Monday, December 10, 2012

Inspiration

It's easy to forget how good I have it. It's easy to get lost in the day to day grind; to let the fear, stress and poor-me's take over.

And then something comes along to remind me just how good life is if I only let myself see it. And if Tess has taught me anything, it is to appreciate the people I would have never given a second glance at before. To focus more on the "special" in special needs and not so much on the "needs".

Something like this:






And this:



And last but certainly not least, this:




And just like that, I know with all my heart, I am blessed.




Tuesday, November 20, 2012

Time

Lately I have been sort of obsessing over time. Or should I say, the counting of days, weeks and months.

Two weeks ago Sheila and I took Toodles to Boston Children's for some scheduled appointments. Scheduled. As in no surprises would take place because these were PLANNED appointments.

Remember what they say about the best laid plans?

Yeah.

She was scheduled to see the Gastroenterologist and something called CP. I assumed CP stood for cerebral palsy which is what kiddos like Tessie, who have no known diagnosis. generally end up being labelled with.

And we all know the saying about assuming anything, now don't we?

The GI doc was very nice and we had a good appointment. She did want a couple of xrays taken to check out Toodle's belly but still, not a big deal.  We agreed she would review the xrays later and pending any terrible findings, we would see her again in two months.

The next day we had the CP appointment. The waiting room was quite busy and one mom told me that it wasn't uncommon to wait hours for a scheduled appointment. I am here to tell you, that lady wasn't lying. We waited nearly two hours to see the doctor. The appointment was for 9:30 and we saw the doc at around 11:25. At one point I even told Sheila that I thought we should just leave. After all, this was just an appointment to be told that my kid had CP. I know my kid has CP (not really though considering what she really has is genetic and has never been seen before in anyone else, thus the CP diagnosis).  But still, something told me to wait. So we waited. And waited and waited.

When we finally got to see the doctor, lo and behold, he was an Orthopedic Surgeon whose specialty was dealing with kids with CP. Well, huh. That was a tad unexpected. Still, I though it was good because Tess was overdue to see and orthopedist. He looked her all over, asked me some questions and then sent us for...can you guess? Yup, more xrays. Two of her hips and two of her spine. Back to radiology we went. Afterwards we went back into his office so he could talk to us about the results. And I still had no clue anything was amiss. Just blissfully unaware that he was about to punch me in the gut.

He was showing me the xrays of her hips and was talking away about how her hips were coming out of the joint and bone was rubbing on bone and she most likely had pain and would have more pain from it and if something wasn't done soon then we would miss our window to fully repair them and on and on...

Then it hit me. He was trying to tell me that Tess needed surgery. Major surgery. On both hips. Soon.

I lost it. I just started bawling in front of this poor doctor who had known me all of about fifteen minutes. I apologized for falling apart and I swear to God, this doctor got choked up. His eyes got all watery and he had to keep clearing his throat and his face was all red as he was saying to me, "I suddenly have a tickle in my throat." As a mom, this made me love him. I just knew that he got it. He understood and sympathized with me. Once I pulled myself somewhat together, he told me that he would suggest getting the surgery done sometime within the next six months. In the meantime, he would get together his "team" that would be in the operating room and then meet with us again in about three months, go over everything, and set a firm date for the surgery. He also warned me that the recovery time of this particular surgery is about a year from start to finish. Six months until she would act like herself again and six more months until deemed "fully recovered." Gulp.

So we left the hospital to head home and we had just gotten on Rt 1 in Boston when my cell rang. It was the GI doc. The radiologist who read Tessie's xrays just happened to see the very bottom of her left lung in one of them and it looked like she was developing a pneumonia. They recommended we take Tess to her pediatrician as soon as we got back to Maine.

And the hits just keep on coming.

By the time we got back to Sheila's house it was too late to do anything except get ready for bed. I did talk to Jen on the island since it seemed like she should be in the loop given the fact that she is our island doc and, naturally, got crying while telling her. The next morning we took Tess in to see Dr. Stephenson and while discussing everything we had learned in Boston, I started crying again. He assured me that he would be more worried if I didn't show any emotion after hearing that my daughter needed major surgery. He also said, and this is just another reason why he is awesome, that if weeping mothers bothered him then he was in the wrong profession!

After looking Tessie over and not finding anything to suggest she was coming down with a pneumonia, he still agreed to treat her proactively as a precaution because Boston had really felt like she was developing one. We started her on antibiotics that day.

The next morning she spiked a fever and was sick. Quite sick. Still, I figured that the meds just hadn't had a chance to kick in and I brought her home. For about sixteen hours.

The following morning her fever, which had thankfully gone down the night before so I assumed (there's that word again) that the antibiotics were working, was back even higher than it had been. I called Sheila who called the pediatrician and we were ordered to get back to the mainland pronto and he would meet us at the ER.

At the ER the doc added a second, stronger antibiotic and let us go home to Sheila's with some fairly strict instructions which included definitely NOT GOING BACK TO THE ISLAND. He debated about just admitting her then and there but I basically asked him not to since she was still able to maintain her oxygen levels so well and we had Sheila to help us. Plus, we thought the second antibiotic would do the trick. Needless to say, it didn't. Two antibiotics and they weren't even touching the pneumonia.


Things were getting a bit scary.

She was admitted into Special Care less than 36 hours later and ended up needing to be given oxygen for about 24 hours. Her pediatrician consulted with her Complex Care pediatrician at Children's and, as fate would have it, that doctor has just done a six month study on something called pneumonitis and thought that was what Tess had based on xrays and her symptoms. She suggested a specific course of IV antibiotics and Dr. Stephenson adapted his treatment of Tess accordingly. Like he said, "When the person who actually conducted and wrote the study suggests the best way to treat the patient, you do it."


Tess still got a little worse before she finally turned the corner and myself, Sheila, and even Dr. Stephenson were getting nervous. He later told me that he had discussed with her Boston doc about a plan B treatment if it became necessary but thankfully, plan A worked. Tess spent 3 days in Special Care and once she could maintain her oxygen levels herself, she was moved to a regular room for two more days. She spent a total of five days in the hospital and two more days after that going back in for IV infusions before being allowed to come home. She is still on antibiotics for another seven days while I am on pins and needles waiting to see if she really is going to stay on the road to recovery or decide to throw me a curveball and start to get worse again. I was told that the recovery period for this type of pneumonia is about six weeks.

Six weeks... six months...a year...who knew that time could be such a scary thing?

Thursday, November 15, 2012

How I became a Farmer

I'm not sure if you've heard the news but it's pretty big. And I do mean big.

I just bought a farm.

Yes, you read that correctly. I, Joanna Reidy, am now a farmer.

It's a pretty good size farm too. I have long horn cows, horses, goats, sheep, chickens and bunny rabbits. I'm considering getting a baby turkey to raise since it's almost Thanksgiving but I'm on the fence about it (a little farmer's humor for ya, "on the fence").

My animals keep me pretty busy. Tending livestock is no joke.  My chickens are free range because that is very important for the quality and health of the eggs they will produce as mentioned in this blog post by my friend and fellow blogger, Tracy. Plus, I make my own feed directly from vegetables I've harvested from my garden so it's all organic.

I like to make my own dairy products as well. Cheeses, milk, buttermilk, etc. all made right on my farm, all by me. I sell them at the local farmer's market stand.

