. That was curious in and of itself, given that is was a major holiday. He turned toward us made a strange move. When you live in a big City, you learn there are times to keep moving. Strange people are everywhere and not all of them are harmless.  My maternal instincts (spidey sense) started tingling. I was momentarily worried about our safety. Was he going to strike us with his window washing equipment? Was he going to block our path? What was going on here? 

Little did I know what he had in store. 

He looked at Maggie and SHOUTED at the top of his lungs, 

"IN DA NAME A JAESU CHRIZE, SHE WILL WALK!!!!!!!!!!!!*"

Whoa! Whoa! Whoa! That's a lot to take in on a downtown street when one is flush with the accomplishment of purchasing an IPAD and conversing with geniuses. 

I did what any other mother would do and picked up the pace. I nodded my thanks to the man who was absolutely glowing with pride. He was holding his window washing pole as though he was in an honor guard.  As it turns out, he meant no harm, but it was a strange strange moment. There was no way I was sticking around to discuss this with him. We were around the corner in record time. 

We arrived home shortly before Eddie arrived. After the initial hellos, I shared my story of the evangelical window washer. I told Steve, Eddie and Grace what happened doing my best imitation of the guy. Steve raised one eyebrow, Grace laughed and Eddie said, "Hmm, too bad you didn't run into him 18 years ago. Things would have been a lot easier." 

Maggie threw back her head and laughed at that because Eddie is hilarious and Eddie is home and who cares what that weird dude with the long stick has to say.  

______________

*I'm typing this the way he sounded. I could not place his accent but English was not his first language. 

A Distressing Morning

Saturday morning, we had to sign papers for the refinancing of the house. The notary was at our house at 8:30AM so we could sign the dozens of documents to make the horrible loan process end. We have been working on this for over three months. Even though we have excellent credit and a ton of equity in our house, it seemed as though this loan was not going to close. I found the process to be quite onerous – much more so than in past times and we had to jump through a million hoops to get it done. Other missteps by the lender almost caused me to pull the plug on the whole deal just a few days before closing, but the thought of starting again, or going through all that for nothing forced me forward.

Of course, when the notary arrived with the papers there were questions.  The documents had mistakes and were unclear. The notary kept pushing us to sign anyway saying we could rescind within three days, but that is not how we roll (and that is bizarre advice for a notary to give). She was clearly irritated with us, but neither Steve nor I cared. The financing for the house is a little too important to worry about the feelings of the person whose only role in the whole thing was to witness our signatures.  We were on the phone with the lender clearing up the confusion. Their work was sloppy and trying to unravel it on the phone was difficult.  They were asking me to compare these documents to ones forwarded to me in an email several months ago to explain the confusion. This did not please me but I went over to my computer to do the search.

That’s when Maggie had an episode of respiratory distress. 

I hate those things; they are scary as hell. They are scary for Maggie and for anyone who happens to witness it.   After the second one in September, we took her to the ER. They wanted to admit Maggie then, but they did not know what they were looking for. I cajoled and promised to follow up with the pulmonologist and we avoided admission and allowed to go home. She had an exam under anesthesia a few days later and the doctor could give me no reason for these episodes. But they seemed to stop, so I did not worry.

Now they are back. There were a couple of episodes over Christmas break, two last Thursday and one on Saturday.   That is five in about three weeks. Not good. I do not see any pattern to them and I cannot figure out what triggers them. Something happens that starts a chain of events and in about 10 seconds, Maggie is not breathing and turning blue. She seems to be holding her breath and because she is panicked, she cannot “remember” how to stop herself from doing so. Her arms are extended and fisted and it is very frightening. They can last several moments and even when she starts breathing again, she is completely freaked out and needs a large amount of oxygen to calm down and get back to normal. Needless to say, everything stops when that happens. 

On Saturday, it hit as I was on the phone with the lender and the notary’s irritation was growing. I saw it start and said “Steve, she needs oxygen.” Steve was already in action before I even said anything. I told the lender we had a medical emergency and she needed to figure things out and call me back. I look at the notary who had gone from irritation to shock. I actually felt a little sorry for her. If she could have flattened herself against the wall, I am sure she would have. I tried to sound calm and said, "don’t worry, this happens sometimes, we know what to do" -- all while I hoping we really did.

Maggie recovered. The lender called back acknowledging mistakes resulting in an error in our favor (of $32) and said keep it. The notary whipped through the paperwork and could not get out of here fast enough.  

 After she left and we all relaxed, Steve and I could not help but laugh at how completely ridiculous our life can be. 

At least we made $32.

Presidents and Waiters.

America is an amazing place. In the last 12 hours I've been equally inspired by the President of the United States and a waiter in Houston.  Talk about equal opportunity. The president promoted lofty ideals without specific ways to achieve them and the waiter demonstrated how to make it happen. 

