True Colors-Training, Day 7

Cole and I actually stayed home this morning. Cole needed some rest and I had to catch up on some insurance, nursing, and other misc stuff. Plus, my whiplash from yesterday's track hurts like %&*#. The whole right side of my neck, shoulder and running down to my sciatic is paying me back for not holding my body the way I should have. A note to all of those getting tracking dogs in the future...hit the gym, NOW! I always knew that I needed to be strong to carry Cole around if he is seizing, but adding a strong tracking dog into the mix just ups the ante.

So, we gave Daddy some one on one training time with Slugger, uninterrupted. It seems every time he went out to practice, Cole would get in the way. They worked on tethering and behavior disruption some more and went on two short tracks. Slugger likes the game so much that he tracked the trainers just fine, even with removing Cole from the equation. That would have confused most dogs. The head trainer said that he is probably in the top 2% for tracking dogs that he has worked with.

We met up at the mall to work on some obedience, the first time tethering with Cole and to do our first indoor tracks. Cole was super overstimulated and had a small partial seizure. Then a couple of meltdowns. Slugger did awesome and started kiss, touch and nuzzle without being prompted. Cole even climbed into a small space where I couldn't fit and Slugger just slid right in there and licked Cole until he stopped and came out. AWESOME! The tethering is going okay. Cole just keeps darting and going back and forth and everyone is getting all tangled up in each other. I think that we are going to shorten the strap. Also, Slugger is a little more slow to obey since we put the gentle leader on for tethering and he is distracted. All he can think about in the beginning is getting it off. Still, I am so excited to be able to use it more.

Off of the tether, Cole showed his true colors. Giving out at the knees and throwing himself on the ground, running away, being obsessed with going on the train instead of trying to track, going into a restaurant and hiding under a table, etc. Brian and I were actually trying to put the tether strap on Slugger when he went into the restaurant and the trainer went in and fetched him out kicking and screaming. My favorite though, he climbed a ladder in the middle of a department store. An employee came up to me and started telling me, "He shouldn't do that, he might get hurt". You think? No offer of assistance or anything. It was obvious that I had a service dog in one hand and was trying to fetch Cole down with the other. Instead, he just tried to tell me what to do. Just another day in paradise :)

We also did 5 shorter inside tracks with Slugger. He got confused a couple of times. Once he got stuck in front of a display of blow-up Christmas lawn decorations. It was almost like he was thinking track, track, track, oh-this is different...what it is? Maybe I should check it out. So I had to take him back to where he left off and start again. As we continued to practice, he would get better and better. Getting to the point that he was back on his A game. However, he would always go up to the parent that was with Cole. We have to encourage him to find Cole and not mom or dad. Food....more food. This dog went through an entire bag of mini-begging strips at the mall just for motivation with tethering, the gentle leader and tracking. I think he is going to have a stomach ache tonight! I was just done by the time we got out of there. Taking Cole to the mall is always an adventure.

Tonight, we went to the home of a family in our class that lives locally. The dogs had a great time playing with each other. They all have been working hard and really haven't been able to run around.Cole stayed back to protect the candy while the other kids went out into the neighborhood to Trick Or Treat.The kids were so cute! It was so great to have some time outside of class to chat.I gave a small shout out on facebook, but I just wanted to thank Lexie, Hobo, Alfie, Starburst, Ani, Krypton, Sushi, Charlotte, Donut and their families for inspiring us-and to everyone else that we know who has gotten a service dog for their child. This experience has been so rewarding already. We hope that Cole has many wonderful years with Slugger.

Tricks With Treats-Day 6, Continued

Today we learned a little bit more about tricks that Slugger can do. My favorite is "Bang". I'll have to get a video. We all know by now that Slugger is totally motivated by food and treats. So, Halloween is an awesome holiday for him! He got lots of treats today when we were practicing all of his tricks. I am sure that he will be popular with the kids in Cole's pre-school class.

Tonight, after training, we had a Halloween party with all of the staff. Cole and Bug were quite a hit as the Pirate King and Captain Slugger. We practiced for two days with his hat, since he absolutely hates stuff on his head.Can't you just hear him think Seriously, Mom?

