Girls Camp!

Alyssa, Astro, and I outside of the Manti Temple during Girl's Camp

Alyssa turned twelve just a few days after girl's camp this year, so she was invited to go along.  She was so excited!!!  I can't believe that she is old enough to go to girl's camp! How did that happen?  Because of her lovely seizures that go everywhere with her, that meant that I got to go along.  I hadn't been to girl's camp since I was a Young Woman!  We had a wonderful time.  It was just our ward (our local church group), which was nice and it was fun to spend some time with some of the women in our ward that I haven't had the opportunity to get to know very well before.

Alyssa's days were wonderful.  She made some new friends and was just so happy to be there.  She is a happy soul and people are automatically drawn to that.  I was the lone leader in the Beehive cabin (the 12 and 13 year old girls) because I needed to be by Alyssa and it was an adventure being in there with 14 girls!  I purposely tried to keep my distance from the cabin during the daytime hours so that Alyssa didn't feel like I was hovering over her.  Hopefully it was a good balance for her.

The first night wasn't too bad.  Just a few minor seizures and a long night of giggling girls.  The second night she had one big seizure but was ok after that, although one of the other girls was sleep walking and ended up lost in the cabin and couldn't find her bunk.  Because of my years of listening for seizures, I sleep very lightly and hear everything!  Every sigh, every bed creek, every word or whisper.  I didn't get much sleep but Alyssa did ok.

The third night was an adventure.  A crazy adventure.  We were staying at a camp that had very rustic cabins.  They had bunks that we put our sleeping bags on but there was no electricity and the bathroom facilities were across camp.  It was the last night and as the testimony (fireside) meeting began, a thunderstorm rolled in.  It was the perfect setting for the night.  Half way through the meeting Alyssa was just exhausted and not feeling well so I got her back to the cabin and into bed.  About a half hour later the other girls arrived.  They were so sweet and tried hard to be quiet as they knew that Alyssa wasn't feeling well.  A few minutes after that Alyssa had her first seizure.  It was a big one and I was hoping that the night would be peaceful after that but I had a hunch that it wouldn't be.  Sure enough a half hour later she had her second seizure.  It was also a big one.  Following her big seizures she isn't able to move or talk for  a while after.  As soon as she could talk, she told me that she needed to go to the bathroom.  One slight problem with that request.  The bathroom was clear across camp and there was no way that I could carry her that far.  Luckily the Bishop (our ward leader) and one of his councilors were there that night.  (There are always two male leaders at camp at all times in case they are needed.)  I told Alyssa to hang on, grabbed a flashlight and ran through the rain and knocked at the cabin door where the men were sleeping.  Brother Tolley wasn't asleep yet and was kind enough to come back with me to carry Alyssa to the bathroom.  He was so sweet to Alyssa and made her feel as comfortable as she could considering the situation.  I am so grateful that he was there.  So we trekked across camp in the rain to the bathrooms.  I carried the flashlight and had Astro as Brother Tolley carried Alyssa.  We then repeated the scene back to the cabin.

Unfortunately, when there are two big seizures, they seem to keep coming.  Sure enough, 20 minutes later her third big seizure hit.  At this point I gave her her emergency meds.  This seizure was bad enough that she started vomiting after it was over.  Things were not going well.  At this point I sent two of the other girls back up to ask Brother Tolley if he could come down and give Alyssa a blessing.  I couldn't leave her at this point and most of girls were wide awake after all of the excitement so they were able to help.  Brother Tolley kindly came back down through the rain once again and gave Alyssa a blessing.  I was then able to get her into some clean clothes and got her tucked into my sleeping bag.  Her seizures finally slowed down and although she continued to have small ones the rest of the night, the bigs ones were gone.  As I got her settled in to my bed I then realized that I had no where to sleep!  I pulled the sleeping bag off her cot, threw a towel over the vomit spots on the cot and pulled a blanket over me.  It was a long night and the sleep walker hit again as well, but we made it!  We made it though her first year of girl's camp and that was the whole goal!

She wasn't feeling so well the next morning and threw up one more time on the way home but she still loved it and was so grateful that she was able to go.  All of the girls at camp got an award the morning before we went home.  Alyssa received the "happiest camper"  award.  She deserved it.  She loved being there and her happiness was contagious.  And what a good lesson for all of us!  Even if you have trials and things don't work out exactly how you want them to, we can choose how we are going to respond to the situation.  Alyssa could have been embarrassed, and sad and ready to go home, but she wasn't.  She didn't want her seizures to ruin her experience and so she chose to make the best of it and still have fun.  I have said this many times, but my daughter is amazing!!!!!!!  I am so grateful for her example.  And, I am secretly grateful that I have to go with her on these excursions because I just love being with her!

 The first year girls

 Skit time!  

 I love that she can be herself!

 The Highland 17th Ward Young Women

Beautiful girls inside and out!

 Admiring the campfire that they built

Building a fire with Astro on guard duty! :)

My Opera Singer

My daughter amazes me.  She is so strong.  She could easily just say that she is too tired, too worried about having a seizure in front of people, too scared, but she doesn't!  She never gives up and I am so amazed by her strength.  In February she was able to perform in an opera.  She sings with the Utah Children's Choir and they were asked to sing in Utah Lyric Opera's production of La Boheme.  Jeff and I were worried.  It was very possible that she could have a seizure on stage, but the amazing directors of  the opera were incredible!  They not only allowed Alyssa to be in it but they also put Astro on stage with her!  They could have easily said no.  They are a semi professional company, and yet they were willing to take a risk in order for Alyssa to have this experience.  I am still amazed at their kindness.