Let's start with the President. We watched the inauguration this morning. The pomp and circumstance was beautiful and very moving. Maggie politely sat through the speech because her girls Kelly Clarkson and Beyonce were going to sing. She did seem to be listening to President Obama, though. Good thing, too, because it seemed to me that he was talking about Maggie and her peers. My favorite line was this:

We do not believe that in this country, freedom is reserved for the lucky, or happiness for the few. 

Maggie definitely has the happiness part pegged.  In fact, we should all strive to be as happy as she is. But her freedom is very limited by access issues, lack of tolerance, and so many other things.  There are places we cannot go because Maggie is not welcome or will not fit or makes people uncomfortable or whatever. Some of that is my doing. I simply cannot do all the things necessary to care for her and face the crowd at the same time. I stopped wishing for miracles long ago. Maggie is just Maggie and that's ok. But I would love it if we could live in a world in which (if she cannot be healthy and able bodied) Maggie can be free to go wherever she wants without difficulty and without judgement. 

The president did not mention how exactly we can accomplish that as a society.  But another excerpt from his speech gives a clue. ...we must be a source of hope to the poor, the sick, the marginalized, the victims of prejudice - not out of mere charity, but because peace in our time requires the constant advance of those principles that our common creed describes:  tolerance and opportunity; human dignity and justice. 

Apparently the waiter in Houston is already making it happen because his action preceded the President's speech by a day or so. 

Michael Garcia, a waiter in Houston,  refused to serve some people in his restaurant who moved tables to avoid sitting near a child with down syndrome and then followed with derogatory comments about the child. There was no doubt as to why they moved because they said, among other things: "special needs children need to be special someplace else." Even though they were regular customers, Mr. Garcia refused to serve them.  He put his job on the line but he did the right thing,  (see the whole story here or a million other sites http://www.myfoxboston.com/story/20637480/2013/01/21/waiter-refuses-to-serve-customer-who-insulted-down-syndrome-boy)

Michael Garcia, who did not lose his job,  is making it happen. He took a stand for tolerance and opportunity, justice and dignity. We all need to follow suit. 

Our country needs us.

_________________________

Here are the excerpts from President Obama's speech that seemed to be aimed at me and Maggie. 

We, the people, still believe that every citizen deserves a basic measure of security and dignity.  We must make the hard choices to reduce the cost of health care and the size of our deficit.  But we reject the belief that America must choose between caring for the generation that built this country and investing in the generation that will build its future.  For we remember the lessons of our past, when twilight years were spent in poverty, and parents of a child with a disability had nowhere to turn.  We do not believe that in this country, freedom is reserved for the lucky, or happiness for the few. 

…..

 And we must be a source of hope to the poor, the sick, the marginalized, the victims of prejudice - not out of mere charity, but because peace in our time requires the constant advance of those principles that our common creed describes:  tolerance and opportunity; human dignity and justice. 

Get this.

People have all sorts of reactions to Maggie and to our life with Maggie.  Most people cannot grasp our life at all. That's fine. It's our life, not theirs. We don't expect anyone to completely understand our situation. Everybody has something in their life that others don't understand. In our case, though, our differences are very obvious and visible and involve a larger than life personality like Maggie, so we have come to expect
various reactions.

Some "get it" and and meet us where we are. We treasure those people, but they are very few in number.

Some are strangers with a kind word to say or strangers with a bizarre comment who, for some reason, find no problem sharing their insights with me. 99% of the time those insights have absolutely no bearing on our life. Those comments are generally harmless and worth it for either the humor we find or, in that 1% of the cases, the connections we do make.

There are those who THINK they "get it", but really don't. Perhaps their cousin's brother in law's nephew has a disability completely different than Maggie's so they think they understand. They offer advice and comments that don't make any sense. These people are mildly irritating, but also harmless and generally well meaning.

A more difficult situation are those who SHOULD "get it" by this time, but still don't. It is tiresome to explain over and over and over again that we have limitations, we are not as free as others in our age group. No, we cannot take Maggie to this place or that, no we cannot come away for the weekend, no she does not want to "just try" some food. They too mean well, but cannot seem to grasp reality. Still, these are generally people we love or need and we learn to overlook the naivete.

The toughest group are those who don't "get it" for a different reason. They may fully understand the limitations and difficulties, but they cannot understand WHY we do it. These are generally people on the fringes of our life. For the most part they don't say anything, but they project a sort of disapproval. These are the people who think Maggie should be in some sort of institution so that we can live our lives. It may be at some point we cannot care for Maggie here, but while we can, we will. And this particular group thinks by doing so we are ruining our lives.

You would think this people are the most distasteful of all to us, and in a way I suppose they are. But instead of anger or resentment, I find myself feeling a little sorry for them.  They see only the burden and none of the joy. They think my life is somehow less because Maggie is part of it when, in fact, it is so much richer because of her. I cannot and would never even try to explain that to them because they are unable to comprehend it. That makes me feel sorry for them.

