It’s been awhile since I've written to you. I’ve made it my business to write about you many times, and whether you’ll approve of everything I’ve written, and shared with your adoring public, is still unclear. I figure, worst case scenario, we’ll share a therapist someday and you’ll have ample opportunity to tell me off or thank me for my forward-thinking, and exceptionally thoughtful prose. At least that’s how I choose to imagine it playing out.
Anyway, this letter is for you. You, my seven and three-quarter year old doll, the sunshine to my rain, the sweet to my sour, the beauty to my…well…fair for my age. But seriously Kate, I love you so hard. Let’s just get that clear right away. And you know what, I know you love me, too. I really, really, do.
You won’t remember the first few years when I couldn’t get my nose out of an autism book long enough to take a good look at my littlest girl and appreciate her for every little quirky move she made. There were times when you couldn’t look at me, or answer to your name and it was crushing. You often ran off and never, ever looked back to see if we were following you. To be fair, you’ve held onto to a form of this fearlessness that terrifies me to this day (Oakley, your loyal service dog has helped with this), but back then, I felt like you didn’t need me or didn’t want me, and it hurt. I wasn’t yet able to understand that it wasn’t about ‘our relationship’ but more about your purely innocent trust of all things. I know, I know, I have this annoying way of making things about myself. Let’s explore this more in future therapy. So, I read and I read and then I read some more because I was going to understand autism, what made my little girl tick, at any cost.
I guess I felt like I was failing you if I didn’t figure out as much as I possibly could on the subject. I realize now that it was just my way of coping, and not very well, at that. Over the years I’ve found other ways to cope. Writing helps, and food, and art, oh and food, and wine, and of course, food. What did I have to cope with you ask? In your eyes, and my own, I have the sweetest, funniest, most amazing little girl who happens to have autism. In fact, some might argue that the autism made her exactly who she is. So, what is there to ‘cope’ with? In the beginning it was fear of the unknown because ‘autism’ can be such a scary word for new parents. Then later on it became anger at how misunderstood you might always be. And now it’s changing because I’ve spent the last seven years watching you hurdle mountains they said you’d never climb and more importantly, I’ve watched you do it without a thought to any other possible outcome. You, with your handsome service dog by your side, have rocked it.
You’ve come so far, Miss Kate; and not just in your taste in music (remember the ‘Wiggles’ years? You’re making friends, now. It was hard to imagine that my powerhouse little blonde tornado could ever slow down enough to make a friend. But you did it, Baby. You didn’t change who you are or pretend, because that is simply not an option for you. You owned your silliness, and your never-ending energy and your Kanye-esque confidence and you found your people.
I’m proud of you Kate. You’ve taught me so much, and I only hope to someday return the favor.
All my love,
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I'm not your moral compass. I'm a wannabe writer with a small but very loyal following, so please don't make any of your major decisions based on my ramblings. I'm just not who you think.
I want to be a warrior mom who spends her days advocating for the rights of individuals with autism, but I also want to stay home and read while drinking boxed wine.
I want to have the patience to talk with Kate about her birthday every single day until it arrives, and then start again the moment it's over, but I also want to turn up Netflix and tune out the birthday script. Yeah, I said it. I want to absentmindedly shake my head while actually focusing my attention on the new season of Black Mirror.
I want to make sure I arrange well-planned play dates with the two friends that finally found their way to Kate and monitor her social interactions to ensure she doesn't scare them away, but I also want to give them sugary snacks and the WiFi password so I can hide in my room and catch that elusive nap.
I don't indulge in these selfish behaviors as much as you might think; or maybe I do, I don't know how high your standards are and frankly, I can't be bothered to worry about that because I am currently using up all of my worrying time to worry about a future that is as uncertain as any of yours.
I do spend much of my time working a full-time job as a teacher, organizing speech and occupational therapy appointments. I do fret over play dates and whether her big sister is getting enough of our attention. I've devoured every autism-related publication I can get my hands on, and I've read the entire internet but I simply can't do these things as much as I did in the beginning.
It took me a few years after the diagnosis to realize that attention must be spent on vain and trivial pursuits. Time must be spent wasting away entire afternoons debating the merits of battery-operated scissors or cat houses and that's okay.
