Wednesday, June 3, 2020

No "Right" Decision...

I debated about whether or not to share what's been going on the past couple of weeks on this blog but I feel like, especially for those in my VH Community that have supported us with our decision to bring Tess to Scarborough to attend the Morrison Center for school, this is the place to put it on the table.

Long story short...

We're bringing Tess home. At least for this year.

The backstory begins and ends with Covid-19. Stupid, dumb, scary, life altering, life threatening covid-19.

The Morrison Center opened their school up this week to students again. They operate all year long due to the high needs of their students and they're a very small school so can more easily put into practice CDC guidelines for maintaining health and safety for their students. And it was my intention to send Tess this week when they opened back up.

Then Tess and I had a tele-health visit with her pulmonologist who works at Maine Med and just so happens to also be working with covid patients. When I mentioned to him that Tess's school was reopening, his facial reaction betrayed him before he could even say anything. I could tell he was very surprised to hear this (not a good surprise) and when I went on to ask if he thought it was okay for Tess to return to school if all the CDC guidelines were in place, his immediate response was a very emphatic, NO.

NO, it was not a good idea to have Tess return to school. NO, there was no way to make it safe enough for her and NO, he will most likely not be supporting her returning to school any time in the near future...including in the Fall.

He went on to show me statistics and charts of how covid is trending in the country, in the state, and even in each county and what he expected to come given what information he had.

Honestly, I had become a little numb to the covid fear and had even convinced myself that Tess should return to school so she could have some normalcy in her life again. This "safer at home" lifestyle is not really new to us, but the level it has reached is, and Tess has had some negative effects from it. Increased anxiety and increased severity of seizure activity to name a couple. Not to mention she's not getting in person therapies; it's all done by us now with online guidance from her therapists. For those reasons, I had convinced myself that maybe it would be okay to send her and that the benefits might outweigh the risks given heightened safety measures the school was taking.

Speaking with the doctor was basically the same as having cold water splashed on my face. It woke me up. I was no longer numb to the fear. It became crystal clear that Tess's risk for getting covid was so high that there was no way that the benefits of going back to school outweighed the risks.

I thought about continuing distance learning and realized that I could also do that from home and not just here in Scarborough, so I asked the doctor if he thought I should just keep on keeping on here until it was safe for her to finally get back to school in person and where she is close to the hospital and all of her medical care, or, if I should take her home to Vinalhaven where the likelihood of her catching the virus would drop dramatically but she was farther from the major medical help she sometimes requires.  Honestly, I was expecting him to say stay in Scarborough.

He didn't.

He said he thought we should take her home to Vinalhaven and get her out of Cumberland County where her risk for covid is comparatively so much higher. I then asked him about Tess catching the virus on the island vs. catching it in Scarborough where I could immediately get her to Maine Med. He said that this virus would most likely be so devastating to Tess that he felt very sure it wouldn't make any difference where she caught it, the outcome would be the same no matter what... and that outcome would be terrible. He felt like Tess's best chance to survive the virus would be to take her where we can keep her more isolated and safe. "Take her home" were is exact words.

He wasn't filled with alarm or fear or being dramatic in the slightest. In fact, he was very calm and even laughed and told me that if he could take his two healthy boys and go to VH, he'd be gone. He was only sort of joking. And that's what got me the most. His calmness and basically just, stating the facts ma'm, attitude.

Like I said, cold water on my face but the wakeup call I needed.

I talked to her home health nurses and another one of her specialists who all agreed that taking her out of Cumberland County and home to Vinalhaven was the best thing we could do for her given the information we have.

I've cried and prayed and gone back and forth and agonized about what the "right" decision is for Tess. She loses so much by not returning to school in person, and technically speaking, this is her Senior year and I wanted it to look a lot different for her. But, alas, I am not Queen of the Universe and cannot control a worldwide pandemic, so I will do the thing I always do when it comes to Tess, try to make the best choice for her and pray I don't make the wrong one.

Home Sweet Home it is then.

I've spoken with the Vinalhaven school and told them our plans. Tess will still be a student at Morrison but will continue with distance learning until we, and her doctors, feel like it's appropriate to return. And right now, there's no way to know when that will be.

Given that, even though we didn't have to, we've opted to terminate our lease early and give up our rental in Scarborough.  Sometimes, just because you can do something, in this case having the VH school continue to pay rent until we can come back with Tess, doesn't mean you should do it. You've got to be able to look at yourself in the mirror and know that what you're doing is something your conscience can live with. In this instance, ours couldn't live with continuing to have the school pay rent while we're on the island with no idea of when it will be safe to return to Scarborough.

My heart hurts for Tess and everything this move forces her to lose, but today, during her zoom speech therapy,  her therapist asked her if she was excited to be going back home to Vinalhaven and she immediately used her talker to say, "Yeah" multiple times which makes my heart hurt a little less.


And given how unbelievably homesick I've been the past few years,  if you asked me if I was excited to be going home to Vinalhaven I would say, "Yeah!" multiple times as well.

I don't know what Tess's future holds but we'll do what we always do and take it day by day and continue to hope that the decisions we are making for her are the "right" ones...even when it feels like there's no "right" one to be made.

In the meantime, look out VH, we're comin' home!



