Sunday, November 27, 2011

A Mother's Heart

I always knew that I wanted to be a mother.

I am the oldest of five children. I am a Mormon, families are central to my religion. I was raised in a small farming community where having a large family is the norm. I was constantly forcing my siblings and cousins to play house and learn from me (I use the term learn very loosely). When I was old enough, I started baby-sitting. I have just always wanted to play that role, of mother, from the time that I was very small. I knew that I wanted at least 6 kids.

My favorite part of growing up on a ranch was seeing small, helpless animals come every spring and to observe them grow and become strong. Watching birth was an adrenaline rush for me. Helping to care for animals whose mothers were too sick, had died or rejected them was something that gave me the greatest feeling. For years I wanted to be a veterinarian.

However, growing up I nurtured this fallacy that I was broken and no one would love me enough to marry me and want to create a family with me. I had seizures, I was different. So, I then decided that I was going to be one of those ladies who adopted a bunch of children who were not wanted by their mothers. I became a social worker and started my career with adoption and foster care. I always knew that if there was a way, eventually I was going to become a mother.

I progressed in my career and with my job I became the legal guardian for 15 teenage girls at a time. I was going to mother all of the helpless souls out there, even just by pointing them in the right direction. Not bringing them all home like stray animals, but by being a guiding force in their life. Eventually I worked my way through a myriad of positions, all involving taking care of people. Giving them advice in stressful situations, guiding them through complicated processes. Comforting them when they were sick and hurt. Helping to make their life better in some small way. Helping their family members to understand how to say good-bye and coaching them on how to grieve. I continued to tell myself in the back of my mind that I was not going to have the chance to become a mother and so I needed to find other ways to nurture my mother's heart, because the desire was still strong. My job was a lot like being a parent. Not a lot of thanks, but occasionally there was a big pay-off when you knew that you had made a difference in someones life.

Life moved on and I realized that I am not broken and had every opportunity out there that anyone else does. I got married and a few months after I found out that my biggest dream was coming true. I was pregnant...and I was going to be a mother. I was going to have the chance to create something so precious and then guide it on this journey called life. I was going to give this baby knowledge, fun, character and lots and lots of love. I would give them brothers and sisters too! They were all going to have quality educations, get married if they wanted to and then give me grandchildren. I was thrilled and already planning skits for family reunions!Cole came and taught me lessons about motherhood and parenting that I never thought I would have to know. He has made me more than a mother. I am also a pharmacist, advocate, insurance negotiator, exemplary laundress, fundraiser, lawyer, nurse, specialty chef, play-doh expert and singer of television songs among other things. He will never have the opportunity to get married or make me a grandma, but he taught me that I can be a mother. A really good one. I believe that motherhood can be a calling and is very spiritual. I sometimes feel like I have tried to move heaven and earth to give him every opportunity possible, because he is worth it. So even though he is not a typical child and can not give me all of those things that we want from our children, he has given me a gift. I feel so grateful that he gives me the chance to re-invent myself every day.It's during times like these though, the holidays, where my mother's heart gets blue. I have fond memories of childhood, laced with laughter at family gatherings and steeped in tradition. Each and every holiday was spent surrounded by family...lots of it. I have 32 cousins just on one side! I know that when I am older, my special occasions will not look the same as those from my youth. There will be no gathering at grandpa's for blueberry pancakes on Christmas morning. No taking my posterity camping, or on hikes in the desert or to Disneyland. They are most likely to be small, quiet affairs and not the rambunctious, crowded celebrations that I crave.

In a few weeks it will have been a year since I had to make the hardest decision of my life. It was not about a college, a job or even marriage. It was to have a small procedure that would prevent me from becoming a mother, naturally, again. It was the right thing to do, to protect my health and to not pass on my genetic mutation. Brian and I did not take this lightly. We prayed about it, discussed it and asked doctor's opinions. Still, I must admit that this past year has been filled with grieving for this loss. I rarely speak of it and did not even tell my parents until after the procedure. It was a personal decision between my husband, me and the Lord. I have never mentioned it on the blog, but I want to shed a little light on the inner turmoil that has been brewing beneath the surface.