So, if you're still here, reading this, and you'll forgive me my transgressions, I'll continue writing. Or actually, maybe just keep your standards low because I'll probably just keep writing, anyway. :)
p.s. I love sharing our stories with you. If you like following along, consider buying me a coffee to help continue making this website free.
While this update might be a little late coming, it will also be poorly written and self-serving. Yes, I know what I did there.
Okay, our most recent trip to Boston Children’s Hospital so Kate could participate in her third and final round of their autism study.
It was the week before Christmas so Boston was all decked out and though we’ve been many times before, Quincey Market at Christmas is something to behold.
The girls adore Boston and all of our friends at the hospital but this trip held a big bad blood draw for Miss Kate.
In the interest of being honest with our littlest one, we told her she would be having blood drawn.
Now, before you ask, I don’t know what the hell we were thinking because she fretted about that for the months prior to the trip and her anxiety only increased when we arrived.
So, we decided, too little too late, to lie to Kate and pretend we were walking over to the clinic because the doctors wanted to see her cute outfit. (Yep, that’s the level of deception I could manage after driving to Boston for eight hours with the remnants of the stomach flu).
Well, cut to the blood draw and the unnatural strength of a seven year old who realizes she’s been lied to and you’ll quickly find a team of professionals to hold down the Herculean child like they do it every single day (and, of course, they do).
Next, they had to take blood from Alex and I for the study. Something about the parents of children with autism being ridiculously good-looking...
All in all, we’ll take the win for this trip. And you’ll be happy to know that the results of the study, though not available yet, are sure to change the face of autism for little girls everywhere.
And some photos below. The girls in the hospital waiting room (so many toys).
Kate comforting Alex after his blood draw went a little wrong. (Hers is all done at this point, you can tell by her tired eyes)
Kate at ‘Dick’s’ restaurant with a pretend pout because we always have fun there.
And finally, Grace and Kate in front of the Christmas tree at our hotel.
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There’s this podcast I used to listen to. It’s called: “The Last Podcast on the Left”, I discovered it whilst searching for podcasts about serial killers and the like because I have a penchant for those dark things and if I am being honest it might be because there is a small part of me that feels that knowing the details of grisly crimes will somehow protect me from meeting the same fate, or I am just a little bit sick. Either way, I’ll make no apologies for my love of all things murder, from Dateline to my girls Karen and Georgia over at “My Favorite Murder”.
That preamble may not have been necessary but there you have it. Now, what the hell does my odd and dark little avocation have to do with autism? Here's the thing, I was hoping the answer would be, nothing. Listening to audio-books, and podcasts and indulging in a little Keith Morrison each week is as escapist as it gets for this mom. It's a time when I don't think about autism or its hold on our family. It's a time when I don't wonder if there is something else I should be doing. It’s me time, and my favorite time to do it, is on the way to work in the morning, which brings me to the point of this gloomy little essay.
This morning, as I indulged, some of my favorite podcast personalities “The Last Podcast on the Left” (ep 35) used the following phrase: “What kind of retard you rockin’?” as if this was a most clever way to ask about his podcast partners “autistic sensibilities”. The r-word banter went on for a few more minutes before I angrily switched it off. Now, I’ll be honest, I tried momentarily to reason out why these podcasters would say such things. Were they using it ironically, (which is still not okay)? Were they playing characters that were supposed to repulse? In the end, it didn’t matter. They used the most archaic and hurtful idea of my child and yours in an attempt to get a laugh and my stomach turned.
So, what am I going to do about it?
Tell my tens of followers for one. If I can’t reach those short-sighted, small-minded, ‘peaked in high school’ sons of bitches, I’ll just have to tell my loyal following that we still have work to do and it starts with calling these people out every chance we get.
When the phone rang, it seemed as innocuous as any mid-day call from my husband. He calls rather than texts on occasion, mostly to annoy me. Today though, today he had placed our seven-year old Kate on the line. Kate’s autism makes communication tricky, at times, but when she is upset, as she was this day, it takes all of her hard-earned communication skills and garbles them with-in an unrelenting brain. She sobbed on the phone and I knew immediately what was up.
She had been scheduled for a flu shot along with her sister. My mother-in-law and my husband had decided to take the girls to the doctor, knowing full well, it would take at least two adults and a brave nurse to administer the shot to Miss Kate. Of course, it was not her first. We are a family that is grateful for the invention of vaccines and we will always protect our children using them.
