Sunday, December 11, 2011

A little Wisdom and Whine...

I have had a very unpleasant toothache the past three weeks or so.

It started with just a simple pinging every now and again and soon developed into a full blown, pulsating throbbing that got worse every time I ate or drank. Anything.

Needless to say...EASIEST DIET EVER!! (Well, next to the cancer one I went on about six years ago but no one except me seems to think that little joke is funny)

I've lost nearly ten pounds in these last few weeks. And I wasn't even trying. This excites me.

The pain? Not so much.

After three or four days of pain, I decided denial was not going to work in this instance and broke down and called Dr. Barbour at Glen Cove Dental (well, since I officially did not have a dentist I called any damn person who was willing to see me the next day and he was the lucky duck with an available slot). They very kindly fit me in the next morning so I packed up The Toots and headed for Sheila's.

I need to brag a bit here because getting us both ready and packed in under two hours is nothing short of a miracle.

Here is what I got done in those two hours (I must tell you because I am still so utterly impressed with myself).

As I said, I still needed to shower and get dressed. Since I was home alone with Tessie, I very quickly showered, ran to check on her, ran to get dressed, threw on some clothes, checked on her again, went back to blow dry hair, ran back to check on her again, then got on my make up and back to check on Toots.

Next was the packing. My stuff was easy. One bag. Done. Back to check on Toots. Then on to packing for her. Ready? Here goes:

*Bag for nebulizer, nebulizer meds, oximeter, and cords and probes for oximeter.
*Bag for diapers, wipes, and chuck pads
*Bag for clothes and extra clothes
*Bag that holds portable suction
*Bag with cans of Keto powder, cans of polycose and salt to mix her food. This bag also needs to have cord for feeding pump, food bags, syringes, extensions for gtube, gram scale for weighing and measuring her food when I mix it, an extra gtube button kit should her's get pulled out, and two extra oxygen tanks.
*Jump bag that has all her emergency meds and oxygen in it for seizures.
*Bag for daily meds, gauze pads and ointment for stoma, and trivial items like brushes, shampoo, etc.

Add Baby Tad and me running to check on Tess about a zillion more times and I think that just about covers it. Then I needed to get The Toots dressed. And bonus, she decided that it was the perfect time to totally let loose and managed to get, well, crap, from one end of her little body to the other. Good times. Good times.

Anyway, See why I was impressed I managed to get all that done and get packed quickly while in pain no less?

The next morning I saw Dr. Barbour and he basically told me that I needed to get rid of two wisdom teeth and a molar. The molar was what was causing the pain. I believe his exacts words were, "Not good, Joanna. This is not good." Then he did what he could to get me out of pain.

I then had to confess that I had not seen a dentist regularly for about five years because the one I used to see got very upset with me when I canceled appointments that I couldn't make because Tess was either sick or had appointments that conflicted with mine. This certain jerk-off told me that I needed to make his appointments a priority and basically learn how to schedule Tessie's better. And he was very angry when he said that to me, as he was doing a root canal on me and I was crying because he was such a jerk. So I never went back.

I explained all this to Dr. Barbour along with the fact that it would probably happen with his office too because I don't have a lot of control over when Tess gets sick or has appointments.

So he gave me a hug and told me I would never be treated like that by him. Then he apologized for the other dentist being such an ass. So naturally, even though I very much disliked the whole, "you need three teeth extracted pronto" message, I loved Dr. Barbour.

I told him I would make the appointment with the oral surgeon but could I do it after Christmas? He said I could try but he didn't really think that I would make it that long with no pain.

And he was right on the money. After about three days the pain was back but sort of in a different spot so I thought something else was up. I called Dr. Barbour, got to talk to him, explained my predicament and that I had a nurse who could stay with Tess if he could fit me in the next day so he called another patient to switch their appointment, and voila, I was in. Of course, the whole packing up Tess quickly went into effect. Lucky for me I was too lazy busy to really unpack much from the prior week's adventures in dentistry.

He basically told me I needed to get that tooth out. Now.

Silly me. I thought, even as he said that, that I could tough it out for a couple more weeks.

Turns out, I'm not that tough. Fast forward a week...

I got slid in at the oral surgeon's for an emergency consult last Thursday and when I met with Dr. Battell I basically asked her if there was any possible way to do it right then. I went on to explain that I has a nurse for Tess so it would be so helpful to just get it over with. She agreed. But without sedation because she didn't have enough time in her schedule for that part.

Now I am a horrible baby when it comes to the dentist. I get all panicky and shaky under the best of circumstances so this was a bit of a blow. I asked about laughing gas and she said that I should be fine with just that and some novocaine.

I won't get into all the gory detail but you know how they call it laughing gas? Well, I wasn't laughing. And I lost count of the number of shots of Novocaine I needed.

However, I was in and out in under an hour and Dr. Battell was very, very kind and as gentle as that type of procedure can be. Which basically means she beat the hell out of the inside of my mouth but was so nice about it that I didn't hate her for doing it.

I am almost all healed up now. The pain has been very manageable with Advil and ice and hopefully this little bump in the road is over for now.



And because this post was basically stupid and rambling, yet you've loyally read to the end, I will leave you with this little dental joke:

"Open wider," requested the dentist, as he began his examination of the patient. "Good God!" he said startled. "You've got the biggest cavity I've ever seen -- the biggest cavity I've ever seen." "OK Doc!" replied the patient. "I'm scared enough without you saying something like that twice." "I didn't!" said the dentist. "That was the echo."

Sunday, November 27, 2011

Where are you Christmas?

I am in quite the quandary people. Or, as my Auntie would say (shout out Auntie Lucy!), "In a bit of a pickle."

*side note here: That little saying is part of an inside joke between us and never, ever fails to make me smile because the events that transpired in order for her to first utter those now infamous words were hilarious. Got you wondering now, don't I?*

But back to my elusive point.

I ALWAYS have my house decorated for Christmas by now. Not necessarily the outside lights because I hate doing those and therefore con the hubby into doing it on my birthday/day after our anniversary as part of my "present" because I am evil like that.

The girls and I, (well, okay, the girls because I have a bad back, remember?) get out the decs from the attic as I suggest give the orders as to the best places to put them.

And I have some really awesome Christmas decorations people.

Like my Christmas Village that lights up AND has a train. The Bean is usually in charge of putting that up. So what if it is really a cheap one that was bought on sale for half off at JCPenny and now sports a few nicks and some broken church steps? I LOVE it and that is what counts.

Then there is my snow globe collection. I only have maybe 5 or 6 of them but I consider it a collection.

My favorite one is of the manger scene with Mary, Joseph and the baby Jesus and plays "Oh Holy Night" when you twist the little twisty-key thingy. It is probably my most favorite Christmas decoration because when Ellie was only 5 and I was about three months pregnant with The Toots, she gave the hubby very strict instructions on what she needed him to get for her to give me as a Christmas present.

It HAD to have the manger scene AND play Oh Holy Night! And after going to nearly every store at the Maine Mall, the hubby finally found it in Macys. And naturally paid and arm and a leg for it but it was EXACTLY what Ellie had requested. Then she gave it to me on December 23rd because I had been sick in bed with a migraine and she thought it would make me feel better. Love it, love it, love it.

Then there are my family Christmas stockings that Gram knit for everyone. They have our names and a Christmas scene knit into each one. They also hold an unbelievable amount of presents. Pure awesomeness.

There also are all the other little Gram-made decorations. Stuffed felted Santas, table runners, fir filled scented pillows, crocheted tree ornaments complete with photos of us and the girls, and one very small stuffed stocking that is supposed to read "ho ho ho" but, because she didn't notice when she made it that the material was upside down, reads "oh, oh, oh".

It is funny to us because she made it for me the year that I was diagnosed with cancer and we realized The Toots was not developing normally thus we deemed it fitting that it should read "oh oh oh" instead anyway (yes, we all can appreciate sick humor in my family). I still crack up over it when I hang it up on my door knob.

But why the quandary you might be wondering? Well folks, it seems as though we may actually be moving. Yup, our house on East Boston Road, the hubby's Magnum Opus if you will, will finally be ready for us to live in.

While it will not be completely finished off, it will be done enough to move in to. For Christmas. That is the plan as of right now anyway. The hubby is working like a mad man between his "real jobs" and the house so that we can be in it for the holidays.

