Saturday, March 14, 2015

You gotta have Faith...

So it's pretty obvious that I haven't written a post in a while. Whenever I think about it, I just go blank. I guess you could call it "writer's block" but what I think it really is, is fear.

I have always tried to be honest here when telling about my travels with Tessie, but I also never really put myself totally out there. I tend to try to soften up the harder stories with a small joke or some other way to prove that everything was okay even when I was not necessarily feeling okay. I'm not sure who I was protecting by doing that? Blake and Ellie, maybe, since I know they read this blog. My family perhaps. Or maybe, just maybe, myself. And since I am of the belief that, to paraphrase from the Bible, Where Faith exists, Fear cannot,  I am going to take a leap of faith and put my fear out there for all to see in the hopes that the grip it is holding on me will lessen, even just a little bit. I think in order for me to write any more Tessie stories, I need to get past this one. To basically drag it up from the dark where I have been trying to shove it and shine a great big light on it.

Fair warning, this is a bummer of a post. Nary a funny in site. With that said, here goes nothing.

About a month or so ago, the hubby and I met with the Palliative Care nurse at Maine Medical Center. We had a very good talk with her and agreed that the best thing we could do for ourselves and for Tess was to fill out an Advanced Directive for Tess. This would basically be a written document that we would carry with us whenever Tess was in the hospital to remind us of the decisions we would want to make in regards to her care should things get very scary like they did this past October.  It is recommended that parents do this so they are not forced to make some of the hardest decisions of their lives in the middle of a crisis when they aren't thinking with their rationale brain, they are operating in a state of fear and panic and, let's face it, that's no time to make life and death decisions if it can be avoided.

At any rate, we left that meeting feeling pretty good about making that decision. I thought it would be a very emotional meeting and turns out, it was almost comforting to know we had that support system in place.

Then the Advanced Directive paperwork arrived in the mail.

This is what was staring at me:




It looks so deceivingly happy, doesn't it? And in pediatrics, the Advanced Directive is called My Wishes. It is designed to help kids who are mentally able and know that they are dying, to have some sort of control over it all. And while Tess is mentally one smart cookie, she obviously cannot answer any of these questions which leaves it up to Charlie and me to do. To answer, for our daughter, how she would like to die. Where would she like to die? What comforts her? What are her favorite things to have with her when she is dying?

My hands are sweaty, my heart is pounding and my eyes are watery just typing that sentence.

 But where Faith exists, Fear cannot.

HOW are we supposed to answer that?! HOW does a parent answer how their child should die? This seems like cruel and unusual punishment. This is NOT what I ever in a million years thought I would be doing for one of my kids and this sure as hell is not what I signed up for when I wanted to be a mom.

 But where Faith exists, Fear cannot.

So I put it right back in the big manila envelope that it came in and haven't looked at it again until tonight.

 But where Faith exists, Fear cannot.

It is just too overwhelming. By writing those answers in it feels so much more REAL. Like I am acknowledging that I know Tess is going to die. That I know she will never get better, only sicker and more fragile, as she gets older and in reality, we have no idea what "older" even means. One more bad pneumonia could be the thing that kills her. One bad seizure.

But where Faith exists, Fear cannot.

To top that scary pile of crap with even more scary crap, she will be getting spinal surgery and will have a tough recovery with a post-op pneumonia that is nearly a guarantee. But to not get her the surgery will also mean putting her life at risk because her lungs are so compromised from her scoliosis. There is no win-win here. Just scary and scarier.  And I live in a nearly constant state of fear over her health. Was that a sneeze? Did she just cough? Why is the dog acting so bizarre around Tess? Is she having a seizure now? Did she just get bath water into her mouth and aspirate into her lungs? The Fear is ever present. Almost omnipresent. And that is NOT how I want to spend my time with Tess or my hubby, or my two other girls, or anyone else for that matter. I'm sure I sound totally neurotic and I will admit, I'm a little nervous to put all of this out for everyone to know about me but, I think, if I don't get it out then I don't stand a chance of beating it.

But where Faith exists, Fear cannot.

