Friday, June 25, 2010

The bird is the word...

It was a Sunday afternoon. Blake and Ellie were at my dad and step-mom's for their usual Sunday night dinner. Buh was staying late to help with The Toots. Charlie was off island for the night. It was just Toodle Bug, Buh and myself when it happened...

I was so freaked out. I started screaming, Buh was screaming, and Tessie was, well, laughing. I needed to get us help and fast. I called my dad and yelled into the phone, "You have to come help us! Come now!" Dad is not prone to over-reacting and even sounded a bit annoyed when he said, "What the hell is the matter now?" Sheesh! I guess he'll change his tune once I tell him what I am up against.

"A bird flew into my house and is flying all around!", I screamed a bit hysterically. "I can't get it outside and I am really freaked out that it might attack us or Tessie! You need to come NOW!"

As cool as a cucumber he says "Well, what kind of bird is it?". What kind of bird is it?...what difference should that make?! "It's a chickedee!", I yelled into the phone while diving for cover and shrieking like a crazy person.

It was at this point in the conversation that dad showed a little emotional investment with my predicament...he laughed.

"A chickadee?? I'm not coming over there for a chickadee! Maybe if it was a crow or a seagull or something, but for a chickadee? Just leave your door open. He'll fly out eventually." Well thanks for nothing.

I stared at the phone, just listening to the dial tone because he had hung up (while still laughing I might add), before I slammed it down and looked to my ever faithful Buh for help.

We decided that the best course of action was to, in fact, leave the door open while she climbed the beams in my house, waving a piece of a shirt to scare the bird into flying out. Nope. The bird just became frantic and was zooming from one end of the house to another as Buh waved the shirt around her head like she was at some topless beach party in hell.

Important fact: I have a cathedral ceiling in my living room that goes up for about eighteen to twenty feet. I also have a huge window in the upper part of the living room. Guess where the bird was trying to get out? You guessed it. It kept zooming into the loft on the third floor and then doing a one-eighty and zooming back to that window. Hard.

Okay, this clearly was not going to work so on to plan B. Buh sat on the couch with The Toots and bodily covered her so she was protected while I flung a coat hanger repeatedly up to the ceiling trying to get the bird to come down.

With each upward throw of the hanger I'd yell like some Viking Warrior woman, "Protect Tessie!" Then I would scale the hanger wildly into the air while Buh covered Tessie and waited to see where the hanger would land...which, nine times out of ten, was on top of Buh. She bore it like a champ.

The 'protect Tessie' plan eventually came to a halt when I hit the bird with the hanger hard enough to have it twirl like a whirligig to the floor. Uh-oh.

"You killed it!", Buh yelled at me in a very accusing tone. "I didn't mean to, I just wanted it out!" I yelled back rather defensively. I proceeded to get on the wood stove mitts and picked the poor little thing up. "It's alive!", I rejoiced. Apparently I had only stunned it with the hanger. So I placed it oh-so-gingerly on my porch and went to get it some water to try to revive it. By now the little birdie was coming to and stretched it's wings and flew away. I slammed the door shut, slumped onto the couch with Buh and Tessie and we laughed hysterically for about twenty minutes.

A little while later my dad called. I picked up the phone and said, "Hello?"

His only reply was to start singing..."Bird Bird Bird, the bird is the word. I said the bird bird bird, the bird is the word."

He was still laughing...

Tuesday, June 22, 2010

My Birthday...

Hey there...this is Tess. You might know me as The Toots, Toodle Bug or Tessie. I have taken over mama's mind (it was really easy) for a minute to tell you about my birthday.

First, I woke up and mama and daddy kept telling me "Happy Birthday, Toodies! You're seven years old now!", as if I didn't know that. Then Buh came and said the same exact thing before getting me up and giving me a bath. I love my Buh!

After my bath, mama brought out this ridiculous outfit and told Buh to dress me in it. It was a cowgirl shirt with a fringe no less, a pair of jean capri pants, pink bandanna, pink and white cowboy boots that were three sizes too big and a big pink cowgirl hat with a tiara on it! I looked nuts! Not to mention it was about a hundred and eighty degrees out! Wow, mama.

Well, I dealt with the shirt, pants and bandanna okay but no way was I going to be traipsed around in that hat and those boots. I promptly kicked off the boots and threw back my head so that the hat wouldn't stay on. Mama tried three times to put my boots and hat back on but I quickly showed her that I meant business.

One of the things I love most about my mama? She knows when to just let me be. She told Buh to never mind the hat and boots as long as we got one photo with them on. Hehe.