He kept it on really well though after all of our practice and they looked so cute! Brian of course, thinks that I am insane for making him wear it. Cole took his costume a little bit too literally and pilfered and plundered this treat bucket.Then he tried to share his treasure with Captain Slugger!Trick Or Treat!They had a small Trunk Or Treat for the kids. This was Cole's very first time ever Trick Or Treating for real. If you remember other Halloweens, it has just been too much for him. We went to two houses his first year, but he couldn't eat anything. The last two years (remember the chicken and the Scuba Diver?) were just too overstimulating. Plus, he can't have candy. Well, he shouldn't have candy. Now that he is off of the diet, this rule is not quite so strict, so Daddy gave him a little piece of the treasure.Here is what Cole thought about Halloween!
Pretty exciting.

There were awesome costumes in our class. So many, that I had to make a slideshow! I even missed a few really good ones. Like Shaggy the dog being Scooby Doo and his boy being "Shaggy". There was also a UPS man and the UPS truck. I will try and get the other kids pictures tomorrow.

Make a video - it's fun, easy and free!
www.onetruemedia.com

It has been SO much fun to be here during a holiday. It gives us an excuse to get together after class and just adds another level of excitement.Happy Howl-oween! From our Favorite Houdini Howler and the peg leg Pirate King (you think that I would have planned it, but I actually bought the costumes a couple of months ago!)

The Head Snap-Training, Day 6

We were so tired yesterday, that this is a little late!You might have noticed in the tracking videos that the trainer keeps mentioning to look for a head snap...Well, there was a big head snap today-MINE! I was doing fairly well trying to hold on, bend my knees, lean back, etc during my track, but there was one big lunge where I actually heard my neck crack :) Both of my feet left the ground, but thank goodness I didn't faceplant! Don't worry, I'm sure it will happen eventually. Slugger is one strong boy, who loves to track. He did really well on both. Brian has started to learn about slowing down, so that Slugger doesn't overshoot the scent. Um, that won't be a problem for me. When Brian is tracking, they definitely get there faster and in one piece. Hey, I can't be a foot taller, even in my mind!

We learned more about hand signals, commands for behavior disruption (love this) and practiced tethering for the first time.Here is Slugger resisting the pull on the tether and even not going for his favorite treats that I have in my hand. I think that this is one of the skills that I am most excited about! It seems that with one hand on Slugger, I have not been able to get to Cole as fast. He knows this, so he has ran out in the street multiple times in the last few days. I can't wait until we can hook them together, I can put Slugger in a down, and Cole can't really go anywhere while I am trying to do something like pay for groceries, or get something out of the car. Hooray! Cole has started taking to dragging Slugger around (with supervision, so neither of them get hurt).Slugger just complies and follows him! Now, Cole just doesn't know that the tables are going to be turned :) I think he will get used to it eventually, just like his cast.

We talked more about seizure alert. Slugger has a really tough job, since Cole pretty much smells like a seizure all of the time. He has not been sniffing him up and down like he did in the beginning, because he has just started to get used to it. We are in that place where we want him to have as many big ones as possible, so Slugger can tell the difference. It is just going to take time.

Beat Up and Bruised-Training, Day 5

I swear you need a pair of steel toed boots and a hard hat to be around kids with special needs!

Here is the short list from today-Cole kicked me with his cast. A teenage boy was playing with a wheelchair they use for training and ran over my feet, splitting the toenail on my big toe in half (this is on the other foot. The left one was split by a kid in Cole's class crunching it). I have a gigantic burn on my hand from Slugger pulling so hard across it with a leather leash that it took off the skin. My legs are sore after being dragged around by a dog that weighs just about as much as I do. After a week of being on the road, eating bad food, being on antibiotics for a tooth infection and attending training, is it any wonder that I have a massive headache that is threatening to become a migraine? :)

Brian actually got to work with Slugger a little today, after being out yesterday.Cole was always one step behind...or beside, or in front of.

