Thursday, November 20, 2014

Beware the ball; more tales from the Tess & Oreo files

As all of you who read this blog know, last month was a very scary one for us. Pneumonia hit Tess hard and we spent nine days in 2 different hospitals and a couple of very scary days in the ICU. It feels like forever ago and it feels like just yesterday. Time is a funny thing.

The day before Tess was shipped off our little island on a midnight ferry run to the mainland, I noticed Oreo acting pretty clingy to Tess. I wasn't super surprised because I knew Tessie had a cold and Oreo tends to hang closer to Tess when she isn't feeling good. Oreo had also been alerting but I assumed it was to seizures.

In hindsight, I was right and I was wrong.

Some of Oreo's alerts that day were pre-alerts for small seizures. The other alerts were because Tess was getting sick. Very sick. Sicker than I ever suspected at the time.

But Oreo knew.

And when, late the next afternoon, Oreo brought her very favorite toy, a ball which she does not let anyone take from her willingly, over and dropped it gently on Tess' lap and then "lapped" her by resting her head on Tess's lap and proceeded to sigh a very heavy sigh, my immediate thought was...

Crap. We may be in some trouble here.

I know how crazy it sounds to base my concerns about Tess on Oreo dropping a ball in her lap, but the only other times Oreo has done that exact same thing, Tess had a pneumonia and then a broken right femur.

Tess and her ever faithful buddy, Oreo, after just getting her leg casted after her femur break

And my theory on this is that Oreo knows Tess is her girl and they've got a pretty unshakable bond now so I think that Oreo did the only thing she knew how to do in the moment to try to make Tess feel better....

She gave Tess her most prized possession. The thing that always makes Oreo feel happy. I even liken that silly ball to Linus's security blanket on Charlie Brown. But that ball is Oreo's treasure and she was offering it up to her girl, on all three of those occasions, when her girl was in trouble.

It just about melted my heart while at the same time scaring me half to death.

It also played a very big part in me being so hyper vigilant of Tess that night to the point that, even thought her sats on the monitor looked okay, not great but okay, I decided to do something that I rarely ever do; I counted Tess's respirations. And they were high. Like sixty breaths per minute high.

It wasn't four hours after Oreo dropped that ball on Tess's lap that I had called out our island doctor to our house and the ambulance arrived and we got on the ferry to get out of dodge.

How does Oreo know Tess is so sick? I have no idea. But she knows, of that I have absolutely no doubt.

And while Tess was at MMC, Oreo was on high alert. So much so that just before Tess was moved down to the ICU in respiratory distress, Oreo had been jumping up on Tess's bed and getting in her face just before her oxygen sats would dip down. When Tess would recover, Oreo would usually jump back down on the floor or come over to Charlie or myself for some attention or treats. Then, JUST BEFORE the O2 would alarm again in warning of low sats, Oreo would be back on the bed with Tess and in her face.

She knew BEFORE it would happen, that Tess's O2 was going dip too low and she would try to tell us.

Oreo on the bed with Tess right before being moved to ICU

Of course we didn't put this together as it was happening, only after when we had time to think about why Oreo had been so "restless" before they moved Tess down to the ICU. Yup, that's what we thought at the time. That Oreo was restless and not that she was alerting to Tess's breathing. But afterwards it was so obvious we couldn't believe we had missed it. Even the doctors and nurses, who were in the room most of that afternoon because Tess was requiring nearly constant medical attention and watched Oreo do this, agreed with us after the fact when we mentioned to them what we thought Oreo had been doing.

Oreo & Tess in the ICU....she was at her sickest in this photo and you can see where Oreo put herself. <3 td="">

Needless to say, the doctors and nurses at MMC thought Oreo was a total rockstar. And they would be right. They also all thought the tale of "the ball" was incredibly sweet. And they would be right again.

But on the other hand, I have learned to Beware the Ball.  ;)

Sunday, October 26, 2014

The Dynamic Duo...

*Retold with permission from Blake and Izza*

For this post, I am going to stray a bit from the usual Travels with Tessie stories and give you a little glimpse into the day in the life of a parent whose child is traveling around Europe with her bestie. Try not to be jealous. ;)

Yesterday as I hopped on Facebook for the millionth second time,  I noticed I had a private message waiting for me.  Considering both of my older girls are relatively far away from me, (one in New York and one traveling around Europe with her best friend), and they check in by private message nearly every day, I figured it was from one of them.

And I was right.  This is the message my oldest daughter, Blake, the one in Europe, left me:



That was it. Not a, "...but we're okay.", or, "...but don't worry.", or even a, " ...but we're not hurt."

Nothing. Nada. Zip.

Naturally I  swiftly typed back this little missive and sat waiting, frozen with panic, for a reply:




I sat staring at my computer screen willing her to respond.

Eleven minutes I waited.

Eleven minutes of me going thru every worst case scenario there was from them being kidnapped by the mugger, to stabbed and/or shot, to maybe the mugger had her phone and underneath that thug life facade, he was really a good guy at heart and maybe he was the one who actually sent me that message so that if I didn't hear from Blake I would assume she didn't have her phone because it had been stolen but that she was okay. Eleven minutes of the mama bear in me totally waking up and trying to figure out how I would get to where she was and then track them down, à la  the movie, Taken and make that mugger pay. Pay dearly. Because, you know, I could so totally do that. Uh-huh. Eleven minutes of me planning multiple, and very hurtful, ways I could go kick the ass of the guy who had dared to mug my girls. Again, because I could totally do that.

Yeah, crazy.

But you need to remember, Tess had literally just come home this past week after spending nine very scary days at the hospital and I am exhausted. Plus my middle daughter was on Staten Island and had been just a tad bit horrified to hear that the doctor who had just been diagnosed with Ebola had been using the subways. The same subways that she often takes so she was looking for a little reassurance from me. And the odd thing is, for someone who is, shall we say, gifted, at worrying, Ebola is the one thing I am not so freaked about. Go figure.

At any rate, Blake did finally reply and told me the tale:





Well, Holy Drama, Batman!!

We talked for a few more minutes, and she reassured me a number of times that they were okay, just a little but shaken up by it, but otherwise totally fine. My heart rate finally resumed it's normal rhythm and I began to fully appreciate what had just taken place.

And although I was a little concerned that by fighting back they could have been very seriously hurt, what I mostly was, was impressed. I mean think about that for a second. Those two girls actually fought back against a mugger in a foreign country...and WON.

Bad. Ass.


The Dynamic Duo!

I guess mama doesn't have to go kick someone's ass after all. These two already took care of it. :)

Tuesday, October 21, 2014

Fear and relief...

Fear is watching your child get a cold and within thirty-six hours, go from totally fine to breathing about 60 breaths per minute and knowing you are at least an hour and a half away from the nearest hospital.