Even though there are some flaws in my DNA, I am genetically programed as a woman to want to multiply and replenish. I can not stop my heart from aching for children. So over this last year I have had to learn how to be happy for family and friends who are moving on with their lives and families. I have had to learn how to not feel hot jealousy towards pregnant women and to enjoy their announcements of impending additions. I had to repent from hating the Duggar mom for being able to have 20 healthy kids :) I have to steer clear of the maternity and baby sections in the stores and just occasionally burst into tears to let it all out. Sometimes it is hard knowing that the only way to get another child is through a lot of money and more than a little luck. It doesn't mean that I am ungrateful for the opportunity I had in the first place to become a mother, just that I grieve that my future will not be quite like I had planned it. Again, I am being taught that nothing really never works out the way I want, but probably the way it is supposed to. Our parents will age and our siblings will start doing things with their growing families and life will move on. It just won't be quite like I had dreamed with small bundles to snuggle and then send on play dates and beyond. Gathering and continuing traditions that I have enjoyed for a lifetime. Hopefully, we can keep Cole for a while, but we both know that eventually we will be alone. Maybe we can start going to Hawaii for Christmas? :)

I know that miracles happen. My dreams of 6+ children have morphed into two, maybe three. Maybe someday, our Ava will come along. Maybe, we will find an egg donor, or there will be some crazy genetic tests that come out (that are semi-affordable) to help make sure that all of my random mutations will not be passed along. There is still hope. Hope that one day I can be a soccer mom, or attend my child's college graduation, pass down my favorite recipes, be the mother of the bride or go to my grand kids piano recital. We are just going to have to be a modern family...and that's okay. But it doesn't mean that my heart is not going to continue to wish for more opportunities to mother. Until then, I will cherish my two baby boys. The really hairy one (Slugger) and, the not-so-hairy one, my precious Nicolas Grant.

Friday, November 18, 2011

Friends In The News

Here is a great piece done by FOX13 in Salt Lake City, Utah, highlighting some of our friends from 4 Paws For Ability! If you keep your eyes open, you can see Slugger making a small cameo in each section with the class picture :)
Part 2

Tuesday, November 15, 2011

A Ride In The Fun Wagon

We actually can't remember exactly the last time Cole had to be transported to the hospital by ambulance. I know it's been at least a year...June 2010, I think. I'll have to go through my records.

Last night, we got to initiate Slugger fully into our family.

Cole was in the bath when this seizure started, I always hate those. Well, I hate any seizure, but those that start in water are super scary. We have no idea if Slugger alerted or not. We were all kind of scattered hither and thither throughout the house. I know that I didn't hear him bark. However, he did awesome during the actual seizure. He licked Cole's mouth and ear repeatedly-signs of seizure alert. Also, he came and laid right by him.

Now 30 minutes is not a super long seizure for us. However, we still called 911 because Cole has been sick (he's been on anti-biotics since Sat). He was starting to choke and I was worried he was going to aspirate. After 3 doses of rescue meds and following our protocol, he was showing no sign of slowing down. It was a tonic-clonic, but one arm more than the other was involved. He has not had that kind of movement in almost a year. Constant jerking of just one arm used to happen all of the time, but we have not seen it prolonged like this for a while. Thus, we got to call our "buddies". Thankfully, one of the men (I think there were 7!) was the lead on our last call. He tried to fill the others in that we know what we are doing. The paramedics were a little anxious though and brought in the intubation kit. Normally, if a child has been seizing for almost 30 minutes, you intubate. I am SO glad that they didn't!

Brian went in the ambulance with Cole (his first time) and I got things ready and brought Slugger. Slugger was certain that we were going tracking. Remember that seizures are games to him. Then, he saw Brian leave with Cole. I put on his harness and was rushing around...he thought we were playing another game! It took a lot of strength to pull him into the ER. He was following every little trail out in the parking lot, looking for his boy. He was super disappointed when he just had to lay in a hospital bed.He did great though and all of the nurses loved him.