Basically, he was in every one's space...including the already over-crowded cubby under the stairs!We worked on heeling with shopping carts, going up and down stairs and more place.After some class work we went on two tracks. This time, just one parent went with Cole...no trainer. Slugger did okay on his first track without the trainer there. It definitely was not as fast as usual, but we're talking about Slugger here! :) He still packs a punch and bolts really quick. I actually was holding the flexi leash, so sorry...no video. I was holding on for dear life with both hands! The head trainer who was running with me, just kept telling me to act just like I was water skiing. Bend my knees, lean back and put tension on the leash. Um, I was! At least on skis, you can dig you heels into something solid. I am thrilled that I did not face plant! This dog gets SO excited about tracking. He whines and cries, just wanting to play the game. So when he gets a chance, he's off like lightning! I had both hands on the flexi, with them pulled into my stomach, my knees bent and leaning back...and he still was taking me everywhere :) I'm sure it was comical to watch me being flung around. Brian did the next track while I hid with Cole. He came in winded, but said, "That was awesome!" Such a guy. The trainer that was running with him, came in totally breathless a few minutes later. She said that she wished she had longer legs so she could keep up! I reminded Brian that his legs and arms are longer and he weighs more than me (just by a little though). He had an easier time. All in all, Slugger did awesome. King of Tracking!

We went to a restaurant for lunch after and it was night and day with the gentle leader! He hates it, but I think I'm in love! We went back to the center and talked about things like grooming, vet care and appropriate foods and toys. Slugger was quite bored with it all after tracking.A little boy in our class asked me if he could trade dogs. He wants Slugger now :)He was loving the attention from two dogs at once.

We went to the grocery store after class. Once again, the gentle leader had transformed Slugger. He was an angel dog! Here is a closer look at it It's not a muzzle, just a head collar, similar to a horse's halter. It just gives the handler a little bit better control. You actually can barely see it, unless you are really looking for it, because it just blends in with his fur.

We are eating in tonight and hoping for an early bedtime. Brian has to go to the store and try to get my phone resurrected. It has decided to give up, and I have only had it for two weeks! I can't even make a call on it. I'm actually glad that we are not home, it snowed today. Being at camp with our Dravet friends would be awesome, but this is a life-changing experience. Just tiring. We'll send Daddy on errands. Slugger, Cole and I will hang out here and watch Maters Tall Tales for the umpteenth million time :)

Continuation of Craziness-Training, Day 4

We tracked this morning at a different park. Cole was the first one in the first group. Slugger did excellent, especially for his first time tracking more than one person. I went with Cole and the trainer, so there were actually three people to smell instead of the usual one. The head trainer called it a text book track and compared him to a bloodhound! That's our boy! Here is a video. He hesitated just a moment because we were hiding behind an asphalt machine and the head trainer said that all of the chemicals probably confused him-but just for a second.

Hear him whining? He is so excited to play the game!

The reason that we had to be the first ones in the first group is that Cole and Brian actually spent the day in Cincinnati, about an hour away from here. WHY? Well, Cole got his cast wet, again. This is the second time that we have had to re-cast. The children's hospital would not allow us to go to their orthopedics office, stating liability because we were not one of their patients. Huh? We explained our situation, was all ready to fax over records from our ortho, and they still made us go through the ER. So, I stayed with Slugger after the track and Brian took Cole to Cincinnati.It was a long day for everyone.We were actually surprised that Cole did not have a seizure. Today was his first day outside in a long time, plus it was cold. Then he was at a hospital, one of his least favorite places on earth, and in the car for over 3 hours. We also got something that was similar to alert behavior from Slugger. So, for about a half hour, we watched Cole like a hawk. Still, no seizure. We are back in that weird place again. EEG's and training seizure alert dogs are the only reason I can think of as wanting your child to have a seizure. It is the most ironic, strange feeling ever.

Slugger hates his harness and keeps trying to roll to take it off. It's just something that he is going to have to get used to. In his mind, it should only be used for tracking :) Sorry dude, you have to wear the high heels to impress the boss! We have been telling the kids in Cole's class that it is his uniform, just like a fireman has to wear for his job. Slugger had better get used to it quick, so I can show the other kids!

Slugger and I went to the mall with the rest of our class, the first real public place we have been together. I have taken him around the hotel, but this was our maiden voyage outside of the training center.He did reasonably well. He definitely needed more correction than normal. To the point that the trainer wants him to use a gentle leader in public. I thought he hated his harness, it is nothing compared to the gentle leader. He compares it to the cone of shame. Keeps trying to paw it off, rubbing it against my leg, rubbing it against a chair...he hates it. He sure acts better with it on though. Hopefully, we only have to use it for a couple of months until he starts really getting used to public work.We worked on under, sit, down and heel in the mall. I also took Slugger up and down the stairs (he did AWESOME) and in the elevator. What he did not do so great with was the people. I was constantly hearing, What a pretty dog! Oh, look-a dog! He looks like a Slugger, etc." Slugger loves praise and kept trying to go over to people who were talking to him. He also has this new habit of shoving his head and saying hello into someones private area. Yep, that's MY dog. Sorry ma'am. I was standing in line waiting to pay for some soap and he also happened to decide to go in between someones legs, practically lifting her off the floor as he went through. Yep, he's mine! He jumped up on the built in furniture at the play area and ate food off of the floor. He's a lot like Cole, looks cute and innocent, but can be super sneaky and end up getting in trouble. I have the feeling that we are really going to need to practice in the mall a lot before our public access test, since that is where it is given.