Fear is calling out the doctor at ten o'clock at night to just "give them a head's up" that it could be a long night only to immediately hear, "Give me ten minutes. I'll be right there."

Fear is having that doctor page out the on call pediatrician to consult about a middle of the night transport because your child is too unstable to wait until the ferry runs in the morning and then hearing them tone out the ambulance to your house.

Fear is getting admitted to your local hospital at five in the morning after nearly six hours spent in the ER, only to realize your child is getting too sick for that hospital to manage.

Fear is hearing the respiratory therapist page out the pediatrician at work from your child's room and hearing them say to the receptionist, "I don't care what he's doing right now! You tell him I'm with Tess Reidy and we are at maximum oxygen flow on a non-rebreather mask and she's still not stable and he needs to get on the phone and talk to me!"

Fear is hearing the words, "Dr. V has cancelled his afternoon appointments and is on the way. He's calling Portland and having their pediatric intensive care team come get her."

Fear is asking if it's going to take a while and hearing, "No. He told them to 'scramble' so they are making her a top priority."

Fear is once again meeting the transport team and stressing that I have not signed a DNR on Tess. She is a FULL CODE.

Fear is the talk of intubation.

Fear is literally driving right behind the ambulance that is carrying your very sick child and not knowing what's going on in there.

Fear is getting to a regular room at the bigger hospital only to be told less than twenty-four hours later that Tess's pneumonia seems worse and having them order a repeat chest X-ray only to tell you that she is very serious, her lung is a total "white out" and that they think it has collapsed.

Fear is having the doctor order an ultrasound to check for fluid on the lungs and hearing the nurse tell radiology that your child is too sick to go down to them and they need to get up to her STAT.

Fear is the doctor telling you there is fluid there and that they are moving your child to ICU because she is in respiratory distress.

Fear is telling your other two kids, who are constantly checking in and asking if they need to come, one from Europe, and one from New York, and not knowing if you are doing the right thing by telling them to just stay where they are.

Fear is the talk of chest tubes to drain the fluid but at what risk overall?

Fear is more discussions of intubation with the doctor's worry that if they do intubate, she would never be able to be taken off of it because her lungs just aren't strong enough.

Fear is long talks of "decisions" that may need to be made but thankfully, never were.

Fear is meeting with the pulmonologist, who you love right at the first meeting, and having them use the diagnosis, "Neuromuscular Respiratory Failure", which is what Tess has.

Fear is hearing the words "Palliative Care" and asking us to meet with them and get Tess set up for it.

Fear is being sent home with new equipment to learn how to use on your child.

Relief is hearing the doctor say that can't believe how much better she got overnight even though she is still very sick.

Relief is seeing that smile from her, weak though it may be.

Relief is hearing a giggle.

Relief is watching her body stop the awful shuddering it had been doing in an effort to keep breathing.

Relief is hearing that Palliative Care in Pediatrics is different then with the elderly.

Relief is watching your little warrior fight her way back and show everyone just how tough she really is.

Relief is hearing the words, "We're really pleased with how she is doing."

Relief is bringing her home.

This is about the only way I can write about what happened over the past ten to eleven days. There are probably tons of typos and a grammatical error or two but hey, I'm tired!

They were the scariest days of my life and I am just trying to focus on the good stuff now.

We still have to meet with the Palliative Care team and need to make decisions for Tess, but we are home and she is recovering. For now, that's enough and we are beyond grateful.

This is our warrior girl. This is the face of fierce. :)



Saturday, August 30, 2014

The tale of the college road trip...

The hubby and I took Ellie to college in New York last week and we made it out alive. Barely.

Now you need to understand that in order to make it all work logistically, much planning had to be done. After all, what about Tess? Would she come? And if we brought her with us, how could we fit all of her stuff plus Ellie's stuff in one van? What about Oreo? Where would she stay while we were gone. It's not like she can stay with just anyone. She is too specifically trained and needs to be with people who know her commands, which basically left Charlie or myself and we were going to be in New York with Ellie!

Holy Dilemmas, Batman!

After a lot of consideration, I arranged for our faithful Sheila to take Tess. However, due to her deathly allergic reaction to dogs, a plan was still needed for Oreo. We decided to just bring her with us. Oreo is a bit high strung and we just knew that being away from Tess would be hard enough on her but if we left her behind without, well, me, she would just fall to pieces. Pieces that may never be put back together  again. Yes, she is that high strung... or "sensitive", as Jeremy from 4Paws would say.

This still left the dilemma of getting all of Tess's stuff to Sheila's plus having enough room for all of Ellie's things. What to do? What to do?

Okay, we would take BOTH of our vans. The handicapped one for Tess to travel with all of her stuff to Sheila's in, and the other one to load up with all of Ellie's things. I would take Ellie with Tess and me, and meet the hubby in Portland before ultimately dropping off Tess at Sheila's. Then Ellie, the hubby, and I would take the other van on to New York. Easy Peasy. Sort of.

Now we just had to get both vans off the island the same day. Alrighty then. In order to do that, both the hubs and I would have to get up at 5:30 the day before we wanted to get them on the ferry in order to secure spots for them on the boat. The day came, the alarm went off and both of us grudgingly got up at that disgusting hour to procure line numbers. I made out just fine and got the one I wanted without a glitch. The hubs on the other hand? For whatever reason, and I'm not saying he was doing anything wrong but once again, I got thru without any problems what so ever while he kept getting a busy signal and by the time he got thru, could only get an afternoon line number for the ferry which really just wouldn't do.  Long story short, my mother and step-mother had actually made us reservations for the ferry a while ago and there was never any need to get up to try to get line numbers in the first place. And I had totally forgotten. Oops. My bad, Charlie.

So we were not exactly off to an auspicious start but were not discouraged. Charlie left on an early boat to get the van we would be taking to New York checked out because the breaks were making and odd noise. Yippee. Nothing like the thought of a long drive to make you want to be sure your vehicle isn't going to try to kill you. Ellie, Tess and I went off on a later boat that morning with plans to meet up with the hubs at a hotel for the night in Portland.

As we were heading toward the mainland I noticed my dad hauling his lobster traps near the ferry's route. Coincidence that he had timed up those strings of traps to be hauled right when he knew Ellie would be going by on her way to college? I think not. So she hopped out of the car to wave to her Papa one last time and he was waving at her from the deck of his boat.


Papa waving goodbye


The first stop once we got to the mainland was to the Vets because our "sensitive" girl, Oreo, gets car sick and needed more meds to help control the mountains of vomit that were sure to happen without them. Good times.