Or to be more exact, our anniversary. December 5th. (I wonder if that means no outside Christmas light chores "presents" for me this year?

We are not sure yet if we will make it. But we are hopeful. Enough so that I do not want to put up my Christmas decorations here only to have to repack them and then put them back out there.

Which leaves me feeling at very loose ends Christmas-wise.

As of right now, there is one small pitiful little Charlie Brown-esque tree that is sitting on my wood stove and some white twinkle lights that I leave up all year long in my Kitchen and on a floor plant.





This just does not work for a girl who loves all things Christmas and has been listening to Christmas music since September.

I feel like my decorations are sitting up there in the attic talking amongst themselves and saying things like, "Why aren't we out on display yet? Doesn't she love us anymore? What have we done wrong?"

You know, sort of like Toy Story (where the toys all come alive when no one is looking) only with Christmas decorations.

Don't worry my little decorations. Your time IS coming...

Saturday, November 12, 2011

Are you ready to RUUUMMMMBBBLLLEEE???...

Nana and Papa stopped by tonight for a little visit.

Now Tess hasn't had an arm-wrestling throw down with her Papa in quite a while. But the timing was right. She was in peak physical condition and mentally ready. When Papa's big paw grabbed her little hand she knew no fear. Only the thrill of his impending doom.

And she set out, once again, to prove that she is still the "arm-wrestling champion of the world!".

Enjoy. I know I did....



Tuesday, November 1, 2011

You're never too old to Trick or Treat...

Halloween is over! Yay! I am not a fan of Halloween in that I think it is a gigantic pain in the butt, the decorations aren't pretty and cheery (like say, Christmas ones) and the endless candy eating is no friend to my aforementioned butt.

The one saving grace about Halloween for me? My kids still get into it.

Blake went to school dressed as a Zebra. She looked cute but it wouldn't exactly have won costume of the year. Ellie dressed up as a Woodland Fairy Princess and looked cute as well, though again, not enough oomph in the costume for my liking.


So when Blake told me she was going trick or treating with a few of her friends, naturally I was suspicious. I mean, let's face it, four Seniors out trick or treating doesn't particularly sit well with me mainly because as any good parent, I didn't believe that was ALL they were really going to go do. Blake is a very good kid but that doesn't mean I don't question her every time she goes out.

Plus, come on, Seniors do not go trick or treating. They just don't. So what were they REALLY going out to do? I outright refused to let her out at first, then when I finally relented, gave her a curfew that a ten year old would have laughed at. So I relented I tiny bit on that as well because as Blake so astutely pointed out, she was a good kid, always obeyed my rules, got good grades and basically does what she is told to do.

Damn, I hate when her logic crushes my overly dramatic imagination. Okay, but I made her swear on my life they were really just going trick or treating. There would be no booze and no vandalism, aka egging or TP'ing others or other's property.

I SWEAR MOM! WOW!!!

I had her repeat who was going, again, and since those kids are all, well, basically awesome, I gave her the go ahead.

Then got a little too control-y with her choice of costume. I told her if she was going to embarrass me by trick or treating at 17 years old, then she at least needed to look badass. And yes, I actually used the word badass with her. I know, I know, bad mother, bad mother.

So I rounded up things to whip out a pirate costume for her and between that and her bestie, Izza, she looked awesome. I was quite proud.



Then it was time to get The Toots ready. And guess what? She was a pirate too because let's face it folks, you don't get much more badass than my Toodle Bug. Plus, she sometimes gets this certain little smile and it totally looks like a pirate saying, "ARRRGH!!" Love it.



And while Ellie did not actually participate in the trick or treating, she did something so scary I can barely speak of it.

She started Driver's Ed. *cue window shattering, bone chilling scream*

As in previous years, we loaded up the Dread Pirate Toodle Bug and took her to my dad and Ann's to help hand out candy to other trick or treaters. Four of whom turned out to be her sister and friends. Yup, they pulled up in a Suburban and came in for a photo op. Now is it just me or do you think that if you are capable of legally driving yourself around in a vehicle, perhaps you are just a tad too old for trick or treating?



But they are just such a good bunch of kids that I ended up being proud that they had the heart, and at their age, the cajones, to go do it. And not be embarrassed at all. Just having a blast all together getting to be little kids again. And you know what? There is a whole hell of a lot worse things they could have been out doing.



And the best part? Blake was home even before the first, ten year old curfew that I gave her. When she got home I noticed she had upgraded her choice of hat. When I asked her about it her response was, "I left a Captain and came home a Commodore!"





That's my girl...

Monday, October 24, 2011

Always leave 'em laughing....

I've written about my eldest daughter, Blake in previous posts. Smart, funny, gorgeous, athletic, happy, kind, well, you get the picture. But Blake does have a secret. An achilles heel if you will. One could even go so far as to call it a...flaw? perhaps.

Blake absolutely, positively cannot stand to be in a hospital.

When people hear that they are always surprised. I guess because they assume that since Tess has spent so much time in hospitals, that Blake would have put in her fair share of visiting hours. But in reality, Blake has only been one time to the hospital to visit Tessie. And no, not because she doesn't care. Of course she cares. She loves The Toots with all her heart but she has always been really busy with sports, drama and school and it isn't as though the hospital is ten minutes away. It is an ocean away. Literally. And often times, a couple of States away. So it just didn't happen.

Except for last winter. You may remember me writing about The Toots being hospitalized with Influenza B and pneumonia. She spent 6 days in Special Care, hooked up to oxygen nearly the whole time, seizing, and just generally scaring the ever loving crap out of me. I am not exaggerating when I say that was one of the first times I honestly thought we might lose her. It was that bad.

But The Toots is made of sterner stuff (thank God) and rallied. After a few days I thought she looked well enough to see her sisters and they really wanted to come see her. I figured a visit from them would cheer her up immeasurably and do her as much good as the meds being fed into her little body from the IV. And bonus, The Bean and Bob-bay were also coming to visit.

When the kids got there they had to put on masks and wash and Purell their hands before getting near The Toots. Then they filed in on either side of her bed. She was happy to see them but too sick to really show it. Ellie and Bean were laughing and giggling as only those two birds can when they're together while I noticed Blake sort of backing off just a bit. Hmmmm....



And then she started a small freak out. "Mama, Tess looks really bad! Is she going to be okay? She really doesn't look good!"

And there was really no time to answer her because Blake was rambling on and on chirping like a maniacal bird in a tree. "How can you stand it here?! How can you stand being trapped in here day after day?! I feel like I'm going to puke or something! I really don't like being in here!"

I sort of looked at her like she had suddenly sprouted three heads (partially because in her hysteria a bobby pin had come loose and was swinging crazily in front of her face and she didn't even notice) and calmly said, "What is the matter with you? Go sit and calm yourself." Poor Bobby didn't know what the hell ailed her and Ellie and Bean were cracking up at their sister's distress.



All in all the kids stayed maybe an hour before leaving. Blake nearly trampled them getting out of there. And I didn't think too much more of it other than to laugh about that bobby pin dangling.

Fast forward to this past Saturday. We went to go visit my nephew who is recovering from a serious accident. We took the kids to Boston to see him and decided to leave The Toots with nurse Sheila so there would be no medical drama while we were there. You will get the irony of this last sentence in a moment.

I knew Blake was nervous. And as the visit progressed at one point I noticed her hands shaking like a parkinsons patient. I took her aside and whispered, "Are you okay?". She assured me she was fine and so we continued to chat with Heather and Joe.

The next thing I heard was Blake saying, "Mom, I can't see."

I thought to myself, "For God's sake, what is she trying to look at that I could possibly be blocking?" I mean, I know I'm not small by any stretch of the imagination but to be blocking her whole field of vision? Come on!

Then she keeled over. Head first into a chair and then the floor.

Yep, out cold. I was so shocked I couldn't move. Ellie said something along the lines of, "Wellsa!" while the hubby sprang into action and gathered poor Blake up into his arms. The look on Heather's face was priceless.

We got Blake sort of situated. Head down, feet up, laying on the hospital floor right beside Joe's bed. It was about the time she started coming around that I began to snicker. Heather, who had been right next to me started to snicker as well. Then I was full blown, hysterically laughing, to the point of snorting, and so was Heather. The hubby did not seem to share our humor which only made us laugh harder.

