Tuesday, November 30, 2010

Dear Santa...

Dear Santa,

I have a few things that I would like you to bring me for Christmas this year. I think that I have been a pretty good girl so you should definitely find my name in your list under NICE.

Okay, okay, so maybe I got mad at my kids for no good reason a few times and maybe, just maybe my hubby got the brunt of my stress and frustration every now and again. And yes, I love to tease people and I do whine some and feel sorry for myself every now and again. And that little road rage issue, well, what can I say, some people just really need to be flipped the bird every now and again. Still, I think overall I have been good so here are my Christmas wishes...

Please find a cure to seizures and give it Dr. Ann Bergin at 9 Fegan, Childrens Hospital Boston. If that is impossible, then please bring Tessie a seizure service dog to alert us when she is about to have one so I can shower or make dinner when I am home alone with her.

Please help my hubby get our new (now ten year old) house finished. He has worked so hard and been thrown quite a few, very unfair, curve balls so a little help in that arena would be very much appreciated.

Please leave, in my dooryard, a handicapped accessible van. Tessie is getting so big to lug in and out of a car seat and it makes it dangerous for her and the carrier. Insurance insists that this is not covered under their 'durable medical equipment' policy even though it is MEDICALLY NECESSARY.

Please make our home handicapped accessible as well. Your elves should be able to pull that off without too much trouble. Aren't they quite handy with tools? Insurance refuses to pay for "luxeries" such as this. Once again, even though it is most definitely MEDICALLY NECESSARY.

Please bring Tess a new wheelchair because she no longer fits properly in hers and insurance doesn't seem to agree that children will grow in a four year period.

Please bring me EVERYTHING in the Pottery Barn catalog and if it wouldn't be too much trouble, bring Nate Burkis to decorate.

Please bring me John Travolta (you know why) ;)

And most of all Santa, please help me keep the Christmas Spirit even when everything seems overwhelming and impossible. Help me keep my sense of humor and love of everything Christmas.

Hhmmm...I just reread my wishes and on second thought, Santa, you can scratch me off your list this year after all (except for that last part). I just realized I already have everything I really need.

I have my faith, my family, and my friends. And if we are to believe all the corny cliched Christmas movies, and I do, then that means I have everything.


I still believe in you Santa,

love, ~J

PS maybe keep John Travolta on there. 'kay?...

Sunday, November 28, 2010

I heart NY;The Sequel...

I am going to be turning the big 4-0 in about a week and for this momentous occasion, my dad is paying for me to go to NYC. A bunch of girlfriends will coming as well and I think it will be a blast! But....

I have to leave the Toodle Bug behind.

This is already making me start to get teary when I think about it. And to let you know the seriousness of my despair, I am NOT a crier! I have never left her for more than a couple of nights since she has been born. I am torturing myself with endless questions and what if's.

What if she gets sick before I go? Will I still go? I keep saying that I am going unless she is actually in the hospital but could I really leave her if she were sick? What if she gets sick while I am gone and she wants me to comfort her and snuggle? Should I call and talk to her on the phone or will that only make her miss me more? Will she understand why I am not there? And the biggest and worst question I keep asking myself, will she think I have simply abandoned her? I know that sounds quite dramatic but how am I to know. I will explain to her that I will be back in a few days but will she understand?

ARGGGHHHHH!!!

Leaving Blake and Ellie was never this hard because they could talk to me and let me know that they understood I would be back. That my going away was only temporary. They could tell me that they missed me. But Tessie can't so how am I to know what she is thinking and, for that matter, do I really want to know because if I did I probably would just stay home.

While I am very excited about going and yes, even getting away from all the daily stresses that my life now has, I will be glad when it is over and I am home. But I am used to having these conflicting emotions. I have learned that they are all part of life with a child with special needs. Joy and sadness, pain and pleasure, pride and yes, even embarrassment (again, not by Tess but by things that she can do at very inappropriate times), all experienced almost simultaneously at times, to the point that you don't think you can take any more.

But you do.

And so I am going to my favorite city in the world. The Big Apple. I will have a great time with great people and be very glad I went.

I will also pay dearly for daring to have the gall to leave The Toots. She will probably refuse to look at me when I first get home and then she will look at me and cry like her heart has been broken. And I will have to deal with the fact that I was the one who broke it. I will have to sit and snuggle for quite a while in order to be forgiven and I will feel like a total selfish jerk because I put her through it.

What she will not tell me is the awesome time that she had with Sheila and Leo while I was gone. How they spoiled her rotten and took her to see the Christmas lights and Santa Claus. How they let her watch her favorite movie over and over again. How she got to sleep with Sheila every night.

No, I will only get the guilt and like the world's biggest sucker I will fall for it.

However, I comfort myself with two undeniable facts:

Tessie knows how much I love her and, I get to go to NYC during the Christmas season which I have always wanted to do.

Anybody got a spray can of Guilt-Be-Gone?...

Sunday, November 14, 2010

Kids say the darndest things...

We go to my hubby's mom's house for Thanksgiving every year. The only year that we missed it was Tessie's first Thanksgiving and I was so sick that I just couldn't conceive of traveling over the holiday.

I have a love/hate feeling towards Thanksgiving. I hate the getting ready, packing for Tessie, dreading the weather, making the desserts and so on. But once we actually get there I am fine (plus we always go to the movies on Thanksgiving afternoon. And Blake and Ellie absolutely love going. It is their tradition and basically all they have ever known. It just wouldn't be Thanksgiving for them if we did not see The Reidys...and oh my God, are there a lot of them!