Finally we were off and about and hour and a half later met up with Charlie at our hotel. Ellie still needed to do some last minute dorm room shopping so back in the van we went and headed to the mall. Mostly, the hubs, Tess, Oreo, and I just sat and waited for Ellie. But we did all troupe into Build a Bear to have Ellie make a stuffed animal for Tess with her voice recorded in it to have in Ellie's absence. Tess picked out a pink octopus with a polka dot dress. I wanted her to pick the super sparkly dress but no, that kid seems to think she has a mind of her own. Sheesh!

Ellie and Tess got to have one last slumby together at the hotel and the next morning we dropped Tess off at Sheila's where Ellie had to say goodbye to her and I promptly burst into tears like a total wuss. Ellie kept asking in a very disgusted tone, "What is wrong with you?!", and Sheila was laughing at me. It wasn't pretty. Or rather, I made a pretty big fool of myself.

We hit the road and got as far as Massachusetts before our first near death experience. The hubs was driving but I, being the thoughtful and responsible spouse that I am, was doing a great job at back seat driving doling out helpful advice. Like screaming out "BRAKE!!!!!!" as every car in front of us as far as the eye could see had their brake lights on while we were still putting the petal to the metal. Thankfully the hubs still has lightning quick reflexes and slammed on the breaks and swerved into the break down lane to avoid rear ending the car ahead of us as half the contents of the van surged forward on top of Ellie and Oreo. This type of scenario, minus the swerving and falling luggage, may have happened several more times so that by the time we stopped for lunch at some po'dunk little gas station in the middle of, "where the hell are we" and "I hope it's easy to get back on the highway"-ville, we were all a bit frazzled.

The hubs was rather tense with me and all of my helpful advice I had been shrieking out, Ellie was a bundle of nerves and was going into fits of hysterical giggles, and poor Oreo looked possessed as we straggled out of the van and lurched around as if drunk while trying to appear as if we really did have our shit together.

I took Oreo to go potty and told Ellie to go locate the rest room while the hubs put gas in the van. Ellie came back and informed me there was no restroom. Um...huh? This was a mini mart gas station. Rather dumpy and remotely located but surely there was a restroom. And yes, right as I went in, there were signs above pointing right to them. I made Ellie take not of the signs and with just a smidge of sarcasm in my voice, advised her to store them in her memory for later use as knowing what the universal sign for restrooms was was bound to come in handy while living in the city. I know, I'm a good mom.

After a very long day and a trip thru the Bronx, we made it to our hotel on Staten Island. Huzzah!

The next morning we hopped in the van to get Ellie moved into her dorm at Wagner College. It was really well organized and some Wagner students unloaded everything for us and made sure it all got to Ellie's room but we still had Oreo to contend with. Ultimately, the hubs and I took turns waiting in the van with her while the other was with Ellie helping unpack.  Did I mention I was wearing cute sandals? And did I mention that we had to park across campus, at the football field and that Ellie's dorm was the farthest one away at the bottom of a hill? No?



It was torture. My feet got so bad that after about my fourth trudge back up that hill to the Union where I needed to go get something in the bookstore and which, once you got it had steps to get in, I actually said rather loudly, "Who puts steps at the top of a hill to get into a building?!?!" And some man going in the opposite direction looked over at me in what I feel sure was total solidarity and said, "That hill's a bitch, isn't it?" I think I fell in love with him just a little for understanding my pain.

My feet got so sore (and bloody with blisters-gross, I know) that I finally made Ellie give me her flip flops and put on my sandals. She wasn't too happy about it but I let her know in no uncertain terms that she could either give me her shoes or I was going to flag down the next security guard going by in a golf cart and make a scene that would most likely result in her total embarrassment. She gave me her shoes.

Late in the afternoon was the family BBQ which was the last event before the families all said goodbye and left. By this point we decided that Oreo could come with us as it was out on the grass and we knew she would behave. We put her service dog vest on her and she instantly went from a normal dog to what I can only assume was a unicorn based on the kids' reactions to her. It was like they had never, ever seen a dog in their entire lives. While Charlie and Ellie stood in line to get our dinner, I met kid after kid via Oreo the unicorn dog. One girl actually told me that meeting Oreo had, and I quote, "Made her entire life". Ooookaayyyy. But the kids were pretty funny and it did help pass the time and made me feel a little less of a loser standing all alone in a crowd of people.

At one point the Dean of Nursing came over to me and introduced herself. She then asked me if she could get me anything. I said no thanks, I was all set but she asked again and seemed really concerned for my overall well being. After she left I was thinking about it and it dawned on me that she just might have gotten the impression that I was....blind. I mean think about it. I was standing in the same spot for close to half an hour without moving because my feet and back were killing me. I had a service dog with me and, get this, I was wearing dark black sunglasses. In retrospect, I must have made quite the picture standing on the Sutter Oval. Sigh.


See those dark glasses? Yeah...

We finally said goodbye to Ellie and I did not shed a single tear. It was hard because she looked pretty overwhelmed but I knew she would be fine. We needed to get back to Biddeford to get Tess because Sheila had to work first thing in the morning. Garmin said we should be there by 11:38 pm. Any guesses on what time we actually picked her up? Anyone? Bueller? Bueller?

1:45am. Got that? ONE FREAKIN' FORTY FIVE IN THE MORNING! Oh my god! It was just unbelievable Between the traffic (we actually went thru the city on the way out) and the weather, it became a quest to get to Sheila's. Almost like in a movie where the hero and heroin meet every obstacle possible and then some, yet must overcome them all.  It literally felt like the road was playing on a loop and it kept rewinding. Like the closer we got, the further we were away. It was almost comical in the absurdity if it all.

NYC


But we did make it and lived to tell the tale.

This tale.

You're welcome.  ;)




Thursday, July 24, 2014

Party at Casa de Reidy...

My dad turned 67 a couple of days ago.

SIXTY. SEVEN.


Wowzers. I need to let that sink in for just a second.

Okay, anyway, we threw him an intimate (read: just he and Ann with my brother's and my families) little birthday bash. I had woken up with a lovely migraine just drumming away in my head so Blake offered to make the cake, go to the grocery store, make the veggie platter, and vacuum and dust. 

Yup, she's a good kid.

I finally rallied around three o'clock and dragged myself out of bed to shower and get dressed. Then I had to put the finishing touches on the tableware and decorations to make it look at least a little party-ish. Next I whipped up some frosting for the cake, got that done and looking somewhat presentable and was all ready when everyone got here for the cook out. 



Best cake EVER! Auntie's white cake. YUM! (shout out Lucy)

the aftermath of 67 candles getting the crapped kicked out of them



It was after dad had managed to blow out all his candles (yes, there were 67 on that damn cake, thankyouverymuch) and we were all just sort of sitting around talking that I heard a lone voice whisper softly amidst the noise, "I wish it was Christmas!".

