Ain't nobody got time for that!

It has been quite the week here at Casa de Reidy.

Let me sum it up for you:

Tess had a a seizure. Wait, let me rephrase that. Tess had a fourteen minute seizure, then had about eight or nine smaller seizures over a twenty-six minute period which prompted an emergency call to her pediatrician who asked me, "How hard will it be to get her off the island?" I responded with, "Well, kind of hard. The last ferry left about fifteen minutes ago, but it's a nice night." My last comment clearly confused the poor man who sort of laughed and said, "A nice night? Are you planning to swim across?" Love a doc with a good sense of humor. So I explained that in "island terms", referring to the weather as "nice" simply meant that we still had other ways to get Tess off the island if need be. Plane, lobster boat, or God forbid, Lifeflight.

Long story short, the meds finally did their job and she stopped seizing while the doc and I were discussing what to do next.

Phew! Another crisis narrowly averted.

Next in line in the Week O'Crap:

My laptop crashed. Just...boom. Gone. Only a creepy grey screen with a confused little question mark blinkety blink blinking on the desktop. My beloved, less than three years old MacBook Pro was gasping for breath.

Now, everyone who knows me knows, I LOVE my laptop. I am on it way too much (but that is a problem for another day) and I just panicked. All my hubby's business information is on that laptop. All of our last three years of photos. A lot of important documents. My one saving grace is that our local, awesome (hero in this story) computer tech (and high school computer teacher) had convinced me when I got the laptop to always back up to an external hard drive when I do the hubby's books. And I faithfully did. Thank you, God. Then I wrapped up my poor, sick little Macbook in it's little carrying case and handed it over to my computer doctor with a whimper on my lips and a tear in my heart.

He valiantly tried to breathe life back into it and even managed to revive it and hand it over to me...with nary a program or photo lost. As my fingertips danced over the keyboard and the screen came to life, I was so happy. We were back together. Reunited and it felt so good. Then, an hour later, my laptop gasped it last breath and died.  The computer doc is coming over again today for a last ditch effort at saving it.

Say a little prayer for my poor laptop, won't you?

So, just about the time I was thinking to myself, "This week has sort of sucked.", my house almost caught fire.

You read that correctly.

The pellet stove in our house malfunctioned and the sparks from the fire (that should not have been burning because the stove was OFF) were shooting out into the house along with an ungodly amount of smoke. Did I mention it was ten o'clock at night, the power had gone out, it was blowing about forty miles an hour and it was maybe 5 degrees outside with the windchill?

Through the hazy beam of the flashlight I quickly deduced that this was bigger than either of us could handle on our own. The hubby on the other hand? He was in some sort of shock or just major denial because he kept repeating to me, "It's fine. It will put itself out in a minute." I shined one last spotlight on the fire inside the pellet stove and the smoke billowing out of it and ran to get Tess dressed, emergency supplies for her packed, and told the hubby to get her the hell out of the house!

With a final directive to the hubby of, "Please, call the fire department!" we were off to my mother's for the night. (she conveniently lives about a two hundred feet up the road from us). Ellie and her boyfriend had met up with us as we were fleeing and very calmly accepted the situation as "just another day at the Reidy's" and helped me out get Tess to my mom's.

After pounding on the door and scaring my mother half to death, we got Tess back in bed and Ellie's boyfriend was just about to leave when the phone rang. It was the hubby. "I've called 911 so you'll be seeing firetrucks coming by."

Alrighty then.

It was quite a show to watch,  and was even more anxiety producing because I couldn't go and see for myself because I couldn't leave Tess.  So I did what any awesome parent would have done in my situation... I sent Ellie and her boyfriend out as my scouts to go talk to the firemen and make sure my house wasn't burning to the ground or that the firemen hadn't found the hubby lying on the floor overcome with smoke inhalation.  By midnight or so, it was all over. The firemen helped get the stove out of the house, and the only damage was what was done by lots and lots of smoke and a fire extinguisher being used. Two days of kids and family and even Tessie's nurse washing all bedding, furniture, curtains, floors, walls and windows, along with throwing or airing out stuffed animals, rugs and other odds and ends, and my house smells okay. Sort of like a woodstove has been lit. Not great but let's face it, it could have been a whole lot worse.

And last, but certainly not least, I finally got the date for Tessie's hip surgery. Either May 16th or June 25th. I can't even talk about it right now.

And this is what saved me this week because it is just about the most awesome interview I have ever seen and I laugh every single time I see it.

 Sweet Brown sums it up perfectly..."Ain't nobody got time for that!" 

So...how was your week?

Lesson learned

 trailer from the documentary Certain Proof:A Question of Worth


I watched this trailer today and it gave me goosebumps. What I saw hits very close to home. The constant struggle to make others understand that our kids with special needs (especially the kiddos like Tessie who are on the extreme end of the spectrum) have value and worth.