Cole in his royal Mini-Hulk fashion was up walking and talking within minutes. We got the usual looks of shock and amazement when we listed off how many meds he had in him. Strong warrior! He stopped seizing in the ambulance and the first thing he said when they were unloading him was, "I want Slugger!". Not bad for a 30+ min seizure, 7.5 mg of Diastat, 5 mg of Diazepam tablet and 3 mg of intranasal Versed! He, of course, tore off all of his leads and kept trying to break into the crash carts.We are so glad that they did not make us stay overnight. It helps when you have been around the block a time or two. Most doctors begin to understand that you know your child best when you tell them exactly what you want and flood them with information. I really like this hospital. Both times we have been in the ER, it has been nothing but great service and we have not had to wait around forever just to be seen.A cameo by our friend Clark. Helping Cole with a hospital gown since he didn't have any clothes on.

It was a record-breaking turn around time. From 911 call to discharge at the hospital...under 2 hours! How awesome is that?! We have had our fair share of waiting all night in the ER. I'm just happy that we are home. I really, really like this hospital. Oh wait, I already said that! *wink*

We are going to take a lazy day. I was already keeping Cole out of school, hoping that he would get better in time to go on our "dry run" road trip this weekend. I'm not so sure if we'll be able to go now. We'll just have to wait and see.

Saturday, November 12, 2011

Dog Shower

When trying to figure how best to approach letting other people get to know Slugger, we came up with an Open House idea.

It's kind of like a baby shower/welcome home/birthday party/educational opportunity all rolled up into one :) We invited all of the kids in Cole's class and their families, in case they have any questions or want to get the chance to meet this dog they have heard so much about. We also invited friends and neighbors that helped us with our fundraising and who have supported us in this adventure.

Here is a look at our adorable invitations.Isn't the backer just too cute for words? I am biased, I know.
Love the bow on the bone.

My good friend, also a Dravet mom, is SO talented. Check out her shop here! She can do anything. I've gotten custom stationery, Christmas cards, Baby Shower invites, name cards for parties and much more from her. Take the time to go and wander her etsy WILL be impressed!

If you live locally and know anyone that would be interested in meeting Slugger or learning more about service dogs, just e-mail me. We want everyone to get the chance to meet him and to brag about how amazing 4 Paws for Ability is. You can bring your friends, special needs or not!

This truly has been like bringing another baby into our family. Hopefully everyone else is as excited as we are.

Tuesday, November 8, 2011

Getting Settled

Tiger Moms

There is a poem that circulates around our little Dravet group about Tiger Parents.

We got to spend just a little bit of time with two Tiger Moms after our graduation.One is a dear friend and the other was a new friend. You are always instantly connected though when your children share this diagnosis.
Cole was so overstimulated that he just ran around the restaurant. Brian followed him while I got to chat for a little while. Slugger was perfect and stayed under the table.

I always treasure the time that I get to spend with my fellow Tiger Parents. I mentioned before that one of them made an 8+ hour round trip in the car, just to see us for a couple of hours. What a great friend! This is a lady who I sent over to another friend of mine that was at a hospital out of state with her son who had just had brain surgery. This person did not know my friend, and had only met me in person once for a couple of hours. Yet, she made a care package and went over and sat and talked to my friends who were scared, nervous and exhausted. She is an angel. A true example of a Tiger Parent. I'm so thankful she is in my life.Roar on, Tiger Moms! Until we meet again.

Monday, November 7, 2011

We Did It!-Graduation, Day 11

It seems going through the posts that I was at Ultimate Fighting Championship Camp or something...not Service Dog Training! I promise, this is not the norm. No one else had issues, I must be super special!

Brian took the Public Access test since I was on the injured roster. He and Slugger passed! The only worry was the food distraction test and Slugger almost gave in to temptation. However, he must have known that he was doing something important and resisted. Hooray!

Later that afternoon we all went back to 4 Paws and filled out the paperwork to take Slugger home with us. We promised to take good care of him. Then we had graduation! It was so crowded and noisy that I was sure Cole was going to have a melt down. Some of the other kids in the class just couldn't handle it.