Running a farm single handedly can be quite tough some days. Running all over the acres and acres of farmland, feeding and watering my animals, working in the garden, and, in my spare time, going to my friend's farms to lend a hand can be exhausting.


I took some photos of my new farm for you to enjoy. I think you'll find it quite informative. So without further ado, I give you...



                           


                         REIDY FARMS









The sign as you enter the farm.





     An ariel view of the farm.




   Phew! Farming is hard work. Just look at this photo of me literally wiping the sweat from my brow!



 Buy organic and buy local!





 Catching a little shut eye in the stable for a few minutes.


So obviously, aside from the link to Tracy's blog, this whole post is a joke and my attempt at 1) trying to cope with the boredom of sitting in a hospital for almost a week and 2) making my ridiculous FARMVILLE playing on Facebook seem light and funny instead of lame and pathetic. I mean, let's face it, a grown woman pretending to be a farmer on a virtual farm is not exactly awe inspiring. And I will admit, when it shows up on my Facebook Timeline I cringe in embarrassment. Yet I'm still farming playing.

I think Ellie said it best when she caught saw me playing and said, "Farmville? Really, mom?"

Yes, really.
;)

Thursday, November 1, 2012

Yabba Dabba yell a lot at everyone to get this thing made!

Another Halloween has come and gone.

Phew!

In the words of Ellie, "Tessie's costume is probably the most awesome one any of us ever had!"

My response? "Yes, Ellie, it's only too bad that you all couldn't have had wheelchairs so you could have had such awesome costumes too."

Score one for mom. Or not. You know, because Ellie wasn't being whiny about it, she just loved Tessie's costume. I can't help it though, it is in my nature to be a wise a$$.

Ellie was right however. This costume ROCKED. Well, Bedrocked. You see, this year my Toodle Bug was dressed as Pebbles Flintstone! "What's so great about that?", you might be wondering. Why, I'm glad you asked.  The great part was that we made Tessie's wheelchair into one of the Flintstone's cars.

Of course, in typical Reidy, aka Griswold,  fashion, we had a few bumps in the getting-ready-for-Halloween road.

Tessie and I had gotten out of Dodge when Hurricane Sandy blew through and were waiting out the storm safe and snug on the mainland. I really wasn't sure if we would even get home for Halloween but I knew if we did, this is what I wanted for Tessie to dress up as. I did already have the costume and, in a fit of unusual preparedness, had even already purchased the materials needed for the canvas roof and granite looking tires. However, they were all sitting in a pile in Tessie's bedroom.

So Halloween morning I called to check in with the hubby and to let him know that yes, in fact I will brave the ferry boat and come home and oh by the way, did I mention that you need to make Tessie a Flintstone's car for her wheelchair? Oh, I didn't? My bad. But we really will need it done when we get off the ferry because we'll only have about an hour to pull it all together. Did I leave you directions? Well...no. It only needs a wood frame, you're a carpenter, you've got wood everywhere! But make sure it looks Flinstone-y and good, and fits her chair and....

When we got home I'll be honest. I may have become a tad bit hysterical and possibly been yelling at everyone in my path to GET BUSY! The house was a wreck, Tessie needed to be dressed in her costume, and the car, while framed up, still wasn't totally finished.

Poor Charlie, Ellie and Bina. They were looking at me like I had just sprouted three heads. "Stop standing around! Come on! Pick up! Bina, start making wheels for the car! Ellie, sweep the entry floor! Charlie this car needs to be fixed! You made this part too long! String?!! Do I have any string?!?! No, I do not have string, WHY would I have string?! Bina, cover the steering wheel in duct tape! Oh really, Charlie?! So you don't think duct tape is very Flintstone-y. Well it is if it is CHEETAH print duct tape so HA! Yes, this has a hole in the back of the canvas! The Flintstones had a hole in the back of THEIR canvas roof! Ellie, why are you just standing around?! DO something!! Well, how about help me with this wig! TESSIE!!!! You have GOT to stop throwing your head to the side!"

And on and on it went. At one point Bina actually grabbed me by the shoulders and said, "JoJo, you have got to calm down!", or something along those lines. It's really all a blur.

But when all was said and done, and my blood pressure had dropped back down to somewhere near normal, we had managed to pull together the best costume of HALLOWEEN ever!

Charlie, Ellie, Bina and I proudly present......




PEBBLES FLINTSTONE!

But wait, here's a video...and in typical diva fashion, Tess is clearly not nearly as impressed as we all were...Yabba Dabba Doo!

Tuesday, October 16, 2012

I am a special needs mom

I am a special needs mom. A mom who knows about:

Watching the weather closer than most weathermen and then trying to make the decision of whether or not it is safe to keep your child home when the weather turns nasty because you live on an island and the closest hospital is over an hour away by ferry. If it's running.

Having your child be on that ferry, in the middle of the bay, and stop breathing because she is having seizure after seizure after seizure.

Racing up to the local medical center only to leave by ambulance and be taken to the airport and flown off the island because your child is too sick to wait for the ferry.

Alarms screaming in the dead of night to wake you from a not so sound sleep because let's face it, there hasn't been a good night's sleep in so long you don't even remember what it feels like to wake up really rested.

Immediately having your heart racing as you check the video monitor to look at your child. The alarm continues to blare as you try to see, from your bed, is it just that there isn't a good connection because she is wiggling, or is she not breathing well? Is she having a seizure?

Dragging yourself out of bed for the third or fourth time and standing beside your child as they look at you with eyes begging to "help" them yet they can't tell you what's wrong. Their breathing is jagged and their motions are jerky but try as hard as you can, you just can't figure out the problem. Stroking them and telling them you love them with tears in your eyes because you feel so helpless and a parent's number one job is to help their child.

Some days not being able to shower because you don't dare to leave her alone long enough to have one.

Not being able to go out of the house whenever you want or need to because you can't manage you child on your own because they have gotten too big and oh, yeah, your back is in constant pain.

Fighting for all the things the law says your child is entitled to but the people in power don't want to give her because it costs money. From schools to insurance companies to the State you live; all fighting you because of a dollar.

Having to explain every detail of your life to a stranger on the phone to justify why your child deserves to continue to receive certain benefits. Like home health care. Or a wheelchair.

Changing diapers on a little girl who isn't so little anymore. Who will soon be going through puberty and all that that entails.

Always having to be sure you never run out of life saving medications. And oh my God, there are so, so many medications to keep track of.

Mixing up those meds three times a day.

Carrying a "jump bag" everywhere you go that is filled with emergency meds and oxygen and actually being more concerned about that at any given time then where your pocketbook might be.

Thinking you're going to an appointment only to end up in an ER and then more often than not, end up admitted for at least a few days into the hospital.

Being able to work the hospital monitors that your child is hooked up to so you don't have to call for the nurse, again, to do it for you when the alarms sound.

Speaking with primary care doctors so often that they give you their pager and home phone numbers to keep "just in case" something should come up and they're not on call.

Having to pick out wheelchairs, lifts, tub chairs, and handicapped vans.

The "friends" you see the most often are your child's nurses, therapists and special ed teachers.

Becoming close enough with the people at the companies who provide all their equipment and feeding needs to joke and laugh with them on the phone and just chat for fifteen minutes or so to "catch up".

Trying to juggle the needs of your other kids with that if your special needs one. Always knowing you could be doing better at it.