We took Slugger to a restaurant with us tonight, to practice distractions and obedience. I chose a place that had peanuts on the floor-dumb move, Nik! He also did his nice hello to our waitress, great. Overall though, the place smelled like steak, had food on the floor and was really loud. He didn't bark or go ballistic, so I consider it great practice.

We'll keep working hard, hopefully tomorrow is a little more quiet.

Track Attack-Training, Day 3

Today we did our first track with Slugger at a park. He only tracked the trainer, since it was cold and raining outside. After yesterday, and last week at school, I didn't want to push my luck on the first time. Taking Cole out would have possibly landed us into the hospital in the next 48 hours. Not worth it.

We will get plenty of other opportunity to work with Slugger and Cole in the next few days. Tomorrow, we will try again with him.

I actually went on a track with another dog in our class, Slugger's sister. Brian went with Slugger and I watched from the car. It was so fascinating to watch how much Slugger loves it.

Going back to what I said yesterday, the dogs do not realize that their child is in danger or missing. Everything is a game. Obviously, Slugger LOVES this game. He gets super excited and antsy before they let him start, and then he just takes off! He's really good at finding the trainer, because that is the only person he has been tracking since the beginning. Slowly, we will wean him off of the trainer to just Cole by having him hide with her. It made me so grateful that when Cole does slip away, as he is prone to doing, we can find him quick...instead of an hour later when Search and Rescue can show up.

We had an incredible lecture on the logistics of tracking. We learned about things like a scent cone, wind direction affecting scent patterns, temperature of skin cells and a bunch of other things that I never thought would have to occupy space in my memory :)

Here is a video of Slugger's track.
He was SO fast!

We also learned about the commands Jump, Place, Lap and Over. We reviewed heel, and everything else we have learned so far. I have gotten to the point with Slugger that I can drop the leash, walk away and he will stay! Impressive :)Really, he is already fully trained, this training is more for me to learn how to use him and for him to get used to my voice and style. He already knows everything, it's just practice for him.Don't you love his "Spread Eagle"?

Cole is getting more and more comfortable in this environment, so he has no qualms with walking right through the middle of the demonstration or going up to people and asking them to do stuff for him. I can't count how many times he interrupted the trainer or others. Good thing all of these people understand that it is not just because I must be a horrible parent. He really does have a disability that affects his attention span and his understanding of social norms.Like this, in the middle of the room, while the training is trying to teach an important concept, bringing his toys out and calling to everyone to "Look at me! This is my truck!"These two are going to get into so much mischief together. Cole has already decided that he likes to feed Slugger out of a bowl with a spoon, like a baby. Oy!Their bond is getting better. It is hard to have Cole by him in class, because there are WAY too many other cool things going on in Cole's mind. At the hotel though, with nothing else around, he is pretty fascinated with him. Now we just need to get Slugger to want to lay with him, and not me. Silly dog kept trying to get in bed with me last night! We'll have to see what happens tonight :)

Earning His Keep...Or, The Scent Of Seizures

I really feel like we have not had a lot of opportunity to talk to the other families. As I mentioned in the last post, Cole is kind of high maintenance, no surprise there. We also are the last ones to leave for lunch due to all of our paraphernalia that we cart around for our mobile ER. So, we don't end up eating with anyone else. Which is probably a good thing, since Cole has hardly had a square meal since we left home. Who wants to eat when there are so many other distractions? Having other kids around would probably add to this.

So, after class today I took Slugger outside to socialize a little bit with his friends and I could talk for a minute with a couple of the other parents before we headed back to the hotel. I was having a conversation about Dravet Syndrome with another parent when I saw a staff member running towards us yelling, "We need Slugger!". He then told me that Cole was inside having a seizure.