That they think. They feel. They love. They understand what you are saying. They have a sense of humor. They are capable of learning if given the time and patience it can often take to teach them. That the light in their eyes, that sparkle, is a knowledge far deeper than most of us will ever know.

And the real kicker is, I used to be one of those people. The ones who think that kids with special needs are "less than". The word "retard" would regularly escape my lips with no regard to who I was really talking about. I was one of the people who thought kids like Tess were a drain on society. They couldn't be taught. Couldn't learn. Would have to be taken care of their entire lives only to give nothing back in return.

Long story short:

I was a selfish, ignorant jerk.

I am not proud of who I was and the things I thought I believed back then. In fact, I am more ashamed of that than anything else in my entire life.  And when I look at Tessie, it makes me want to cry to know that there are others in the world who think about her like I used to think about someone else's baby.

Thankfully, here's what I have been given the privilege of finding out through experience; Tess gives back far more than she could ever take. She is smart. When she doesn't want to do something (like school), she will make herself go to sleep until she is given something she wants to be doing-like watching Toy Story 2. She is a kid who loves inappropriate humor. I often joke that if Tessie ever learns how to talk, we will all be in trouble. She thinks it's funny when I yell at  cheer for my older girls when they are playing sports.  She absolutely loves music, again, the more inappropriate (Baby Got Back comes to mind) the better. And even though she has gone through more in her nine years than most of us will in a lifetime, she will still smile and giggle at the world around her.  She thinks her sisters are the best people that were ever put on the earth (can I just tell you how awesome they are with her?!). She loves unconditionally. When she smiles at you, it shines out from a pure heart and soul.

Are there hard days? You bet. Days where you think your heart can't possible break any more and then something happens and you realize, "I guess it can." Days where the ache is so deep you wonder how you are out functioning in the world. Days where you think you just can't take it anymore...no more therapists, doctors, health agencies, insurance agencies, school calls, diaper changes, meds given, seizures...NO MORE.  But you keep going because there isn't a choice.

This is your child. Your baby. And there is nothing you wouldn't do for her because she is worth all of it.

All kids are.

Maya Angelou once said, "...when you knew better, you did better."

Thank God I now know better.

Following up

The appointment at Children's went pretty well, all things considered. 

I met with one of the docs who will be a part of Tessie's team for the surgery who handles the muscle/tone issues that kids with CP are known to have. 

A big part of Tessie's pain is coming from muscle spasms. Of course this leads to the question; is it the hip being so out of socket that is causing the spasms, or the spasms that are pulling the hip out of socket? Either way, it really makes no difference because it all leads to the same result. 

Bilateral hip surgery. 

I really like Dr. Q and she was very patient about answering my many questions, especially my concerns regarding the amount of pain Tessie is in, even with attempts already being made at pain management, and then having to listen to my concerns about medicating Tess even more for the pain. She had some ideas on how to better control the pain, one of which includes Botox injections to freeze the muscles that are spasming and thus, help them relax.

I am waiting for Dr. M's (the surgeon) OR (operating room) scheduler to call me with a definite surgery date which will be sometime at the end of April or beginning of May.

Yes, that is way farther out than I would like but Dr. M took quite a bit of time, unscheduled for him-we were not on his books to be seen (yet he came in and sat down to talk to us as if he had all the time in the world-awesome), to explain why.

Basically it is because he is booked already but, he did, very generously, offer to fit Tess in sooner if his scheduler could get OR time in the hospital. He even offered to cancel his clinic if it happened to fall on a day when he had to see patients, in order to accommodate us. That is a big deal because this man is crazy busy and it would really throw a monkey wrench into his regular schedule to do this for us. It is hard to get the OR time however, because it is a long surgery and to get an OR slot that allows for that amount of time is tricky. He also offered to see if one of his colleagues had any time sooner to perform the surgery but I quickly vetoed that. Like I said to him, "As a mom, when you meet a Dr. that you instinctively trust and like, you don't want someone else. Especially for something this huge. And I met you first, you lucky duck!" (yes, I actually said, "lucky duck"). And you know what he responded with (after he laughed)? He said, "I am lucky. It's my privilege to get to help her." And he was just so sincere. I tell you, I love this doctor.  

Then he assured us that if we could not effectively manage her pain, she would be considered an emergency and would get priority. That would mean canceling someone who has been patiently waiting, (like we are now) and taking their slot. Great for us; really, really crappy for someone else and not something I felt was necessary to do to another child who was probably just as uncomfortable as Tess is, with parents just as anxious as Charlie and me. 