Leaving your child in Special Care without you (but with someone they are close to so they won't feel alone) because another one of your kids has a big part in the school play and if you miss it, that's it. You won't get to see it again.

Worrying about the very real possibility that you could miss seeing your daughter's graduation from high school because your special needs child might get sick/have a seizure/be too loud to stay in the auditorium or any one of a hundred little reasons that could come up.

Having a nurse come into your home one day because your child has finally gotten "sick enough" that even the State realized that a normal parent cannot be expected to do this alone and then coming to think of that nurse as a family member. A sister. A fellow soldier in the fight to keep your child alive. A security blanket. A life line. Someone who makes it possible for you to not only stay for your daughter's high school graduation and not miss a minute of it but actually be able to relax and enjoy it.

And above all, the constant fear of, is this it? Is this the time the seizure/infection/disease wins and you will lose her for good. And then the realization that all of the above amounts to diddly squat when you think of what it means if you never have to do any of it again.

So, yes, I am a special needs mom. And grateful to be one.


Friday, October 5, 2012

The sniff test

About two weeks ago the hubby was giving Tessie a bath when I noticed that the little piece of gauze that we put around her Gtube button looked, well, gross. Now I know you're probably thinking that something that goes around a Gtube button and into a stoma in the belly would probably look gross normally, but you would be wrong. As a general rule of thumb, those little gauze pieces come off just as white as they went on with maybe a formula dribble on them if anything.

I was looking at blood. And something a tad greenish. Um, yeah....

I immediately thought, "Oh, no...it's an infection in her Gtube site", which can be very yucky if left untreated and make my little Toodle Bug quite the sick girl. She has had only one Gtube infection in nearly five years and that was almost right after the surgery to put it in so really, we had done an awesome job of keeping the site infection free and, all of her doctors, from Rockland to Boston would always comment on how great her stoma looked, making me beam with maternal pride and just a bit of smugness that I was so adept at Gtube maintenance.

It's the little things, people. Don't judge me.

Alas, it seemed as though my perfect record was over. But how to know for sure? I mean, the evidence thus far was purely circumstantial. A piece of gauze with just a little bit of dried blood on it and something with a greenish hue. Pretty convincing stuff but still it left room for doubt.

When it comes to Tessie, I do not leave room for doubt whenever possible.

So I did something that in hindsight, I can see, might seem a bit beyond the pale. Might disgust some. Might even make the more sensitive types (Hello Charlie) want to vomit.

I sniffed it.

Oh yeah. I grabbed that nasty, bloody gauze, lifted it to my nose and inhaled.

Behind me I was hearing, "Oh my God! That is frickin' disgusting! OH MY GOD!" *insert fake puking sounds here*  from the hubby.

When my vision cleared and I could think past the overwhelming, putrid stench emanating from that little piece of material, I marched right up to him and lifting that gauze like a woman on a mission said, "SMELL IT!"

Now many people won't admit this but the reality is, when you find a smell as heinous as the one I held in  my hands, your natural, almost primal, response is to want to share it. It's almost like you need someone else to validate how unbelievably gross it is. In a weird way, there is a certain thrill to bringing the putrid object to another person and watching as they back away in horror while shaking their heads and shrieking, "Get that thing the hell away from me!"   This was just like that but with vile, infected, bodily fluids.

I know.  Disgusting. But you need to understand how very, very nasty the situation was while at the same time the extreme pleasure I took in absolutely freaking Charlie out by taunting him with it. "SMELL IT, SMELL IT!"

Like I said, it's the little things.

At any rate, I deduced that her Gtube was most definitely infected and was not at all sure how to handle it on a Sunday night. So I slapped some triple antibiotic ointment on it, a fresh piece of gauze (the better to taunt you with, my dear) and called Sheila.

She agreed with my diagnosis based on my sniff test and suggested I get The Toots an appointment with her pediatrician when the office opened in the morning. So of course, by the next morning Tess was good and sick, Fever of 102 which I believe was from the infection but she had also come down with a bad respiratory virus so really, it could have just been a combination of everything.

I got Tessie to the mainland and when asked by her doc why did I think her Gtube was infected, I'll confess, I was quite hesitant to tell him what had actually transpired to lead me to that conclusion.

After a minute or so of babbling some nonsense about bloody gauze strips I just stopped, looked him dead in the eye and said, "I'm really embarrassed to tell you this because I'm sure you'll be as grossed out as Charlie was but the reason I know it is infected is because I smelled the gauze and then her stoma and only something that is infected can smell like that."

He never even batted an eye as he replied, "Well, how else would you be able to tell?"

Reason number one million and one why I love Tessie's pediatrician.









Tuesday, September 18, 2012

How do you spell Stress? IEP.

I haven't blogged in a while. Nothing like stating the obvious, is there?

I have been in a sort of funk where Tessie is concerned. Nothing seems all that funny or blog worthy.

The biggest reason for my blah state has a lot to do with stress. Some days I feel like all I am is Tessie's personal secretary. The kid could really use one. I have spoken with Children's Hospital 3 times in the last two days, taken her to see her pediatrician, called in prescriptions to get refilled, gotten a new wheelchair in the works, finally gotten her weaned off the Keteogenic Diet after nearly 7 weeks of beating myself up over whether or not I was making a huge mistake in even doing it, talked to more doctor's receptionists, spoken with the awesome lady who makes sure Tess eats every month at New England Life Care, talked with our home health agency about Tessie's next medical review which is already due again to see if the State will see fit to continue to provide home health care for her, then of course there are the seizures that refuse to just go away, and last, but not least by any stretch, emailed the school about the upcoming school year for Tess....and subsequently called a lawyer.

Sigh.

I won't go into all the gory and depressing details since I am not sure even now where things stand with the school.  I do know they broke the law as far as providing Tess with what she was supposed to be receiving under the guidelines of her IEP (Individualized Education Plan as mandated by Federal Law) and when I tried to approach the school administration to help fix it, I was lied to about certain aspects of the law, given very questionable excuses as to why her IEP was out of compliance and basically told they had gone above and beyond what they were legally required to do for her.

Thank God I took a Special Education Law course a couple of years ago. I know my rights and I know Tessie's and I am here to tell you they picked the wrong girl to try to bully.

But even so, it is very depressing to be fighting with the school district that you grew up going to. To realize that the people in your own community elected to serve on the school board, whom, most, you have known your whole life, won't return a phone call or email so that you can tell them the reasons why you're upset even though the Superintendent had told me he had asked them not to.  Don't get me wrong, I understand that as soon as the word "lawyer" comes into play it is a whole different game and certainly would not expect anyone to say anything that could jeopardize the school's position, but I will admit, I thought they would at least want to know why it had reached such a level. That they would have enough empathy and quite frankly, sense of loyalty to another islander to at least call me and ask me what was going on?!

The silence from them was deafening. And saddening. After about two weeks I did get one quick response from a member who had enough compassion to let me know why they weren't talking with me.

So now, here we are. Tess hasn't been going to school since the first day when I sent her just to prove how they actually were not providing her even the most basic requirements, forget "above and beyond".  I cried like a baby when she went that morning because I knew they weren't ready for her but had to let her go so they could see it for themselves. She has since been receiving some home instruction from the school and the new elementary Special Ed teacher has been a god send.