Don't get me wrong. I would love to be able to travel freely and be a bit more carefree, but I can't. And, what some people will never understand: that is okay. It's a trade off and I got Maggie in the deal, so I don't really feel short changed at all.

Life is more than the places you go. It's the people you meet, the experiences you have, and it's the love you give and receive. And we have a very full life indeed.

Get it?

15 items or less

Grocery shopping with Maggie is always entertaining. I push the wheelchair and pull the shopping cart behind me. We are quite the little train and people just get out of our way. Generally they are suppressing a smile because Maggie is cracking up. Here's a shot of our "Little Engine that Could." I stand between Maggie and the grocery basket.  Cornering is not pretty.

It is not the most efficient way to get the grocery shopping done; hence I only bring Maggie occasionally. This week, though we went together twice and both times had very strange experiences in the parking lot.

As we were walking in the other day I pushed Maggie toward the wheelchair cutout. This cutout is in the middle of a slight ramp that extends in either direction. The left takes you to the store, the right gets you to the bike rack, water machine etc. I was just entering the ramp. A shopper was coming down with his groceries and backed up to let us by. Just then an employee of the store started down the ramp from the right. He was pushing extra shopping carts and he was BOUND AND DETERMINED to make sure he beat me to the ramp, even though  we were already there and he was about 10 feet away. He actually started speeding up so he could to cut us off. It wasn't even close - he was like a crazed driver on the freeway. I just said , "Hey, You pretty much have to let us go first. One, we are the customers and two it's really bad karma." He slowed down to avoid rear ending us. The other customer caught my eye started laughing and said "Is HE kidding?' I smiled, shrugged and kept going. Bizarre.

Stranger still was the next visit. I was loading Maggie back into the van. The wheelchair loading area is also a pass through for customers returning to their cars. There are other ways to get to the cars, but this is the first one and most people use it. That makes perfect sense to me. Why not use the space for more than one thing. I'll bet Maggie is one of the very few wheelchair users who frequent this particular store. It will only very occasionally be used for both and even then the non wheelchair users have another path back to the parking lot.

Win win, right?  Of course not.

As I loaded Maggie in I heard a woman with a strong Russian accent say

"You are blocking" (which sounded more like "blooking")
I just (fake) smiled sweetly and said what was patently obvious to everyone, "Yes I am, but I'm loading a wheelchair."  
She said, "This space is for people to get back to cars."
I smiled again, pushed Maggie up the ramp and said sarcastically, "Right it's for both loading wheelchairs and for getting back to cars. I guess when they designed it they figured people might be considerate of the occasional wheelchair." 

My sarcasm was completely lost on her, but the man behind her guffawed at my crack. By that time Maggie was in and I pushed the button for the ramp to close, I had to stand there to make sure Maggie didn't get her hand stuck. I "blooked" her for no more than 45 seconds.

The two incidents, which happened about 48 hours apart, were so ridiculous in their own ways that I could not even mock outrage. They just left me shaking my head. I was grateful for the other shoppers in each incident who let me know I wasn't completely crazy.

The "Do Not Say" List

People often tell me they are afraid to say anything to people with disabilities or parents with disabled children because they either don't know what to say or are deathly afraid of saying the wrong thing. I always say, it's  pretty hard to go wrong with "Hello."

Yes, certainly I have had strangers say some weird things to us, and I've written about them here many times. (see Strangers tab).

I do have to something to add to to the "DO NOT SAY" list. And just to be clear, this is not limited to conversations with moms of disabled children. It's equally applicable to all women.

If you see a woman struggling with a large wheelchair in the pediatric specialties clinic it is probably wiser NOT to start a conversation with: Is that your granddaughter?

It's just a non starter, conversation wise.

In defense of this otherwise very kind man,(or perhaps in my own defense)  he was younger than me and he WAS there with his grandson.

But still.

Much better to err on the side of the compliment. Asking "is that your daughter" to a grandma will only win you points. However asking "is that your granddaughter" to the mom will get you nowhere fast. You will have played and lost Final Jeopardy.

When I told Steve the story, I noted that pickup lines have really changed over the years.  

Be careful what you wish for....

Let's just get it out there. There is no pleasing me.

You have all read my various posts about Maggie being ignored or invisible to society. You've probably gagged over my gushing love of San Francisco's quirkiness. Both of those were turned a bit on their head on Saturday.

Part of San Francisco's quirkiness is the homeless population which contains far too many people with mental illness who wander the streets lost in their craziness. This is a population that sees Maggie very well and always stops to engage in conversation with her. It's fine, though a bit uncomfortable at times Saturday was definitely uncomfortable.

We decided to go to the main library to check out the selection of books for the "Visually Impaired and Print Disabled." Maggie's vision teacher arranged for her to get this book reader specifically designed for the visually impaired. It could be a great thing for Maggie but so far she has shown very little interest. It didn't help that the two books they sent were about George Washington Carver and Growing your own vegetables. I thought if we found some stories that interested Maggie she might really take to this medium and could get interested in all sorts of books.