Her sister, the perpetual ‘good girl’, likely sat for her turn without a word. Grace, would have been more worried about causing trouble for the nurse than the shot itself. She probably thanked the nurse and went to sit patiently for her sister to be vaccinated.
Even Grace, having done this with her sister many times before, would have been prepared for an extremely dramatic show. She knows Kate will not settle and accept any kind of needle. There are not enough toys in the world to convince Kate that something that ‘hurts’ is a good thing. Her brain doesn’t work that way. Her brain simply cannot conceive of any reason why someone, especially her mom and dad might want to hurt her.
This is particularly crushing. She can’t understand. She can’t be reasoned with. She can’t be bribed. Her autism presents as a cruel barrier to her understanding that we do this out of love for her, to protect her. Instead she feels scared, trapped, hurt and lashes out.
To say it blows, is an understatement.
I don’t want my little girl to think I want to hurt her.
Kate proved too strong that day, and after multiple attempts, many tears and a mountain of frustraton the nurse decided not to administer that shot. We’ll be trying again soon.
Sometimes, this shit is hard.
My nine year old doesn't have autism.
Her little sister does.
However, that nine year old often shares a ‘look’ with me. To be fair, it’s actually a range of ‘ looks’ I wish she hadn’t come to know. These ‘looks’ should be reserved for grown-ups who glance at each other to share unspoken sentiments about the trivialities or silliness of youth.
The looks we share are a silent agreement that we understand her little sister’s autism and all those ways, both good and bad, it can affect each of our lives.
There is a look of frustration. A sideways glance to see if I have noticed that her sister has pushed her too far. A check-in to see if she can take a break from autism for a while, knowing her sister can never do the same.
There is a look of anger. Though rare, it can be both heartbreaking and liberating because Grace has taken a backseat to her sister for so long. This look, with its raised shoulders and furrowed brow, occurs when her sister aims the worst parts of autism directly at me, her mother.
There is a look of sadness. A look we very rarely exchange, you’ll be pleased to know, but a look we share when her sister becomes confused or angry because the world stopped making sense.
There is a look of embarrassment. And that’s ok, because when her sister casually tells the woman at the next table in a restaurant that she ‘loves her big belly’, it’s okay to turn a few shades of red.
There is a look of guilt. This look guts me because she is already wondering ‘why not me’. Why was she born ‘normal’ while her sister fights to make sense of every single day?
There is a look of fear. A look that scares us both. A look that says, ‘will she be ok?’ Will she drive a car, live alone, have a family? All things a girl not yet ten should never think about.
There is the a look of appreciation: With her eyes crinkling, and a knowing smile she nods to me because at nine she is already aware of how funny her very literal sister can be.
There is a look of pride. A small smile when her sister makes a connection that has been troubling her for so long.
There is a look of surprise. When her sister smashes a barrier that has been holding her back in some way.
And most importantly:
There is a look of love. When her sister plays happily or makes a friend. When all the frustration dissolves because these sisters have a connection that eclipses it all.
There is a 'look' to autism and I see it every single day.
You guys know how I like to document everything, so here it is. The long and mildly disjointed detailing of our visit to Boston Children's Hospital. Kate is taking part in an 'Autism Consortium' over the next six months and this was our first visit to the hopsital. If you want the quick and dirty, we'll take the W, and you can stop reading now. If you want substandard prose discussing things that have little or no bearing on our visit, read on.
July 9th, 2017
We get in the Sports Van, as Alex calls it, and head towards Boston. We get about five hours before we have to stop for lunch. We make great time. It could be our stellar parenting or the iPads we made sure were loaded with brain-numbing entertainment. It's really anybody's guess.
We stopped in Newport, Maine because we know there is a McDonalds for Kate (autism=beige food) and a Subway for the rest of us. We make our way to the drive thru but the line-up is so long it was hardly worth it. Alex let Oakley stretch his legs and I ventured into the restaurant to order Kate's Happy Meal.
Now here's a funny story. Stop me if you've heard it.
The line-up inside was equally brutal but at least I didn't have to listen to Alex complain about the wait time. I took my place in line and immediately regretted not bringing in my phone. There's a construction crew sitting near enough the line that I decide to listen to their conversation to pass the time.