Next, mama and Buh put on my Spongebob movie. Well, okay, this is more like it. So I settled back on my favorite spot on the couch and prepared to enjoy the next hour and a half. I was perfectly happy to sit there and watch my show but no, mama breezes in and says to Buh, "You guys ready?". Uhm...you had better be talking about Buh and Blake because there's no way that I am ready to go anywhere.

They really do take advantage of the fact that I cannot run away from them.

So we're off in the van. Mama, looking a little stressed if I must say, Buh, in a very weird hat and her scrubs, and me, in that ridiculous get up minus the boots and hat with a scowl on my face to show them that I was definitely NOT ready to go anywhere!

We arrived at some farm with horses and chickens and cows. It was cool but I was mad! All I wanted was to finish my movie. And now I am here, in this unrelenting heat, flies buzzing around (and I'm pretty sure I smelled poop and it wasn't from me) with everyone telling me over and over again, "Happy Birthday".

Well, I quickly snatched back control of the situation. I went to sleep.

Mama forced me awake (by putting cold water in my hair;real nice) once when a cute little miniature horse was brought out and I did like to touch her but I decided there was just too much chaos around me so I went back to sleep.

The rest of the party is pretty much a blur to me. I know all of my friends had fun and I am glad. I did wake up at the end of the party after pretty much everyone had left, and I got to ride on a great big horsie with my daddy and I loved it!

When I got home I got to lay in bed and take a nap with mama. That was pretty nice.

Later, all of my family came and I got to open a few presents. All in all, it was a good day even though I slept through most of it. What can I say...

Hey, it's my party and I can sleep if I want to!

Saturday, June 19, 2010

Inked...

I have a tattoo. Most people who first see it are shocked and will look at me very skeptically and say, "YOU have a tattoo?" Why, yes, yes I do.

I got 'inked' in February of 2008. It was after a trip to Childrens Hospital in Boston. My first trip that I took without my hubby. Just me, The Toots and Buh, which meant I had to drive in Boston. Gulp. For an island girl that is really quite a feat. And it really made me feel empowered as silly as it sounds. Hence the tattoo.

I was clearly on an endorphin rush that stemmed from my driving in Boston and getting out alive. I was drunk with power. High from the thrill of realizing that I could drive in one of the most nonsensical of city driving situations that man had ever created and not only hold my own but manage to cop an attitude that would have made any Masshole proud. I could do anything!

Which is why we're back to the tattoo.

Buh had already gotten a tattoo a few years earlier and had been trying to talk me into getting one for quite some time. I always held firm that I was not a tattoo kind of girl. Besides, any tattoo is bound to lose it's luster with age and weight fluctuations if you know what I mean. Plus, my hubby does not like tattoos. You leave this world the way you came in is his motto. No weird piercings and no tattoos.
I totally agreed. Until Boston.

So really, it was his fault, right? If he had been there like he always was in the past on our trips to Boston, this would never have happened. But for some crazy reason he thought he ought to stay home and go to work and try to support his family. What can I say? Sometimes there's just no reasoning with him.

Okay, back to the tattoo. Buh finally talked me into it and so I drew up a little design because I wanted it to be special and unique. After all, this would be the only tattoo I would ever get so I wanted it to really mean something to me. I ended up with a grouping of four stars that were connected by lines that made the shape of a rough heart. Inside each star was the first initial of all three of my girls plus my hubby's. I thought it was perfect. Tiny and perfect.

Back in Rockland the next day, Buh went in to the tattoo parlor and made our appointments for two hours later. I decided to get something to eat so I wouldn't faint if it hurt. Buh did not. She was a pro at this, remember? Never mind that she had a phobia about needles. Never mind that she popped a valium before going in (in case she had a panic attack she told me). She was so smug. Teasing me because I was nervous, giggling like a school girl and flouncing around the tattoo parlor picking out her ink. Remember what Karma is...it caught up with poor Buh mighty fast.

But I am getting ahead of myself. Remember, we had the Toodle Bug with us so what were we supposed to do with her? We couldn't just leave her in the van and our appointments were both booked at the same exact time so naturally we wheeled her in.

Well...the looks on the faces of those poor tattoo artists were just priceless. I think they had to literally lift their jaws up off of the floor with their tattooed hands. I mean really, think about it...in comes Buh...cute, young, flirty, funny and right behind her me...not young, not so cute, not gonna flirt, all business and oh yeah, pushing a severely disabled little girl in a wheelchair. I don't think they had any idea what to make of me.