The main library is in Civic Center. City Hall, the Civic Auditorium, the State Court building and the Asian Art Museum, all fantastic buildings surround Civic Center Plaza. It looks very stately. It is also a haven for the homeless, who have nowhere else to go. Generally the area is teeming with people because there is always something going on. Saturday was strangely quiet and the more colorful individuals, who are generally part of the background ambiance, were front and center.

First a woman in the library asked a ton of  too personal questions and sort of followed us around. She was harmless, but a bit intrusive and inappropriate. Later, a man in the audio books department told Maggie and I to watch a certain move so we could grow spiritually, emotionally, physically and mathematically(?) and every other way. OK. A close talker with strong opinions but still harmless. We were polite, but kept moving.

We decided to walk over to City Hall. As we approached there was a group of well dressed people with large bouquets of flowers waiting on the steps. They were kind of blocking the wheelchair ramp but before we asked them to move, Steve popped up the steps to see if the building was opened. It was not. I stopped pushing Maggie while Steve went to check. Big mistake.

In the moment he ran up the five steps, a woman standing with the group came bounding toward Maggie and I. I hadn't noticed her before, assuming she was part of that group. But she was not, and I dare say that group was probably relieved that we happened along to draw her attention away from them.

She was shoeless, though, curiously, she had on what appeared to be brand new socks that matched her pants perfectly. Both were bright orange. She was missing a few teeth and her bare arms, visible because she was wearing only a .tank top, were badly scarred as though she had been terribly burned at some point. She started talking to Maggie as though I wasn't there. She was squatted next to the chair holding onto Maggie's tray with her face very close to Maggie's. "Hi baby, how are you. you are beautiful. I like you." I was very uncomfortable and then she started stroking Maggie's arm. Steve bounded right back down the steps and we looked at each other sort of stricken. We don't want to be unkind, but touching is NOT ok.

The woman wasn't doing any harm but she was way past the boundary and she was kind of freaking us out, Maggie included.  I just started pushing the chair making goodbye sounds. She didn't want us to leave, telling us to slow down and where are you going.  Why are you walking away? What's your hurry?"

We just strolled along as though nothing untoward had happened. It was just a couple of minutes. I never moved from the back of the chair because I wanted to get out of there. I could not see Maggie face. When Steve came back down he was as horrified as I was that this stranger, of questionable hygiene, was touching Maggie. He told me later that Maggie was giving her the "stink eye."

 I felt sick to my stomach. It was disconcerting on so many levels. Steve and I were both bothered by this tremendously. It's so wrong that this woman has to live on the streets and it's not her fault.. She was clearly mentally ill and obviously had gone through a lot of things in her life. But it's still not ok and I didn't stop her and that bothers me tremendously.   She was not violent, but she could have been. She did not hurt Maggie, but she could have. I just stood there trying to be polite and wanting to get away as fast as I could.

After this I will not complain (for a while) about people who ignore Maggie. In fact, the next twenty people who ignore Maggie or treat her like she's invisible might just get a big kiss from me.

Because that's not inappropriate at all.

Post Christmas Post

Maggie's Christmas socks from Eddie and  Grace. 

Christmas has come and gone. It was lovely. Exhausting, but lovely. Maggie stayed healthy (but she's getting sick now), my boys were here. All was right with the world. Now I am fighting the urge to throw the Christmas tree out the front window so I can restore what passes for order around here.

Eddie and Grace arrived from Southern California late Friday night and stayed until Monday. My father in law arrived Thursday and was here for the whole weekend. Tim stayed here on Christmas Eve night and had to sleep on the floor because there was no room at the Inn. We tried to draw the parallels, but a pad and sleeping bag on the floor isn't quite a manger.

Here are Maggie and Tim just before we left for Church on Christmas Eve. 

We stayed home for both Christmas Eve and Christmas Day. This year, for the first time I didn't even take Maggie to church with us on Christmas Eve afternoon. It's a difficult time of year for her health wise and the crowds of coughing people at church seemed like an easily avoidable risk. Besides, the stares of people in church creep all of us out. They are either fascinated or look at us doe eyed like we have given them perspective at Christmastime. Thanks, but that's not a role I care to play. Of course once there I felt tremendously guilty and sad that she wasn't with us. Can't win.

We have had a Christmas Eve dinner of cracked crab and ravioli for as many years as I can remember. This year was no exception. My mom and Steve's dad were here along with my brother and his family and all of us. My sister Joan and her family came by before dinner to visit so there were 16 people in and out of here. Christmas Day is was just the five of us and my father in law. Poor Tim had to work at noon on Christmas Day because God forbid people have to do without their Starbucks Latte for a day. That was a bummer for him, but he was here for the gift giving frenzy and came back and ate dinner here. Best of a bad situation.

