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. :)



Monday, September 1, 2014

School Daze...

School starts tomorrow, but not for Tess and I'm sitting here trying to figure out what is best for her and what her "school" year should look like and let me tell you, it's not easy.

I pulled her out last year due to the fact that she does not enjoy being there as well as the fact that she is medically fragile and just can't handle all of the germs. I thought I was good with that decision but now that Ellie is away for college and Blake will be off in a few days for her European Adventure, I can't help but wonder if Tess would be better of with at least a little outside interaction. I honestly just don't know the right thing to do and it is gut-wrenching to have to be the one who makes the decision.

I do know that if I end up sending her to school, it will be VERY limited. Basically a music class here (because she does love music) and a gym class there (in order to get to "play" with other kids somehow).  I still need to have her formal IEP meeting to hash out all of the details. I think the school will be receptive and I am hopeful that if we limit the amount of time she is there, she will actually enjoy it rather than scowl, throw her head down and force herself to go to sleep.

There is also the new addition of her motorized wheelchair. I want the other kids to see Tess make it go (or at least that she is capable of learning to make it go). I think it is important for them to see that she CAN understand and do things if given the chance. That she really is just a kid like them but who has to do things differently. When I mentioned how Tess works her chair to my niece, Drey, her eyes got pretty big and she seemed quite impressed and surprised that Tess could do it. I think Tess will surprise a lot of the kids and have a chance to show off, so to speak, and be really proud of herself in the process. To me, that's huge.

Then there is the "Oreo" factor. I am hoping that Oreo being with her (assuming the school is on board-they were going to be last year before I pulled her out so I am thinking positively) will entice more kids to interact with her and know that, even though she isn't verbally talking to them, she IS taking in everything they are doing and saying and is trying to "talk" back in her own way. That the fact that they take the time just to say "Hi, Tess" and stop for a quick second to acknowledge her and Oreo is a big deal to her even if it doesn't seem like it based on her reaction.

For years I have talked to the school about starting some sort of "buddy" program with Tess with the kids from elementary right thru to High School but nothing has ever come of it...sort of like the outdoor swing for the playground so she could play with the other kids during recess that was supposed to be installed BEFORE she started Kindergarten SIX years ago and has yet to materialize.

But I digress.

This year, I am going to MAKE the buddy program happen (as long as the other kids are willing. I'm not after forcing anyone to be a part of it) and I believe that it will benefit the other kids as much as it will Tess. At least, that's my hope.

So, yeah...I guess I'm just writing this all out to clear my head and put my thoughts in some sort of order.

 I must confess however, that I HATE the beginning of the school year because it is another punch in the gut of how very different the things are that I am dealing with compared to most other parents.  And yes, I do feel a little sorry for myself. Just for a minute. I'll get over it. I always do.

And besides, how could anyone feel sorry for themselves when they look at this cute, happy face?


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.  Please feel free to share! :)














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.