Well, of course that got my immediate attention and I gazed with so much pride on that little precious angel who had spoken those hallowed words.

My niece, Dreyenn.


while this may look like an innocent photo of Tess and Papa, look again. Right behind them is Drey plotting her Christmas intervention. God, I love that kid. 


I ran right over to her and asked if she thought we should, oh, I don't know, maybe play some Christmas Carols? I was nearly shaking with Christmas fever when she ever so enthusiastically said, "YES!".

Be still my heart.

I grabbed my laptop, got the Pandora Christmas Station (which I have book marked in case of emergencies such as this) and put the Carols on blast.

Now I did notice that not everyone seemed as excited as Drey and me about this most incredible turn of events. What was this? Scrooges in MY HOUSE?! I don't think so! All that muttering and grumbling from they who shall not be named managed to do was to get Drey and me to start singing along at full volume to those most beautiful songs, of all the songs, in all the land.

Complete with dance moves.

Dad looked up rather disgustedly with a snarky little comment of, "What the hell are they doing? Are they singing CHRISTMAS CAROLS?"

Um, yeah dad. It's not all about you (even though it is your birthday).

Oreo decided that Drey and I were in need of immediate medical attention as she mistook our sweet dance moves for seizures and proceeded to run over to us and bark like a crazy animal.

Sheesh! Talk about insulting.

But Drey and I were not to be deterred or discouraged from our Christmas fervor. Not us. No way!

While we did stop dancing, we also sang even louder. Take that Oreo!


They've got the fever! The Christmas fever! And they were awesome.


Drey began to tire out and eventually crawled into Oreo's dog crate (while still listening to the Christmas Carols; just not singing anymore). She oohed and aahed over the luxurious conditions of the crate and there was even talk of getting herself set up in there, much like a teeny tiny apartment, complete with Christmas lights, a tree, and even a stocking to hang.

I told her I would totally set her up.


Like Snoopy's. But better.


And that, my friends, is how we roll at the Reidy Ranch. And also how I am succeeding with my plan to have the whole world love Christmas all year like I do. One innocent little child at a time.


See the one on the right? She's next. The one on the left has already been indoctrinated,  shown the way.




Besides, it's not a party until the dog thinks your seizing as you dance and sing to Christmas Carols.


Excuse me...are you in need of immediate help?

Saturday, July 12, 2014

Adventure on the high seas...

Ahoy Mateys!

It's been a fun filled week as we packed up the Family Truckster (or in our case, the handicapped van; doesn't have quite the same ring to it though, does it?) and made the trek to Rangeley for our annual summer vacation.

Mountain vistas. Tubing on the lake. Multiple moose sightings. Fun little shops to blow all your money in  peruse. Bowling. Yes, my friends, we did it all.














There was one teensy little, well, we'll just call it a life lesson.

It all started when my dad informed us he had rented a pontoon boat so the whole family could enjoy an afternoon together on the lake. And naturally, all I could think of was the movie, The Great Outdoors, with John Candy and Dan Akroyd. You know the one; family vacation at the lake and John Candy wants to take a cruise on the lake in a pontoon boat but Dan Akroyd wants a speed boat? Come on, you must know this movie! No? Okay, well after you read this, go rent that movie. Meanwhile, here's the scene I'm speaking of:


Roman: I think we should go into town tomorrow and pick up a ski boat. Whaddya say? Sound good, guys? Uncle Roman'll blow some coin on a kick-ass drag boat!
Chet: That's OK, we're renting a pontoon boat.
Roman: Pontoon boat? What the hell are you gonna do with a pontoon boat? Retake Omaha Beach?


See? Funny stuff. Anyway, I digress. Back to my tale....

I was a little hesitant because it was pretty windy that day. Like, really windy. Dad made the comment that if the wind hadn't flunked out by the time we were supposed to go, then we would just scrap the whole thing. Also, Tess is not exactly an "outdoors" kinda gal. She's more, put my movie on and make sure I'm warm and comfy type kid.

Well, three o'clock rolled around and I went down to dad's cabin to inquire whether we were still going. In my humble opinion, the wind had not let go but he had other ideas so we all packed up and headed down to the marina.

The pontoon boat we had rented for the afternoon had definitely seen better days but we were not deterred by a few dents and shredded seat cushions! Not us by gosh and by golly! So in hopped  Dad, Ann, and Kris, with Drey and Becca. Next went Blake and Bobby with the tube raft for tubing should the mood strike. They finally got that situated so that I could climb aboard with Oreo, who by the way, gets motion sick and bonus, was completely and totally freaked out by what she must have thought, by the way I had to literally drag her on to the boat, was her imminent demise. Okay, so finally  Oreo was on the boat. Terrified, but on. I handed her leash off to Kris so I could "help" get Tess on the boat. Of course by "help", I mean screech gently and soothingly talk to Oreo and promise her we really weren't trying to kill her while simultaneously giving orders to dad and Charlie on the best way to load Tess, who was in her wheelchair, onto the boat.


The hubby and my dad made it abundantly clear they didn't need my nagging most useful advice so I took a seat and let them finish without my help. Humph!

Jeff had wisely decided to take the small speedboat to tag along beside us with so the kids could go tubing from that (and he was able to be alone 90% of the time-like I said, wise man) and we would anchor our little pontoon boat and just leisurely watch.

Finally, we were all aboard and it was time to set sail!

The boat immediately stalled.

No worries. We're all hearty fishermen here! We'll get her to go!

It stalled again. I shit you not.

At last the little boat that could sputtered to a start and we were off!

Well, as off as you can be in a pontoon boat that is being besieged by wind and waves.

Kris observed that we were the only two boats on the lake. I observed water spraying up over onto us as we hit the chop and then washing over the decking. Oreo took one look at that water and, like a bullet out of a gun, shot herself onto the bench seat with me and laid across my lap, panting and shaking, while trying to bury her head in my armpit to hide from the "rogue waves" she must have been seeing in her hysterical frame of mind.

Tess just looked pissed to be there.



So happy...not. But she rallied later and ended up thinking it was fun!




Naturally we all found this quite amusing. Who, but us, would have a whole boatload full on the lake on one of the windiest day of the summer, complete with disabled child and dog who did not know how to swim?



This picture does ZERO justice to just how choppy it really was.


After about an hour of slamming into the little waves, and me feeling convinced the Oreo was going to vomit everything she's ever eaten in her life onto my feet, we made it to a lee where the wind wasn't so bad and the lake was calm.

We stayed there for about another half hour while the kids swam, and went tubing, then we decided it was time to head back in. Oreo had even calmed down by this point and was actually enjoying the ride as was Tessie, who decided, like everything else now, as long as Oreo is there, she's cool with whatever is going on.