Yeah, we're all heart. In fact, poor Blake had to actually ask me to "make myself useful" and get her some water. So I laughed even harder.

After about twenty minutes of laying down, then moving to a sitting position all the while apologizing to Joe saying things like, "I'm sorry Joe, it's not you. You look good. It's me. I hate hospitals" and at one point apologizing to him for "stealing his thunder", Blake managed to pull herself together enough to leave under her own steam (which was questionable at one point. She even asked if I was 100% opposed to her being wheeled out in a wheelchair) and I shoo'd them out ahead of me as Heather thanked Blake for the much needed laugh.

Then I turned to Heather and, you got it, we lost it some more. With a hug goodbye, I left. Both of us still in gales of completely inappropriate laughter.

When we got to the van Blake described the experience for us.

"I dreamt I was on a roller coaster because Joey's face kept whipping by and I had an up and down sensation. But now what I think happened is that the room was spinning and the up and down part was me falling over."



Well, yeah, that would make sense.

I laughingly agreed that that was probably what happened and luckily, Blake has an awesome sense of humor, even at her own expense and laughed right along with me and agreed I could blog about her little episode when I asked.

Then we got a text from Heather, "Is Blake feeling better?"

Me: "Yes. And She is happy to have made your day. Always leave 'em laughing she said."

Heather: "Well, I'm still laughing"


Mission Accomplished. Thanks Blake.

Monday, October 10, 2011

Just Imagine...

I really do not spend a whole lot of time thinking about how my life is now. How it has changed so drastically over the past nine years. But when I do stop to think about it...

Nine years ago, I could never have dreamt that you could live, every single day, in physical pain and still laugh. In fact, I could never have dreamt that it would be ME living with that pain. I was strong, healthy and in really good shape. I had never even broken a bone. Then, WHAM, one day out of the blue, three and a half months pregnant with The Toots, muscle spasms in my back ripped though me like a tornado. The pain was indescribable. Seriously. And every day since then I have been in pain. Untold numbers of doctors appointments later, bone scans, MRI's and XRays and we still don't know why my muscles are so super sensitive. The word Fibromyalgia has been bantered about by a few doctors but I don't care what they call it, I just want them to fix it. Back pain and a disabled child do not mix.

Nine years ago, I could never have dreamt that I would have a child who is disabled. And medically fragile to boot. Nine years ago the worst thing I could think of with regards to my child's health was when Ellie had severe asthma attacks. Now they were scary. I mean, what could be worse that watching your child not be able to breathe? I would soon find out. And the bigger irony here? I purposely waited SEVEN years between Ellie and Tess because Ellie's health had scared me so bad that I thought I couldn't handle it if this baby had asthma too.

Okay Joanna, we'll see your scary child and raise you one VERY scary child. Thanks for playing.

Nine years ago I could never have imagined living my life in a constant state of fight or flight. Having to carry around a bag filled with diapers, wet wipes, drool cloths, oxygen, emergency seizure medications, thermometers, and syringes just to go out for ten minutes. Not to mention, suction machines, chest therapy vests, feeding pump and wheelchair. I could never have imagined that a normal item I would carry in MY purse would be extra syringes just in case.

WHEELCHAIRS, FEEDING PUMPS, SYRINGES...Oh my!

Nine years ago I could never have imagined having a normal conversation about something with the hubby all the while helping my child during a seizure. I could never have imagined having a child with seizures at all let alone, very, very scary seizures, and being on constant alert for them and still consider it just another morning when she has one.

Nine years ago I could never have imagined spending enough time in the hospital, with my child, so much so that everyone knows her and my, names. Even in a big hospital like Childrens Hospital in Boston. 9 North and 9 & 11 Fegan...many people in those three places know our names and or faces on sight. What are they? They are the epilepsy & neurology floors in Fegan and the neurology inpatient floor at North. Yep, we are superstars for sure! At PenBay, when the nurses hear Tessie is there, even if she is not their patient, they will come in to say hi to her. "I heard Tessie is here!" they will sing out as if we are there for a nice little visit. And I love it. I love it because the more invested they are in my child, the better in my opinion.

And let's face it, you can't not fall in love with Tessie. She just has that way about her. People are drawn to her everywhere we go.

Nine years ago I could never have imagined standing at the check in desk at a hotel, with Tess next to me in her wheelchair, watching in fear as a very large man, all dressed in leather, big beard, lots of tattoos, begin to walk towards Tess and, as I am starting to grip her chair a little tighter, kneel down so he is eye to eye with her, and in a voice so gentle it sounded like it couldn't possibly have come from such a man, say "Hello sweetheart. You sure are beautiful." And then gently rub her cheek with his massive paw-like hand as Tessie breaks out in a huge smile, and then look at me to tell me how gorgeous she is and how he is a motorcycle rider and often rides in benefits for kids like Tess.

Nine years ago I could never have imagined how a moment like that would stay with me forever and still make me feel good today whenever I think of it.

Nine years ago I could never have imagined going to Special Olympic games with one of my children competing and actually having a great time. And cheering for all the athletes and being so proud of them even though I didn't even know them as they put their heart and soul out there for everyone to watch. I could never have imagined that I would actually look forward to these events, but I am already wondering when the next one is (and of course plotting to figure out how The Toots can win, I mean let's face it, I'm still me).

Nine years ago there were many, many things I could never have imagined.

I could never have imagined the road that I was about to go down and at the same time, I KNOW I am supposed to be on this road and that it is a GOOD one although filled with sadness and fear at times.

This has always been one of my favorite poems. Even as a kid I loved it. Now I know why...


The Road Not Taken by Robert Frost




TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Wednesday, September 28, 2011

Escape from Vinalhaven...

Yesterday I flew the coop. Got the hell outta Dodge. Took a break.

It all started because there were some errands that had to be done by the end of the day yesterday and could only get done on the mainland.

I did try to con the hubby into going in my stead but he outright refused. Fine. As the Little Red Hen once proclaimed, "I will do it myself!"




I hate to sit in the cabins on the ferry because the seats make my back want to cry by the time the ride is over so I decided to try to get my van on the boat.

I dutifully set my alarm for 5:30 and, when it finally dawned on me that I might actually get a whole 5 1/2 hours to myself, was raring to go as I anxiously waited in the line of cars to see if there would be enough room on the ferry for mine. It was also around this time that I spied, with my little eye, someone who I thought would probably be able to run my errands for me thus making the whole trip unnecessary. I asked this person if in fact they could run my errands for me and they very kindly said it would be no problem.

What to do, what to do?

By this point I really wanted to get away for a bit. I love Tess with all my heart, but oh my God, the days can sometimes really drag on. This was my shot. I could watch a movie in the van that I wanted to without feeling guilty and without those big brown eyes judging me or I could nap during the ride. The world was my oyster!

Okay, that was a bit dramatic but you get what I mean. I just wanted some time off.

I decided then and there that if my van got on the ferry I would go. If not then I would just head back home and deliver the good news to Charlie that he could, in fact, go to work to try to support his family. And I know, I should have done that regardless considering there now was really no NEED for me to go but guess what?

My van got on the boat. *insert guilty and yet self satisfied smile here*



And I got to chat and laugh with a friend on the ride over. Shop at Walmart without dealing with feeding tubes, jump bags, and wheelchairs AND I got my errands done and STILL got home in time for my older girls soccer games! I am woman hear me roar!

Did I mention to the hubby that I didn't actually need to go? That he could have gone to work and that I went just to get a break? Let's just say that I hope it's a long while before he reads this particular post.

But in my defense...

Well, I'll get back to you on that.....

Tuesday, September 20, 2011

Laughter is the best medicine...

As probably all of you who read my blog know, my cousin Heather's son was in a bad accident while at college a little over a week ago. He is in a coma but showing steady signs of improvement. She and her husband have been with him at the hospital trying to basically just get through it without losing hope, faith, their minds, you name it.

I call or message Heather on average of about once a day. And to be honest, it is as much for me as for her because I need to be sure she knows that I am here for them. Because that is all I can do for her right now. That's it and I hate it. But I know from personal experience, that this is a ride you take alone. Yes, it helps immeasurably to know you have support (and boy have they been shown that and more from everyone in our community and beyond) but ultimately, they are in this with just each other and we are outsiders who can only imagine what they are going through.