We had talked in class about having everything be a game for the dogs. They don't really understand the serious nature of their jobs. They have no idea that they are service dogs, or that their child is missing while they are tracking, or a seizure is life-threatening. So, I tried to hype it up and kept telling Slugger, "Let's go buddy! Let's go find your boy! Come on, good job buddy!" as we ran to the center.

Cole was seizing on the couch. Slugger kind of went up and checked it out, but was more interested in other things and probably the tense feeling in the room. We could not expect him to do everything picture perfect, like directing a movie the first time. You constantly have to make adjustments. I actually made a mistake by running in with him.

Slugger had previously been wrestling with the other dogs and then with his run into the training area, he was breathing really hard. The trainer compared it to running up to someone who just finished a marathon and shoving something under their nose saying, "Smell that!" It is impossible to smell well with your mouth open. Of course, he was panting and breathing hard after all of his activity and he could not sniff Cole up and down like he normally would have. He did not do intense sniffing, or bark.However, we do know that Slugger has the potential and capability to alert. He alerted to a little boy next to us (with sniffing and licking), who was having seizures while sleeping. Also, when Brian took him outside for a potty break he went over to a bush and was going crazy. Brian looked inside and saw a leftover seizure shirt, from a training that was going on with another group of dogs earlier in the day. Slugger had found the shirt in the bush and was behaving appropriately, even though no one had said anything about it.

We actually think that he possibly alerted to Cole's seizure. He was over by me, Cole was sitting on the stairs playing on the iPad. I had him in a down, but he jumped up and went over to Cole and started to smell him all over, especially his head and ear. We encouraged the behavior, because of bonding, but did not see it as alerting. He was acting a little different than when he had alerted to our neighbor. We happened to grab a picture.About 20-30 minutes later is when Cole had his seizure. It lasted probably around 10 minutes and was a milder tonic-clonic. We did have Slugger get up on the couch with him while he was post-ictal.The body's chemistry changes during a seizure. Sometimes, dogs can alert up to a couple of hours before. Hopefully, we will get to the point where Slugger understands Cole's cues, and we understand his. All in all though, I am grateful that it happened at 4 Paws and that the trainers were still there to walk us through it. I had a lot of questions.

Cole was already coming out of it by the time we pulled out of 4 Paws. He was asking for Incredibles, telling us what to do and drinking his milk.It seems that Slugger was totally interested in the iPad playing movies in the car. Bug (one of his nicknames) is going to have to become a Disney fan, quick.We practiced more when we finally got home. This is just as much work as I thought it was going to be.

Cole has had a great time tonight at the hotel doing things including trying to brush Slugger's teeth with Daddy's electric toothbrush and riding Slugger as he jumped off of the bed (ouch)! Slugger was great and started to kiss and comfort him when he was crying.He talks to him and wants to know exactly where he is. I think that the bonding is going well! We'll make certain that Slugger doesn't become lazy and keeps working hard ;) Our life is an adventure!

Distraction-Training, Day 2

Wow! I feel like each day is just so full of information and that we learn so much. I have also learned over the last 24 hours that we should have brought a third person! Cole is by far the "busiest" kid in the class. Most of the others will at least take breaks. Cole is constantly running around the room, through the middle of a demonstration, or just being himself-kind of crazy. Someone commented when he was sitting in a little chair, "He's sitting down!" I told her to not hold her breath, and that he would be up again soon...he was. It has been hard to pay attention to Cole, his seizure activity, the trainer, the dog, the others practicing, etc. We seem to be missing bits and pieces of info as we are switching off watching Cole, who mainly stays away from the training area. We should have brought another person to watch him while we both listened. Lesson learned. Anyone want a free trip to Ohio for two weeks to hang out with us at training?! We pay in warm, fuzzy feelings :) It is difficult, but we will figure it all out, I'm sure.
Sometimes I feel like I have a unique version of ADHD. My attention is bouncing from one thing to the next, and I miss things in between.
Where is Cole?
Listen to the trainer.
I sure like Slugger, oh-I need to correct that behavior.
Cole is over there.
I need to call the oxygen company.
What was that the trainer said about pressure on the leash?
Where are we going to have lunch? What is Cole going to eat.
I need to talk to the nursing agency.
Cole is jumping on the trampoline?! That is probably not a good idea.
Is that a seizure?
I hope these anti-biotics work, my mouth sure hurts.
So, I hold the leash like this...

and so on and so forth.
Mind you, all of this is in fast forward mode going a million miles a minute and is nothing new. It is probably why I am a great multi-tasker.
While all of my thoughts are fine and dandy and appropriate, it makes it hard to concentrate. Try being in my head when I am trying to go to sleep :)

It makes it easier to think about what is kind of going through Slugger's mind the last few days.
Who are these people?
Why are they in my house?
Why is that lady telling me what to do?
Where is my mom?
Who is this boy?
Hey, my friend is over there!
Why can't I have the ball?
Wow, he sure gives me lots of treats!
Why can't I play with my sister's bone?
What is this new car?
What does she want me to do now?!