Of course there was one dramatic moment after everyone left on Christmas Eve night. Steve was upstairs helping his dad get settled, the boys and Grace were in the living room talking and Maggie and I were in her room. I put her up on the bed and was changing her diaper. Maggie's room is straight back from the living room - a distance of maybe 20-25 feet through the dining room. They can see me, which turned out to be a very good thing. Maggie's muscle tone is especially tight lately (probably because she was getting sick) and changing her when she's like that is very challenging. She was in a very awkward position and suddenly did this Olympic diver twist and flew off the (very high) bed. I screeched as it happened and was able to "catch" her in mid air to break her fall, but there was NO WAY I could have held on.

 I didn't have to. The boys appeared out of nowhere before she hit the ground and saved the day. They must have seen it unfolding because they were there in a flash. I didn't know either of them could move that fast. It was like they had winged feet. They said it felt like one step instead of five or six. Maggie thought it was hilarious. She already thinks of them as heroes. Right then, so did I. We were damsels in distress and they saved the day.  

If that was my Christmas magic moment, I will take it happily.

Mystery Passenger

Our van came equipped with privacy glass. Everything behind the drivers area is darkened glass. We are like international men of mystery. If anyone is interested, the back of the van is generally filled with dog hair and medical supplies.

The privacy glass means that people cannot see Maggie, or any passenger in the back, when we are driving or even when we’re parked.  I had one lady yell at me for parking in a handicapped zone. I didn’t respond to her at all and she looked  pretty stupid when the door opened and Maggie was sitting there in her wheelchair.  (To be honest, I rather enjoyed watching her squirm.)

 If we are driving, people in other cars can see that I’m talking but they cannot tell if there’s anyone else in the car or not unless they have their face pressed against the glass  (which would be creepy). I know I look like a nut case talking to myself, I can see drivers in other cars eyeing me suspiciously, but I really don’t care.   

 The other day Maggie and I were riding down 19^th Avenue,  is a six lane “highway” right through the city. There are lights at every corner, but they are timed and if you go 30 mph you can generally make it ten or twelve blocks without stopping. Because everyone is doing that, you have pretty much the same people next to you for several miles.  You can set the tone for the ride at the first opportunity. There may be a smile or nod and there may be nothing.   

Maggie was in the back slamming her hand  down (her sign for no) because I didn’t have her music playing. I told her to keep her shirt on while I remedied that situation. She started laughing as Beyonce came on. I was dancing along and putting my hands up, as Beyonce ordered. I was aware of the guy next to me looking at me dancing and laughing as we sat at a red light. He was trying to make me look at him but I ignored him. I knew I looked ridiculous, I didn't need him to remind me. 

All of a sudden Maggie started having trouble.  She was laughing so hard she started to choke and her scarf was covering her trach tube making it even harder for her to breathe. I slammed the car into park and reached back to help her.  It took only a moment and I was back ready to go before the light turned green.  But the laughter and dancing had stopped for the moment.

I glanced over at the guy next to me who was staring at me completely shocked. I smiled to myself  imagining what he had just witnessed. That poor guy had absolutely no idea what had just happened. He was watching me dance around and laugh like a goofball, then my affect changed, I disappeared behind the privacy glass for a minute and then reappeared with a concerned look on my face, put the car in drive and was ready to go.  

I just gave him one of those nods you give another driver when you make eye contact, as if to say, Move along now, nothing to see here. 

For some reason he did not stay next to me for long. Shrug.

Cultural Exchange

We spent yesterday morning up at UCSF getting some tests done. Maggie has been having trouble keeping her oxygen levels up and i was worried about pneumonia. It looks like a slight lung collapse. She is on antibiotics and should be ok in a day or so. Hope so. I'm supposed to go to out of town tomorrow for 24 hours.  We shall see. 

We were waiting to get her meds at Walgreens. I just sat in the chair because they kept telling me it would be "just a few more minutes" (we left after 45 min). Maggie was worn out and looked quite peaked. She had the oxygen hooked up but the was still smiling and talking with her dynavox. 

A  woman went by and gave me the puppy dog eyes. and I groaned silently to myself, thinking "here we go." She walked by several times looking at Maggie, clucking and looking sad. I ignored her. She got in line to pick up meds and stared, waiting to catch my eye. Finally I looked up and smiled at her. She was well dressed and I would guess from her accent that she was  South American. She asked with a thick accent how old Maggie was. I told her, " she just turned 17". She clucked."17, ohh my"  I waited. She then asked "Is she your daughter." I smiled and said yes she is. She sighed heavily. I  knew the pity was there and she just had to express it. I waited, but not too long. She then said in the saddest possible voice, while slowly shaking her head,  "It just breaks my heart."  

There it was.

I tried to say nothing at all because it didn't really warrant a response. She was talking about herself, not Maggie. She's entitled to feel and say whatever she wants.I don't have to agree with her.But the clucking continued and  she clearly wanted me to tell her how hard Maggie's life is.  I just met her gaze, smiled thinly and said politely but with very little warmth, "You know, she's just living her life." I busied myself looking at my phone because I did not want to continue the conversation.