Since life goes on, even though when you are in the hospital it feels like time has frozen still and you can't imagine that the sun is daring to shine outside and that other people are going about their "normal" lives while you are in what feels like suspended time, you start prioritizing what has to happen in your regular life.

Who is helping take care of the other kids? What about groceries? Laundry? Housework? Not to mention keeping up with all the household bills while nobody is working because they are in the hospital. You start dealing with the details of a life that almost doesn't feel like your own anymore.

At least that is how I have often felt when being with The Toots in the hospital. The feeling like my heart has literally been ripped out of my body and is now laying on a hospital bed and I am helpless to make things better. All I can do is just watch and pray and wait.

Oh yeah, and laugh. That's right, I said laugh. Not because there won't be tears, because there will and plenty of them at times, but because you need to grab on to joy and hope when it feels like you are going to drown in fear and sadness.

I am notorious for going into inappropriate gales of laughter while in the ER or, God help me, the Special Care Unit with Tess. It is how I cope. I can find humor even in the worst of circumstances and I thank God that I can. What little is left of my sanity is only there because I choose to laugh when it would be so, so easy to just cry.

And so when Heather managed to take about five minutes to get home to work on those details of her life, I went to go see her. I didn't know how either of us would be when we saw each other. I knew it would either be laugh or cry.

So we laughed. Mostly over absolutely nothing. To the point where her other son who was talking with us starting teasing us and saying, "Would you two get it together?!"



To which we responded by laughing more. Poor Jack. He could only shake his head at us in what I can only assume was pity over the fact that we had both lost our damn minds or maybe fear that he would have to keep listening to us.

But laughter truly is the best medicine. At least it felt pretty darn good last night...

Monday, September 5, 2011

School Days...

Normally this is a truly wonderful time of year for me. I love the Fall weather and the fact that the kids are heading back to school. I love that having them go back to a normal routine also puts me back into a somewhat normal one. I love going to the soccer games and chatting with folks while cheering for my girls.

But something feels off this year. I am not as excited. I find myself waking up in the middle of the night with my heart pounding and scary thoughts racing through my mind. There is a black cloud hanging overhead that I can't quite escape from.

The Toots is going to school as well. And I swear to God, I don't think I am in any way ready for this.

Now, of course you are probably thinking that I have completely lost my mind since Tessie has technically been going to school for three years already but here is my dilemma. I have basically removed Tess from the school and had her tutored at home most of that time rather than send her. I did this for a variety of reasons. The biggest one being that she gets every single germ that another kid has but gets a thousand times sicker than those kids. I couldn't risk it.



Another reason, valid in my mind at least, is that The Toots hates school. As in, forces herself to fall asleep in the van on the ride to school and will only miraculously wake up when she hears (through her veil of sleep) that she is being brought back home. Then, POP, her eyes open wide and she grins like the cat that ate the canary. Because she has won and she knows it. She is going home to her mama and her recliner and her Spongebob.



But thanks to that UNE Neuromotor Clinic that we went to over this past summer, she can no longer get away with that behavior. Why? Because they basically told me, in a very, very nice way, that I spoil her rotten and it is not helping her. Damn!

They informed me that most eight year olds would rather stay home and watch their favorite movies but should they be allowed to? Would I have allowed Blake and Ellie to? Well no, of course not. But Tessie is NOT "most" eight year olds. I put up a pretty good defense of myself, I will say, but they seemed to have an answer for every single one of my arguments! I hate that!

My point: she hates school

Their point: most 8 yr olds don't want to go


My point: she falls asleep and won't do anything

Their point: Because it has always worked for her in the past. This year, when she falls asleep in school, she will have to wake up in school and will then realize she did not win that battle.


My point: She gets SO FREAKIN' SICK and to be brutally honest, what if she got so sick it killed her? How would I ever be able to live with the knowledge that I could have prevented it by simply keeping her home with me. Where it is safe.

Their point: She is getting exposed to all these germs every single time you take her anywhere. The doctors, the store, etc. Plus, Blake and Ellie are bringing home the school germs anyway. And finally, you have to consider QUALITY of life versus QUANTITY. In other words, what is the point of being alive if you aren't allowed to live?

AAAARRRGGGGHHHHH!!!!!

But they are 100% right. The Toots deserves to have the best, most fulfilled life possible and that very much includes going to school. Much to my chagrin.

So tomorrow, Sheila will take her to school and I will have some time at home to myself. And I cannot even remember the last time that happened.

What will I do with my time? Oh, sit and worry. And then worry some more and second guess myself for even letting her go. And God forbid she gets sick in a couple of days after being there. I will beat myself up one side and down the other.

Then I will put on my big girl panties and deal with it. And then send her back to school. Because I refuse to fall back into that safe comfort zone that makes me feel good and secure while taking away something that Tessie deserves.

A life.

When I ran all this by my trusted Heather, she agreed with UNE while remaining empathetic to my worries. Then she left me with this quote that she thought was good for both Toodle Bug and myself...

“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." ~Christopher Robin to Winnie the Pooh

Friday, August 12, 2011

Wally-World....

So yesterday morning I realized that The Toots was running out of one of her seizure meds. In fact, she would not have enough for the next morning's dose. Normally I don't cut it that close on getting the prescription filled, for obvious reasons but in this case, we are away, in Biddeford, for a week. It just sort of got away from me.

Well, I figured, no biggie. There is a Walmart here in Biddeford so I could just transfer the script up here from Rockland and have it filled by the afternoon. Oh, dare to dream you daydream believer.

I called it in and was promptly informed that they were out of stock of that particular med. Well, great.

Not one to be easily deterred, I called the Walmart in Scarborough. The one we had literally just driven by about twenty minutes ago. The one it would take us another half hour to get back to after we drove another fifteen minutes, in the opposite direction, to pick up The Toots from Sheila in Biddeford. In evening traffic. In August. Yeah.

Long story short, the Scarborough Walmart had the meds. Hurrah! Crisis averted! So we picked up The Toots and turned right back around to drive back to where we had been forty-five minutes earlier. Evening traffic. August. Hot. Tired. And oh yeah, did I mention we had spent the afternoon in Portland at UNE for Tessie's discharge from the neuromotor clinic? A full two hour meeting complete with DVD show of Tessie doing different therapies. A very good, but very intense meeting. And long. Did I mention it was two full hours of sitting around a conference table? On a beautiful day?

Okay, okay, enough. I know.

Back to my rambling point. We got to the Walmart in Scarborough and decided that Tessie would stay with me while I went to the pharmacy to get her meds and the hubby would shop for what we needed food-wise. A good plan. Divide and Conquer. In and out. Double time people.

The hubby took off with the cart and I stood in line with Tessie in her wheelchair and waited. And waited and waited and waited. I counted the minutes. Literally. I got in line at precisely 5:19 pm EST and was finally waited on at 5:41. I also counted that there were SIX people working behind (as in trying to look busy so they don't have to make eye contact and thus actually be forced to help someone)the pharmacy desk yet had only one person checking people out. That kind of thing really pisses me off. I bit my tongue. Hard.

I told the lady The Toot's name and was then told it would be $1100.00. I am not joking. That is the price of just one of her monthly meds. We have Anthem as our primary insurance but they were only covering part of the charge which knocked it down a little but here is where things rapidly went to hell.

The Toots has MaineCare as a secondary insurance which should of covered the entire cost. Surprise, surprise, it was denied.

I was then sent to speak with the Pharmacist where we went over and over that it was a covered medication and yes, she did have a prior authorization form for it from the State saying that they would pay for it. I repeatedly told them to call the Rockland Walmart to straighten it out.

It was then that I was given to the pharmacist because, get this, the "pharmacist" that The Toots and I had just spent thirty minutes with was an intern. Well, isn't that typical.

So I started my diatribe from the beginning with the new idiot, I'm sorry, pharmacist and we finally discovered after many attempts at me trying to understand his foreign accent, that it was being denied because they had filled the wrong type of this medication.

Let me make this very clear to you so you can fully appreciate the absurdity that is the MaineCare System and thus your tax dollars hard at work.