Anyway, they regrouped pretty quickly and I explained that we had to bring The Toots in with us. No problem they assured me. Then The Toots ripped off a toot that would have put an old man to shame. I mean LOUD. And an odor the likes of which can only be replicated by evil cartoon characters twirling handlebar mustaches in lab coats with beakers and bunson burners boiling away. One of the guys jerked his head toward The Toots and the other tried to politely turn away so we couldn't see him laughing?/puking?/ take your pick. I quickly apologized and told them that this would happen frequently and I could leave if they preferred. Without missing a beat the guy who had jerked toward Tessie said, "we've definitely seen and smelled worse in this place. Great big men have fainted or puked or both. Whatever she dishes out we can take." Okay...

I get into one chair and decided that my tattoo would go on the top of my foot. My logic was that it would not stretch with age or fat and if I ended up not liking it I could cover it with a sock. The guy informed me that I had picked the most painful place on the body to get a tattoo. I told him that I had been through natural child birth three times and had just driven by myself in Boston. Let's go.

Holy sweet shit, that hurt! I'm talking pain that you almost can't believe is happening. I actually started chanting inside my head "you're good, you're okay" over and over.


Meanwhile Buh, the old pro, was in the chair right behind me. She was getting a lily on her back and after about ten minutes I heard a very weak, "you gotta stop. I'm gonna pass out or puke or something."

We all stopped and looked and she was as gray as a cloudy day. I'm talking walking dead gray here. I thought she was going to faint for sure. The guy that was working on her handed her a great big gumball and instructed, "chew!" Buh was so weak she could barely chew the gumball and I was afraid that she was going to choke on it. But she managed and finally, after about twenty minutes or more, she could sit upright again and the guy got back to work on her tat.

The Toots just sat patiently in her wheelchair staring at us with a look that clearly said, "WHAT are you two up to now?!"

By this point my tat was all done and who do you suppose was the smug one then? I was laughing so hard at Buh and, yes, it was probably a teensy bit mean of me but come on...after all that teasing she had done to me before her near fainting? I just couldn't resist.

At any rate, an hour and a half later we rolled The Toots out of there and were on our way to the ferry. As we left the tattoo parlor the guy said to me, "Come back when you want another one." "Thanks, but this is it for me." I said as I went out the door, my foot all bloody and wrapped in saran wrap. "You'll be back! They're addicting. Nobody ever gets just one!" He called after me. Okay buddy, I thought to myself. Nobody has probably ever rolled in with a kid in a wheelchair either, but I did. One is all I need or want.

All things considered, my hubby took it pretty well that I had gotten a tattoo. Especially when I assured him that it was a one shot deal. He even said that he liked it.

This year I will turn forty. We are getting a group of girls together to go to New York City to celebrate. I'm thinking that it might just be time for another tat...

Something special. After all, this will be the last one I ever have. Right?...

Wednesday, June 16, 2010

Lost in Translation...

I have learned a new language. It has taken me nearly seven years and many hours of studying but I think I am pretty fluent in it now.

I call this language "Dr. Speak".

I first began the study of this ever changing language back in 1996 when I was diagnosed with what I thought was skin cancer. In actuality, what I had was 'malignant melanoma, Stage 1-2'. Well, silly me. My course study had begun.

I then went on to a much more aggressive,immersion style of study in 2003 when The Toots was born. I have learned terms that I never dreamed of. Bradychardia, for example, was the term used to describe The Toots' way too slow heart rate during delivery and then at birth. Of course, I have since learned that Tachycardia is the opposite. A heart rate that is too fast. I learned this while having severe anxiety and panic attacks during the time of my undiagnosed Thyroid cancer.

Okay class, we will now discuss endocrinology, hypothyroidism, hyperthyroidism, TSH, Free T-4, papillary cancer, and radioactive iodine treatments. All words that are part of any person's vocabulary who has suffered from a dysfunctional Thyroid gland and/or Thyroid cancer.

Next comes my many lessons on pediatrics. Here are some very common place words for us to toss around during visits to Maine Medical Center or Childrens Hospital: Nissen Fundoplication, MRI, MRI with Spectroscopy, EEG, EKG, XRays, upper GI studies, stomach motility, modified barium swallows, microcephaly, Gtube, G-Jtube, nasopharyngeal reflux, ketones, acidosis, hypoglycemia, CBC, plain old 'levels', demineralization of bones, hip subluxation, scoliosis with C curve, botox injections, Grand Mal seizures, Petite Mal seizures, Clonic Tonic seizures, Focal seizures, Absent seizures, and the reports the doctors send back are just unreal as are most of my conversations with them. Here is a generic conversation that would be pretty normal for me to have with a doctor when calling with a 'crisis':

Doctor: "Describe her symptoms and when you first noticed them."

