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.....

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...

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.....

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!!

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!"....

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".

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....

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.....

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...

Memories....

Today is my Aunt Sharon's birthday. She would have been 68.

She was awesome.

i have so many memories of Sharon. I spent A LOT of time at her house when I was little. I always thought she was just so cool. She had the best food and drinks. She always had Captain Crunch, Coca~Cola and Reese's Peanut Butter cups in her freezer. Always. For a kid who only got "healthy" cereal and not much junk food in the house, Sharon's house was like an oasis in the desert.

I clearly remember being about ten years old and having to stay home from school because I was sick. My mom worked and my dad lived on the mainland so Sharon brought me to her house to keep an eye on me. It was the best week of my childhood. I swear to God. She let me eat whatever I wanted and bought me new crayons and coloring books. I got to watch any show on TV and the piece de resistance? She let me roll up her loose change and I got to keep all the money I could roll.

I was a rolling fool, let me tell you!

When I was eight we all went to Florida. There was Sharon, her kids David, Teresa, Heather, Justin, then my mom, my brother and me. It was a great trip even though both Heather and I got the stomach flu as soon as we got there. What stands out the most is one of the nights we were all at the hotel restaurant and my mother wanted, yet again, another group photo. All of us kids moaned and groaned and were being really grumpy brats about it when Sharon took one sweeping glance around the table giving us all "the glare". We instantly turned toward the camera and said cheese as if our lives depended on it. Sharon had the best glare. Worked like a charm every time.

But, aside from my sick week, my favorite memory of Sharon is the trip I took to NYC with her, Heather, and Ann back in June of 2001. Only two and a half months before September 11th. We ate our "dress up" meal at the former Windows on the World restaurant on the 103rd floor of the Twin Towers. It was incredible. The whole trip was a laugh a minute right from the get go.

It started when we were on the bus driving to NYC. There was only a handful of us on it at this point and pretty much everyone besides myself and Heather was asleep. I looked out the window as we drove into the state lines of NY and saw a man driving next to us who was, how can put this delicately, um....well... jerking off. That's right folks. He was looking up at me, smiling and servicing himself. Of course I just cracked up and smiled at him and took his picture while giving the play by play to Heather. She did not believe me until I told her that he was either pleasuring himself or he had the biggest thumb in the whole world. She leaned over me to take a peek and we laughed so hard we woke up everyone on the bus including Ann and Sharon who looked at us like we had just lost our minds.


When we got to NYC we had lunch at Planet Hollywood and the waitress pointed out that Tom Arnold was there. Yes, we were pathetic enough to get excited about it and strategized as to how we could "accidentally" bump in to him and maybe get a picture. Everyone chickened out so when we got up to leave I marched right on up to him and point blank asked if he would take a picture with me. He was very nice and agreed right away and then, seeing the "chickens" clucking anxiously behind me, asked if I would like to have them in the photo as well. "Nope" I said right away. "They were too scared to ask you so they don't get to." I know, I know, I am an awful witch at times. So I took my picture and then grudgingly allowed the girls to get in one. I love that group photo though. I am so grateful to have it.

Next we took to the mean streets of the city. I was in hot pursuit of a Kate Spade or Coach purse. Well, I found a guy and actually followed him into an alley with him lugging a duffel bag filled with purses (Ann though dead bodies). Heather stopped short and Sharon outright refused to go. I believe her exact words to me just as I rounded the corner was "What the hell are you thinking, rabbit?" Ann faithfully and fearfully followed me. I bartered with the guy after perusing his wears and got him down to fifty bucks for two purses. As he agrees to this price, Ann hysterically shrieks out "SIXTY FOR TWO!!" I looked at her and said, "Will you shut the hell up?! " She just wanted out of there before he pulled a gun on us but I was determined to stick to my price. I held my ground and we walked out of there with two lovely fake bags for fifty dineros.

Meanwhile, Sharon was puffing nervously on a cigarette and Heather kept peering into the alley to make sure we were still alive. We left and tried to find a spot to eat. We ended up at some hole on the wall in the upstairs of this dive bar and Sharon and Ann instantly ordered drinks. Strong ones. Once again, Heather and I were in gales of laughter and even Ann and Sharon got cracking up at my insane and nearly suicidal need to have a NY bag.

We then decided we needed to go to FAO Shwartz and get something for the kids we'd left back on the island. As we were leaving, outside a concert was being put on. Naturally Heather and I wanted to see who was performing. Remember The Thong Song by Sisqo? Yep, that was our concert. But Heather and I loved it and sang and boogied away while Ann and Sharon looked on in utter amazement at this four foot black man dressed in read leather from head to foot singing into a dragon microphone about "that Thong, tha thong thong thong".