I am not sure how things will unfold.  I am just hopeful for a good resolution. One in that we can all work together to do what is best for Tess. Without lawyers needing to be involved. Right now, I am not sure. It's pretty much all that is on my mind though.

Did I mention the stress? Yeah, this has been a nightmare.  And it is one of the only times I have ever felt like an outsider in my own town.

And that sucks.

Thursday, August 30, 2012

A Frugal Girls Fail

This is a pre-Tessie post. Pre-Blake and Ellie. Hell, even pre-being a grown up in a way.

I was married and had moved into the house that my hubby had built with his own two hands, which, as fate would have it, was right next door to my best friend and her husband.

We thought were so grown up. So married. So ready to have kids. So going to have the perfect houses, cars and lives. So everything that comes with twenty-one year olds getting married.

In other words, so delusional.

But I digress. When my best friend struggled to conceive a baby which eventually led to adoption, I was there cheering her on. And when the day finally came that she brought her daughter home, I was so thrilled for her.

I also may have made a few "prank" phone calls to her house that summer when the breeze was just right and I could hear her baby crying through the open windows. Something along the lines of, "Can't you shut that kid up" then hanging up the phone and laughing at my own hilarity comes to mind but who really remembers the minutia from so many years ago?

It was also around this time that my bestie and I concocted the brilliant plan of becoming the best housewives, and for her, mother, in the world because we had decided together, without the hubbies even being made privy to it, that we needed to tighten the old purse straps. Stop trying to keep up with the Joneses (which was really each other), live within our means, become the frugal girls we knew in our hearts we were destined to be. How happy we would make our hubbies! How proud would they be to tell other men of their frugal little wives when other's cried out in distress at their wive's frivolous spending habits. The plan had no downside! What could go wrong?

The day the bubblegum pink stroller arrived it was as if the angels had descended from Heaven and were singing especially for us. There even seemed to be a special glow surrounding that fabulous pink stroller. It was probably God smiling down in all His infinite Glory and letting us know how awesome that  stroller was and how awesome my friend was for not falling into the trap of buying a quality expensive item like the Emmaljunga carriages all the other women were wasting their money on for their babies. No sir. She was a good wife. A frugal wife. And her little baby would do just fine in a stroller that cost three hundred dollars less than those fancy schmancy ones.

This isn't the exact one but imagine some swivel wheels on it and it's pretty dang close


We decided to take the little bundle of joy in the bubblegum pink stroller out for a nice walk. It was a gorgeous spring day and we were in high spirits as we set off from the driveway of my house.

We got about fifteen feet when something seemed a bit amiss with the stroller. It wasn't going straight.  It kept wanting to veer off to the left. We reasoned that it was because those cheesy small, plastic wheels could not get good traction on the bumpy, gravelly road.

We went about another ten feet when I realized the problem was not the tires. Well it was, but one that could be very easily and quickly remedied. You just had to push down on the tire lock so they would stay straight and not swivel all around thus making pushing the stroller an act of total frustration and anguish.

I did not tell the bestie of my discovery. No...I let her struggle with that stroller for about another fifty feet before I became alarmed that she might actually flip the baby out of it. By this point she had the stroller facing in the opposite direction of the wheels so that it was sort of crab walking sideways as she tried with all her strength not to let it slip off into the ditch. And she might have been swearing. And sweating. Profusely on both counts.

For my part, I was laughing like a loon. We are talking hysterical, bend-over-hold-your-knees-and-cry kind of laughter. Until one wheel started to lurch off into said ditch and I thought for a split second, "I may have let this go on a little too long for my own amusement."

I quickly grabbed the stroller and bent down and locked in the wheels. She was overjoyed and I was pretty much her hero until I confessed that I had discovered that little secret trick a ways back. To her credit, she let me continue walking with them and even laughed herself once she stopped being mad at me.

She stuck with that piece of shit longer than any person could reasonably be expected. The stroller too. *badumbum*

The pretty, forest green Emmaljunga carriage arrived about a month later.



The hubbies were none the wiser at our failed attempts at being frugal.

Monday, August 13, 2012

TV Connoisseur

I love television.

 Love. It.

I love the distraction it provides, the entertainment, heck, sometimes I have it on simply for background noise as I read a book. It runs constantly in my house. Silence is definitely not considered golden around here.

Except for the hubby. He dislikes the TV. Really dislikes it in fact. He would very happily live without a TV in the house and has even gone so far as to hint at getting rid of it. And by hint, I mean loudly state how sick he is of it and if it were up to him, it would be gone.

It's like he is speaking in tongues. I just don't understand him.

I mean, NOT watch reruns of Friends, Will& Grace, The King of Queens, Wings or my beloved Little House on the Prairie?!?!?



No Real Housewives of....(pick a city; for me it's New Jersey and New York), no The Voice, Glee, Barefoot Contessa, or Dance Moms?!?!?

No movies that you have seen a hundred times already but are much more exciting and special because they are airing on television?!?!?

You're talking crazy!

I cannot even begin to fathom a world without my "precious", um, I mean TV.

Then there is the fact that I am literally stuck home when I am alone with Tessie. Which, let's face it, is often and while you may be thinking, "There are plenty of things she can do at home other than watch TV.", hear me out.

I am not a crafty girl. I can knit a scarf as long as you don't want any semblance of a design in it or I can whip out a mighty fine dishrag, though again, it is literally a knitted square with no hint of  style. And holes, you must overlook the inevitable holes that will end up somewhere in there. I cannot sew. I do own a sewing machine because I had really great intentions of learning how to sew but alas, not for me. I don't paint, scrapbook or take amazing photographs. I do buy all the necessary equipment to be able to do all of these things because in my heart I am an awesome crafter just bursting with creativity but the reality is, the money would have been better spent on, oh, I don't know, food or bills or something not very fun or crafty such as that.

And thanks to chronic back pain, I don't tend to go all crazy with the house cleaning as it only ends up leaving me in miserable pain. Besides, that's why I have Blake and Ellie. *snicker*

I'm a pretty good cook, that is when I can get to the store to buy the groceries, but it is hard to go into the kitchen and leave Tess is in the other room where I can't see her. Tess must be watched constantly. "CONSTANT VIGILANCE!" (see, a handy dandy quote from a little movie called Harry Potter which was on TV all weekend). As in, barely able to leave her to go to the bathroom. And showers? If I am home alone with Tessie, forget it. Too big a risk to leave her alone so I wait for someone else to be in the house to sit with her. Sometimes I am forced to risk it and leave her alone in order to shower but as a general rule, the anxiety this gives me just isn't worth it.

Also, I need the distraction that these shows provide in order to get out of my head and the constant worries over all things Tessie related. And trust me when I tell you, in the dead quiet is when those worries start to really take root. Nobody benefits if that happens.

So that leaves reading and television. In truth I tend to prefer a good book but don't always have one on hand so TV it is.

Plus, when you watch a lot of TV, you are always ready with a kick ass comeback line for any situation that may befall you. Like the line I used above from Harry Potter. But wait, there's more...

Ran out of gas on the freeway? Perfect response might be from Oh Brother Where Art Thou: "Damn, we're in a tight spot!"

                                                  damn, they're in a tight spot!

Dropping in on friends for the night but don't want to appear to be too needy? You could always come up with that winning line from Christmas Vacation: "We didn't come to impose."