The woman was perfectly nice and she undoubtedly meant well, but ... please. I cannot handle pdp. (public displays of Pity). Have questions? I'm happy to answer them Want a place to dump your pity party? No thanks. There may be a cultural element at play in this particular exchange, but I cannot be responsible for that.

I suppose I COULD have said, HEY, DON'T CRY FOR ME ARGENTINA" but that might not have been appropriate. Of course I laughed at the thought of that all the way home.  

Cross your fingers that Maggie decides to get better today. 
. 

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.”   

A charming and delightful child

The other day Maggie joined me outside as I was trimming some overgrown shrubs in front of the house. We chatted for a few minutes with a woman who was parked in front of our house. She was there for several minutes because she decided to sneak a cigarette in her car. (I don't ask) She was listening to Maggie and I "converse," me on the ground cutting back overgrown shrubs and Maggie in her chair behind me using the dynavox. Maggie kept saying "Mom" and I would say "what?" this went on for about 5 minutes before I realized the cord was loose on the machine and she couldn't advance it. I fixed that and she said "Mom is working." The woman was fascinated by the machine and asked how it worked. I explained and said Maggie why don't you say something to this nice lady. 

Silence. ...  Don't you love teenagers? 

I said, "come on Maggie she wants to know how it works." Maggie just looked at me and signed "no." I didn't bother telling the lady what she was saying. I just looked at Maggie and raised my eyebrows in the universal "mom" way. I swear Maggie rolled her eyes a little bit.  Maggie started hitting buttons and smirking. I wondered what was coming. She hit the button and I hear:

"Hello my name is Maggie, You are charming and delightful." 

The woman was wowed. I just smiled, and Maggie was grinning ear to ear. I didn't bother to tell the woman that Maggie was being a smart ass.

Maggie has several different ways of using her dynavox. Sometimes she will make a specific sentence, choosing each work individually, and sometime she will use some of the complete sayings that are on the talker for her. These sayings did not come with the machine, rather each was programmed in by various teachers or by me to reflect something she was interested in at the time. "You are charming and delightful" is one of those pre-programmed sayings. lt was the brain child of teacher Joe a couple of years ago. He wanted Maggie to say something nice about folks and she used it all the time. Maggie got away from using the pre-programmed sayings  as her ability to make her own sentences improved, but she does occasionally use one and she always uses them appropriately. Now apparently she also can use them sarcastically.

I guess that's progress.

Welcome to the Dark Side

I took the Brisco to the dog park last week. It was very quiet there which was exactly what I needed after a couple of wild days. We played for a bit until he ditched me for some dogs and I wandered over to the benches. There was just one woman sitting there. I at one bench over and enjoyed the few minutes of peace.

We struck up a conversation after her dog came over to me. It was pleasant. I noticed she was using oxygen and had a very small tank  - like the size of a thermos around her neck. I asked how long that lasted and she said 8 hours! Wow! I told her Maggie's tank was 5x the size and only lasted 6.  Though she wasn't there, the conversation turned to Maggie and her medical needs.

It was very cordial and not prying or anything. She was generally interested. I doled out only what information I wanted to and didn't feel put upon to over share. She asked if I had any other children. I said, yes, I have two college age sons.

This is where the conversation took a strange turn. This sweet lady with the oxygen tank said, "It must have been very difficult for them because you probably neglected them."

(insert cartoon head shaking here) I'm sorry, what did you say?

Well you obviously were busy with your daughter and could not give your sons the attention they needed.

I paused for a moment, shocked. How did we get here? It was as though a dark cloud covered the sun.

I paused again. I thought of my boys who had a great childhood, filled with tons of family and friends. I thought of vacations together and their friends who joined us. I thought of walks in the park and dozens of visits to "the rolling place" where they could roll down the grass non-stop. I thought of Eddie on his bike as a little kid and Tim practicing baseball every day. I thought of my  boys who went to private schools, and who brought friends over here constantly. Boys who are kind and polite. Boys who are well liked and respected by their peers and mine. Boys who are both working and having fun.  I thought of the two of them now living together 200 miles from home as they attend college.

 I thought of their very well developed senses of humor and how they might answer her. I felt a smile coming on, but I kept it just to myself.

I paused once more and gave her a long look. Then I simply said, "They did all right."

Stranger and Stranger

Sometimes I have to experience things differently to realize how hardened I've become to things. Case in point, shopping with Tim and Maggie at Costco last week. Tim was shocked at how often people stare at Maggie. I know they do, but I generally ignore it. With Tim there I was acutely aware of the staring from every corner.

The staring is nothing new. It has always been part of Maggie's life, and all of ours by extension. It may be a little worse now than before because the trach tube is jarring to people and Maggie's constant movements of her hands and face is off putting. Tim is just out of practice, He's been away at school for two year. He has certainly been home a fair amount in that time, but it is always a couple of days here and there and isn't too often that we are out in public with Maggie while he's home.  He received a crash course while we were at Costco.