Even though it was the same EXACT medication, and the same EXACT strength to be taken the same EXACT times of day in the same EXACT amounts, because this one, the one they had filled was not dissolvable, it needed it's very own prior authorization form because the one we already had, was for the dissolvable tablets. But wait, it gets better. Those were the ones I had asked the pharmacist to fill when I called it in because I already knew all this and HE had screwed it up by filling the other kind. And then he had the nerve to try to blame me.

Guess how that went over?

Yup, Lee Osgood suddenly arrived in full force complete with Aunt Sharon glare. He very huffily and oh so put out-ly asked who had I spoken with when I had (supposedly) asked for that specific medication? Why I am ever so glad you asked me that Mr. Accent Man because... it was YOU.

It was at this point that he became ever so much more helpful and asked me to give him five minutes to fill the prescription that I had originally asked for when I called.

No problem you big stupid dufus.

By this time Tessie was also pissed. She was screeching, loudly, and banging her hand down on the arm of her wheelchair as I wheeled her throughout the store looking for the hubby to try to let him know what was taking so long. By this point, over forty-five minutes had been spent trying to sort this out. It was also around this time that I noticed a familiar stench emanating from The Toots.

And the hits just keep on coming.

Okay, no sign of the hubby, The Toots had clearly shit herself, and was pissed, everyone in the damn store was staring at us as we went by and then I heard Tessie's name paged out over the loudspeakers. "Would Tess Reidy please report to the pharmacy desk?"

Are you friggin' kidding me here?!

So I gave up the search for the missing hubby and headed back over, in a cloud of stink, to the pharmacy. More problems. They did not have enough of the medication to fill the prescription. Okay then Captain Obvious, how about you just give me what you got so I can get the heck outta this hell hole! Okay? Okay!

After an HOUR I get the prescription in hand. Hallelujah!

We resumed the circling pattern of the store in search of the hubby, the smell I was pushing in front of me had reached epic proportions and both Tessie and I were seething. I was muttering like a crazy woman things like, "Where is daddy? You would think he could hear us or smell us or something" I was ranting and raving and then I spotted him. And then I decided I didn't care about who thought what and I yelled across SuperWalmart. Loudly. CHARLIE!!!!!

He turned (along with many others) and looked at us and it was then I noticed that he didn't look so good. Kind of an at wits end, blank eye look. Twitchy and pissed. And we both greeted each other with basically the same reaction;

"Where the hell have you been?"

The hubby then proceeded to tell me that he had tried calling my cell and paging me out over the loudspeakers (none of which I heard) and when he clearly did not believe I could not have heard my name called throughout the store, I shot back with "Well, did you hear Tessie's name paged out?" NO? Check and Mate.

He then went on and on about how he had been in and out of the store looking for us and was beginning to think I had had "some sort of spell" in the store (those were his exact words) and had pictured in his head me, fainted dead away, in the middle of the aisles with The Toots sitting forlornly abandoned in her wheelchair in dire need of help. Uhm, okay? Because I am so prone to fainting?

The next scenario was that he thought Tessie must have had a seizure and we had been whisked away in an ambulance unbeknownst to him. He was literally running in and out of the store listening for sirens. He thought the security folks had him under surveillance because he insisted he probably looked quite deranged. I am inclined to agree after watching him recount his horrible predictions as to what could have become of The Toots and I in a SuperWalmart.

And then he came out with a winner. "I thought you had been abducted!" WHAT????? He really had lost it. I mean, let's face it. Who the hell would want us?!

By this point we were both laughing but in that close to hysterical way you get when you really want to scream at the other person.

We finally got out of Walmart and headed for the cottage in Biddeford. Charlie was still recovering and I was snickering at the image of him under surveillance like a madman who needs close watching all because he couldn't find his wife and disabled child and was anxiously asking every employee he stumbled across, "Have you seen a woman pushing a little girl in a wheelchair?" I mean, can't you just picture the looks on these people's faces? Bahahahaa.

Then, out of nowhere, a small car careened into our lane right in front of us with no warning.

"C@CKSu$#KER! M*therf^cker! Moron!!", yells out the hubby while slamming on the brakes.


I looked over at him like, uh, hello, perhaps you are overreacting just a tad and then I promptly burst out laughing.

Thankfully, so did he. Just another satisfied customer. Thank you Wally-World...

Sunday, July 24, 2011

Breeding like rabbits...

This past Easter the Easter Bunny brought my three girls the perfect Easter present. When I (excuse me, I mean when the Easter Bunny) called my hubby to tell him about the most wondrous gift of all time his immediate response upon my asking "Guess what the Easter Bunny is giving the girls?", was, "It better not have a heartbeat."

What a buzz kill.

I laughed a bit hysterically and managed to squeak out, "Actually, there are three."

Total silence.

So I frantically backpedaled and began the whole shpeel of how the girls would take care of them (what? was Tess supposed to heave herself down the stairs and miraculously get herself to the bunny hutch?) and they were so tiny they would be no trouble at all and blah blah blah.

The hubby left me feeling less than optimistic when he informed me he would have no part of them so I better hope the girls stepped up to the plate.

Well! We would show him!

Of course the girls were thrilled with their mini Holland Lop Bunnies. They sacredly vowed to personally take care of them. Ellie named her's Thumper because she looked like the little bunny in the Bambi movie, Blake named her's Nugget but then had a change of heart and wanted to name her Sal so I kept calling it Salnugget which stuck so Salnugget it is, and in the name of not confusing The Toots, we named her bunny, well, Bunny.






We kept the adorable little rodents, sorry, bunnies, in the house until it warmed up enough for them to be outside. And it warmed up enough with the hubby for me to wheedle a bunny hutch out of him.

He and the girls, (not really but they did help for about a half hour so that counts, right?) took a Sunday in mid-May and built the bunnies a hutch. I took one look at it and immediately asked the hubby why it didn't look like the photo from the internet that I gave him. He was not impressed by my less than enthusiastic response to his efforts and quickly reminded me that the bunnies were not his problem yet he had spent the whole day building them a hutch and pen. If I didn't like the results than I was more than welcome to build a hutch myself.

Sigh.

So I sucked up the weird little hutch and the girls took turns feeding, watering, letting in and out and all things bunny related.

It soon became apparent that two bunnies were girls and one was a boy. Let's just say that the boy "asserted" his manliness at every opportunity. The hubby quickly pointed out that now I was a bunny farmer. I was a wee bit worried but shrugged it off.

Then Thumper died. Sorry to be so brutal but that's life on a farm. He had managed to escape from the oh so great hutch and we found him two days later at then end of our neighbor's driveway. He had been shot. Nice. Real nice.

But life goes on and so did we. Salnugget and Bunny lived in wedded bliss so Thumper was probably the third wheel anyway.

Fast forward to this morning. I, not Blake, not Ellie,(don't ya just love it?) I went out to let the bunnies out of their hutch and into their pen and to feed and water when I noticed something that looked like a weird nest. Well how odd. I peered in for a closer look and I swear to God, there were four babies in there.


Just what this three ring circus needed.

I yelled like the redneck I can revert to (a little too easily) for the girls to get outside. They all came a running and ooohed and ahhhhed over the babies. Then panic set in. How do you take care of baby bunnies? Does mama bunny do it all? Does she need back up like a normal new mommy?

And then, I looked into the pen and Bunny was, "asserting" himself on poor, and I can only imagine, sore, Salnugget. I was furious! "Leave her alone!", I shrieked at Bunny. But Salnugget was having none of it. She flipped Bunny over onto his back and smacked him in the head. You go girl!

So I immediately went online and researched and found out that the male needed to be separated from the female for fear he will immediately impregnate her. Oh. my. God. Really?

The girls and I (with the Bean and Bob-bay) headed back out to remove Bunny from the pen.

I then go back to the internet and upon further research discovered that while the male and female should be separated, they should still be able to touch and "nuzzle" through the barrier or else they get really stressed. OH for crying out loud!

So I begged Charlie to put chicken wire down the middle of the pen so that Salnugget and Bunny can be reunited but still be apart. He said no. And no amount of pleading on my part would sway him. I was so pissed.