So I am good with the plan we have in place. I am very happy with how the appointment went.  I felt that they not only empathized with my frustration at having Tess be in pain, but also that  my opinions and concerns were respected and taken seriously by them. And they were very quick to reassure me that, like me, they don't want her in pain and that they are not trying to put off her surgery. 

Dr. M also made the very good point that he doesn't want to go "barreling" into such a major surgery until everyone (including all the specialists that Tess sees) has had a chance to address any concerns that may have about Tessie undergoing such a major surgery. He wants to be aware of any and all potential problems that could arise and be ready to address them if need be during the operation. 

They actually have a plan and know what they are doing if I just trust them to do it. 

Imagine that. 

I will admit, it did cross my mind that maybe there could be some way that my forehead could accidentally get in the path of that Botox needle...just for a second or two. Or three or four.

Working some magic

Remember the old Rolaids commercial, "How do you spell relief?"

Well, around here it is spelled A-P-P-O-I-N-T-M-E-N-T!!

That's right, people. After much wheedling, whining and downright persistence in phone calls every day to the nurses and schedulers in the CP Clinic at Children's Hospital (not to mention working a little magic), I managed to get Tessie put into an "emergency slot" so she can be seen. This Wednesday. As in, only three days away!

To quote Tessie's beloved Cowboy Woody from Toy Story, "Yee-haw  Cowboy!!"

Of course now the nerves set in. It's all becoming very real. Tess is going to be having major surgery sometime soon. The brochure from Children's Hospital says that we will most likely not see her until about eight hours after they wheel her in to the OR. EIGHT HOURS! I cannot begin to imagine what that wait is going to feel like. I mean, we've waited for her in surgery before but that was like an hour and a half tops and even that felt like forever.

It's a good thing I am not prone to panicking. Oh, wait...actually, I am. Crap on popsicle stick.

And then there are all the other things that are going on around here. Namely Ellie's basketball team (hopefully) making it to the tournament and the Community play she has a big part in. I am already sweating it out over the scheduling.

As it is, I am going to miss the last home basketball game of the season because it is scheduled for, can you guess? Yup, Wednesday. Sigh.

If only that Time Turner Kris brought me back from Harry Potter Land was real I would be all set.

               Just a few turns back...that's all I would need.

Alas, until I can be magically transported back in time, I will just try to look at the bright side. At least Ellie has another year of playing basketball so it's not like I will never get to see her play in the school gymnasium again and I got the appointment that I was praying for which means I will get to say in person to the very people who need to hear it,

"MY KID IS IN PAIN! NOW HELP HER!"

And if that doesn't work, my niece, Drey, has Voldemort's Wand. I just may need to ask her if I can borrow it for a minute.

"CRUCIO!"

Grrr

Clearly I have not written a post in a while. It might even be the longest I've ever gone without blogging  since I started nearly three years ago.

I suppose you could call it "writer's block" but that's not exactly it.

The real reason I haven't written any new posts in so long is a bit more complex. And for the sake of honestly here it is...

I didn't want yet another post about how hard things have been with Tessie. I mean, they must all start to sound the same after a while. So instead, I have been patiently waiting for something to write about that would be funny. Light hearted. A little anecdote to maybe make you laugh. Something that I could say to myself, "Aha! This would make a funny post."

And so, my little blog has been very quiet.

The last few weeks have been brutal in regards to Tessie. As in, I want to bawl my eyes out and/or smack-the-ever-loving-crap-out-of-someone, brutal.

Remember a couple of posts ago how I talked about Tess needing bilateral hip surgery sometime in the next six months? Well, the next appointment she has with the Orthopedic Surgeon is not until April and even then it is only a consult, which wouldn't be a big deal except now my little Toodle Bug is in pain. A lot of pain. Wake up in the night, sobbing her little heart out pain. I can actually watch her pupils dilate from it. She cries some during the day as well but it mostly hurts at night. Which makes for long nights and a third person in the bed. Which makes for a tired mama and daddy. And you can imagine how happy being over-tired and over-stressed is making us.

The docs in charge have tweaked her medications a few times to try to control the pain and right now, finally, it seems like it might be working.

But here's my beef. WHY aren't they just scheduling the GD surgery?!?! WHAT reasoning are they using that tells them that it is better to ADD medications and drug the kid up for the next THREE MONTHS AT LEAST rather than deal with the problem?

I just don't get it.

But I will. Because tomorrow I am calling Boston and I refuse to give up until I speak with her surgeon.

No kid deserves to be made to live in pain. Especially pain that the doctors already know needs to be addressed with a major surgery. Especially when the wait for an appointment means three more months of pain and the side effects of the medications used to treat it.

Especially Tessie Toodles.

In the words of her pediatrician, "You don't want to bring mama bear out of the cave."

Well guess what?  Grrr.

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.

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?

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.
;)

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!

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.

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.