Me: "She spiked a temp. of 103 this morning. I first noticed a low-grade temp. last night. I am taking it rectally because the tympanic and temporal thermometers are not accurate on her. I am treating every four hours with alternating doses of Tylenol and Motrin. She is lethargic. She is responding to me but not in her usual way. She is diagnosed with hypotonia but fluctuates to hypertonic without warning and her muscles will spasm. She has an intractable seizure disorder. Her last seizure was earlier today, lasted for 8 minutes and was Clonic Tonic then Focal. I administered oxygen and Diastat at three minutes. She did/did not require suctioning. Her respirations are very fast and she is tachycardic. Yes, her breathing is labored. She aspirated during a seizure yesterday so I am worried she might have aspiration pneumonia. Her pulse-ox is at 91. Yes, it has a good steady rhythm so I know it is an accurate reading. Okay, I'll bring her right in. She is on the Ketogenic diet so she can't have a Dextrose IV."

That honestly is very close to most of my 'crisis' conversations with doctors.

But I have learned that doctors will give you more respect and listen better to your concerns when you can speak their language. And it is critical to The Toots that I am fluent in this in order for her to get the best care possible. I have been known to go toe-to-toe with neurologists at Childrens Hospital, nearly everyone in the Pediatric Suite at Maine Medical Center, and even her pediatrician, who I usually just love, and have them end up agreeing with me. It's all about what you can prove to them that you know and that you are serious and expect them to take you seriously in return.

And as Dr. Stephenson so wisely stated after one very heated discussion, "You don't want to bring Mama Bear out of the cave."

Uh, no, you don't. Grrrrr..

Tuesday, June 15, 2010

All the Small Things...

The hubby and I were putting The Toots to bed tonight (her own) and it made me think of how much of this ritual grates on me. Him too, for that matter. It consists of many small but very necessary steps that involve dosing out and mixing all of her meds (4), getting her formula prepared, diaper change and PJ's put on. Then hooking her up to heart/oxygen alarm and feeding pump. Every single night we do this. And every morning only in reverse.

It sounds simple enough. And it is. The only problem is that it is relentless. It not something that can be skipped or even done halfway. It must be done and done right. The Toots life literally depends on it. If we give her too much of her seizure medications we could stop her breathing. Too little and it could throw her into a life threatening seizure. Like the story of Goldilocks and the Three Bears, it has to be 'just right'. The mental stress of knowing that YOU are very literally in control of your child's health can be exhausting. Too bad because simply being 'too tired' is not an option.

Invariably, one of us will magically find something urgent that needs to be done in the kitchen, bedroom, laundry room or anywhere that might get us out of mixing the meds and drawing them up in a syringe or changing a diaper or getting the feeding pump ready. We hope if we stall long enough the task will be done when we come back in the room to 'help'.

Meanwhile, the person left to deal with everything alone will act all 'holier than thou' that they stuck around to save their little girl while the other one bailed. The person who bailed will come in and be oh so 'what can I do?' while knowing full well it has all been done. In fact, a guilty but very self satisfied smile can usually be seen upon their lips if you look closely enough.

Even reading this as I am writing it sounds so stupid to me. What is the big deal? And I really don't know, but I do get so sick of it.

I think part of it is the length of time we have been doing it. We have been changing diapers on the same child for seven straight years. Same with making her formula, getting her dressed. All the things that you just take for granted will end at a certain age.

And there is no end in sight. No finish line. No "Yeah, we are finally out of the diaper stage!". No "look how well she dressed herself!" No, "oh, I miss feeding my baby." It is all on us. Twenty-four hours a day, seven days a week. Forever.

Then of course there is the guilt for daring to have these feelings at all, not to mention actually admitting them out loud. I mean really, who has it tough here? Me and my hubby, who can walk and talk and not need to rely on somebody else for our every need? No. Which is why we keep doing all the small things that are so vital to The Toots. Because she is the one living it day in and day out and always, always with a smile that can light even the darkest day. Then you give yourself a mental reality check and say, "this is not a big deal".

Yes, we heavy sigh and are quite the martyrs at times (not in front of the Toodle Bug) but mostly we are a team. In it together even when we tell the other one "Your turn! I did it last!" Which by the way happens every night at about 1:30 a.m. when her feeding pump alarm goes off and one of us has to stagger out of bed, to the kitchen and into The Toots room to refill her food bag. And we are merciless. Not our turn, not our problem.