We got safely back to shore and all headed back to our cabins. The next day I went with Dad, Ann, Blake and Bobby to go in my dad's speedboat for a cruise around the lake while Blake and Bobby were being towed in the tube. As we park at the marina we see our little pontoon boat up on the shore. The owner saw dad and came over to tell him that the whole time we had been out in the boat, one of the pontoons had had a small hole in it.

We had been sinking the.whole.damn.time.we.were.out.there.

Naturally.



Our custom pontoon boat


Pshaw! Nothing a little bondo won't fix!



And do you want to hear the best part? The absolute clincher that basically sums us up as a family?

The only person on that boat who had a life jacket on was the dog.

Not the kids. Not even the kid in the wheelchair.

The dog.




It's called good parenting, my friends.  Or complete and total idiocy.  I'll let you be the judge.

PS I still think it's funny. :)

PPS There really was never any danger to Tess. Seriously. Don't send DHS to my house. Tess was very safe and we had a contingency plan all along. ;)





Tuesday, June 17, 2014

Ellie's Graduation speech: aka....SUPERLOVE!

Ellie calls Tess her "Superlove". She says this is because they are not only sisters, they are "best friends" which means they have double the love, hence...SUPERLOVE!

This past Saturday Ellie graduated from Vinalhaven High School as Valedictorian and gave one of the best speeches (in this mom's humble opinion ;) ) I have ever heard. She also insisted on sharing this special moment with Tess. Her Superlove. She also gave her Valedictorian Stole to Tess as the stole was to be given to the person in your life who has influenced and inspired you.







Below are some pictures of Ellie and Tess on stage during her speech, as well as the video and the transcript of it below that.














Ellie's Graduation Speech

As I stand before all of you today, I feel extremely grateful and blessed to be here.  A lot of people don’t take the time out of their day to actually think about what they’re grateful for, and a lot of people also may not realize the one thing that, I think, we should be the most grateful for.  I am so thankful to just have a normally functioning body and brain.  I know it probably sounds like a really weird and random thing to be thankful for, but as I stand here today, I cannot help but look at my younger sister, Tess.  I look at Tess and see the bravest, smartest, kindest little girl I have ever met.  I also look at Tess and see a girl who, even though she has more stories to tell than half of us in here, will never be able to tell those stories.  As I’m standing here, I remember two years ago when Blake was in the same spot as me and giving an amazing speech.  Tess will never have the chance to do that like both of her sisters have.  She will never be able to sit onstage in 2021 with her graduating class, and she will never have the chance to be Valedictorian or Salutatorian.  So with that being said, I would like to do my speech with Tessie.

I know my parents are probably crying right now, but I didn’t bring Tessie up here to make everyone sad. I brought her up here because I would not be who I am today without her.  She is so much a part of who I am that I want to celebrate my successes with her, not in front of her, and I want to give her a chance to celebrate her successes, too.

I don’t know how she does it, but Tess is able to smile even in the hardest, toughest times.  She has taught me to always find the good in every situation, because why bother to be unhappy about something that you can’t change?  She shows me everyday that I am in command of my own attitude.  Think about the last time you stubbed your toe.  Now think about your reaction to it.  Did you hobble around for a minute?  Did you keep on going but mutter something angrily under your breath?  Trust me, I have been guilty of both of these reactions before, but just try to think about the positives in the situation.  Hey, at least you have toes to stub.  At least you have legs and feet that allow you to walk around at all.  Maybe you can’t change what is happening, but you can choose what you do about it.  You are the one who makes the choice to react the way you do.  Tess has shown me that happiness and gratefulness are choices, and that what you get out of your life is in an exact relation to what you put into it.  
Even on my worst days, I have to remember that there are so many people out there who have to work so hard every single day to do what I can do without even thinking about it.  Tess has taught me that yes, times can get very hard, but you should never give up.  Even if you make a mistake, or it looks like something might not work out, don’t give up on a dream, and if you feel like your dream is worth giving up on, that’s okay.  Find a new dream. 
Tess continues to show me how lucky I am to have all the opportunities that I do.  I have learned to take them, even if I’m unsure if I’ll like them or not, because I’ll never know what I like until I know what I don’t like.

So, Class of 2014, we are in command of our own lives now.  You might be scared, you might be excited, or you might be like me and be feeling a lot of everything, but whatever you are feeling, just go out there and try.  Let’s go out there and try to appreciate the little things, whether it’s your normally functioning body, or the amazing restaurant you found, or even the extra hour of sleep you got one night because you finished your work early.  Try to remember that your worst day could be someone else’s best, and always remember that happiness is a path you choose.  If you don’t take the time to find happiness, happiness may not find you.  Now let’s go out into the world and make our island proud. Thank you.


Tuesday, May 13, 2014

I remember...

On this day last year, I had my mother and Ann over for a Mother's Day brunch and then hopped an afternoon ferry with Tess and Charlie in order to get to Boston for Tess's surgery the next morning.

A whole year has passed and yet in so many ways, it still feels like yesterday.

I can vividly remember getting up early on Monday morning and Charlie and I giving her what would be her last real bath for the next six weeks. I remember walking to the hospital from the hotel down the street and registering her for surgery. I remember the nurses prepping her in the OR pre-surgery waiting area and the doctors and anesthesiologists coming in to discuss what would happen during the surgery and making sure all of our questions were answered. I remember giving her one last kiss and a, "Mama loves you." and then watching them take her away. I remember that they let her take her favorite blanket and baby tad in with her. I remember feeling like I couldn't breathe very well.

I remember thinking that I might never see her alive again. I remember praying. Hard. I remember leaving the hospital with Charlie to go wait out the bulk of the next eight hours at the hotel even though it felt SO WRONG to be leaving Tess there without us. I remember laying on the bed in the hotel room and watching movies on the pay per view channel to try not to think about why we were really there and why Tess wasn't.

I remember dreading having to answer my ringing cell phone two hours later when I saw the hospital's number on the caller id. What if it was bad news? It wasn't. Just the preplanned check in to keep us informed on how she was doing. They would be calling every two hours until she was out of surgery.

I remember getting ready after what seemed like an eternity, to go back to the hospital to see her in the ICU. I remember being so scared and worried about how I would handle seeing her so fragile looking? I remember feeling guilty that we had left her feeling good, and knowing that the next time she would see us, she would be feeling terrible due to the decisions we had made for her that she had no say in. I remember saying to myself over and over, "God, please help me be strong.", until it became a mantra I would silently chant whenever I started to feel completely overwhelmed. Which was often.

I remember finally getting called into her ICU room and being just so relieved to see her even if she did look so pitiful. I just wanted to touch her. Talk to her. I wanted her to know we were there and were going to take care of her.