We worked on distractions today with our dogs. We would place them in a sit or a down and then proceeded to graduate from walking around, to clapping, snapping, food, stepping over them, etc. with each different turn. If they broke the command, we corrected them and then continued the distractions. Slugger did awesome. I think that he already knows (like any kid) who he can get away with things and who he can't ;) Daddy can't help it that he has a soft heart! It is going to take some practice.We also worked on heel. Slugger did a great job. I can tell that his many months with the foster helped him to become a great, obedient dog.

I'll talk about the rest of the day in another post! This is getting kind of long...like I said, lots of information! :)

News Story - WLWT Cincinnati

Families Meet Service Dogs At Xenia Facility - Health News Story - WLWT Cincinnati
What a day! We even made the local news.

Love that Cole says, "I got treats!"

Meet and Greet-Training, Day 1

Today was the first day of training!

We obviously already love Slugger. We found out today that he was fostered by the head trainer at 4 Paws (how lucky are we?), so he has been around 4 Paws for Ability the entire time and everyone on the staff are really attached to him. They all say that he is one of their favorites :) Along with Slugger, we got to officially meet everyone else. We are already a little family. We met a few others last night at a local restaurant, but it was really nice to put every ones names to faces. Slugger is probably the largest dog in the class. Very strong, perfect for Mini Hulk. I can already see him popping my shoulder out when we track. I'm going to need to invest in a heavy duty vacuum-long, gorgeous blonde hair-hey, one of us should be lucky enough! He is motivated by food (he sounds a lot like me)! He is a really obedient guy for still technically being a puppy. I can tell that he and Cole are going to make quite the pair!

The first official Meet & Greet. We got there early, before class started, so we could see him and get a seat in the corner. Cole said as we were leaving to take our seats, "Bye Slugger! Have fun in your cage!"
First kisses. Cole wasn't too sure about everything at first, but by the end of the day he was more than willing to let Slugger love on him.Slugger already knows that Cole is where to go for treats :) and Cole is more than willing to give them.It is very important to foster their bond. Slugger will be able to perform better alerts if his bond to Cole is really solidified. Food will help us with that! Cole wears a bag of special treats on his belt loop, so he is always ready to give them to Slugger. He keeps running out! Cole just said, "He's hungry!" when I asked where all of the treats had gone. Slugger should have been born in the 80s. The fur on his ears looks like someone has taken a crimping iron to it!We went over some very basic commands today. It is important for the dogs to transfer from working with the trainers, to working with us. So we practiced sit and down multiple times. Just like any kid, they test their limits to see what they can get away with. I am trying to get the logistics of all of the commands and when to pull, when to correct, etc. I'm getting the hang of it, I think it is from riding. See, 4H really does come in handy :) The closest I came to walking my dogs as a kid, was down our driveway, for fun. It kind of is ironic to walk a dog that has 5,000 acres to roam on. So, I'm sure heel will come in nice and handy. My great dane would sit, in the front bucket seat, like a person! This is going to be such a change. Even though I have had dogs my entire life, this is a completely different experience.Cole just kept working the room, going from little group to little group. He would tell everyone, "This is Slugger. He is my friend. I love him".Overall, it was a wonderful, exhausting, thrilling day. Something that we have been looking forward to for such a long time. Cole is finally beginning to understand to a degree that this dog is for him. He had plenty of small seizures, but nothing major.

He crashed within 5 minutes of getting in the car. He was so tired.I'm going to try and put all of the pictures on our picassa for all of the grandparents. Right now though, I feel a little like the picture above.

We're going to watch the local news to see if we made it on :)

Love At First Sight

Hi Slugger, I'm Cole. I'm glad to see you!

Too cute.

I had a moment (or three) today where I just welled up. This was one of them. Thank goodness I didn't start, because it would have been the ugly cry.