One woman was looking at Maggie like she had two heads and we kept running into her, which was awkward. The best, though was a family that we only encountered once. There were four of them and they were turning into an aisle just as we were going to exit that aisle. All four stared at Maggie open mouthed an blocked our way. It was just a moment where the three of us were facing the four of them, mouths agape. I said sweetly, "excuse us, please" and we went by. As we rounded the corner Tim said (just to me and Maggie), "Hey folks, strap up your chins and get the HELL out of our way. We all cracked up at that.

Lest you think everyone is as boorish as these people were, there was another woman who made our visit.

We paid for the ridiculous amount of items and I stopped at the desk to inquire about getting Tim a card of his own. Tim was next to me holding onto the cart and I was holding onto Maggie's chair, but my back was to her. Maggie was facing away from the counter. By this time Maggie had had ENOUGH of Costco and wanted to get out of there. She kept saying on her talker, "Mom, I want All the Single Ladies Put your hands up" which means, of course, that she wanted to listen to Beyonce.  I absentmindedly answered Maggie while I completed a form for Tim. Maggie repeated her sentence again an again. Out of the corner of my eye I saw a woman approaching Maggie. I turned around and there was a woman just steps away from Maggie waving her hands in the air. She had on a muni bus drivers uniform, which made it even funnier. She said, "I'm a single lady, girl, My hands are UP."    I told her that meant Maggie wanted to listen to her music and she said, "well, get goin, mom"

Maggie was delighted and Tim noted how one cool person can make up for so many idiots.

Father Doughnut

Early Saturday morning I had an errand to run. No one else was awake yet, so Maggie came along for the ride. We had to drop something off before our friend took off for the day. By 7:30 we were on our way home. I decided to stop at the grocery store.

Maggie loves it, but she does not get to go to the grocery store very often. I’ve mentioned before how much of a spectacle we are. I have to push the wheelchair and pull the grocery cart. We are a train chugging around the aisles. Early Saturday is the perfect time because the store isn’t crowded. Driving that train through packed aisles is impossible. Other shoppers are quite taken aback at the sight of us. Many are overly helpful. I get an almost pleading, “Can I DO something for you” to which I respond (overly cheerfully),” Nope, just grabbing a gallon of milk.” The fewer people in the store, the fewer conversations and the easier to get around.

I was just about finished when I decided to bring home some doughnuts for breakfast. As I neared the bakery department a priest entered the store. I presumed he was a Catholic priest because he had on the black suit and the collar. He was probably in his 60’s, tall and thin and carried himself in a very regal manner. He took in the scene with our little train and gestured – something between a nod and a bow. Anyone who’s spent any time around a priest will know the move. I smiled at continued my trek toward the bakery.

The doughnuts are in a free standing case for self service. As I moved toward that the priest was standing in front of me, looking me in the eye and pointing at me. I wondered if I knew him. I was raised in this neighborhood and know people connected with all the parishes around there. Nope, his face was not familiar. Then he spoke. In a thick Russian accent he said “Got ez tadusteeng gyu” Say what now? It was almost accusatory. He said it again, and I realized he was saying “God is trusting you.”

Oh, ok, thanks.

Don't get me wrong; it's nice, but it's freaky.


He approached and took Maggie’s face in her hands and said some prayer. The look in her face was priceless. Her eyebrows were knit together and she was frowning at him. I tried not to laugh. He looked up again and said “God is trusting you” again. I smiled thinly and he walked away.

I looked down at Maggie and said, “Well, if God is trusting me, I better not steal these donuts.”

Today's gratitude: I'm thankful for the free coffee my son gets every week working at Starbucks.I'm particularly thankful for the Verona blend.

Queries from Stranger Part II

This is part two in a (probably) three part series. I am going to start this one the same way. When I wrote about the need for many parents of special needs kids to act as ambassadors to the non-disabled world, I commented on how difficult that can be when people say stupid things. People wanted to know some of the stupid things said and my reactions. I can relay a few of those, but it is difficult to recreate the emotion of the moment, or the context of some of the comments.

Initially I wrote a long piece listing various examples, but trying to capture 15 years of idiocy in one entry is too whiny, which is not how I feel. Besides, focusing on the stupid or offensive things subordinates the kind things people do or say. The kind things astound me. Nonetheless, inquiring minds want to know, and I want to tell. Therefore, I will just put the idiocy and into general categories and serve them up slowly along with the responses.

The first category was “Who’s at fault?” You can read that here Maggie World: Queries from Stranger Part I http://sfmaggie.blogspot.com/2009/07/queries-from-stranger-part-i.html#links

The second category is one I will label “Why was she born” A question I got all the time when Maggie was little (but not so much anymore) was, “Did you know she would be like this before she was born?” Or “Didn’t you have an amnio?”It is difficult to convey the tone of voice here. Think of it as high pitched and incredulous

There were times and contexts that neither question was offensive. I frequently speak in front of groups and open myself up to questions and I would expect questions about medical history then. If I am talking to another parent who is trying to figure out issues with their own child, or having an intimate conversation with a friend, those types of questions are perfectly appropriate.