"Did you get mine?" Asks the dirtiest of the three.
(Through a mouthful of food his buddy answers) "I don't fucking know."
"You got mine asshole."
Finally it was my turn.
Cashier: Can I take your order?
Me: Could I get a Chicken McNugget Happy Meal and an Iced Coffee please?
Cashier: What to drink with the Happy Meal?
Me: Nothing, thank you.
Cashier: It comes with a drink.
Me: I understand. I'll pay for it. I just don't want it. Just the Coffee, please.
Cashier: You have to have a drink.
(I'll give her the benefit of the doubt. Maybe she didn't hear me)
Me: I don't want a drink.
Her: Just sec. (walks over to get her manager)
(Did she really just walk over to get her manager?)
Manager: Can I help you?
Me: I just want the Happy Meal, please. I don't want the drink.
(I say it with more force now. I enunciate each word and I've lost interest in the construction crew. I've driven five hours with a cranky husband, two small children and a flatulent dog. Bring it.
Manager: It comes with a drink.
Me: I realize that but I don't want the drink.
Manager: I'll just give you a cup and you can go fill it with water.
Me: I don't want a cup.
Manager: It comes with a cup.
Me: Keep the cup.
Manager: (She annoyed now, and her sour look lets me know it) Ring her in.
Me: Thank you.
Cashier: (Hands me the Happy Meal and the coffee) Not even a chocolate milk?
I make my way to the van. It's time to head over to Subway to feed the rest of us.
Cashier: What can I start for you?
Me: Could I please have a Turkey Deli for her (I indicate Grace)?
Cashier: We don't have that. Do you want a six inch for her?
Me: Do you have a kid's meal?
Cashier: Yes, it's a 4 inch instead of a 6 inch.
Me: Okay, she'll have that.
Cashier: *pulls out a six inch sub bun, cuts two inches off and throws that two inches in the garbage.
We made it to Boston.
We check in and wander around until we find a spot to eat. Wahlburgers, it is. Perfect. So good. So, so good.
It's going to be an early night. Our bellies are full. Eight hours of driving was enough.
Early the next morning we hit the hospital. They afford us free parking, which I'm told is at a premium in the city of Boston. We are ushered to meet the clinicians that will be working with Kate.
They offer to take Grace to a playroom to wait with someone while we go over some paperwork. She's terrified. She clutches my arm. Grace is shy and as cautious as Kate is careless. We ask if Grace could come along to save her the anguish of going somewhere unknown and we head into a room to sort out some things.
Next they ask Kate if she is ready. She's practically vibrating with excitement. This whole idea of looking at her brain has thrilled her and she's gone with a clinician before I can lean in and remind her not to go in their purses.
Grace and Alex and I will wait in the 'Family Room'. Grace plays happily. It's going to be four long hours before we are done for the day. Kate will be participating in an exhaustive cognitive assessment. I wonder if she'll make it. She's in a room near us and I've no doubt she'll tell her doctors she's finished if she sees fit.
Now we wait.
Finally, she comes back to us.
She's beaming. She's loved the attention. Fantastic. We'll easily get her back tomorrow for the next session.
We head out to enjoy Boston for the rest of the day.
First stop. Quincy Market, of course. We've been a dozen times, at least, but we still love it.
We find "Dick's: Last Resort", a restaurant where they are, well, rude to you, all in good humour. They make you paper hats that say things like "Motorboats $1.00" or "I went to the prom with Jesus". We knew they toned it down when you dined with kids so we gave it a try. It was a hit. I have never seen Grace laugh so hard. She was getting some of the adult humour and it was making her giggle uncontrollable. You want to hear a magical sound? It's the uncontrollable giggles of a little girl that often takes the back seat. It's the unbridled joy that comes with being on vacation with your family and having everyone laugh with you. It was awesome.
Day two at the hospital was similar to the first except Kate was going to be wearing the treasured 'brain hat' we've been telling her about. 'Brain Hat' is the technical term, I think. She also got to wear a few other cool devices but I won't pretend I know what they were for.
This was just the first of three trips to Boston Children's Hospital. This is probably because Kate's brain has so much to offer.
I know what Kate's Brain is going tell you.
It's going to tell you that:
Kate is innocent. Innocent like few others. Sure she runs on the selfish side (theory of mind) and she is an Olympic level sore loser (ibid) but she's so authentic it could make you weep.