Untitled from Niki Hyer on Vimeo.

He Is My Friend

I fiddled with the settings on the blog. Hopefully, now everyone will be able to comment. For those of you who have not been able to recently, would you try again for me? Thanks :)

When we ask Cole about everything that is going on, he does not understand the concept of service dogs, or even seizures. However, our recent conversations have gone like this:

Mom: Where are we going?
Cole: We going to see Slugger!
Mom: Cole, who is Slugger?
Cole: He is my friend!

So freaking cute. Truer words can not be spoken.

We can't wait to meet Cole's new friend tomorrow. It is finally here! We will try and capture the magic on video.

Perspective

I sat in my car finishing a quick, late lunch before I ran into another store. As I sat, I watched a beautiful girl cross the parking lot. She had long, gorgeous blonde hair and was looking fit and fabulous for fall. She seemed to be just about my age, maybe even younger. In her cute boots and sweater, she was pushing a perfect, adorable baby girl in an expensive stroller, with multiple shopping bags over her arm. She had a slight smile on her face. I kid you not, she walked over to her Land Rover and started to load her things into the car.

For a brief moment, I felt hot jealousy. I washed down my Chick Fil A with Advil, trying to kill the pain courtesy of my recent trip to the endodontist. I just kind of sat and stared at this woman, packing up her things from an afternoon of shopping. I wanted to be her.

There I stayed in my overflowing vehicle, full of paraphernalia belonging to a service dog. A giant-sized kennel took up the majority of the car and bags tumbled off of the front seat. I had just spent an enormous amount of money, on a dog. No $300 boots for me. My hair was unwashed, I probably had black circles under my eyes. See, while I was in the shower, I got a phone call from my son's nurse that he was having multiple seizures and I needed to come to the school right away. Yes, I even have my phone while I am in the bathroom, it is necessary. They had only been gone for 10 minutes, the first time that I have sent him to school without me. So, my hygiene was interrupted by my reality. I, of course, got out of the shower immediately and rushed over to his school. After we got home and settled, I did not have time for vanity, I had to go and run errands. So the haphazard "look" I had pulled together was going to have to work. We were leaving the next day to go and train with a service dog for my son. He has a rare, life-threatening disease and this dog could help to save his life. We are so happy that we finally get to give him this gift. I have been doing everything possible to make this happen for my son. We had been waiting for over a year and I of course had left things to the very last minute. My life is minute to minute.

All of these thoughts raced through my head of how I should be this woman. My husband and I have great education. We eat healthy, try to pay our bills. We work hard. So freaking hard.

Then my conscience kicked in and the therapist in my head told me that I knew better.

I, of all people, know that children who look and act "normal" may be the farthest thing from normal, whatever that may be. Maybe this woman was depressed. Perhaps she struggled with body image, could she have battled anorexia? Maybe she had lost someone close to her? Maybe she had been abused when she was younger? I live in an area where a lot of people work for the government. Perhaps her husband was in harm's way? There are a million things that can happen to someone and you would have no idea at first glance.

Maybe she really did have the perfect life! And why not? Isn't that part of the American dream? Work hard and get the reward. I shouldn't be jealous of someone that I have never even met, or anyone else for that matter! Maybe she doesn't have the same struggles that I do, but maybe she actually has more. Who am I to judge?

I know after a lifetime of hurt, that there is happiness around every corner if you look hard enough. That lemons into lemonade adage is true-but you have to find the sugar and the water first. My attitude is what is going to keep me from having a nervous breakdown. In a life full of drama and catastrophic events, mixed in with some plain 'ol boring, being positive is the thing that can make or break me.

So I don't have luscious hair. My child is not perfect. Hey, neither am I! My car is older, my sleep is little, my debt is outrageous. Yet, I have a fighting spirit, an empathetic heart and an old soul. I wouldn't change it for all of the Land Rovers in the world.

As I watched her pull away, I thought...it is all about perspective.

Start of The Journey

We are all tucked in at a hotel in West Virginie (as my grandma used to call it). I have thought about her a lot today. I miss her so much. I know that she is so excited for us. She actually wanted me to get my own seizure alert dog when I was in college. We joke in my family that she is always hanging out with me, so why wouldn't she be here for this special occasion? :)

The drive was absolutely gorgeous. There were so many breath taking moments. I saw a side of Maryland that was awe inspiring, and West Virginia is beautiful. Brian and I looked at each other multiple times throughout the drive and said, "I could live in a place like this. Too bad they don't have good hospitals." Fall is truly a season. I didn't believe it until now. We have maybe 2 weeks of it out west..if we are lucky. The colors were incredible and I have never seen so many trees. A definite plus to the beginning of this adventure.