Other times it is incredibly offensive. Strangers in the park, at the museum, in the grocery store or even at the doctor’s office simply do not get to make these inquiries and neither do casual acquaintances. First of all, it is very intrusive. I do not ask people questions about their medical information or that of their children and expect others to offer the same courtesy. Many of Maggie’s medical conditions and most of her disabilities are obvious, and people seem to think that changes the rules. It does not.

Secondly, the implication often is that I would CERTAINLY be better off, and so would Maggie, if Maggie were never born. Sorry. That does not work for me and I am willing to say not for Maggie either. Think what you want about pro-choice or pro-life. Those do not apply once the child arrives. In addition, societal questions about costs of care etc cannot be addressed on an individual or anecdotal basis. They have to be addressed at a policy level. I am her mother. Guess where I am going to fall on those types of questions. I should not have to defend my child’s existence in the world.

My responses when the context made it offensive were generally one of the following:

1) Ignore the question completely and just stare quizzically until they get uncomfortable. This is very effective.

2) Tell them it is none of their business. I did this, but not very often, because then I have to defend myself from the offense they take “Hey I was just interested, obviously you’re sensitive about this...etc

OR

3) Smile brightly and say, “We had every single test!” (Which is true, by the way and all indicated she was perfectly healthy.) “And we were thrilled to learn we were having a girl after two boys!” That is the best one. It presumes the question to be innocent (even when the context dictates otherwise). It lets the person know how happy I am to have a daughter without addressing the value judgment implied in their question. Honestly, it was often difficult to muster the (pretend) enthusiasm when someone has offended you. It is worth it, though, to see the confused look on the faces. Moreover, it makes them ill at ease. If they want to proceed, they really have to pry, which many do not want or mean to do. If they persist, I can use #2 without worrying about hurting their feelings.

Now that Maggie is 15, I do not really get questions like these anymore, which is ironic because now I could handle them better than I could when she was little.

Still to come…religious questions, animal comparisons and random advice. Hmmm. This may be more than three parts. Stay tuned

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.

The Strangers of Kindness

Before I write another thing, I want to say two seemingly unconnected things: 1) people are generally kind and well meaning; and 2) I give and accept prayers willingly.

We had a wild and exciting trip to Target on Saturday morning. Maggie loves going to Target, there is so much to look at and the aisles are nice and wide for easy maneuvering with the wheelchair. Dad came with us, which is a bonus. He and Maggie kept disappearing down different aisle and returning with some ridiculous item that we did not need. Maggie enjoyed that immensely. I would say "put it back" and Dad would say "Mom's no fun." We spent over an hour going through the aisles filling the basket with necessities. They were mostly supplies for Maggie’s care. We use a lot of stuff and buying at Target saves us a bundle.

We finished our loop around the store and got in line to pay. There was a middle-aged woman in front of us in line along with her mother (actually mother in law as I learned a few minutes later.) She smiled at us and we smiled back. It was a pleasant moment.

Maggie started making her “hungry noise”(as we call it). To a stranger it sounds only like a quiet smacking of the lips. However, if Maggie could speak she would be saying, “Hey you two, are you watching the clock? This chick is STARVING TO DEATH.” Suffice it to say when we hear that noise we feed her. Maggie eats every two hours, and if you run over time too long, she will start with that noise. It is a frequent unexciting event. We always have what the tube and prescribed food with us, so Steve took her over to the seats in the cafeteria area to feed her and I stayed in line to pay for the basketful of fun. No one even noticed this because it was just no big deal.

The woman in front of us left and I was standing at the ATM trying to line up the stripe on my card the right way. (Always a challenge for me). Suddenly the woman was back with her face about two inches from mine asking my first name. She scared the bejeebers out of me. I thought maybe I knew her from somewhere and told her. Still, about two inches from my nose she locked eyes with mine and very intently said, “Sally, I know your life must be difficult. My mother in law and I pray together every morning and want to include Maggie and you in our prayers.” (Steve was OUT, apparently).

How am I supposed to respond to this? The physical response was to lean backward away from her face. And the brilliant verbal comeback…..”Uhhh, thanks?”

It is very kind, it is very well intentioned, but it is very odd to have a stranger in your face telling you how hard your life is. The woman left and I just looked at the checker whose eyebrows were up at her hairline. She looked intently at the items she was scanning. I did not say a word. I was flummoxed.

After I paid the $144 for the supplies, I went over to Maggie and Steve who were just finishing the feeding. I told him what happened and sort of screwed my face up and said, “it’s very nice, but it’s just weird, what am I supposed to say.”

Steve did not bat an eye. He just said, “Tell her if she wants to help to give us the $144, right Mag”

Maggie just laughed because Dad is a riot.