Thursday, July 24, 2014

Party at Casa de Reidy...

My dad turned 67 a couple of days ago.


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.


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.

Saturday, April 19, 2014

Oreo...she's quite a cookie

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

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

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

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

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

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

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

And now for the good news.

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

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

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

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

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

look at Tessie smiling at her dog!

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

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

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

our newest princess

Wednesday, April 9, 2014

Keeping my mouth shut

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

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

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

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

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

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

The little boy had special needs.

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

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

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


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

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

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

Thursday, March 13, 2014

Tough Decisions

At the beginning of January, after a very long and sickly month of December,  I made the very tough decision to pull Tess out of school. Most likely permanently.


After fighting so hard to finally get the school on board with getting her the things she needed and having an IEP in place that I was so happy with, I am throwing in the towel. And no, not because the school has done anything wrong or has even put up a stink over anything this past year. Actually, the opposite is true. The school has been more than fair to Tess this year and for the first time since she started going to school almost 5 years ago, the school was doing their part to ensure she got the education and services she deserved.

No, I am pulling her out for two very simple reasons:

She HATES going to school.

I am not willing to risk the daily exposure to so many germs when her health is so fragile.

A cold, stomach bug, or the flu, that would most likely make your child miserable for a few days to a week, would put Tess in the hospital in Special Care. The flu could very easily kill her. I just can't rationalize it any longer.

With Tess, we often discuss "benefit vs risk" when it comes to doing anything. Long story short, the benefits of her going to school no longer outweigh the risks. Especially given how very much Tess hates going.

I had to have a very hard and real conversation with, well, myself, about whether or not I could accept it if Tess did catch something from being in school and it ultimately was the one thing she could just no longer fight and we lost her.

Turns out, I couldn't accept it. Not at all.

We don't have a time limit when it comes to Tess's life expectancy. What we do know is that every year, she tends to get sicker. She spends more time in hospitals. We know that her lungs are damaged and that she requires oxygen at night just to sleep on a fairly regular basis now. We know that she has seizures and that they are life threatening. We know that when a child is under stress, like for example being in an environment that they hate, such as school, that their immune system is weaker and their seizure threshold is lower. We know that putting Tess in an environment where germs are a constant presence could literally be life threatening for her. We hope and pray she lives for another forty years but the reality is, she is not getting stronger as she gets older; she has been getting weaker.

And ultimately, Tess deserves to be happy. I have come to the place of acceptance where I will decide if the quality of her life is worth risking the quantity. In other words, if she absolutely loves something then I would try to suck up my fears and let her do that thing, trusting that the quality of her life was enriched by something she loved even if it affected the quantity (number of years) of her life. School does not enrich her life simply because she does not enjoy being there. She is happiest when she is home and surrounded by her things,  and her family and now, her dog.

When you think about what you most want for your child, you would probably answer that you want them to be happy and healthy and to feel loved.

Me too. And if and when the time comes that Tess doesn't recover from that pneumonia or that seizure, I need to know in my heart that she knew I fought everyday to make sure she was happy, healthy and loved. That I always put her needs in front of my fears. That I listened to her and what she was telling me she wanted in her life.

Well, for a while now she has been telling me that she doesn't like school and wants to stay home.

Okay kid, you got it.