I remember learning from the awesome nurses how to take care of Tess, who was in knee immobilizers, a wedge, and an ankle cast on her left foot and would be for the next six weeks. I remember being so worried that when she did finally wake up, she looked brain damaged. She didn't look like my Tess at all. I remember getting scared enough about it that I finally asked someone why her eyes were rolled up to the very top of their sockets whenever they were open and being told, "It's the drugs". I remember wanting her off those drugs. Pronto.

I remember being worried about her breathing and being assured that it was a normal post op reaction as well as a reaction to all of the pain meds she was on. I remember insisting on a chest xray to rule out pneumonia. I remember that it was taking her longer than they thought to be well enough to be discharged. I remember them talking to me about sending her to a rehab facility which I vehemently refused. We would take care of her at home, thankyouverymuch.

I remember trying to get her in the car to get home and being so exhausted when we finally got here that I could barely think straight.

I remember that within about three days after being home, Tess seemed to be getting very sick and Sheila came to spend the weekend because Charlie had to leave to go attend a family event on the mainland. I remember Sheila being up all night trying to help Tess breathe by suctioning her and giving her oxygen and that by the next afternoon my living room was full of EMT's and we were loading Tess up in the ambulance to go to the hospital. I remember being there for about two days when all hell broke loose, then talking to the pediatrician about whether or not I needed to get Charlie Blake and Ellie to the hospital "just in case" and his response that if I could get Charlie there then I probably should, and the next thing I knew, I was calling my dad at ten o'clock at night crying and telling him he had to get Charlie over to the mainland because Tess was being transported to Portland and I couldn't go in the ambulance with her. I remember the second Charlie came thru the Special Care doors and the instant relief I felt when I saw him. I remember meeting the intensive care team that drove up from Portland to get Tess and discussions of intubation and a medically induced coma being a very real possibility. I remember discussing with the doctor that fact that Tess did not have a DNR signed and that no matter what happened between Rockland and Portland, they were not to stop working on her if the worst should happen.

I remember leaning over her stretcher, trying so hard not to cry in front of her, and telling her once again how much I loved her and that even though I knew she was very tired, she needed to be strong and keep fighting. I remember worrying that I wasn't strong enough to handle it if anything should happen.

I remember driving in the dark, at two o'clock in the morning, knowing that Tess was somewhere up ahead of us literally fighting for her life. I remember trying not to think the worst and constantly thinking it anyway.

I remember nearly every minute of the eight days she spent in Portland trying to recover from that post- op pneumonia. There were some very scary moments, but also, some really funny ones. I remember bringing her back home and praying so hard that the worst was behind us.

I remember how long it took for her to get better from both the pneumonia and the bilateral hip surgery and tendon lengthening. The massive amount of pain she was in. How she would cry almost every twenty minutes, all day and all night for months. I remember thinking I was going to lose my mind.

I remember the guilt. Good Lord, the guilt. With every anguished cry from Tess, the guilt would squeeze my heart and make it hard to breathe. The "what ifs" nearly drove me mad. The second guessing and the regret of making the decisions we had for her were eating away at me.

I remember going into her pediatrician's office and bursting into tears from sheer exhaustion and frustration at not knowing how to help Tess feel better. I remember all the times we were told, "This is a year long recovery. She will not feel good for at least six months, and not like herself, for nearly a year". I remember not believing them when they told me that prior to the surgery and having to come to grips with the hard reality after the surgery.

I remember being so scared because Tess's lungs seemed to have gotten very damaged from the surgery and pneumonia. I remember being up at night, often, with alarms blaring and oxygen concentrators whirring trying to get her to just be okay. I remember Special Care stays at Christmas and New Years all the while knowing we had to get her healthy enough to take on her upcoming Make a Wish trip to Ohio. I remember feeling terrified to take her far away from the doctors who knew her when she was getting sick so often. I remember thinking that it was the most stressful Make a Wish trip to ever be taken.

Well, I have to say, that at around the ninth month marker post surgery, Tess turned a good corner. Her pain was gone. At least most days. We got her on breathing treatments that seem to be really helping to strengthen her lungs. She hasn't been hospitalized in over four months. That's huge! Apart from having her leg recently broken during physical therapy, Tess has been feeling good. Happy. Giggly. Excited to have her new BFF, Oreo. I guess that whole "year long recovery" talk wasn't just them being overly dramatic after all. Silly me.

At any rate, it is such a relief to see her like this. And I am so grateful that last year is over and even more grateful that I didn't have any idea going into it how truly awful it would be.

I've said it before, and I'll say it again...sometimes ignorance really is bliss.

Saturday, April 19, 2014

Oreo...she's quite a cookie

I figured it was time for a little Oreo update. First, the bad news.

We are learning that Miss Oreo thinks the house and yard are hers to protect and that she will growl when she sees anyone or anything outside, maybe even let out a bark, and that she will growl almost every time the front door opens if she cannot immediately see who it is. This is not an acceptable behavior because she should never growl, and her barking should be reserved for alerting to a seizure only.

She also is trying, much like a toddler, to test and push her boundaries here. And I must confess, we were letting her get away with way more than any of our other girls ever did! She was not always staying in command and would basically do what she wanted when she wanted. And just like what happens to every other parent that spoils their child, she was getting a wee bit out of control and we were constantly making excuses for her because she is just such a good dog in comparison to any other dog her age. Also, her being naughty only ever happens at home. When we are out in public and she is in full on "work" mode, she is just perfect.


case in point...staying in the perfect DOWN command while at Children's Hospital

And let's face it, when it's your dog that sniffs out an ear infection in your child who cannot tell you their ear hurts so you wouldn't have realized it yourself until other symptoms began to appear, you tend to be able to overlook the little imperfections in behavior.

However, it get to the point where I knew we were not doing the right thing by Oreo, the people who took so much time to train her, or to Tess, to let her continue with her "bad" behaviors. So I put in a call to the lead trainer at 4Paws and told him everything that was going on.

I got a much needed training refresher and pep talk and am now implementing all of the suggestions that Jeremy told me to try. There is still room for improvement with Oreo's behavior, but she is definitely responding positively to me being more firm with her and not making excuses for her when she is being naughty.

And now for the good news.

We just love her to pieces. She is an amazing dog and makes Tessie laugh and giggle more often than we have heard in such a long time. She is pre-alerting to Tess's seizures, and again, alerting to the ear infection really just blew me away! She is very loyal to Tess and is quite the mother hen with her.

The first time that Oreo saw Tess get PT, she did not like it one bit. She got between Tess and the PT person and then, after a bit, Oreo literally laid down on the floor and put her paws over Tess so they couldn't move her anymore, as if to say, "Leave my girl alone!" We were cracking up.


Oreo laid right on top off Tess during a PT session. She was done letting her girl be moved all around.