Of course, all bets are off if she cries or sets off a scary alarm. We both are on the run to her room then and to hell with turns.

But guess what? It's my turn tonight...

Sunday, June 13, 2010

The Bedhog...

Last night I slept with a 42", 39lb bed-hog. Or maybe I should say, last night I had very little sleep with said bed-hog because I constantly tried not to roll over and/or suffocate The Toots by moving off of the teeny tiny space she left me to 'sleep'.

I don't think anyone believes that she could take up so much space in a queen sized (and king for that matter) bed. After all, let's examine the facts:

Fact one: She is tiny. Quite a peanut really, other than being relatively tall.

Fact two: I am not tiny. Quite "grande" actually, so shouldn't I be the bed-hog?

Fact three: She cannot coordinate her muscles to move properly to really get anywhere.

So how can my little Toodle Bug take up so much space in bed you ask? One very simple reason...she is a snuggle bunny (she is also a boob girl but that is a blog for another time)! The Toots LOVES snuggling so getting to sleep with me (or anyone) is pure ecstasy to her. You can see it on her face when I tell her that she will be sleeping with me. Her eyes will literally twinkle with merriment and joy and she will smile like the cat that ate the canary.

So here is how The Toots mounts her sneak attack. She will be placed squarely on my hubby's side of the bed. On the side near the floor we will barricade her with pillows so that she can't fall out. We generally do not let her have a pillow under her head for fear of her suffocating (much like an infant might). Next we set up her feeding pump and make sure the wires and tubing are out of her reach then we hook her up to her oxygen/heart-rate alarm. And naturally, she has to have Baby Tad with her to sing her lullabies. I slide in on my side and within minutes I feel little feet reaching out to touch my legs. Check. Next, The Toots will heave herself using the weight of her head over into a "C" so that she is curled around my side and her head is against my back. She then will proceed to rub my back repeatedly with her little hand. Check and Mate!

She is so close to me that if I rolled even one inch over onto my back, I would squash her like a tomato.

All night long we play the game of me pushing her off just a little for her own safety, and her curling right back up and over onto my back. Eventually, I'll give up and let her stay there because she loves it so much. I will then 'sleep' in a tight, rigid little line, riding the seam of the mattress the rest of the night. Well, until she wakes me up by beating her little fist against my face to get my attention or wiggles her little toes to set off all the alarms (she is a smart bed-hog ta-boot)!

And if Nurse Sheila is here for the night and she tries to put Tessie in her own bed to sleep...well...little Miss Toodle Bug will shriek and scream and giggle and make damn sure those alarms are going off so that Sheila will have to get out of bed and check on her. But my smart little bed-hog knows that once Sheila leans over that railing she is all hers. Sheila will scoop her up and put her in bed (a little twin no less) with her and cuddle the rest of the night.

I might momentarily scope it out on the TV monitor that we keep in our room to spy on The Toots when she isn't in our bed.

Poor Sheila, she never stood a chance. Ahhh, nighty night...

Friday, June 11, 2010

Happy Birthday?...

It is almost June 21st. Tessie's birthday. The Toots and I handed out her party invitations to all of her classmates today at school. The kids all seemed pretty excited for her 'Cowboy/Cowgirl' themed party complete with pony rides for the kids.

I have debated about writing this post for a while. In fact, I have actually started and deleted it on three separate occasions. Why, you ask? For one simple reason...I am afraid I will come off looking like a sympathy seeking jerk. But I promised myself when I started this blog that I would write honestly and about whatever was on my mind at the time. With that, here goes...

I do not enjoy the Toodle Bug's birthday and I never really have. It is the one day of the year that my self pity wins out and I dwell on the 'what should have beens' with our situation with The Toots. It is a concrete, black and white, inescapable reminder of all the things a 'normal' child should be doing that Tessie will never do. It is the day we celebrate her being another year older, while in reality, she is the same age mentally. It is the hardest day of the year for me.

I have already planned a party based on what the other kids in her class voted on for her to have. My reasoning is that if the other kids feel involved in the whole party process, they will actually show up the day of the party. For my part, on the morning of the party, I will be worried the whole time that most of the kids won't show up. While Tessie would not realize it, I would, and it will break my heart for her if it happens. Luckily, this particular group of kids love Tessie and don't seem to have "outgrown" her yet.