                                               They didn't come to impose.....


Sick of someone always butting into your business with their unsolicited advice? "Get a hobby!" spoken to Jill by Bethenny on Real Housewives of New York would shut them up in a hurry.

                                                  She needs to get a hobby!


Or when something unexpected happens you can whip out, "Oh for Heaven's sakes!" in the same voice as Harriet Olson on Little House on the Prairie. (You totally just did that in her voice, didn't you?)

                                                       Oh for Heaven's sakes!



So, really, TV is helpful on many levels.

Yes, I could be called a couch potato. I prefer to call it a TV Connoisseur.


Friday, July 27, 2012

Rescue 911

It was the Sunday that we left Rangeley. We had appointments at Boston Children's Hospital scheduled for Tessie over a three day span so we decided to book a room on rt1 in Saugus so that we could be close to the hospital. So much more convenient and all that.

It was around 11:30pm and in my dream there was this weird snorting noise. You know how, when real life noises pervade our dreams, we can make them just be a part of that dream? Well, that was and wasn't happening. I can remember that I kept trying to make that sound fit into my dream but I just couldn't.

Something was wrong. Even in my dream, I knew that.                                                          

So I woke up and still could hear that odd snorting noise. I lay there for maybe thirty seconds before it hit me that I did know what that noise was. Tessie made that noise sometimes during a seizure.

I sat up and looked at the heart/O2 monitor and her heart rate was 172.

Shit.

"Charlie! Wake up!', I yelled as I ran to get the oxygen to give to Tessie.

We did the usual but it was really hard to decide when to give the emergency meds. After all, we had no idea when the seizure actually started. How long had my poor Toodle Bug laid there, all alone, thrashing in her bed, before her parents realized what was happening? Ugh, that question really, really haunts me.

At any rate, we did the best we could and after our timing of nine minutes she stopped. I knew right then that we had missed at least three to five minutes of the seizure because she almost always seizes for  twelve minutes or more.

I comforted myself with the knowledge that at least I had woken up in time to help her and that it was over now and she was okay.

Or so I thought.

After about a minute and a half, she started seizing again. Hard. I gave more meds, the most I could safely give her without compromising her breathing, and waited.

She finally stopped again after about another nine minutes.

Charlie and I breathed a very shaky sigh of relief.

Then, after about forty seconds, she started seizing again.

What the hell was happening?

I knew we still had a small window of time before we had to get really scared so I waited. And it felt like I waited forever.

When we were nearing the twenty-five minute mark I told Charlie, "I'm scared. I'm calling Sheila. I know she is asleep and I don't care. I'm waking her up."

So I called Sheila, quickly brought her up to speed and told her Tess had had probably seven or more seizures in the past twenty-five minutes and was still continuing to go in and out of them. She promptly told me to either call 911 or get on the phone to the Complex Care physician at Children's. She was really pushing for me to call 911 though.

So naturally I opted to call Children's. It seemed so overly dramatic to call 911. Or perhaps I was just in total denial of how bad off Tess really was.

The doc very quickly told me to hang up and call 911 and tell them to take her to Children's (I know, hadn't a certain home health care nurse just told me that very thing?). They would be ready for her in the ER.

So I did the thing that I have managed to avoid for nine years. I called 911. It was a surreal experience. I felt like I was on a TV show. I made myself speak slowly and calmly, remembering from watching shows where people did call 911, how imperative it was to be in control so that they could quickly get the information needed to dispatch out the ambulance. (God, sometimes I really impress myself...or maybe I just watch way too much television. Whatever.) The operator asked me if I needed him to stay on the line until paramedics arrived. I said no, I could handle it until they got there. Plus, let's be honest, I was in my PJ's for pity sake and no way was I going to the hospital like that! I need to change, comb my hair and brush my teeth. Priorities people!!

The paramedics arrived very promptly complete with fire trucks. Lights were flashing and sirens were wailing and it was the middle of the damn night in a hotel full of people. And people do love to stare, don't they?

We had the door open so the paramedics could come right in and you know what?

Tess had finally stopped seizing. Naturally.

I apologized to the paramedics for causing such a fuss but they very quickly reassured me that they were extremely happy Tess had stopped but she was still going to the hospital because she had seized for about thirty minutes and if she started again, I couldn't help her. She would need drugs that would very likely compromise her breathing and thus needed to be in a place that could help her breathe if it came down to it.

Okey dokey then. Let's roll.

I climbed in the back of the ambulance while Charlie hopped in the van to meet us there. They got Tessie all settled and did her vitals then we hit the road. They turned on the lights and even whooped the siren a few times. And I must confess, that part was sort of cool.

I know, I know....pathetic.

At any rate, they were waiting for us in the ER and she had chest xrays and belly xrays and was diagnosed with pneumonia and, after six hours in the ER, she was taken to the Complex Care floor and admitted into a room where she stayed for two days and then released.


This isn't actually a photo from this past adventure. Just think of it as a replay.


She has had may med changes in the hopes of getting some control over those stupid seizures. It has been about 11 days since that night and since she has had a seizure. Are the meds working? Maybe. God knows I hope so.

                                         
   Tessie feels my pain. Or at least pretends to. Or maybe she is lamenting the fact she got stuck with such a crazy mom. It's anyone's guess really.
                                

But I have to say, I am scared to be out here on this island, and most likely home alone when she does have another seizure. The what if's are bouncing around my brain like ping pong balls. Plus, let's face it, another winter is coming and I can't help feeling like we are tempting fate by trying to keep a medically fragile child on this godforsaken island when bad weather does strike. Our options are few and the potential problems are many.

Oh well, no one ever said it would be easy. Worth it, for sure. But definitely not easy.

Thursday, July 26, 2012

Well isn't that Pinteresting

This isn't a real post. Just some random snatches of things I found, mostly on Pinterest, when I typed in "special needs."

Some days I really need the reminder that other people are going through it too.

Mostly, I just need to remind myself that I am doing the best I can.

And what can I say, some days I do better than others.








This one is from a special needs blogger. Her blog is Love that Max and can be found at www.lovethatmax.com

And now I'm bringing sexy back to special needs (was it ever there to begin with?).  Well, with a little help from some awesome special needs Ryan Gosling memes.




You. are. welcome.

Tuesday, July 10, 2012

Hello seizures my old friend

If you haven't already guessed from the title of this post, the Toodle Bug's seizures are back with a vengeance.

Or at least, that is what it feels like.

Not that they ever were gone mind you. Oh no. THAT would be just to easy. No, she has had them all along but they have been semi-controlled through her Ketogenic diet and anti-convulsion meds. By "semi-controlled" I mean that she had a seizure at least once a day on average but I didn't really count it unless I needed to intervene with emergency meds which meant the seizure needed to last at least five minutes. The ones I don't count, in fact I will actually call them "fake seizures" even though they are very, very real, last probably a minute and a half to three minutes at most. Her "bad ones" were happening about once every two and a half to three weeks. Now to some people this may seem like not  a long period of time but trust me, this was considered "controlled" in Tessie's world.