This was our attempt at trying to get a picture of all of the dogs.Our dear friend Paula drove 4 hours just to be with us on this special day! We have not seen her since the Dravet conference last year and it was so nice to be able to hug each other. She also brought her lovely daughter. She kept Cole entertained during the madness with a new iPad app called "Paint My Wings". We were so grateful to her for coming. That is something that I love about my Dravet family, we truly share each other's victories and sorrows. We may not be able to physically be there in times of need, but I know that they are rooting for us...always! It was so, SO nice of Paula to come and spend time with us.We waited patiently and we were last to graduate! They finally presented Slugger and Cole as a certified working team. We got a fancy certificate and everything!Plus, we got to sign Cole and Slugger's names on the Wall of Fame!There are a lot of lives changed here.We were so sad to say good-bye to the staff at 4 Paws For Ability. There were many tears.

Here is Slugger with his first "Mom". She will always be a part of our family.Along with some special other people who will also be family. If you haven't guessed, we are always willing to adopt.Speaking of family, here are Slugger's litter mates that were in the class. We are so excited that his sister Samba and his brother Shaggy live close to us!If you have ever doubted that this is something you could undertake, I will just say to you-If I can do it, you can do it too! Contact 4 Paws today, or if you have the chance, help someone with their fundraiser. Our lives will be forever changed because of these people and their mission...and by Slugger, of course.

Thursday, November 3, 2011

Meet Our New Friend!

Here is a little video to introduce the kids in Cole's class to Slugger!

We are planning on making a longer one when we get home to introduce them to the idea of the rules that come with a service dog.

Last Day, and Another One Bites The Dust-Training, Day 10

You can play this in the background and imagine a montage America's Funniest Home Videos style of me falling on my face. Well, actually on my hands.

I went on my first long blind track with Slugger today. I had no idea where Cole and Brian were, just the direction they headed in the beginning. Something that would be more along the lines of a typical life situation. I knew the last place Cole was, but not where he went. Slugger took off like lightning, as usual. We were doing great. I was slowing him down, putting pressure on the Flexi line and we were going more at my pace than him dragging me around like he wants to. He was running so hard though that all of his legs left the ground and he jumped over the line and got hung up in it. I had to stop him (which he didn't like) and untangle the line from in between his legs. After I got him loose, there was slack in the line and he caught the scent again before I was ready. Remember when I said you have to have perfect body position if you are a little whipersnapper like me? Well, my knees were not bent, my heels not dug in and my arms not braced. So-with that incredible force he has, when he snapped into the scent after that slack, it was like being hooked to a race car. He literally pulled me down, and almost got the Flexi out of my hands. I heard the trainer yell to me to just let go, so I did before I was dragged to kingdom come. I landed directly on my hand and heard an audible crunch. After he asked if I was okay, I waved the trainer on and told him that I was certain Slugger would just go and find Cole. So, I rolled around on the ground for a minute and then cowboyed up and walked to where "Super Tracker" had already found the boys. My hand started to swell as we walked back to the car and hurt like the dickens. I put an ice pack on it (I had one in the car already) and we went to get lunch.

I was sure that I had at least broken my pinkie, so everyone at the center convinced me to go in and get it looked at since I was feeling pain up the side of my hand and in my palm. Well, I have a soft-tissue injury aka a really bad sprain. At least my hand is not broken, but I have this nice little ace bandage :)Now I don't want anyone who is getting a tracking dog to be freaked out by all of my random injuries. This is not typical. 1. I am not really the most coordinated person on the planet. 2. I weigh around 110 pounds, Slugger weighs almost 80. 3. My shoulders and arms are not that strong since I do not have enough cartilage around my rotator cuffs. This will not happen to you. Or at least I hope it won't. Seriously, I laughed when it happened. First I sucked in my breath and said/yelled "Aahh!" and then I started to silently giggle. I was glad that Slugger was doing his job. It was me that wasn't ready, not him. I told the trainer, worse things have happened than a broken finger. So, we got to go to the hospital twice this trip...nothing was emergent and we never had to stay. I guess it is just part of taking in the scenery when we travel :)

I can't believe that today was our last day of class. Tomorrow is our big test and then-hopefully-our graduation! I just hope that Slugger passes the food distraction part. Too bad that tracking isn't part of the the test. The trainer said that Slugger is like the kid in Little League that is certain he should be on the Varsity team, and he probably should, but he isn't old enough yet. I am positive that we have a Varsity tracker on our hands. I just have to get used to it.