I will bake her a cake that she cannot eat, have the other kids blow out her candles and all make wishes, and plan games for the kids that, for the most part, she cannot play. I will ask each kid to open the present for her that they brought and will 'ohh' and 'ahh' over it way too much because I feel like I need to make sure the kid knows that Tessie likes it. Meanwhile, Tessie may be asleep. Next the kids will take turns whacking at a pinata filled with goodies that Tessie cannot play with. They will rush to fill their baggies with loot while Tessie sits in her wheelchair thinking who-knows-what. I will plaster a smile on my face and crack jokes with the kids and adults while wanting to cry the whole time.

See what I mean? Sympathy seeking jerk.

In the evening, I'll have to repeat the whole torturous performance for my family. Well, minus the games and pinata. I will be counting the seconds until the day is over.

By the end of the day I will be exhausted. Absolutely drained from my 'performance' of being a 'normal' mom. I am not a 'normal' mom. Not with The Toots. Their is no 'normal' to be found. And what is so "funny" about it all is, any other day of the year I will honestly tell you, "Hey, this is not a bad life. Yes, it is hard and yes, sometimes very, very scary but not bad. I am happy and lucky to have the life that I do." But on her birthday, I cannot summon it from anywhere.

At bedtime, after putting The Toots to bed and our nightly ritual of meds, alarm hook-ups, and making sure that she has Baby Tad singing her lullabies, I will immediately get into my bed and try not to cry.

And here is what I really think my heartache on June 21st actually stems from:

I hate her birthday for all that it represents that she will never do, and I love her birthday because it means that she lived another year to celebrate it. And I will lay there in bed and pray to God that I get to celebrate another birthday with her next year.

However, just in case you are wondering if I plan on 'blogging' about her birthday party this year, I do. And it will be written, not from my perspective, but from Tessie's. And trust me when I tell you, unlike me and this particular post, she will have you smiling. She does not feel sorry for herself one little bit and never has.

Hmmm...maybe that is one of the many life lessons that my little Toodle Bug is here to teach me?

Tuesday, June 8, 2010

Heeerrrrreeee'sss Joanna!...

I was reminded the other day of what my life was like for a period of time when The Toots was about nine months old.

I had had surgery to remove my thyroid which was cancerous, and some (30 or so) cancerous lymph nodes. For some reason when my thyroid decided to quit on me, so did my back. Literally. I had such bad back spasms that there were periods of time that I could not walk. Eventually, my back healed a bit but was still extremely painful due to constant muscle spasms.

It was really, really awful. I could not take care of the Toodle Bug by myself because I could not lift or carry all fifteen pounds of her. I could not bathe her because I could not stand for more than a minute or two at a time. And the thought of actually bending over was unimaginable to me.

Without us really having to ask, my family jumped in to help. Someone was here with me and The Toots all day, every day. They would come in shifts starting at around eight in the morning so that Charlie could go to work.

The a.m. shift would come and give The Toots a bath, get her food and bottle ready, get her in her high chair and position her in front of my 'chair' so that I could actually feel like a mother to her. Then they would sit on the couch, next to my chair and I'd "visit" with my first 'guest' of the day.

Next came the mid-morning/early afternoon shift. This meant that the morning person was no longer the most important guest on the All Day with Joanna and The Toots Show. Thus, they moved down a space on the couch.

The mid-day person would prepare lunch for Toots and me and we'd all three "visit" because the early morning person didn't want to seem rude to the mid-day relief crew by running out the door right away.

Now, sometimes, we'd have a "surprise" guest star show up. Well, that person was naturally shown our respect and admiration by having the other two each move down a space on the couch so the surprise guest was closest to the stars of our show, me and The Toots. We'd all chat and try to pretend that this had all just transpired by sheer accident and no planning had gone into it whatsoever.

By mid-afternoon, both the morning and afternoon crew would leave. The Toots would be left to snuggle with me in my 'chair' until her sisters or dad came home to help, which would always be soon after the last 'guest' had departed.

But the show must go on and so it did. Each day The Toots and I would host pretty much the same 'guests' brought back by popular demand. The couch was never vacant for long and usually held more than one 'guest'.

I do not remember the exact day our Show ended. It was most likely around the time the State of Maine stepped up to the plate and we were given Private Duty Nursing.

But it was a great show while it lasted and I sincerely, from the bottom of my heart, want to thank all of my "guests" who showed up day in and day out to make our days a bit easier.

And in the word's (twisted to fit my needs) of the late, great, Johnny Carson when he gave his farewell speech upon leaving The Tonight Show:

I can only tell you that it was an honor and a privilege to have you come into my home all those months and entertain me... I bid you a very heartfelt good day.

Friday, June 4, 2010

Unsolved Mysteries...