On to get Heather's New York hair-do. She had made an appointment before we left and insisted that she needed a NY do. We all piled into a cab, Heather in front and me squeezed in back next to Sharon and Ann. We were getting further and further away from the main hub-bub when I piped up and asked if this was a safe part of town?" Sure lady." My next question then was well where were all the taxis? I had always heard that if you are in NY and you do not see any taxis then get the hell outta there ASAP! The cabbie was getting annoyed with me by this point but I was not about to let up. The freakin' buildings were all burnt out and there was graffiti everywhere for crying out loud. The only normal looking place was the "salon" where Heather was supposed to get her hair done but it was surrounded by practically rubble. I refused to get out of the cab. I looked at Sharon, who had by this point lit up a cigarette and said, "Aren't you scared? Do you really want to get out here?" She answered that she really did not want to get out so I told Heather that I was not willing to get killed for a hair-do ( a fake purse, yes. Hair-no) and then told the cabbie to step on it. He was really pissed by this point and asked where he should take us. "Well, I don't know! Where would you take four white women who do not want to get raped, mugged and/or killed?! Take us there!" I shouted at him. He dropped us off in Greenwich Village.

Another laugh riot ensued.

We did all the toursity things. Empire State building. Battery Park and Statue of Liberty. The Today Show. Everything. It was so much fun and every single time I think about that trip I smile. Every single time I think about Sharon I smile.

So today especially, there are a lot of people missing her. I hope that some of them will read (and to Heather and Ann, remember) this post and that it will make them smile too.

At least they'd better smile! *insert Sharon Glare here*...

Blake Leigh the Buttercup Girl...

...the prettiest girl in the whole wide world.

Charlie used to sing that to her when she was little.

Anyhoo....

Blake informed me the other day that a) when I had cursive type as my blog text that it was too hard to understand and b) I had written posts about Ellie, Bina and Bobby and only wrote a semi-embarrassing, funny tale of her from when she was little.

Point taken.

Blake is my mini-me. She looks quite a bit like I did at her age (albeit a much prettier version) and she has my sick sense of humor. When something happens on TV or someone says something, we can just look at each other and KNOW what the other one is thinking without saying a word. She has my competitive desire to win as well as the more random things such as my love of reading and then re-reading a particularly good book. She is responsible and very smart. Just an over all great girl. And she was a God-send to me after the Toots was born.


Blake had pretty much just turned nine when Tessie was born. She was super excited and had none of the concerns that Ellie had weathered through. After all, Blake had already had to deal with a baby sister stealing all the attention. Plus, she was old enough now to really want to help and start her training as a "real" babysitter.

When we brought Tessie home I had stopped into Sheepscot River Pottery Shop and bought both her and Ellie charm bracelets that had charms on them that read, "believe in yourself" and "dream big" and things of that nature. I wanted something special that was just for them from me and the hubby that had nothing to do with the new baby.


And to refresh your memory, at the time I had cancer but had not been diagnosed yet however I felt so sick almost all of the time, and to have Blake be right on task with whatever Tessie needed was just an unbelievable help. I think back on that time now and it is such a blur. I really have very disjointed memories of when Tessie was an infant. But I do remember Blake helping me take care of Tessie.

Blake helped me all the time. Day or night. Literally. If she heard Tessie make noise in the baby monitor, even in the middle of the night, Blake would run down to Tessie's room to check on her and make sure she was okay. She would heat up her bottles, carry her to the changing table for me, and basically be a second mother to the Toodle Bug.

Sort of bitter and sweet at the same time, I know.

I used to worry that maybe Blake would end up resenting the time she spent as the "little mother" to Tessie. That she would think that I let her take on too much. Then, when Blake was twelve she wrote these two poems during poetry week at school and I realized that the experience had only made Blake a better person. One who appreciates people and things in a way that maybe she never would have before. That maybe none of us would have without our little Toodle Bug to help us learn through our challenges...

Tess by Blake (age 12)

The baby I cradled in my arms,
jingling with the sound of my new charms
that my parents got me after a week away.
What was wrong with my sister? They couldn't say.
Was the girl going to be alright?
With a bandage on her head, what a sight.
A little later I asked what had happened.
At age nine how was I supposed to understand?
It was a traumatized birth, so much had gone wrong.
My mom and dad had to be so strong.
But I had to be strong too.
My mom was sick. Her back was a mess;
so it was up to me to help take care of Tess.
Got her up and carried her around,
went and checked on her at every odd sound.
We still struggle through hard days.
Going through it together, it's our family ways.
Appointments, therapy, and operations each week.
Sounds bad, but hey, it's our lucky streak.
She's finally getting what she needs:
tubes in her ears and stomach where she feeds.
She's got Cerebral Palsy which causes
seizures, low muscle tone, and mental retardation.
Lot's of bills with all the new medication.
But Like I said we get through it all.
Help each other up when we fall.
She's getting better, everyone can see.
She's doing her best and being the best she can be.
Sure, she can't walk, she can't talk, she can't eat.
But she smiles and giggles and kicks her small feet.
Just seeing her once will make you smile,
and give you the courage to go the extra mile.

My Life by Blake (age 12)

I hear the busy bustle of my mother cooking,
voices of my dad and Ellie outside.
I listen to the faint echos of Tess coming through the baby monitor,
and the hum of the peaceful music playing downstairs.
I feel the click click click of the letters on my keyboard.
This is my home,
my life,
my family.
I love it.