Those ones always last a minimum of eleven minutes with about a minute break, then she will seize again for about a minute and a half then have a break of a minute or two, then seize again for a minute or so before finally stopping because the meds have kicked in which means, added all together, she will have seized for around 15 minutes. And no, I don't wait for eleven minutes to administer rescue meds. At five minutes Tessie get 7.5 mg of Diastat (valium) and at ten minutes she gets a 1 mg does of clonazepam. Trust me when I tell you, this is enough medicine to put you and I under the table for about a week but right now, it barely is controlling her seizures when she is having them. I also give her oxygen as soon as she starts having a seizure to keep her O2 stats up. There have been a few times when she has stopped breathing during a seizure, but luckily, this is not the norm for Tessie.

I take my silver linings where I can find them.

The Toodle Bug takes 22 pills a day to help control her seizures. You did not read that wrong. TWENTY TWO per day. And that is NOT counting when she needs the rescue meds. Sigh.

Anyway, as I was saying, she was doing quite well for a while, but the last couple of months things have started to change. I don't know why, which is extremely frustrating.

And then, about a week ago, she had a seizure where I swear to God, I though she was dying in front of my eyes. This is not an exaggeration. I had never seen her do some of the things she was doing during that seizure. It scared about 10 years off of my life and poor Ellie Belle was right there trying to help me which meant I had to at least pretend not to think she was dying.

I am not that good of an actress. I did tell Ellie that Tess was scaring me and then basically lost my composure completely.

I freaked out to the point where I called her pediatrician, in the middle of the seizure, got his receptionist on the phone and pretty much screeched at her to get Dr. Stephenson on the phone NOW because I was so scared.

He promptly picked up and in an extra calm voice, in what I am pretty sure now was an attempt to try to calm me down, got me to tell him what I was seeing. Thankfully he did not join me in my own little hysteria party and asked some basic questions starting with, "Is she blue anywhere? Is she breathing?",
at which point it donned on me that, why yes, yes she was. Okay then.  Deep (and very shaky) breath for me.

Dr. Stephenson stayed on the phone with me for the remainder of the seizure to make sure she came out of it all the while going over plan B to me should she not.

She seized non-stop for eighteen minutes.

Ellie sat with Tess the whole time and when Tess finally stopped, Ellie stayed right there with her until Tess wore out and fell asleep from all the meds and the toll the seizure had taken on her poor little body.

That was not a good day.

Nor were the next couple of days after that, at least for Tess, because the seizures and meds are so hard on her that it takes days to recover and right now at least, she no more than gets a day or two of feeling good again when she gets hit by another one. It is awful to watch my giggly, happy girl want to sleep all the time and when she actually is awake, is so spaced out that she could care less what is going on around her. We all will practically dance on our heads just to get a smile out of her.

And the reality is, I am scared.  Scared of what this change could mean for her. Without a diagnosis we have nothing to hold on to, nowhere to look for guidance or to help us predict what comes next. We are flying blind and making up the rules as we go along and as her pediatrician likes to say, "Tessie does not like to play by the rules."

 Ain't it the truth?

We are taking her to Boston Children's Hospital next week for some appointments, one of which is with her epilepsy doctor. Charlie and I have decided it is time to stop the Ketogenic diet (which is overseen by this doctor) because it is just not working anymore and we are tired of never being able to give Tessie tastes of anything like ice cream, or popsicles or lollipops, etc not to mention having to be careful about what lotions we use on her, what wet wipes, even the sunblock and toothpaste have to be approved for the diet and when she needs antibiotics, which is frequently, they also had to be approved before she could get them. This diet requires CONSTANT VIGILANCE (as Mad Eye Moody would say...Harry Potter fans will totally get this reference). She will always need her feeding tube to provide her nutrition but will go back to regular formula instead of this specialized one we mix for her every day in the desperate attempt to help with her seizures.

As far as the seizures go, I am hoping that they can increase a med here or there to help get them back under some semblance of control.

In the meantime, life goes on and we are in Rangeley on vacation.

Of course no day goes by without at least one viewing of Toy Story 2 which, if I am being honest, can induce a seizure because she gets so excited. But just look at how happy it makes her. At some point, quality of life has to take priority. Plus, who could resist this face?



Tess had a small seizure this morning but stopped after three minutes. She slept the rest of the morning but had a pretty good afternoon and even dipped her feet into the lake and, yesterday, we took her bowling with all of us plus The Bean (natch), Jeff, Kris, Drey and Becca and my dad and Ann. She had fun and even managed to beat one of her big sisters.

Of course, what with being an Olympic Champion at bowling, are you surprised?

Me neither.


Sunday, June 24, 2012

Some days are really Fleeting

Today has been one such day. But perhaps not for the reason you may be thinking.

I had to give Tessie an enema today. You read that correctly. A Fleet's enema.

Oh. My. God.

The Toot's hasn't been feeling too hot lately and I think the culprit is her little belly. Of course, faced with a myriad of possibilities, and a child who can't talk,  you may wonder how I so skillfully managed to figure out the mystery.

Simple.

 I called  Nurse Sheila. (If I were an analogy word problem on the SAT's I would be written as such: Sheila is to Joanna as a security blanket is to Linus. Charlie tells me to stop bugging her at work. Whatever. Linus is never without his security blanket. Just sayin'.)

We discussed all of her symptoms; increased heart rate, increased seizures, sleeping a lot, and oh, yeah, not really, ahem, pooping all that much. Gross, I know.

We pulled out the usual bag of tricks but to no avail. Things were becoming desperate. It was at this point that Sheila and I decided that Tess needed an enema. Sheila has given her an enema before. She is a nurse, and while not her favorite thing to do, it really isn't a big deal to her. I was more than happy to let her deal with that situation at the time but here we were again and my faithful Sheila was an ocean away.

Sigh.

I very heroically did my duty as a mother. And Tess did her doodie too. Duty and doodie. Say them together. They sound very similar, don't they? Well I'm here to tell you, they aren't.

Sounds that should never be heard coming from a small child were reverberating out of The Toot's like buckshot. Noises that made the hubby and I stop and stare at each other in a near panicked state. He very unceremoniously dumped her on her bed and left me to deal with the outcome. Literally. Round one goes to Tess and Charlie.

 I don't even know why I am blogging about this of all things. My only excuse for even exposing you to this unbelievably disgusting event is that I think I am in shock from dealing with the aftermath that even now, two diapers for Tess and a pair of shorts change for Charlie later (he was holding her when round two hit which was extremely funny to me; him, not so much. Round two goes to Tess and Joanna), I fear is not over.

I will be approaching her tomorrow very much like a member of a bomb squad would when faced with an unknown package that could blow at any minute. Very delicately and with precision like movements.

For her part, The Toots is now very happy. The old saying, "happy as a pig in shit" instantly comes to mind (I know, lame. It was just too perfect to pass up though). And bonus, her heart rate is down.

I am hoping tomorrow will be a good day for us here at Casa de Reidy.

And God willing, it will not be FLEETing.





Friday, June 22, 2012

Let them (NOT) eat cake!

Yesterday was the Toodle Bug's 9th birthday. Typically her birthday can be a hard day for me but for many reasons, this year for the first time ever, it really wasn't.

Probably because I almost forgot it was her birthday. I know, right? Loser mom here.

In my defense, this month has been a whirlwind of one thing after another. Between Charlie's birthday (that was also nearly forgotten), Knowledge Quest at school, Baccalaureate, Senior Farewell, Graduation/Grand March and then, the day after graduation attending Blake's college orientation (this was also on Father's Day) and getting her off to Paris on her French Club trip, Tessie's birthday just sort of got away from me this year.