"What is Tessie's diagnosis?". That is the most asked question we get in regards to The Toots. The reality is...we do not know. We only know that it is genetic and probably very rare.

For nearly seven years we have been on the hunt for an answer that will help us understand what happened. And for me, an answer to the question, "What is her life expectancy?". In other words, is her disease or syndrome terminal?

That question haunts me. And the fact that no one can give us an answer is both a relief and completely frustrating all at the same time. I think I want to know what she has, but do I really? What will it change?

The reality is, no matter if we ever get a diagnosis or not, I do not believe it will change anything for us or for The Toots. Will we care for her any differently? I don't see how. Will we love her any differently? No way. But I stubbornly refuse to give up the search. I make calls, I Google, I grasp at straws.

My hubby is better at handling the unknown. I need answers. Maybe it is because I wonder if I did something wrong. I knew I didn't feel well during my pregnancy but should I have yelled about it until a doctor listened? Or maybe it is for self protective reasons. In the back of my mind, I wonder if I should be preparing myself for the worst. But I can't go there. No good can come of getting lost in those questions.

Then there is Blake and Ellie to consider. I need to have answers for them. Is this a gene that they could pass on to their children? Or was this a fluke? A chance in a million? No one can tell us.

So we continue to hunt and research and draw blood and take xrays and go to genetics appointments all in the hopes of finding this elusive answer. An answer I'm not even sure that I want.

And when I feel like I am going to go crazy from the not-knowing, I remind myself...Tessie is Tessie not a disease or a syndrome. She was given to me because I needed her just as she is and I wouldn't trade any of it, the good or the bad, for anything.

Wednesday, June 2, 2010

Got Bugs???...

Tessie was sick. Very sick. Brianna ("Buh" for future reference) and I had already brought The Toots to the medical center earlier that morning. The Toots was clearly not doing well but we could not seem to figure out why. We brought her back home under strict instructions from the most amazing 'Dr. Jen' to call right away if she seemed any worse at all.

About three hours later Buh said to me, "I really don't like her vital signs. Her respiration's are way to fast and her heart is racing." I took a look and we decided to call the medical center to tell them we were on our way up with The Toots.

Thankfully, I had the drill down pretty good by this point and thought to grab my purse and The Toots 'jump bag' that has all her necessary meds and such in it. I was thinking they would probably put us on the ferry and send us to the ER. I was only partially correct.

Jen and Dr. Entel looked Tessie over and decided that they weren't screwing around waiting on the ferry. She was immediately put in the ambulance and taken to our airstrip. The same Tonka Toy plane as before flew us to the mainland where we were once again whisked off in an ambulance to the hospital.

The ER was all ready for us when we arrived and we were put in one of the ER rooms. At this point it was just Tessie and me. Buh was bringing my van over on the ferry and coming to the hospital to meet us and basically, give me moral support. My hubby and I decided that since Buh was willing to do this, it would be better for our other two girls for him to stay home with them. They were already scared about Tessie and we wanted to lessen the severity of the situation for them and figured the best way to do that would be for him to stay home.

By the time Buh got to the hospital both she and I were punch drunk from anxiety. Buh had a headache and I was just exhausted. The Toots was in the hospital bed hooked up to IVs and monitors and really looked awful. We were very worried.

Now, there is something you need to understand about Buh and me. We are just alike (being cousins might have something to do with it) and she loves the Toodle Bug with all her heart. We also tend to get a bit...well...giddy when overly stressed. This was no exception. And to make matters even more hysterical for us, the poor old lady in the next room was having a bit of trouble.

The first time we noticed our 'neighbor' was when we heard her yelling to a nurse outside the room about how she needed to get a different nurse. "Look at her! She's scratching her head! She's got bugs!" we heard her yell out. "I don't want her touching me with bugs on her head!". Well, this just set us off. We lost it. As poor Tessie lay there sicker than a dog, alarms going off, Buh and I went off into gales of hysterical laughter. And I do mean hysterical. But, little did we know, it was about to get a whole lot better.

After about ten minutes of the nurses trying to convince this woman that, no they did not have bugs, she started in on the need for a ciggy butt. "I've been a smoker my whole life, you assholes, I just need a cigerette!", she yelled to whoever would listen. Naturally, they told her no,the hospital was a smoke free zone, so she tried wheedling. In a little girl, I'm on my best behavior voice, she said, "I promise. I'll be a good girl. Please just let me have one cigarette and I promise I'll be good!" Once again she was told no. However, they did offer to give her a patch. She went ballistic. Screaming and yelling at them. Buh and I were literally losing it. I don't know if I've ever laughed so hard in my life.