Then I went in to full on martyr mode and told him to stay with Tess while I went to do the "man's job". I was out there for about forty-five friggin' minutes. Sweating and swearing and getting scratched by a terrified Bunny. I was also, (red neck sisters Hollah!) shouting out to the general neighborhood (hello Charlie) things like, "No don't come help. I really don't need any help at all. Please, just sit in there and do nothing. Really it's okay, even thought this is the worst made bunny hutch and pen in the world, I can do this myself!" And on and on.

When I came inside I was uglier than a grizzly bear and aimed it all at the hubby for daring to build such a ridiculous bunny hutch in the first place. And when he pointed out that the bunnies were not his idea to begin with and the girls and I said we would take care of them ourselves, I just got more pissed. Then I basically told him he should probably leave. He was only to happy to comply.

And the kicker is, I just looked outside to check on them and Bunny found his way to Salnugget despite my great architectural improvements to the pen.

Screw it. (pun intended)

Anybody looking for an adorable mini Holland lop? Ready to go in about eight weeks. And again about three months and eight weeks after that and again about three months and eight weeks after that and.....

Sunday, July 17, 2011

Learned helplessness....

I have been taking Tessie to the brand new UNE pediatric clinic which specializes in PT, OT, ST and education for children with special needs. The have put Tessie through a gamut of "workouts" to see her level of needs and while they are busy doing that, I am sitting in a chair getting grilled by whomever is not working with Tess at the time.

For example, while PT is working with Tess, OT and ST are asking me questions about Tess, about me, about Tessie's birth, her medical history, my medical history, our home life, our other girls and on and on. Trying to figure out the mystery that is Tess.

Anyway, Tessie was a total rockstar. She was on her feet (with support), reaching up for something that they put just out of reach to see what she would do. She got it. That's right. My little Toodle Bug weebled and wobbled but didn't fall down. And didn't give up until she got the bells in her little hand. She played "row, row, row your boat" and actually participated in the "rowing" part as best she could. They brought out different switches to activate toys and sounds and she was all over it and knew just what to do with almost all of them. Their were a few that she didn't understand but not many.

I, on the other hand, did not perform quite so well. Oh yeah. Let me tell you the exquisite torture of watching your child do really well while answering questions with, "I don't know. I always just do it for her." or "I didn't know she could do that".

The therapists were all extremely kind and told me not to beat myself up over it. That I was a good and loving mom. I'm not so sure.

I mean, yes, I am a good mom but what happened to letting Tess try things for herself? What happened to expecting more out of her? Why wasn't I giving her choices, even if only limited ones, that she was more than capable of making?

Because I just wanted it done with. Like getting her dressed. Yes, if given the chance, she will choose her own shirt, or dress and even earrings. I don't give her that chance very often. She should be getting it every single day. The same with everything else. It is just easier, and takes less effort on my part to do it myself.

I know that it sounds horrible but it is the truth. And look at it from my point of view. Every time I give her a choice, it takes three times as long to get even the simplest of tasks done. And their are always more to do right behind it. It gets so overwhelming because there is no end in sight.

Basically I realized that I am in a rut with our daily routine.

But there is one other fairly important reason why I do everything for Tessie. I want her to know that even if she can't do something, I love her and am proud of her just as she is. I want her to know, without any question in her mind or heart, that I love her unconditionally. I am sometimes afraid that she won't be able to either understand or perform the task that is being asked of her and think that she is disappointing me. As Dr. Phil would say (and yes, the man drives me nuts but he is dead on with this one), I want to be her "soft place to fall" because that is what every child deserves.

I now understand that as far as The Toots is concerned, I have taken it to the extreme. While being so quick to do things for her, I have taken away her power. Making choices is a powerful thing for anyone, especially for a child who cannot physically move herself to what she wants or verbally ask for it.

Learned Helplessness. That is the term for what I have been doing with Tessie. You can google it. But basically what it means is that I have taught Tessie how to be helpless. Charlie has often quoted that term to me with my stubborn refusal to hear it. I was being a good and loving mom. Right? Yeah, right.

While watching those therapists work with Tessie and seeing the obvious pride on her face when she succeeded, it hit home. Charlie was right. I was not demanding enough from Tess. She always buckled her knees when I tried to get her to stand, she would whimper "mama" during something hard asked of her at school. I sometimes suspect she is faking not feeling well at times in order to get to sleep with me at night. And I reward that behavior handsomely. And why wouldn't I? The little shit is a master manipulator and she has learned at the feet of the master: me.



Well, as Dylan sang, "The times they are a changing" and so are things around here.

When we were away, I let Tessie pick out her own treat at the store and instead of me picking out two things I thought she might like and having her choose between them, I showed her toy by toy, her choices until she reached out her hands for what she wanted. And she loved it! She had this big grin on her face the whole time.



And yesterday, I started reading her an age appropriate chapter book instead of the books I've been reading to her since she was one. I had her choose between Charlotte's Web and Ramona and Her Mother and she picked the latter. We read 80 pages before she had had enough. I was in shock. She was laughing in the appropriate places and really seemed to get it. It was so much fun for her and for me.

Big girl steps. (I originally wrote baby steps; change is hard!)

Tessie and I are taking them together...

Thursday, July 7, 2011

Dreamweaver....

Relatives often dream of Tessie. Every now and again they'll tell me that they had such a great dream about Tess. They almost always include her walking and talking all of a sudden. Everyone from my sister-in-law, to my cousin, to my Aunt and even her husband have had these same dreams. Blake and Ellie have each had these similar dreams as have I.

Because we all have such a vested interest in Tess, I chalk up our dreams to us all sharing the same wish for her...that she could walk and talk. The dreams are always very vivid yet so matter of fact at the same time. It is like we are not shocked that she is doing these things, more of a "I knew she would do this someday!". Plus the dreams tend to be funny because Tessie is a funny kid. She will do or say something in the dream that will have me cracking up while at the same time, in the dream, I am totally aware of the miracle that has happened. It is bizarre to say the least.

It usually takes me a minute when I wake up to realize it was really all a dream. Then reality hits. Sometimes it leaves me feeling a bit sad but usually I just think that it was great while it lasted.

Then today, I got a phone call. A very unexpected phone call. A lady in town that I know but not really well called to tell me she had a dream about Tess last night. It sort of caught me off guard but in a good way. She told me that she dreamed that for some reason she and a friend were taking care of Tessie and Tessie wanted to do something but they said no and then Tess disappeared for a bit (She laughingly told me that apparently they were not great babysitters) and then they found Tessie doing the thing that she had wanted to do. She said Tessie was talking and walking and bright eyed and alert.

But what struck me most of all was that she said that Tessie's voice sounded exactly like she had imagined it would. Yet she doesn't really even know Tess. It was so odd but comforting to me and I am still not sure why.

Part of me thinks it is because her dream is so similar to everyone else's. Again, even though she doesn't know Tessie. But the bigger comfort to me is that last statement..."she sounded just like I imagined she would."

I love that. I love that Tess has touched people that I probably would have never suspected. I love that she knows what Tessie's voice would sound like. I love that she called to tell me. She didn't have to and might have even felt a little embarrassed (I hope not) to call me out of the blue to tell about her dream.

Most of all I love that my dreams for Tessie are other people's as well.



Sweet dreams everyone.....

Tuesday, June 21, 2011

Happy Birthday Tessie....

Okay everyone. It's been a whole year since my whiny post about Tessie's birthday. And it is facing me head on again tomorrow.

The good news? I think that I will be okay. Not sad or full of self pity and what-ifs.

Just grateful. Grateful that she is alive after the winter we had. We nearly lost her in February to Influenza B and pneumonia. That is not an exaggeration. It is illnesses like that that kill kiddos like my Toodle Bug and she was one sick little girl. The sickest I had ever seen her. Even her normally jovial, goofball pediatrician looked worried. Not to mention the awful seizures that have only gotten worse as the year wore on despite our best efforts to thwart them.



It is also going to help that I am not going to do a kid party. I have decided to just do a family party and the only non family member invited will be Autumn who is a little girl in Tessie's class, that from day one has taken Tessie under her wing like a little mother hen.

And surprise of surprises? I have no guilt about not having all the kids in her class come. None. While Tessie likes the kids, she does not like the chaos and will make herself go to sleep and miraculously wake up just as soon as the last child has left. She will be happier with just our family and Autumn to celebrate with her. And so will I.