It was a nice little spark in a week that has otherwise rivaled the other "longest week of my life" weeks. Starting with a 3 hour root canal (in a different state) and ending with 6 hours in the car, with a bunch of stuff in between, it's been an interesting one. I am going to blame my moodiness on all of the crazy stuff going on in our little world. I swear one minute I am just fine and the next, I am crying without knowing why. No, I'm not pregnant...I wish.

I look forward to some more trees putting on a show tomorrow. Cole has done great so far. I have to thank the bus driver for teaching him how to unbuckle his seat-belt. Every time I looked away he had his car seat unbuckled and his arm out of the straps. Lovely. All in all though he has surprised me. He is running around the hotel room enthralled with the fact that there is a mini fridge and a microwave. He's only called the front desk twice ;) More hallelujahs were sent up for the iPad today. It saved us once again. Next stop, Ohio!

Notes From A Dragon Mom

I'm not going to apologize for two heavy posts in one week. Both of these have been floating about on blogs and forums that I am a part of. Both are significant, and different. I want both of them on here, because they remind me of different things.

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

Alexandra Huddleston for The New York Times

"Notes From a Dragon Mom" By EMILY RAPP
The New York Times: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

_________________________________________
This particular article reminded me just how important it is to be a parent of the moment. Occasionally, we get so wrapped up in Cole's future, even if that future is only a few weeks away. Trying in some impossible way to secure him health and happiness; since that is our job, right? Sometimes, all we need to do is protect him from as much pain as possible and love him until it is time to let go.

I know that I can be a dragon sometimes, practically breathing fire and others are afraid that if I open my mouth, they will get burned. A possessed Dr Spock with inconvenient truths, twisted into one little blonde, blue-eyed momma. Frightening. Our fairy tale is not going to have a happy ending, but I will do everything I can to make Cole's life the best that it can be. I'm not going to stop fighting. I just needed to be reminded to slow down a little each day and enjoy my time with him, however much of it I have left.

Slugger

Here are some updated pics of our boy!Doesn't he just look happy? Someone commented how he looks like he is smiling, even in his puppy pictures!

His expressions are so funny. He'll fit right in. Only a few days until we meet him!

Cole told Brian the other morning, "Daddy, I want to go." He asked, "Where do you want to go, Cole?" Cole replied, "I want to go see Slugger!" Melt. my. heart. After over a year of telling him that he is going to get a special dog, it is finally happening!

P.S. Someone mentioned to me that they have not been able to leave comments for a while. I knew that the comments were decreasing, except for my main-stay Miss Emma Jo, (thanks E, your comments brighten my day...every single one of them) it seems like hardly anything has been happening down in the comments section for some time now. I removed some widgets on the side bar. It seems that after a little research, this may be the problem. Sometimes when you add outside widgets to your blog, it messes with people being able to comment. Will you give it a try for me and see if it is back to working? Please? Come on, it's a picture of a really cute dog! :)

I Live My Life In Shades Of Gray

Here are some thought provoking words.

Nothing is black and white anymore...and I'm okay with that.

It's A.....

Dog!

We got this letter tonight addressed to Cole.

Hello Cole, my name is Slugger and I am a member of the S is for Special, Spectacular, Sweet, Sensitive, and Super Litter :0) We are simply the best! That is why there are 4 of us in this class! I have been working my whole life to get ready for you. When I was born it was at 4 Paws to Mom, Molly and Dad Romeo. I knew from day one I was destined to be a service dog and always dreamed I would have my own boy one day. I am not sure how I knew but I did and I bet when I meet you that you will look just like the boys in my dreams! Of course I am a boy dog with the name Slugger. My birthday is easy it is 10 three times! 10-10-2010 How cool is that. I hear you are coming to 4 Paws in just a bit over a week. I CAN'T WAIT!!! We will be best friends, I just know it! So hurry to Ohio my friend! xoxoxo SluggerObviously, this picture is from when Slugger was a little younger. We will post a more recent picture as soon as we can! Lots of emotions tonight, our world is changing.