It was on Wednesday that it hit me that Tessie's birthday was the next day. I mean, it's not like I hadn't known it was coming. I had thought about it several times but never really did anything to prepare because I was busy trying to get through graduation and making sure everything was ready for that. But, when you live on an island, you need to be prepared. There is no place to get party goods at the last minute.

Whoopsies.

And to top off my loser mom status, I had no present ready or even thought of to give her. You are totally shaking your head in disgust right now, aren't you? It's okay, I am too.

Still, like any good magician, I managed to pull the rabbit out of the hat and give her a family party complete with balloons and things I had left around the house from the ghosts of birthdays past that looked festive as well as a token present from a local store that she actually really likes.

All in all it looked like I hadn't really forgotten. It wasn't up to my usual standard because I am a girl who likes parties to look coordinated and well thought out but at least you could tell it was a birthday party.

Okay, okay, this was a train wreck as far as giving a nine year old a party goes BUT there is one thing I very intentionally did this year that I have no regrets about. Zero. Nada. None.

I refused to make a birthday cake for her.

Now this may seem cruel and uncaring but hear me out. Tess cannot eat the cake. She cannot even lick the frosting (remember she is on a very specialized diet for her seizures that allows for NO sugar at all, plus the risk of her aspirating anything we might allow her to taste by mouth even if she wasn't on this diet). She would be forced to have the cake shoved in her face while we all sing to her and help her blow out the candles that she cannot actually blow out. Then we would whisk the cake away from her, all eat it in front of her, and not let her have any. Now to me, that is just cruel and unusual punishment.

So, no way, Jose'. Not this year. We all sang her Happy Birthday after she opened her presents and very quietly had brownies that she never even had to see.

And that is why, despite all the things I did wrong for her birthday, I can still feel okay about it in the end...

 because I did not let them eat cake!

Monday, May 7, 2012

An Olympic Scandal

Special Olympics Motto: Let me win, but if I cannot win, let me be brave in the attempt.

 We had another fun day at the Special Olympics Track & Field meet today. The sun was shining, the kids were smiling, and my little Toodle Bug emerged victorious once again. Yes, my friends, yet another blue ribbon to add to her growing collection. She also snagged a red (second place) ribbon but that was intentional (you, know, just to be clear and not because I care or anything).

In an extremely uncharacteristic move by yours truly, I made sure Ellie took a dive on the second race in order to let the other little girl win. And I actually felt good about it. Who knew losing could still feel like winning?
(Ellie and Tessie CLEARLY in first place)
(and pretty ding dang happy about it)

 We did hit one small snag that really tested the strength of my resolve to be a good sport this year. 


When the ribbons for the races were handed out, Tessie was mistakenly given two second place ribbons instead of one first place and one second place. I squirmed uncomfortably in the knowledge that Tessie was robbed but didn't want to repeat last year's performance of making a total arse of myself so I, very stoically I might add, stayed mum.

Well, I might have whined a bit to Charlie, Ellie and Sheila about it and the person in charge of the little boy who mistakenly got Tessie's ribbon had also noticed the error (as he had come in third) and asked me if I wanted to switch out the ribbons.
(Tess has obviously spotted this heinous error and is desperately trying to communicate to the person putting it on her that this is wrong)

It was an Olympic scandal of gargantuan proportions, let me tell you! You'll probably be reading about it tomorrow in the NY Times or Washington Post...or maybe just here.

 At any rate, I sucked up my my evil, take no prisoners, I need to win at all cost, attitude and told the nice lady that of course I would want him to keep the blue ribbon. Tess was fine with the, gulp, second place one. I might have broken out in a sweat at this point but even I couldn't stoop to ripping a ribbon off of a little boy's neck who was happily playing with it while sitting in his wheelchair.

 Charlie informed me it was Karma coming back at me, or maybe they had remembered my horrible performance from last year's event and wanted to make sure I knew what it felt like to lose. Oh wait, I'm sorry, I meant, come in second. I assured him I was fine with this unexpected, and might I add undeserved, turn of events.

We went off to cheer on another kid from our school. Because I am a good person and no, it was not driving me absolutely bonkers that Tess did not have a blue ribbon around her little neck. Not at all. Even though she had won it fair and square. No big deal. Even if she was cheated. Whatever.

 But Ellie, my sweet Ellie Belle, was pissed! Ellie, who always tries to avoid any kind of drama and confrontation was simply not going to stand for this injustice that had been done to her baby sister! She just could not wrap her brain around me not making an issue of it and insuring Tess got the ribbon she deserved.
(Ellie is nonchalantly holding back)

So after huffing and puffing about it for a while and saying that next year she and Tessie would be leaving everyone in the dust, none of this taking a dive crap, she grabbed that second place ribbon and pointedly marched off to the awards tent.

Oh my.

 Ten minutes later a beaming Ellie appeared out from around the tent and ceremoniously whipped the now, BLUE, ribbon onto Tessie's neck. And Tess beamed up at Ellie as if to say, "Thank you for understanding that I deserved this."
(Tess relieved that this scandal has been set to right)

Of course, I was fine with the second place ribbon. Totally A-okay with it. One hundred percent happy and secure in the knowledge that we did not need the blue ribbon to know we had won. I just couldn't figure out where Ellie got that competitive spirit from.
(sweet, sweet victory with Team Reidy)

 That's my story and I'm sticking to it.

Wednesday, April 18, 2012

Eighteen

Eighteen years ago today I became a mother. I knew my life would change and I was ready for it. I was not shocked by what a baby brought into the home; crying, constant diapers changes, sleep deprivation, runny noses, slobbery drool and the fact that I would never sleep through an entire night ever again without at least waking up once and thinking, "I should just go check on her. She is being too quiet (or her breathing sounds weird, or, etc. etc)".

No, I loved it all and at the time, when BOTH of my parents would look at her and say to me, "You won't believe how fast it goes.", I thought they were crazy and quite frankly, being just a tad over dramatic.

Oh, how stupid was I. Turns out they were right on the money. Today I am looking down the barrel of a gun loaded with the number 18. I am sitting here trying to figure out how so much time has gone by when I swear to you it was only yesterday that she said her first words;mama, dada, more, some, and pease (for please).

It was only yesterday that I had Gram make her Frosty the Snowman for Halloween and it was the world's BEST Frosty. Except of course for Frosty himself. We had to bribe her all night long with constant candy bars to get her to not freak out being in that costume. She absolutely hated it. Unless a candy bar had just been popped into her little mouth. Nothing like a sugar high to put things into perspective. Because we are good parents like that. Also, if she fell over, which happened frequently in that get up, she rolled around on the floor, unable to find purchase to help herself back up until one of us could stop laughing long enough to rescue her. Best. Costume. Ever.

It was only yesterday that I took her to see Sesame Street Live and she was too scared to go hug Ernie and Bert because they looked so big in person. But to be honest, it must be a bit disconcerting to watch something on TV and then when you see it in person, it looks ten time larger than you were expecting.

And wasn't it just yesterday that she started Kindergarten in her little plaid dress, white socks, and black Mary Janes? I'm pretty sure it was. The little girl who was too smart for her own good at times (because let's face it, when you are teaching a Kindergarten class, you do NOT want a kid reminding you that you forgot to do something in the right order).