She also does not like it when anyone goes to lift Tess, especially if she is not super familiar with who is doing the lifting. She stays right there until Tess is safely put back down. Oreo gets very upset if we close Tess's bedroom doors (like to change her) and she cannot get in. She will scratch at the door and whimper until she is let in and can see Tess. If we bring Tess into the bathroom, Oreo follows and will lay down and wait until we bring Tess out.

One morning Oreo was laying on the floor in the kitchen while Ellie ate her breakfast and Tess was in her bedroom still in bed. Tess likes to wave her arms around sometimes when she is lying down and Oreo must have seen them out of the corner of her eye because she scrambled to her feet and ran in to check on Tess (it probably looked like Tess could have been seizing to Oreo), and when she saw that Tess was fine, she came back out into the kitchen. It's really amazing just how aware of Tess that Oreo is all of the time.


look at Tessie smiling at her dog!

and look at the two of them looking at each other during the photo...so cute!

We've only had Oreo for two and a half months and I already couldn't imagine our home without her. And just like all our other girls, she basically has the hubs wrapped around her little...well...paw.

To be honest, she has all of us wrapped around her little paw.

our newest princess




Wednesday, April 9, 2014

Keeping my mouth shut

This was what I posted on my FB wall two days ago:


"This literally just happened to me while waiting for the Music Box Theater to open their doors for Pippin in NYC the other night. This total stranger, an older man, starts telling "epileptic jokes" to me, Ellie and our two friends. The ones that start with, "What do you call a salad tossed by an epileptic.... along with a few other equally distasteful ones involving seizures. Now, anyone who knows me knows that I can have a pretty off color sense of humor but this was just crossing the line. I came very close to telling him a joke of my own:
"What do you call an old man who tells epilepsy jokes? A corpse", (because I am going to kill you in about two seconds).
Lucky for him I chose to take the high road and just disengaged because I was ready to tear him to shreds!"





I got several comments about how surprised they were I didn't tell this guy where to go and how to get there; especially from my friends and family who know me so well and were shocked that I kept my mouth shut.

The reason I chose to not confront this guy is a little complicated. First of all, we were in a VERY crowded theater on Broadway on a Saturday night and I was with my middle daughter, Ellie, her best friend, Hannah, and my best friend, Kellie (who also just happens to be Hannah's mom).  Second, we were there in the first place because this was sort of a big trip for Ellie. We had just come from "Admitted Students Day" at the college of her choice and were now in the City for the night to take in a Broadway Show. Pretty exciting stuff for a kid from a small island who will soon be heading off to NYC for college. In other words this was Ellie's time and I didn't want to ruin it by getting into a heated discussion with a total stranger right before the doors opened to the show and ruin everyone's evening.

Now make no mistake about it, if Tess had been there and this guy had been telling those "jokes", I would have left him with a very clear understanding of my feelings on the subject and Tess would know that, once again like always, mama had her back. However, there are some instances where keeping quiet and letting something go is the best way to handle it. Tess wasn't there but Ellie and our friends were, and I didn't want one man's ignorance to throw a shadow over the fun weekend that we had been experiencing. That's how I felt that night and I how I still feel when I look back on it. It showed Ellie that she is important as well and that I chose to put her evening's happiness ahead of my own need to want to tear this man apart. I know she would have totally supported me and understood if I had given this man a piece of my mind, and so would our friends, but I think everyone was happier going into that show with no angry words left hanging in the air.

Now I need to backtrack a bit. Earlier that day while riding on the Staten Island Ferry on our way back into the city, I saw a man with a little boy, probably ten or eleven years old. This boy was having a complete meltdown. Pulling on his dad, hitting him, yelling at him, and even at one point, nearly throwing his dad down the stairs because he was trying so hard to get away from him. I noticed the other passenger's stares at this duo. Some wore looks of obvious disgust that the dad wasn't making his son "behave", others were curious and still others, like me, probably recognized what was really happening.

The little boy had special needs.

Many of the behaviors the little boy was displaying made me think that possibly he had some form of Autism. Flapping hands, refusal to make eye contact with anyone; even his dad. Walking on tip-toes, and the constant thrashing of his body as if trying not only to get away from his dad, but even himself. As for the dad, he would calmly try to redirect his son and never once yelled or got too physical.

I was unsure of what to do. I knew I had Tess's Ipad with me and gave a momentary consideration to offering it to the dad for his son to play with. Then I wondered if being approached by a total stranger would be too overwhelming for the boy and escalate what was happening.

As I was debating with myself over whether or not to ask if I could help in any way, another woman started telling the boy to, "Stop being mean to your daddy. Stop being a bad boy. Be a good boy." My heart broke for this dad who was just trying to get thru the ride and was now being passive-aggressively told that he should be disciplining his child by a stranger and that since he clearly wasn't going to do it, then she would.

Ugh.

Immediately after that the man redirected his son to a different area of the boat. He never got angry with the woman who had so very clearly misjudged the situation and lectured his son. He simply chose to keep his mouth shut and move on.

Maybe that is what inspired me to keep my mouth shut later that night? Maybe not. But I do know this, I don't regret keeping quiet with the man at the theater, but I sure do regret not saying something encouraging, or even just kind, to the struggling dad on the Staten Island Ferry.

I know there are many days when I feel very grateful when someone tells me that I'm a good mom. This guy was a good dad. I should have told him so.













Monday, March 10, 2014

Spine, Lungs and Poop, Oh My!

So last week was Tess's appointments with Orthopedics and the Aerodigestive Clinic at Boston Children's Hospital. It was also our first real trip with Oreo.

Overall things went pretty well. Oreo was a dream. She had a couple of days of some pretty long periods of just having to lay down and wait and she did it like a champ. Even when kids came over to play with her, or crawl on her as the case may be. At one point, a little girl had accidentally stepped on Oreo's tail and Oreo never even flinched. A lady in the waiting room, who had been watching remarked on it and I went on to say that, yes, Oreo was a good girl, especially given that she had just turned a year old two weeks ago. The lady then removed her glasses in shock, looked over at us and said, "Now that is a GOOD DOG! I thought she was like a week away from retirement based on how well behaved she is!", which of course was very nice to hear.


Oreo chillin' in the waiting room. See that shadow to the left? That's a little girl on her tail. :)


Next we moved into the little exam rooms to wait for the Pulmonary and GI doctors who were part of the Aerodigestive Clinic. The rooms are tiny so we had Oreo go in first and put her in a DOWN. Then we had Tess's wheelchair right in front of her. The Pulmonologist saw Oreo right away and remarked how cool it was for Tess to have her. We then proceeded to discuss all of the issues Tess has been having with her lungs and not once during that time did I have to speak to Oreo.  After she left the GI doctor came in and we all talked for about a half an hour. When it was time to leave, Charlie got the wheelchair and I grabbed Oreo's leash and said, "HEEL". The doctor did a double take and told us he had no idea that a dog had been in the room the whole time. That is how good Oreo can be. Of course I later remarked to the hubby that the doctor probably thought it was us that smelled like dog the whole time he was talking to us up until he finally realized an actual dog was in the room.