Then there are times when I just look over at Tess as she has her little hands clasped together and a big smile on her face while watching her favorite movie and all I can think is, "Time! I need more time!", which I know is very dramatic because it's not like I even know how much time she does have. So I try to think like a rational human being and tell myself to stop borrowing trouble that isn't even here. Then I try very, very hard not to think about how I'll be if/when she dies. But I'll think it anyway because it's always there, lurking like a dark cloud that is hanging over my head that I can't ever seem to run away from. When I mention it to family members, I'm all stoic and brave because I fear, if I let even a small chink in the armor show, it is all going to go crumbling down around me and I will just fall apart. I often wonder, can someone's heart literally break? I'm starting to believe that it can.

But where Faith exists, Fear cannot.

And that F***ing Advanced Directive. I hate it. I hate it, I hate it, I hate it, yet I know we have to get up the courage to fill it out. Because I know I have to face this. WE have to find the strength and courage to fill this out for Tess. She deserves it.

And where Faith exists, Fear cannot.

I don't know how long we have Tess, and I am not expecting a miracle as far as her health goes. I understand what is happening to her little body each time she gets sick and even if I didn't, the term neuromuscular respiratory failure would be enough to give me a pretty good idea. But here's the thing, I am not expecting a miracle, not because I don't believe in them, but because I know we've already gotten our miracle... in Tess.

Tess is a miracle. There's no doubt in my mind about that.

And where Faith exists, fear cannot.

So screw you, Fear.


Tuesday, January 27, 2015

It's been a year...

How can it already have been a year since we made our unforgettable trek to Xenia, Ohio to give Tess her Make a Wish for a service dog?

I have sat here today, listening to the "epic" blizzard, Juno, rage outside and remembering every bit of that trip and those twelve days we spent in training at 4Paws for Ability.

I remember the exact moment Oreo was brought by her main 4Paws trainer, Shelby, over to be introduced to Tess and the excitement and yes, even anxiety at having to learn about and take care of such a special dog.


just look at Tess's smile...you can barely see Oreo over on the left but Tess was so happy



Oreo on her first alert to Tess right out of the gate


I have been "talking" on Facebook today with our other classmates who, I believe, are basically feeling all the same emotions that I am. The words we are all saying the most often are, "Grateful" and "Blessed".

It is hard to explain the connection that I felt, and still feel to a group of people I have known, in person at least, for only twelve days. Suffice it to say, they all "got" it. Got the fear, the sleepless nights, the constant worry, and the feeling of helplessness that comes with having a child with a disability. It didn't matter what the disability was, whether it be epilepsy in an otherwise typically developing child, or Autism, or Down Syndrome, or like Tess, a whole host of multiple and severe disabilities. They all just understood. There wasn't pity. There wasn't judgment. It was more of a feeling of support, encouragement and a whole lot of hope. A "we're all in this together" mentality that I have never felt before or since. And I have to admit, I miss that feeling. I miss them.

I often wonder if 4Paws really can fully grasp the impact they make in people's lives with the work they are doing with their dogs. I cannot imagine our house without Oreo in it. I have come to depend on her as a second set of eyes on Tess. And I know that she often knows Tess may be getting ready to have a seizure or getting sick hours before I can see the warning signs. This is invaluable help to have, especially when you have a kiddo like Tess who can go from a cold to pneumonia in a matter of hours so every minute quite literally counts. Oreo helps me to get an early jump on big trouble. Can you imagine the sense of relief and comfort that provides?

For example, just the other night, Tess's oxygen alarm was going off repeatedly because the sensor wasn't working properly. I finally told Charlie (because we had been taking turns getting up with her trying to fix it and it was his turn again) to just turn off the machine because Oreo was with her and would let us know if Tess needed our help. I have never turned off her oxygen monitor. Ever. But Oreo was there and I didn't even worry about it. Just went right back to sleep confidant in the knowledge that Oreo would watch over Tess.

I am still amazed by the level of trust I have in her instincts where Tess is concerned.

But Oreo has also alerted on other people and been right on the money. Poor Ellie got alerted on big time one night over Christmas break to the point where she only half jokingly asked me if she was going to die because Oreo just kept pawing at her and whimpering and wouldn't stop no matter where Ellie went. Cut to five hours later and Ellie was very ill with what we think was food poisoning. Oreo knew.

