Sunday, December 4, 2011

We WOOF You A Merry Christmas!


For those of you who did not get our card this year (don't feel bad, our families are so huge we didn't have any left) this is the photo that we used. It's kind of silly, but that's how we like things around here. Remember Last year's card?

Slugger is our present for Christmas, birthdays, anniversaries etc for the next year (or three) so we decided to wrap him up all pretty!

We WOOF you and yours a very Happy HOWLiday from the four of us and thank you for reading Epilepsy Warriors.

P.S. We got named on this list, along with some of our amazing friend's sites, as being one of the top blogs for epilepsy support.

Photography by Oscaron Photography and the actual card (it was sure cute, red houndstooth backer and all!) was by the one and only Pearenthetical Press.

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 :)
Part1  
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 store...you 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.
 
Photos by Capture Me Candid

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