Tuesday, April 28, 2020

The Queen and the Little Prince

Well hello there! It's been a hot minute since I last wrote anything here but what better time than during a worldwide pandemic?!

There's a lot to get to, not the least of which is that two years ago this April, the hubs fell off our daughter's roof of the house he was building for her and broke three vertebrae in his neck and then the following April (last year), Tess was in the hospital fighting for her life with a superbug pneumonia and came so close to dying that the doctors came in on a Sunday to talk to us about what the coming week would look like and try to prepare us to say goodbye to her by the end of it.

Spoiler Alert for those of you who may still be readers but aren't family/friends of ours, she defied all odds and lived!!!

But since it's been so long since I've written anything, and let's face it, the world is a bit of a scary place right now,  let's leave the scary parts for another time and start with the good, shall we?

Good thing number one: Our eldest daughter, Blake, got married last March (2019) in Punta Cana and the hubs and I even managed to finagle our ever faithful She-She (nurse Sheila) into staying with Tess here at home so that we could go!

Huzzah!

It was a super fun trip and a good time was had by all. We spent about five days in gorgeous weather at a resort on the beach, and even went on a party catamaran to go snorkeling and meet up with other party people at a sandbar with a dj to dance and drink in the tropical waters.

Wedding party catamaran cruise.


Party Sandbar



Walking her down the aisle.



Found a way to have Tess be in the sisters photo!



So. much. fun.

Good news number two was when said daughter's hubby called me one evening in August to proudly inform me that I was going to become a grandmother in about nine months!

WHAAAAAAAAA??? I'm too young! I don't knit....or sew...or crochet...and I swear like a pirate. Not exactly grandmother material.

But I digress.

I was super excited and the time flew by and here's where it really gets good. We told Tessie she was going to be an Aunt! She was most appropriately impressed with this new status in life and confidently told us that Blake was having a girl whenever we asked her.

Turns out Tess is not the best prognosticator and at Blake's twenty week ultrasound, we broke the news to Tess that she was not having a niece, but rather a nephew! Wouldn't that be fun?!

Cut to Tess telling anyone and everyone (using her eye gaze communication device):

"I don't like that."

Well gee, kid, don't sugarcoat it.

Tess has spent the past four months repeatedly finding the button on her talker that says something along the lines of, "My sister Blake got married! I wore a pretty robe. I have some exciting news! I'm going to be an Auntie! Blake is going to have a baby boy.", then immediately going from that to the button that says, "I don't like it!".

When pressed about what she didn't like, it was confirmed that my little Queen did not want Blake to have a boy and steadfastly remained insistently sour about it for the rest of Blake's pregnancy. We figured that surely once the baby was born and she saw him, she would fall in line like the rest of us and just not be able to resist him and all his baby boy cuteness.

Dare to dream you daydream believer.

Gavin Charles made his grand entrance into the world late last week and it's safe to say that Tess had not changed her mind about not liking a boy.

Thankfully, Blake and Bobby were having the baby near where I am so decided to social distance with us here after discussing all of the island factors with her midwives so we have been so lucky to actually get to spend a little time with Gavin after he was born as well since they didn't want them going straight back to the island after he was born.

Naturally we're all madly in love and he is the most perfect, alert, strong, and smart baby in the history of the world and all the things that family's feel about their own babies that everyone else rolls their eyes at.

*Just to be clear, we're right though; He's perfection* ;)

I mean, come on. I just can't even. He's too perfect.. 
So alert. Such wisdom in those eyes. (I don't care who rolls their eyes and groans at my Mimi bragging ;) )




Then we made our way with him to Tess. She very grudgingly looked at him.

Yes, yes, there he is. I see him. Now take him and go!

Hoping I'll take him away.


We asked her if she wanted to hold him. She rolled her eyes.

We insistently put him in her arms (sort of) and to say she was unimpressed would be a gross understatement.

No. Just...no. 


No cute and heart meltingly perfect "Tess meeting her nephew" photos for this kid. Nope. No way. Not a chance. Get this kid away from me were the moments we managed to capture.

And when she saw Ellie, her Superlove holding him??!! The shade that kid threw could cool the nation.

What a proud Auntie should look like.


We hoped a good night's sleep might improve her...we'll just call it...attitude...about her nephew.

We are wonderfully dumb at times, aren't we?

By late the next afternoon there was a small thaw starting to happen. Her Superlove snuggled on the couch with her and then we tentatively had them both hold Gavin together and Tess even managed to smile.


Okay, well this isn't so bad maybe. 



Bump bada baaa!

And by the time Blake took him to her, a teensy bit of interest could be detected.


Honestly, Oreo has been way more interested in Baby G than Tess has.


Baby steps, people.

And this morning Blake took him in to see Tess, aka Aunt T, while she was still in her happy place, otherwise known as her bed, and Tess let him lie next to her and even looked at him and smiled!

Aunt T and Baby G. 


Well yee haw, cowboy!

When my dad and Ann called and I told them about Tess's attitude towards her perfect little nephew, my dad summed it up best when he said, "She knows she's not the queen anymore and doesn't like it."

Well, let's be real here, she still is the Queen but there's a new and very popular little Prince in town and she's not loving sharing the spotlight...especially with a BOY! Sheesh!

Long live the Queen...

Found a way to sneak in this pic of her epic Game of Thrones Mother of Dragons Halloween costume. 






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