It's going to tell you that:
Kate always looks mad when she is trying to work something out. Like when she is puzzled by something or working out what we want from her. I like this about her. I think it's resolve, strength, motherfucking tenacity. It's impressive, like much about her.
It's going to tell you that:
Kate isn't afraid, of anything, ever.
It's going to tell you that:
Kate is strong. Kate works hard to every single day to make sense of our incessant need to speak in metaphors. She works hard to make sense of our bizarre social rituals.
It's going to tell you that:
You've been privileged to meet her.
We're done at the Hospital! Time to hit Freeport. An overnight stop on the way home. We'll browse the shops and check out LL Bean. The kids will swim in the pool and we'll eat at a nice restaurant. Can't wait.
No offence Boston but $230 American dollars gets a hella better hotel room in Freeport than in Beantown. Oh the luxury. I could cry. Oh but wait, I will.
We relax in the room with its king size bed and pull out couch before we head out for a little bit of shopping. The kids need clothes, as usual.
We wander down to one of my favourite stores. The Coach outlet. I like purses and wallets and bags. We walk in and I take in the smell of expensive leather and cheap perfume.
Alex turns to me and says. "I'm taking the kids. You stay here and buy whatever you want. Happy Anniversary."
So, I, of course, burst into tears in the middle of the Coach outlet in Freeport, Maine.
I'm not sure why I cried. And it won't be the last time I cry this week.
It's either because the gesture warmed my heart, or the emotional toll of taking Kate to Boston Children's Hospital finally got to me, or I have a bad case of the wants and Alex finally allowed me to release that godamn beast. I think we all know the answer.
We are back home now. It was a whirlwind four days and that took a lot out of our girl. The trip was successful to be sure but Kate used all of her tokens and more to show her 'best brain' to the clinicians at BCH. We weren't home long when she fell completely apart at the grocery store. It's okay, because there are two more grocery stores near our house so we never have to go back there again. She then fell apart in the parking lot of the Vet's office. You'll have to read the tiny texts to know more.
This is why I never take her to liquor store, because I just can't afford to lose that privledge. You have to find the funny in these things, you know? You just have to.
I’ve provided you with your token autistic. I’ve been complicit in this, I know that. In an attempt to raise awareness (whatever that means), I’ve sold you a picture of autism. It’s one picture, it’s our picture and for what it’s worth, it’s been as real as we can manage. You can watch and love her (from afar) and it allows you to feel charitable in a sense. You and your good heart can find pleasure in cheering on her successes and mourning her failures. I don’t mean that to sound like an attack in any way. I feel the same way you do. I let inspiration porn warm the cockles of my heart and I dutifully share on social media as if it makes me worthy in some way.
However, because my little girl is real, and so is her autism, I find myself reflecting, often, on whether writing about her offers her anything more than a really good-looking fan club. (You see how I’m trying to win you back after basically insinuating that you feel morally superior because you enjoy following the adventures of a small blonde autistic girl.)
Why am I selling you autism? More importantly, why are you buying it?
Before I attempt to answer, I’d like to describe for you, the last two days. The school year has ended and now that I get to play stay-at-home mom for a summer, I’m in charge or driving Miss Kate to her summer camp. After a terrible experience last summer, where we thought foolishly that Kate could manage the unstructured day at home with me and her sister, we decided, though very expensive, a summer camp would be in everyone’s best interest.
Kate spent eight months having her father drive her to school. Two days ago, I took over the driving, and rather than school, the drop off is her summer camp. Though she adores her camp, the two major changes in her morning routine have upset her to the point of extreme tantrums each morning. Her older sister and friend watch as I wrestle her into clothes and carry her to the van. She fights and screams and no sooner have we turned the corner out of our subdivision does she stop crying and accept her fate. Three minutes more and she completely forgets our fight and spots a deer on the side of the road. “Mama, that deer is probably called King of Bones.” she said, with no explanation and a little smile on her tear-stained face.
She doesn't mean to be difficult. She really doesn't.
To get to the point, here I am, again, telling you about her confusion, her ‘bad’ behavior and our somewhat futile attempts to ease her through these brutal and confusing transitions.