The next morning....

I wrote the above last evening and now it is morning. Officially Tessie's 8th birthday. I feel even more grateful today. I am not sad. Not feeling sorry for myself. Just grateful.

At 12:04 a.m. this morning, just the start to the Toot's birthday, her oxygen alarm woke me up. I looked into the baby monitor and knew things were going to hell fast. She was seizing. Well, happy freakin' birthday.

Charlie and I did the usual with oxygen, emergency meds and waiting. The seeminlgy endless waiting. For 20 minutes she seized. And I was pissed. At God. I had gone to bed and said a little prayer for Tessie and specifically asked God for some help in the seizure department. This was His answer? Really? I have a pretty strong faith in God but boy oh boy, it gets tested on a regular basis and all I could think in my exhausted and scared mind was,"This is a cheap shot, God."


So Tessie finished off the night in my bed. She will most likely have a groggy, sleepy birthday which makes me even more sure of my decision not to have a kid party. I am going to make a Spongebob Squarepants cake and a Patrick Star cake. I have all the necessary Spongebob decorations and even a wall covering to make the room look like Bikini Bottom complete with all the characters from the show.

And my little diva picked out her own birthday dress in TJMAXX. I gave her two choices and she very quickly and surely chose the frilly, flowery, orange dress. Isn't she just too smart? I think so.



And I feel better this morning. I am not angry at God because, in my not so exhausted mind, it hit me...

God isn't the one who gives out the seizure card but He can sure as shooting help you make sure you come out the winner in the hand that was dealt.

And through it all, Tessie is a winner...and so are the people that are lucky enough to be a part of her life.



Happy Birthday Tessie!!

Sunday, June 5, 2011

Baby on Buh....

Tessie is about to have a baby brother and she is going to be pissed!

No, Thank God, it is not me who is about to give birth. It is Tessie's beloved Buh.

Tess thinks the sun rises and sets directly over Buh's head. Tess also thinks Buh is all hers. Little does she know her whole world is about to be rocked by a teensy, tiny little baby boy.



I've already informed Buh that when she first brings the baby to meet Tessie that she cannot be holding him in her arms where Tess can see. We will have to do the old bait and switch. Distract Tess until I can take the baby and then Buh will go get Tess.

Seems a bit over theatrical, doesn't it? But trust me, it is the way it has to be. When Buh, and her ever growing belly, arrived yesterday to visit we decided that Buh could no longer safely and comfortably hold Tessie in her lap so I held her while Buh sat right next to us. No dice. Tess kept looking at Buh as if to say, "hey, YOU are supposed to be holding me! Don't you love me anymore?"

Tessie's pitiful and confused little face got the best of us so we rigged up a place right next to Buh where Tessie could sit with Buh's arms around her and her legs draped over Buh's lap so that she felt like Buh was holding her.

It was if the sun had just come out after a long rain. Tess was in bliss. There is no other way of describing it. She looked at Buh, then me to make sure I understood how very, very thrilled she was to have Buh and not me holding her, and then ever so lovingly gaped at Buh with a big goofy smile on her face.

I am sure the angels were singing while unicorns danced and harpists played a sappy tune somewhere in Heaven because that is how Tessie looked at Buh.



It is a good thing I am a secure person because that kind of complete adoration directed at another person might make a less secure person feel, ahem, a bit jealous.

But this bliss cannot last. Buh is about to have her own baby. Tess is not going to deal with this very well at all. Tessie's saving grace? Buh loves her like her own child so will make very sure that Tess feels extra special.

In fact, Buh has often said that she is very happy that her baby is a boy so that Tessie can still be....wait for it.....

"Buh's FAVORITE little girl!"....

Thursday, May 19, 2011

Lazy Days...

I have been very remiss in the blogosphere department. What can I say? Uninspired. Writer's block. Too busy.

All lies. The truth is...laziness. Pure and simple. I blame it on this seemingly endless dreary weather. But then I check my blog's dashboard and there are new posts from other blogs that I am following such as Amy Wadsworth's (an awesome post by the way) and Meg Lyons' (which led me to feel even lazier because I am a crafter in my fantasies but not in reality and she is an awesome one, probably in both).

So I am inspired to at least catch up a bit on the Travels with Tessie.

The biggest happening was our recent victory at the Special Olympics Track and Field meet in Rockland a couple of weeks ago. That's right...not one but TWO blue ribbons for my Toodle Bug. Can you guess the event she got those in?

The 10 and 25m dash. As in running. I know it is the ultimate politically incorrect admission, but I shake my head at the irony of it. I mean really, Tessie sat in her wheelchair while a friend of my family pushed her on to victory.



And here is where it gets really bad for me. I actually was sizing up the competition before the big race. I had Doyle (the 12 year old in charge of pushing Tessie's wheelchair) join me in a pre-race huddle to confer on whether or not he had it in him to push Tessie faster than the lady who was pushing the other little girl. He did a quick sizing up of the lady, nodded his head and whispered, "Easy". I clapped him on the back and he and Tessie headed off to race.

What happened next is to my ultimate shame but I blame on temporary insanity because I tend to lose myself during any type of competition (I do love to win...it is a sickness). Charlie whispered to me and Doyle that we should let the other little girl win the next race. What??? I looked at him like he had just dropped in from Mars and sort of shrieked "No way! We came to win!" I looked at Doyle and gave him "the nod" that clearly said "Go for it. I want that blue ribbon." Charlie shook his head and sort of walked away from me. I know, I know. Even now, I shake my head at my selfishness.

Doyle ran like the gates of Hell were licking at his heels. When I laughingly said as much to Kris, her response was, "They are and it's you!" She might have been right.



At any rate, Team Tess and Doyle won again and I cheered and clapped like the fool I was.



Despite my extreme selfish behavior, it was a great day. The first and second graders came to cheer on Tessie and another VH athlete, while the older kids came to cheer on a middle school student. And it was so fun to watch them take blue ribbons in their events as well.

So, upon reflection, perhaps it wasn't laziness that prevented me from blogging. Perhaps it was just a wee bit of shame at admitting my bad behavior at , gulp, Special Olympics of all places.

Ah well, as my Aunt Evvy used to say it takes all kinds to make the world go round and if "we all preferred Corn Flakes there would be no Shredded Wheat".

Friday, April 22, 2011

Don't drink the kool-aid...

Disabled; incapacitated by illness or injury; also : physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education

Mental Retardation; subaverage intellectual ability equivalent to or less than an IQ of 70 that is accompanied by significant deficits in abilities (as in communication or self-care) necessary for independent daily functioning, is present from birth or infancy, and is manifested especially by delayed or abnormal development, by learning difficulties, and by problems in social adjustment

Potential; someone or something that is considered a worthwhile possibility

The first two words are what I hear on a relatively frequent basis in regards to The Toots. Especially at doctors, therapist (PT, OT, ST, etc) visits. They are the words that people want to use to define her. Give her a label so that they know where to put her in context to their perspective worlds. She is not "normal" yet has no known diagnosis and thus no expectations as to what she can or will do in her life. Therefore, Tess is always defined by the words disabled and mentally retarded.

I am just as guilty of this as anybody. I am not proud to admit it but in my defense, perspective is easily lost when you are in the never ending grind of daily living. Especially when you see very little change and mostly the same old, same old every single day.

I used to say that someone had to be the realist as far as The Toots was concerned. Instead, what I think I have done is given up. How is that for an admission? Given up on your own child. And what makes it worse is that if it had been Blake or Ellie that was in need of some extra pushing and some tough love, I would never give up. Why? Not because I love them more or want more for them. The answer is very simple. Because they are "normal" which means I would know for sure that progress could be made.

So if you really think about it, I had sort of given up on the child that needed me to stay positive the most. The child who cannot speak for herself and say to me, "Mom, don't give up on me ! I'm in here. I can do this! Just help me to learn it."

Of course I am being somewhat dramatic when I say "given up". I in no way mean given up on Tessie. On her life. On the value that I know she has to offer the world. I am her biggest cheerleader and advocate when it comes to that. What I mean by "given up" is on her ability to make her own little world more powerful. Independent. Fulfilled. I drank the Kool-Aid so to speak and bought into the party line of "She will never be able to walk, sit, move or .....fill in the blank here, on her own." I got overwhelmed, tired and complacent. Her father never did. He has alway maintained that Tess is a "late bloomer" and is constantly coming in to her own. Not me. I had accepted the "reality" and thought it was just about time he did to.