We talked today about taking our dogs home and continuing our training. Here is Slugger doing lap.After class, Captain Fuzzypants got a bath. Plus a professional blow dry. On the list of must haves when we get home, dog blow dryer :)I am so grateful to the staff at 4 Paws and to anyone who even donated a dollar to make this happen for Cole. Slugger is his perfect match and I am sure that he will prove his worth time and time again. He has already made such a difference in just a few weeks, I can't imagine what it will be like a year from now. Everyone that has made an effort to mold him into the amazing dog that he already is will forever be a part of our little family.

Cole will miss socializing with every adult in sight. He could care less about the other kids, but that is nothing new.It is time though to get back to our routine and our beds. Cole's nap today is still going strong after 2 hours. He is so tired. He keeps saying that he wants to go home. I admit, I also want to...but I want to take all of the amazing people that we have met with us.

Wednesday, November 2, 2011

Parents Of The Year-Training, Day 9

We are kind of out of our element here. No specific routine. At home, the morning usually goes like this:
Brian wakes up, gets ready for work. Makes Cole's milk, puts it in fridge.
Cole wakes up for the first (or third) time, comes into Niki's bed.
Cole sleeps for another hour, Niki gets ready (if she's lucky).
Cole wakes again, Niki grabs milk gives Cole meds.
Cole watches the show of the day and drinks breakfast.
Niki gets Cole ready for school. Nurse comes, we go to school.

There are slight variations of this routine, but it is usually how we approach morning. Here, all sorts of versions have been happening. We have been waking up earlier, all together. No going back to sleep for anyone. Sometimes I have been giving meds, sometimes Brian. Sometimes I have been getting breakfast, sometimes Brian.

Today, we figured out that we forgot the meds completely. Awesome.

Cole was having a really hard time waking up this morning. We started at 7:00 am, and by 8:30, he still wasn't ready to get up. It seems like all of the kids have hit a wall today. They need routine and this has been anything but. So, in our commotion of trying to get him to wake and get ready, we forgot the morning dose.

He had a rough time at the center and we could not figure out why. Now we know after some process of elimination. Also, watch out grandma's you have been replaced! Cole has adopted a grandmother that is here with another little boy in our class :) I told her to take it as a compliment.Cole had a 12 minute tonic-clonic seizure just after our track at the park. Being outside was enough to just push his brain over the edge.Slugger didn't even have a chance to alert. He was so amped up about tracking and playing the game that he couldn't focus. Then, Cole and I were separated from him for about 15 minutes before the actual seizure, which is in his alert window (we think).We'll have another chance, but we are kicking ourselves about it. At least we know that the medication is helping a little! We wondered about Keppra. Yep, parents of the year...right here.His post-ictal phase was really rough. Without that barrier of Keppra to break through, the rescue meds became super strong. The seizure took Versed and Diastat to break. He was so irritable, it was awful. Lots of screaming, crying and demanding things. "I want this, I want that!" We would give it to him and he would just continue to ask for it.

We got to the mall for our last indoor practice (can't believe it!) and he had kind of mellowed out. We knew that it was not going to last long though, so we asked to go first. Slugger did two short, textbook tracks. We also worked on some obedience, but left early.Good thing. I know my child. I can't always predict what or when he is going to do something, but I knew that he was getting to the end of his rope.Not a moment too soon, we left with him screaming as we headed to the car. The whole way back to the hotel we heard things like, "I want to go home! I don't want to be in my car seat! I want my milk!" over and over and over at a very loud, high pitch. Always fun. Slugger wasn't even really into behavior disruption commands because Cole was just so out of control.