Well, they could not seem to control this woman's need for a cigarette and her belligerence at not being able to have one so they told her, "We'll have to give you a shot if you can't calm down." No dice. The next thing we hear is security and the doctor and nurses discussing how to approach her to give her the shot. They come up with a plan of attack and go in. She sees the needle and before they can even tell her anything she starts in with her little girl voice, "I'll be good. I promise. Just don't give me a shot. I'll do anything you want...." and before she could finish her sentence they must have shot her up because we all of a sudden we hear her yelling in a NOT so little girl voice, "That was a lethal injection you G-damn fools! You've given me a lethal injection!". Then....silence.

Except of course for mine and Buh's laughter bouncing off the walls. We must have been really loud because a cop actually opened our door and poked his head in. He surveyed the scene before him. Sick kid in bed, two women, tears running down their faces in gales of laughter, to the point where neither one of them could talk, sort of waving him away. As I remember we just looked at the cop, looked at each other and lost it some more. The cop kind of shook his head a bit but must have decided that at least we were happy crazies and gently shut the door.

Hey, it takes all kinds...

Tuesday, June 1, 2010

What's in a name?...

The girl's name Tess \t(e)-ss\
is a variant of Teresa (Greek),
Tessa (English) and Theresa (Greek),
and the meaning of Tess is "late summer".

I must have been about five months pregnant the day my hubby came home after work and told me he had come up with the perfect name for our upcoming bundle of joy. He was in awe at the sheer beauty of this most wondrous name. "It brought a tear to my eye when I thought of it.", was what he told me before laying it on me.

Now what you need to understand about my hubby and me is that we are total opposites. On just about everything. And he had tried to choose names for our other two girls as well. Utter failures. Both times he tried. Now, for fear of offending a reader or two, I will not tell you the names he had come up with. Suffice it to say that with the names he had picked out, the only future I could envision for them was becoming a hooker and claiming their "turf" on a street corner somewhere calling out.."Hey there handsome! Ya lookin' for a good time?". Uh, no.

He thought I was terribly unfair because both Blake and Ellie were names I had chosen. I wanted straight forward, simple names. And as my brother-in-law, Richard, so wisely told me, "give them a name that you can quickly yell out at them when you are mad." Good advice. My hubby however, preferred names with a bit more, well...slut to them. You know the ones.

So you can probably understand why I was nervous when he got ready to present me with this most wondrous name. Then he laid it on me...

Tess Oasis

Clearly, I loved the name Tess and was very impressed that he had come up with it but OASIS???? Uhm, ewww! I said, something along the lines of, she isn't a mirage in the desert! She is a baby! He was so offended. He just could not wrap his brain around the idea that I did not like it.

"But it is so beautiful! Think about what it means, Joanna. An oasis is a place of serenity and beauty.", he said, trying desperately to rationalize this most heinous of names. No thank you. But we did agree on Tess and agreed to try to come up with another middle name that we could both agree on. Fat chance!

A week before my due date, due to health issues I was having, the OB/GYN was going to try to induce me. By this point he had another name that he liked and I had one that I liked. Never the twain shall meet.

He liked Orion (yes, as in Orion's Belt) and I liked Joanne (I was named for my grandmother, Joanne and wanted the tradition to continue). We could not agree.

Anyway, while I was laying in the hospital bed getting hooked up to pitocin to induce labor Charlie tried to recruit a little help. He said to the nurse, "Don't you think that Tess Orion sounds much better together than Tess Joanne?"

Before the nurse could answer, I jumped in with, "Can you imagine naming your poor child after a constellation of stars! That's all anybody will ever think of when they hear her name. Kids on the playground will tease her! It's stupid!"

The nurse looked at me and then at Charlie and said, "My middle name is Orion".

Can you hear the crickets chirping in the silence that followed? I could. Oh my God, how was I going to salvage this situation. My foot was so far in my mouth that my toes were showing out my butt. I mean really? What were the odds? It was just so unbelievable.

I looked to my hubby for a little help here. He was grinning like the Cheshire Cat. I wanted to reach over and slap him. I looked to the nurse and said something extremely stupid like how she was probably Irish so the name Orion was perfect and how it wouldn't make sense if you weren't Irish and blah blah blah. I really got caught up in the whole Irish thing as my excuse. The nurse, bless her, said yes she was Irish and it was an old family name. We quickly changed topics.

Oh, and since Karma is a , well you know, I spent the entire day having contractions but walked out of the hospital that night still pregnant. Figures.

And in case you are wondering, it is Tess Joanne Reidy, thank you very much...