Then, last week, I got a much needed wake up call. A very highly regarded physical therapist and her students at UNE asked to get a chance to meet Tessie and use her as a "patient" for training purposes. They saw Tessie lying on a mat and all thought the same thing. "She will never be able to...."

Then they started working with her. I cannot tell you in words how absolutely amazing my Toodle Bug was. She worked so hard and at one point the professor had her "walking". She held Tess at her hips and gently positioned her so that Tess could work her legs. It took some time for Tessie to process what she was supposed to do but she did it. With the professors help, my Toodle Bug WALKED several feet. I get teary thinking about it.

And she was so proud of herself! The whole class got caught up in the thrill of it and was cheering and clapping and my Tessie was grinning and looking at everybody as if to say, "That's right folks. I got this!"

After they did some therapy on her they let her rest and started talking about what would they do for her "plan of care" if they were her therapists. This was the part where I expected to hear the usual song and dance about putting her through range of motion and some basic exercises (even though I had just seen her do so much more). This is what I got instead:

"Tess has so much potential. I think at the least she could sit independently and probably walk some day."-from the professor

"I can't believe the potential she has just shown us. She can get this. It will take a lot of work, but she gets it. She attempts to do what we ask her and remembers it the next time."-from the students

"Thank you so much for bringing her today. She is amazing. Her potential is huge! What can we do to help?"-from everyone

With that one little word, potential, I felt like something that had been ripped out of my heart had just been put back in. I realized how much I had let Tessie down by not seeing this for myself and vowed to never let it happen again. I got my focus back. I am seeing Tess clearly again and not through the eyes of others and what they want to tell me will never happen.

I've got news for them:

My Tessie is amazing. Maybe she will and maybe she won't do certain things but it will no longer be because someone else told me so.

Tessie is full of potential and I will never forget that again....

Saturday, April 16, 2011

Faith in Humanity...

Tess met the Easter Bunny the other day.

Sheila and I had taken the kids (Blake, Bobby, Ellie and Tessie) to the mall to shop for the afternoon. In the middle of the mall there was an Easter display complete with the Easter Bunny and kids could have their photos taken sitting on his lap.

In the past I have tended to shy away from this type of thing with Tessie because it can be awkward to try to explain to the person in the costume how they have to hold Tessie and that she can't talk and I worry that they might not grasp the severity of her disabilities and could drop her or, and for whatever reason, I think to myself, "What if they aren't comfortable holding her and wish I wouldn't have her do it?". That is the biggest issue if I am to be brutally honest.

"What if they don't like her?"

But, I am pleased to report that I am getting past some of my issues and I marched right on up with Tessie to that Easter Bunny and very quietly leaned in and simply asked them if they were okay with her sitting on their lap or would they prefer her next to them in her stroller (I did go through the explanation of her disabilities) ?

The Easter Bunny assured me that they were absolutely fine with having her on her lap (it was actually a woman) and then went on, when they saw my fear about Tessie getting dropped, and told me that she actually worked with kids with special needs.

Their are no words to describe the relief that I felt. This person had no qualms whatsoever and was so incredible with Tess. I had Blake, Bobby and Ellie get in the photo as well and they all worked to try to coax Tess to look at the camera.

Let's just say, getting a really good picture of Tessie is a trick and a half, especially when she is as enthralled with something as she was that bunny. She just could not stop looking at it and touching it's "fur" and it's pretty bow tie (I think she even leaned in to try to kiss her at one point). It was beyond adorable.

We got a semi-decent photo fairly quickly and so we had Tessie say good-bye to the Easter Bunny and put her back in her stroller while they waited for me to pay. During this time Tessie started screeching her happy sounds and kept looking over at the bunny. She just loved it! And Tessie can get LOUD when she feels so inspired.

After I paid we waved one last good-bye and continued shopping. A little while later, the Easter Bunny was going on a break and was walking through the mall and saw Tessie and made a beeline right for her. Tess was so excited. The bunny played with Tess for a minute before continuing on.

About a half hour later someone came up to me and tapped me on my shoulder. "Are you the mother to the little girl named Tess?" I was sort of taken aback but nodded and said yes. She then went on to tell me she was the woman in the Easter Bunny costume and how happy she was that we brought Tess in to have a picture with her and how beautiful she thought Tess was.

Talk about making a mother feel good! I felt like skipping I was so happy. I smiled and thanked her profusely for her kindness and her taking the extra time for Tess. She informed me that she was thrilled to have been able to do it.

So I guess the point of my little rambling today is, never lose your faith in humanity.

Or the Easter Bunny.....

Thursday, April 7, 2011

Raising an Olympic Champion...

As many of you already know, I am the proud mother of an Olympic Champion. I know, I know, only seven years old and she is shining like a star! She should be on a box of Wheaties for Pete's Sake.

I, of course, am talking about my Tessie Toodles and her stellar performance at last November's Special Olympics.

Her category? Bowling-with assistance

Her placement? First Baby!

That's right. Out of 82 kids, my Toodle Bug placed FIRST out of everyone there. In all categories. I framed her blue ribbon.

Ellie went with us as did Sheila. I was nervous about going because I, in all honesty, could not even begin to imagine how a child who could not even hold a ping pong ball, would possibly be able to throw a bowling ball down a lane...from a wheelchair. I almost didn't have her go. I know, I know. My issues were getting in the way once again of what was really important. But I sucked up my fears of the unknown and went.

It was so much fun!

The energy there was total excitement and happiness. The kids were so proud of themselves. They cheered loud and proud for ALL the athletes no matter what place they took as far as ribbons went. And there was none of that petty nonsense that comes from the adults that you see at so many sporting events. Everyone just wanted everyone else to have fun.

Tessie was the only kid there in a wheelchair and with such severe disabilities so I was filled with anxiety at first. I said to Ellie (who went with us to cheer her little sister on and to help), "I think Tess is the most disabled kid here." Ellie looked around and felt the same way. I'm sure it sounds like we were being shallow or something but it wasn't that. It was an indescribable feeling that you have to experience to understand, I think. Almost as though, even in a place where everyone has a disability of some sort, Tessie was still out of place because hers were so severe in comparison. We just wanted to fit in in a place where we thought fitting in wouldn't even be an issue.

Then, further down the lanes, we saw another, older child in a wheelchair who needed as much help as Tessie. Ellie and I both just looked at each other and were relieved that Tessie did fit right in after all. And I know, she fit in all along and it was our issues and blah blah blah but you just can't help how you feel and Tessie and the situations we sometimes find ourselves in with her come with a whole host of feelings that we just have never had to experience before.

Anyway, I was still trying to figure out how Tessie could realistically participate but they were all over it. I wish I was savvy enough to post photos on here but suffice it to say that we positioned a long piece of wood shaped to hold a ball, against Tessie's lap as she sat in her wheelchair and had her push the ball which would then roll all the way down the lane to the pins.

Ellie helped position the tray and then helped Tessie place her hands on the ball and away it went. It was actually quite hard not to get caught up in the excitement of it all. I found myself cheering and yelling and clapping and laughing as Tessie got spare after spare. It was awesome. Ellie was cheering. Sheila was cheering. Tessie was laughing. And believe it or not, I was totally in my element.

Of course Tessie's high score might have just a little something to do with the precision with which Ellie positioned that wood (and she REALLY wanted Tessie to win) but hey, whatever gets the job done, right?

Tessie did need a bit of a break after a while but then went right back at it.

At the end of the morning's events the ribbons were handed out and everyone got something which is nice in this type of situation. But, at risk of sounding like a real jerk, I want to remind you that Tessie got a ribbon. A blue ribbon. A first place ribbon.

So now we are gearing up for another showing at the Special Olympics. Tess has been entered in the 50 yard dash with assistance (or some sort of race) and the softball throw and will probably be in a few other events. Both Blake and Ellie are coming with us this time to, ahem, help....and cheer.

I am excited for the games and for Tessie to be able to show her stuff.

After all, she is an Olympic Champion...