The hospital had a place where I could take Oreo out to go to the bathroom but the hotel, oh the hotel, nary a speck of grass or dirt to be found! What was a girl to do?! I ended up taking Oreo out to the sidewalk and tried desperately to coax her into peeing in the teeny, tiny patch of mulch that circled around the trees on the sidewalk. And considering that everyone who saw her stared at us with a look of "awwww" when they saw the service dog vest, I knew whatever she did we were going to have an audience for. I was completely stressed out. Oreo tried, God love her, but she didn't quite hit that mulch and suffice it to say, there was a puddle left on the sidewalk that I couldn't get away from fast enough.

By the next morning I had come up with a new plan. I would sneak her into the hotel's parking garage to do her business in an empty parking space. It was a good plan except for when anyone would enter the garage. I would dart out of that empty space and pretend to be leisurely walking the dog from "my" car. When the coast would clear, we would start all over again. I felt like a criminal! Like I was trying to score some crack or something. My heart would leap in my chest whenever I heard voices or a car's engine coming my way and I must admit to even ducking down between vehicles at one point in order to hide while screeching at Oreo, "DOWN!".  The dog finally peed and I raced out of there like my ass was on fire! But she still hadn't pooped and there was no way I was going to take her into the hospital later that day with unattended business waiting to happen at any minute.

Cut to another parking garage, this time Children Hospital's, about four hours later and about one hour until it was time for the appointment. In other words, GO TIME. Literally and figuratively. I grabbed Oreo and snuck over to yet another empty parking space and all but begged her to GO POTTY! Bless her little doggy heart, she did. Sweet relief for both of us.

At the Ortho appointment I had to finally fess up to Dr. M that despite the fact that he was looking at an xray of Tess in her scoli brace taken not an hour earlier, I was not putting it on her at home. Ever. I then appealed to him as a dad, not a doctor. I spoke of quality of life versus quantity and of how miserable Tess was in that brace and that, ultimately, I couldn't, and wouldn't, force her to live like that. I told him she had enough battles to fight in her life and this, in my opinion, was not one worth fighting for and that if it was his baby, would he make him wear it given all the reasons (there were more than I've written here) Tess hated it? He said to throw the brace out. He did give me other instructions on PT therapies and stretches we would need to do if she was not going to wear it but that no, if she was that miserable in it than it just wasn't worth it. Hallelujah!

The next day was the Aerodigestive Clinic which would tell us all about her lungs. I can't say I was too surprised (although still bummed) when the doctor confirmed that yes, Tess's lungs had become damaged from all of the pneumonias and pneumonitis that she has had. It explained why her oxygen requirement has increased so much the past year or so. She went on to say that in "kids like Tess", this is also the age that their lungs start to show the wear and tear they have taken. She explained that while she wouldn't be able to get Tess's lungs back to what they were like even a few year's ago, she could hopefully give us a new daily regimen that would help them a lot and at least get them working better than they have been lately. Next she asked us if we had plenty of nursing help. I wondered why she was asking and she told us that this new regimen was a lot of work and many families admit they can't do it all because it is so time consuming and pretty intense. We insisted that with or without nurses, give us everything and anything that would help Tess breather better and we would do it. Gratefully.

I am here to tell you, she wasn't lying when she said it was a lot of work. Twice a day we have to give Tess 2 breathing treatments via her nebulizer which take about 25-30 minutes or more, then she has to have her chest therapy vest for 20 minutes, then her inhaler. Then a separate inhaled medicine at some other point in the day. Everyday. And this is when she is well. It will get ramped up when she gets sick.  And this does not include all the seizure meds that she gets three times a day. So yes, it's pretty intense but I can only imagine how much harder it is on Tess and she doesn't even cry. She just takes it like so many other things in her life. And her ability to just keep going helps keep it all in perspective for me as well. Because if she can have it done to her, than I can at least make sure it gets done, even when it feels like I have just finished and it is time to start all over again and all I am doing is giving medicine. And let's face it, though it does take up a bulk of the day when totaled, it certainly isn't ALL day so I can just get over it already! ;)

I recently made the remark to someone that Tess is truly a child of modern medicine. It also helps that she has one of the most positive spirits I've ever met. She's a fighter....in the best possible way.





Wednesday, March 5, 2014

The R-Word

Today is National Spread the Word to End the Word day. A campaign that Special Olympics started to try to end the misuse of the word, "retarded".

Let me start off by saying that I am guilty of using this word in a derogatory manner in the past. Very guilty. Am I proud of that? Certainly not, however, I tell you this so you know that when I ask you to please stop using the "R-Word", you can rest assured it is not coming from a place of judgement but of awareness of how much it can hurt to hear it be thrown about in casual conversations.

I am here to tell  you it hurts.  A lot. And I got the lesson taught to me the hard way. By giving birth to a gorgeous baby girl who would grow up to see the words "Mentally Retarded" written into ALL of her medical records.

There really is no way to explain what hearing someone who says that word makes me feel. But suffice it to say, it is a pain that shoots straight to the heart and lodges there. Because when you, I, or anyone uses that word as an adjective in any way, it is a direct insult to Tess.

Most often the defense used by people who say it is to not be so sensitive because you aren't saying it specifically to, or about,  anyone with an intellectual disability so why should I be offended? And I know that no, of course you're not talking specifically about any one person when you use that word.

Except you are.

You're talking about my daughter. My baby who has fought more battles in her short life than you will, hopefully, ever have to fight in yours. You're talking about Tess. And in the cruelest possible way because she cannot speak up to defend herself against your attack.

This isn't about people being too sensitive. This isn't a freedom of speech issue. This is about common decency mixed with, oftentimes, ignorance of how cruel that word really is to so many of us who have loved ones with intellectual disability.

 The reality is, Tess just lives her life giving out unconditional love and acceptance and asking nothing more than that in return other than you to respect that she deserves better than to see her disability used as the butt of your joke or rude comment. Seems like a pretty fair deal to me.

So I am asking you, the next time you or a friend do something stupid or silly and are "just joking" when you say something along the lines of, "You're so retarded" or "Stop being such a retard" or anything similar to that, I want you to ask yourself, would you say, "You're so Tess." or, "Stop being such a Tess." to describe whatever it is you're talking about?

Because ultimately, it's the same thing and she deserves better than that. Everyone does.