If you’re a regular follower you might expect another story soon, but a funny, heart-warming anecdote this time. Something to make you smile and give you faith that autism or Kate’s autism, in any sense, isn’t so terrible after all. And I’ll likely provide that, all the while wondering if I am doing her any justice at all. Is this all bullshit? Am I costing my little girl her privacy, her right to grow up and have some mystery about her childhood?
Sure, Kate is a ham. In fact, she adores to hear of how I share her stories with you. Is that the aggressively social symptom of her autism or does she really enjoy sharing her world? How can I know?
I just really don’t want to get this wrong. You know? I don't want to cost that little girl more than has already been taken from her.
I’ve decided, I guess, that, for now, sharing is helping her, and me, and most of all you. I have to tell myself that you’ll be more patient, more understanding, more involved when it comes to autism in your own life. I have to believe that Kate's adult life will be made easier by the advocating we do now. And, I have to believe that that is enough.
How did I get so lucky?
I say it to both my girls each night when I tuck them in. It doesn’t matter that the youngest may have brought me to tears with her defiance or disproportionately strong arms earlier in the day. It doesn’t matter that the eldest may have hid in her room reading because she gets upset when her sister gets confused.
I say it because it’s true.
I say it even though the youngest told me she’d rather have her teacher for a mother. Even though the eldest told me she’s afraid her sister won’t ever make any friends.
I say it because the youngest spent the day defying an overwhelming nervous system just to navigate her school day.
I say it because the eldest spent the day battling an anxiety only known to autism siblings.
I say it because the youngest knows no strangers.
I say it because the eldest is fiercely loyal.
I say it because it’s true.
I get to be their mom.
I get to tuck them in each night.
I imagine everyone feels this way.
At least I hope they do.
"Mama, did I make sense?"
She says this now. After she tries to explain something to me, which more often than not, does not make sense. It guts me every single time.
I know so many of you think that because she can talk, and talk and talk, that she can effectively communicate. I am here to tell you that she often cannot.
She gets confused. And this next part is really hard for me to type because, it hurts to say, and more importantly I do not know enough about these topics to speak about it with any amount of sophistication, but here goes. Kate confusion reminds me of dementia or Alzheimers. Or what I think I know of these two things.
Kate's two biggest communication issues are as follows:
Theory of Mind Issues:
I've chatted about this before so if you need a detailed explanation about Theory of Mind and how it pertains to Kate you can click here. Otherwise, the simplest way to explain this is to tell you that Kate whole-heartedly believes that you feel the exact same way she does about any given thing.
If she wants to win at the game, of course, you also want her to win.
If she wants to play with the yellow Power Ranger, of course, you also want her to have that yellow Power Ranger.
If she has no smarties left in her box, than you have no smarties left in your box.
Essentially, Kate can easily become indignant, angry and confused when things don't go her way, because the rest of the world feels exactly like she does, right?
Yeah, it's a tough one. It comes across as bad behavior and those that get their education from Fox news and internet memes will probably give you a hard time about this, but they're assholes, so fuck 'em. They also don't believe in essential human rights, or global warming, so they have their own disability to worry about.
Receptive Language Issues:
This is also not easy for a number of people to understand, and for good reason. It is hard to wrap your brain around the idea that a person can have a large vocabulary but have a serious communication deficit.
Kate can talk to you all day about things she is interested in, of course. She can ask for things, and give opinions and tell some of the greatest and funniest stories on her good days. However, when you speak to her, it enters her brain, she then re-arranges (or so I imagine) the words until it makes sense to her and she goes with that.
Examples of this are harder to share, because most times we both end up confused and we slow down and start over. We've even gotten pretty adept at figuring out what she means even if it doesn't make sense.
So, the older Kate gets the harder it is for her to hide these deficits. She still isn't able to communicate effectively enough to fit in with a group of friends, or get through a day without someone screwing up their face at her, and saying: "That doesn't make sense." (I think this is why she likes spending time with her dog so much. Oakley doesn't ask questions or look at her like she's wrong, somehow. Oakley understands.)
This is why is hurts to hear her ask me if she's made sense. I don't want my super confident little spitfire to feel bad because language is hard and she is trying her hardest to make us understand.
Sometimes I wonder if she has it figured out and we are the ones with the communication deficit.
Anyway, there's my piece for this evening. Thanks for listening.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)