We came back and tried to coax him into taking a nap. That took about a half hour to actually get him in the bed without going ballistic. Once in there though, he crashed hard. After his nap, he was good to go, we went and met up with one of Brian's cousins that lives in the area. You never would have known that Cole had just been through a rotten day. He just cared about the tractors and old farm equipment around the dairy that we visited. Made this farm girl proud!This kid is tough as nails. It makes me feel a little better that he rebounds so well, but still-no awards are in my future.

Tuesday, November 1, 2011

Proud Mama-Training, Day 8

It is day 8, right?

Today was great. We took Slugger on some difficult tracks through the woods and tall grass. He even went on one where Cole and I back tracked, which is difficult to follow. He did awesome. Brian was totally confused as to why he was going a different way, when he could see Cole and I in the trees, but he went with it and was glad when I told him after they found us that Slugger followed our trail exactly. The trainers said that he will be able to distinguish more between fresh and old scent as he matures. Regardless, he followed the track perfectly and found us! Plus, I did a better job handling him when it was my turn and did not have any injury to add to my growing list. Including the broken nose...which Cole, not Slugger, inflicted. It might not be totally broken, but there is a big red bump and it is super tender. That pirate sword can inflict some damage!

We worked on some more tricks in class and also off leash commands. We did a little tethering and Cole showed Slugger how he goes out at the knees and then tries to get away. Slugger stayed put-awesome.We also worked more on just hand signals, or just voice commands. Slugger did well. He needs a lot of encouragement for roll over, but he performs just like a circus act when it comes to shake, high-five, bang and give five! I think that we are going to try and turn bang into the force, so Cole doesn't run around pretending to shoot people all of the time.

Slugger also was very obedient with staying on his place during class. I was trying to listen and watch Cole (who kept on trying to leave the building) while Brian was once again trying to have someone resurrect my phone. Yep, it's dead.Here is Cole trying to show Slugger the picture he was coloring, cute! Slugger was an angel as I ran back and forth trying to handle Cole. I would really recommend to anyone coming to training to bring a third person that does not need to learn how to handle the dog. Even with our make-up sessions with each other in the evening, we are still missing things. Bug was great though, he stayed put and only got off of his place once while I was running around. I was a proud mama.We went to the mall to practice after class. Slugger is getting more used to tethering and did great.We shortened the strap and had less tangled mess than last time.It was so great to know that he wasn't going any farther than the tether strap. It was nice to not have to keep my eyes totally peeled for places that Cole could hide.It didn't stop him from taking stuff off of displays, but hey-Slugger is only so incredible!We also did two short tracks just by ourselves without the trainers. Slugger really shined! He was amazing. The first time, I forgot to take off his gentle leader. I wondered why he didn't just bolt and get into it in the beginning, but after I talked him up a little more he took off and found Brian and Cole. It was like he was looking at me to say,, take this thing off! I don't play the game with this thing on! Still, he tracked and found his boy in a really short period of time. It gave me more confidence. The second time, I took it off like a good mom and he found the boys even faster. Once again, proud mama. I was handling him a lot better and wasn't being dragged to and fro. We let Cole play at the play area for a half hour. This was one of the first times that I relaxed a little in that kind of an environment. I knew that if Cole left the area, Slugger could find him. If he had a seizure, Slugger could help me to comfort him. It was a great feeling. Cole kept going up to people and saying, "I'm Cole!" like usual, but then he added, "That's Slugger!" and pointed over to his buddy.After the mall, I took Slugger to Disneyland for pets to really test him. In Petsmart, he was incredible. There were un-trained, yippy dogs everywhere that were totally getting in his face. He stayed by me and didn't break command once. Except for when I put him in a down at the cash register and the lady behind me kept telling him how beautiful he was. The nickname Big Head has lots of meanings :) I was proud of him though. He is my second child. Watch out-I am going to start sending people pictures in the mail and expecting to see him on the refrigerator at my relatives, lol!
Photos by Capture Me Candid