My hubby is one of ten kids. That's right, I said ten. You can do the math when you figure in spouses, partners, and kids. That's a whole lot of Reidy. And for some of us, it will be one of the very few chances we get to see each other throughout the year. And the cousins (our kids) really enjoy seeing each other and the fact that they don't get much of a chance otherwise makes it that much more special.

They have been known to regale us with jokes, songs and even little skits that they made up while the turkey cooked and the finishing touches were made to the dinner. They will rummage through Grandma's dress up box and appear in full costume, complete with wigs. It can be quite funny.

Because we don't see each other often, it can be quite awkward for the kids to interact with Tessie. They are just not sure how to talk to her and include her.

Last year, I was sitting with Tessie in the TV room with a few of the other kids while we watched a kid movie. I wanted Tessie to feel like she was with the kids and that is what they were doing so I brought her in, and because she can't be left without and adult, I stayed in the room.

As we were sitting there I saw my niece, Katie, kind of sidle up to Tessie. She dragged a little chair over next to the wheelchair and plunked down. She was acting a teensy bit unsure so I pretended that I wasn't watching because I think it makes kids more nervous when they feel like their every move is being observed by an adult. Plus, I wanted to see what she was going to do because it was clear that she had some kind of plan.

The next thing I knew she was sitting right beside Tessie, sort of leaning in to be closer and had taken Tessie's little hand in hers and was very gently rubbing while quietly talking to Tess. It was beyond adorable. And it made me want to cry because she was treating Tess like a friend and not talking to her because an adult told her that she should. But what happened next made me want to bawl like a baby and laugh hysterically all at the same time.

Katie, still holding and rubbing Tessie's hand, looked at me and out of the blue said, "I love Tessie. She is a really good listener and she never interrupts you. And her hands are so warm and soft." Then she went back to watching the movie, still sitting with Tessie and holding her hand. It was one of the sweetest moments I have ever experienced with Tessie because it was so unexpected and innocent.

And with that sweet little observation, Katie reminded me to fully appreciate all that Tessie has to offer and not dwell on the things she can't do. That sometimes the littlest things are the things that we may need most of all...

Someone to listen to us without interrupting and a warm hand to hold...

Saturday, November 6, 2010

Fire in the Hole...

I was home alone with The Toots the other day enjoying a cozy afternoon with Christmas music blasting, a good book and a roaring fire in the woodstove when I heard a strange sound. Sort of like an animal scuffling on the roof. I looked at Tessie and asked her, "What was that?!" She looked back at me as if to say, "Who cares. The real question is, why isn't Spongebob playing on the TV?". We shrugged it off.

I went back to enjoying my book when I heard the noise again. Louder. I looked up at the ceiling then at the woodstove. Nah. It couldn't be a chimney fire. It was probably a squirrel or raccoon that had gotten trapped inside the chimney. Besides, didn't we have enough to deal with? I mean really, doesn't enough scary stuff happen on a regular basis that it would sort of make you think, surely nothing else could happen. Uh huh, sure.

After a few more odd crackling and fireworky type noises, I decided I'd better investigate. I went up to Ellie's room on the third floor and did a visual sweep of the premises (doesn't that sound very professional? I think so). Nothing to report there. So I went back down to the living room, double checked that Tessie was safely tucked into the couch so she wouldn't fall off, and went out on to the deck upstairs and looked up.

Red hot embers were flying out of my chimney and onto the roof. Shit.

I went back inside and contemplated what to do. It certainly didn't seem like anything to panic about but at the same time that little knot in my stomach that always lets me know when things are going downhill with Tessie was starting to talk to me. I paced around for a minute and then went back out onto the deck. Was that a lick of flame? Double shit.

Back inside to pace, this time with phone in hand. To call or not to call, that was the question. It didn't really seem like a big deal but it also did not seem like it should be ignored. Flames should not be shooting out of your chimney, even if infrequently. Right? Right. Okay, one more look-see then.

This time I ran outside to get some perspective from the driveway. And yes, I left Toots in the house while I did this. She was not in any danger as I had made sure that my roof was clearly not on fire and there was no smoke inside my house and besides, what other option was there. I had to know.

At any rate, that sealed the deal since I saw more embers and another couple tongues of flame shoot out.

I raced back inside and called our fire chief, who just happens to be The Bean's dad, and asked him, "Is it normal to see embers and a little flame come out of the chimney?". His immediate response was, "Not usually." I then told him that I thought I might have a small situation brewing and could he come check it out without calling out the whole fire department.

I was hesitant to involve the fire department for fear that my family would get wind that they were at my house and naturally assume Tessie was in bad shape.

"Be right up" he said and told me to shut down the air to the stove. Well what a good idea considering I had the damn thing wide open to fully enjoy the crackly, pretty flames. Wow, I can be so BLONDE sometimes. I blame it on the hair dye.

By the time he arrived it had basically put itself out (not because it took him a while; it didn't, but because it was only just starting and the lack of air snuffed it).

I showed him downstairs (to my ultimate shame because it looked like an advertisement for the show Hoarders)so he could look up into the chimney and he confirmed there had, in fact, been a fire but that it was out. As a precaution, he blew chemicals up into the chimney and told me no fires until Charlie had cleaned it. No problem.

As he was leaving he said to me, "If you here a train coming call 911". I was perplexed and seeing my obvious confusion be added that a chimney fire in full flame will sound like the whoosh whoosh of an oncoming train. Got it.

So for the rest of the afternoon, The Toots and I sat and waited to see if a train was coming. None did.

Like the old joke goes...

When God was handing out brains I thought he said trains and ran to catch one. Toot! Toot!...

Let's Hear It For The Nurses...

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