The little girl who loved tree houses, forts, and making odd little versions of the movies she had seen with us using her gigantic video recorder, sister, and best friend. And much to my utter disappointment, was never really into Barbie dolls despite my constant attempt at trying to lure her to the dark side with Barbie Condos and the Barbie swim party pool and Barbie Corvette and yes, just to spice it up, even the Barbie RV (I never really got over my love of all things Barbie-what can I say?).

The little girl whose best Christmas present when she was six, was a desk loaded with markers, scissors, tracing paper and a switch that lit up under the paper for easier tracing.

The little girl who became obsessed with Riverdance and would pop the video in the VCR, run and change into the dress she deemed the most likely to get her in to a Riverdance show (not even close but I was not one to dampen her clogging loving spirit so I never told her), and put on her "clogging" shoes (her best black mary janes that had the most click to them and gave a satisfying enough Riverdance sound when pounded on wood floors).


The little girl who used to love to see her Uncle Jeff come for a visit because, and I quote verbatim, "Uncle Jeff, you are the weirdest person I know." And she said this in the most admiring voice and as if bestowing him with the highest honor. His response? "Everyone has to be the best at something. I'm the best at being weird." Such words of wisdom from an Uncle to his niece.

The little girl who loved books just like her mom. Would get lost in them. Actually she still does, much to my delight.

 The little girl who would watch Spongebob for hours and sing his Christmas song every Christmas Eve with her sister, "Santa's coming tonight, tonight. Santa's coming tonight." Actually they still do, much to my horror. (Okay, I think it's sort of cute but ya know, I have to at least pretend to be a little horrified).

The little girl who thought the Easter Bunny was on some crazed vendetta to kill her one Easter. She spent about two terrified hours having the hubby check all over (including outside on the deck) to be sure the Bunny wasn't just lying in wait for her to let down her guard before going on his shooting rampage of little girls who dared stay awake on Easter Eve.


 The girl who loved to ram around in the goKart or go on treasure hunts around the island at the start of every school year with her cousins. Who loved white water rafting and canoeing down the saco river with her dad. Who could, and would, spend all day at Grandma Reidy's beach whenever we visited in the summer. Who went on a nature walk with Grammie Ellen, only to lecture her, upon Grammie's discovery of a dead deer carcass and subsequent lecture of body parts, "Mama's not gonna be very happy. You showin' us dead stuff."

The girl who grew up to get hat tricks on the soccer field and love acting in the school theater productions. Who loves intense games of Railroad Tycoon with her friends and working with the younger kids in the Little Bridges program at school. Who is a bit of a tree hugger (got that from her dad, me thinks) and, while competitive, still can manage to go up to an opposing team mate and apologize for the crowds poor sportsmanlike behavior (ahem, not me though, no, I am ALWAYS a great sport-okay maybe not-again, this would be a daddy trait).

 A girl who amazes me on a regular basis. So that girl turns eighteen today and I can tell you with all sincerity, I never saw it coming. But I can also tell you that I love her more than any words that I could ever find would or could describe adequately and that she makes me proud that I get to tell people she is my daughter.

Happy 18th Birthday Blake Leigh the Buttercup girl, the prettiest girl in the whole wide world!!


Thursday, March 29, 2012

My kid is being admitted to Childrens Hospital on Monday...so I sent her to school

Yeah.

In an unprecedented move by, let's see, oh yes... me, I actually sent The Toots to school this week despite the fact something is still wrong with her little body, despite the fact that she is scheduled to be admitted, AGAIN, to Childrens on Monday, and despite the fact that I have not sent her to school since before Christmas due to her basically being sort of, well, unwell all winter.

I don't know what to tell you. Something is not right with my Toodle Bug and we spent eight days back in January with her in Childrens trying to figure that out. And then she got super sick, luckily while in the hospital, and the docs thought they finally found the culprit during a bone scan.

Two months later, even though she is still on antibiotics, "something wicked this way comes." That little phrase from Shakespeare's Macbeth is probably a bit melodramatic but it's how I am feeling at the moment.

Melodramatic and pissy. And tired. So very, very tired. Which of course leads me to feeling even more melodramatic.

Wah wah wah

I hate whining and that is totally what I am doing right now. If I were one of my kids, I would be threatening myself with chores or not being allowed out to stop my bad attitude but, too bad so sad I guess. It's my party and I'll cry if I want to.

Except I abhor crying... even more than whining because it inevitably gives me a migraine and it makes me look just terrible and everyone sees me and assumes something is REALLY wrong, not just the normal wrong so, no, I won't cry. I'll stick to whining. Thank you very much.

And now, because I have whined so much, I can't even remember why I started this post. See, kids, this is what whining will get you.

NOWHERE!

There, I feel better. I got to whine AND give a very valuable life lesson about what that will get you in the process. Right???

Anyway, this post is dumb. I was going to write about how proud of myself I was for letting Tess go to school again even though I really didn't want to but got lost (as I'm sure you wish you had been able to do before getting sucked in to this very boring post) somewhere in the middle.

What can I say except the thought of spending an untold number of days and nights in the hospital, eating yucky food and 'sleeping' on fold out chairs while watching numerous people poke and prod and radiate The Toots (and hoping they find the problem but that it won't be a bad problem) all the while worrying that we won't get home in time for Easter does not put me in very good humor.

And just like that, I am whining again. Me thinks it's time to go do a chore...

Tessie playing with the jingle bells at school

And playing the drums

Sunday, March 18, 2012

BFF's

"A single rose can be my garden... a single friend, my world."
~Leo Buscaglia

Tess had a play date yesterday. Usually when kids are around Tess, or even here at her house, they will play with her sporadically or when urged to do so by their parents. But inevitably they end up playing with any other kid who happens to be here, or even by themselves in Tessie's room. They aren't purposely ignoring her but simply lose interest in a kid who can't really play with them in the traditional sense. It can be hard to watch at times, especially when it is so obvious that Tess loves to have other kids in the house, and even more happy when they are in her room.

But yesterday was different. Miss Addie came for a visit with Sonya. And basically didn't want to leave. She hopped in the chair with Tess, brought any toy that wasn't battery operated (because I am not exactly the best at remembering to get new batteries), watched a movie with her, played a game on Sonya's phone with her, and yes, decided that this would be the ultimate house to play "doctor" in given all the handy supplies.

Doctor Addie with her patient




In short, Addie gave Tess one of the best days of her little life.

It didn't matter that Tess couldn't talk. Addie did all the talking. Or that Tess couldn't walk. Addie simply brought everything to her. No problem.

Although breathing did become a bit of an issue at times....for Addie. Tess would snuggle in so close to her that she was practically cutting off the poor girl's oxygen.

You can see how far over Tess has leaned to get close to Addie...before long, Addie was almost falling off the side of the chair


Addie took it all in stride. Except ya know, to hint every now and again that maybe we could move Tess just a little so that she could actually breathe.

So they played. All afternoon. Toys that were still unopened from Christmas got ripped into and put together with only a slight admonishment for me from Addie for not opening them yet. And I heard quite a bit about my lack of batteries for all the toys that needed them.

Before long Addie had decided it would be just great to spend the night. Sonya, not so much. But we did get a good laugh out of watching our girls together.

At one point Addie told me she wished that she and Tess could be sisters.

For now she'll have to settle for BFFs. But sometimes, best friends are just as good.