And my cousin, who has seizures, was here the other day and Oreo alerted on her. When I questioned whether or not she had taken her meds that morning, she looked over at me sort of shocked and replied, "No, I kind of forgot." Needless to say she jumped up and took them.

Oreo can be a naughty little girl at home sometimes but boy, she sure does make up for it when it really counts.

So, as hard as it is to believe, it's been a year since we met our 4Paws "Family" and our adventures with Oreo began. So much has happened and even during the bad times, Oreo has made our lives better.


one of the absolute worst days ever but Oreo wouldn't leave her girl's side


Oreo has been the best Wish because all of our dreams and hopes for Tess that went into that wish have come true.

Grateful and Blessed.

Pretty awesome words to sum up a year, wouldn't you say? :)

BFF's









Thursday, January 8, 2015

You just can't make this stuff up....

Yesterday our post lady brought in a registered letter that needed a signature because it was OFFICIAL. Naturally I was curious because, let's face it, I don't even get out of the house on a daily basis much less get into enough trouble to require an OFFICIAL letter.

But alas, even when I think there isn't much left with Tess that can shock me, boom, a letter from our home health agency managed to do just that.

Our HHA, who provides our in home nursing, just kicked Tess to the curb due to "lack of staffing".

Did you get that? They can't find a nurse to come out here, and apparently placing adds is just too much for them to handle, so they sent me a letter basically telling me they won't help us any more. But let's keep in mind that they are all about the kids.

*snort*.

And it's even more ridiculous considering Tess now has a palliative care team being set up because she has been deemed medically fragile enough for us to need that extra support.

Awesome.

Oh, and bonus, Tess will most likely be having yet another major surgery sometime this year to correct her spine.  This is a surgery that both Charlie and I have had major reservations about because of how big a surgery it is and how invasive it is added to the fact that she had a very scary post op pneumonia from her bilateral hip surgery and has gotten even more fragile since then.  And in all honestly, we are scared to death that by agreeing to it we are going to harm more than help her which begs the obvious question,

So why put her through it?

We have finally come to the place where we know that basing decisions about Tess's health on fear rather than facts is just not fair to her. We have discussed and discussed all of the benefits vs. risks and are finally at a place where we can see just how much she really does need this surgery. At this point, her scoliosis is literally compressing her left lung making it a lot harder for her to fight pneumonias when she does get them. And guess which lung she almost aways gets them in? Ding. Ding. Ding. You got it. The left one. The scoliosis is also making her right rib cage sort of pop out in the back making her appear hunchbacked. It also is making it very difficult for her to do things with her body (think PT and OT) because she is spending precious energy simply trying to keep her torso and head up.

So spinal surgery is probably imminent. And I am scared to death. Not going to lie about that. As I told the doctor, I feel like I cannot make a "right" decision because if she gets the surgery, and, God forbid, she dies either during surgery or from a post-op pneumonia (which she WILL get), then I effectively killed her by letting them do the surgery, but if I let fear be my guide and don't let her have the surgery because I am scared and she dies from a pneumonia that she could have potentially fought off if she had had the surgery, then I effectively killed her by not letting her have the surgery.

A damned if you do and damned if you don't scenario that is literally life threatening either way.

But God love the doctor who very bluntly told me that I was thinking about it backwards. He told me that instead of saying that there is no "right" answer, that I needed to rethink it as there is no "wrong" answer because whatever we chose for her, we would do it out of love and what we thought was the best for her and you can't be wrong when you are doing something like that out of love.

And so, with that in mind, and refusing to let fear be my guide, surgery it is because I feel in my mother's heart, we are not doing right by her to continue to let her spine curve and compromise her health more and more.

I realize I keep saying "I" but Charlie and I are a team, and we are in this together and, after many long talks, and yes, arguments because we are scared, and getting angry feels better than feeling scared, we are in agreement.

So, long, rambling story short, there is, as always, a lot going on here at Casa de Reidy.

And right this moment, this is exactly how I feel: ;)

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.  ;)