The children's chorus was in the second act which takes place in a town square during a celebration.  They made Alyssa a street urchin who was pretending to be blind to be able to beg more successfully.  Thus, Astro was her seeing eye dog.  She begged at the main character who send her away empty handed and she got to kick him in the shins.  She did such a great job!  The children's chorus was so good!  The entire opera was in Italian and they all knew every word and its correct pronunciation.  I loved watching the entire process and have now become an opera fan!

It was an incredible experience and Alyssa had a marvelous time, but what amazed me most about her was her maturity level in regards to what her body needed to be successful.  She did not want to have a seizure on stage and knew that it could easily happen so she took it upon herself to not let it happen if possible.  Each night of the performance as the first act began she would find a quiet corner and would lay down on Astro and try to doze off for a few minutes.  As soon as she would slip into sleep, sure enough, a seizure would strike.  She purposefully caused her body to have a seizure, knowing that it would give her enough time to perform and get back off the stage before another one would be likely to hit.  She came up with this plan all by herself and it worked!  She made it though each performance without having a seizure on stage!  The fact that an 11 year old could choose to miss time with friends and find a quiet place in order to force herself to have a seizure is remarkable to me.  She is so smart, so conscientious, so determined and so fearless!  I loved watching her enjoying herself and having an incredible experience despite the challenges that she has.  She is my hero!

My Opera Stars!  I am sure that Astro's trainers never thought that he would be in an opera!

 Alyssa and one of her best friends.  They were both street urchins.

 It's a blurry picture but this is her onstage with her little round, dark glasses that she wore.

The children's chorus.  Such wonderful kids!  They all love Alyssa and Astro and have decided that Astro is the best pillow pet in the world.  He is not only soft, but is also warm, gives kisses and is always with Alyssa! :)

Most Likely to Succeed2

At the end of each school year the middle school students in each grade pick out their peers and award them the status of most friendly, smartest, most likely to succeed and many other things.  Tyler and Alyssa were both chosen by their peers as the Most Likely to Succeed.  I have never taken much stock to these types of awards as they tend to label kids but this year they have caused me to think.

 For Tyler, this is an award that he has been awarded before.  Tyler's teachers love him.  He is a model student.  He follows all rules, he engages in classroom discussions and he is extremely bright and does well in school.  From all outward appearances, he looks like he has it all.  However, most people are not aware of the demons that he fights on a daily basis disguised as extreme anxiety and depression.  He puts on an amazingly strong face and for those of us who know what he faces each and every day, it truly is a miracle that he is as successful as he is.   As his mother I worry about his future.  I can see his potential, but I also see his worst days.  I fear that he will not be able to accomplish what he is capable of but this award has made me re-look at my son.  He is successful and if he can continue to trust himself and see himself as others see him, he will always be successful!

I have to be honest and say that I was actually shocked that Alyssa's peers chose her as the Most Likely to Succeed.  Shocked!  These 6th graders nailed it!  If any one is going to be successful it is my Alyssa, because she is already successful!  She is not the typical person that is chosen as one who is most likely to succeed.  She has a chronic illness, she has a service dog because of her disability, she has an IEP and can't always get to school on time and yet the fact that she is happy, friendly, and one to never give up makes her successful.  She is not allowing her disability to stop her.  I can see this, but I am amazed that her fellow 6th graders recognized it in her.  Kids are often smarter that we give them credit for.

what is success?  I think that as members in society we often consider those who make the most money, or who are famous, or leaders of large corporations, as those who are most successful, but Tyler's and Alyssa's peers have caused me to think about what success really is.  Anyone can be successful when we don't let our challenges limit and dictate who we are.  Success is different for everyone.  The key is to not compare.  Jared is successful when he is able to count to 10 without making a mistake.  Tyler is successful when he is able to cope with an especially chaotic day.  Alyssa is successful when she doesn't let the fear of a seizure keep her from doing what she loves.  I am successful when I don't lose my temper when the kids are driving me crazy.  Anyone who never gives up and keeps trying to be the best that they can be day after day is successful.  I think that our Heavenly Father would give us all the award of Most Likely to Succeed.  He knows our potential.  He knows that if we keep trying and trust in him, that we can all become the best that we can be and that, is true success.  So next time I am comparing myself, or anybody for that matter, to the worlds view of success, I am going to remember the lesson that some middle school students taught me about what success truly is.

A Little, Old Man

A few weeks ago I took Alyssa and Jared to Thanksgiving Point's Tulip Festival.  It was a beautiful evening and the tulips were breathtaking!  There is a big, grassy hill that all of the kids love to roll and run down.  Jared decided that he wanted to join in.  This is not a little hill.  It is pretty steep and long but Jared was determined to join in on the fun.  He did his slow little walk run all of the way down the long hill and then turned around and started back up.  He was slow but determined on his trek back up and there were many kids that lapped him several times over during his journey.  He had a smile on his face the whole time and loved it so much that he turned around at the top and started the trek all over again.  He did this several times and never once asked for help up the hill.  "Slow and steady wins the race" came to mind as I watched him going up and down the hill.

On his third or fourth time up the hill a woman came up next to him and I could tell that she was talking to him but I couldn't hear what she said.  As Jared reached the top and then decided to "sled" down the hill, she came over and started asking me about Jared.  She is an audiologist and noticed his hearing aides and was curious about him.  I told her all of Jared's unique challenges and she then said, 

"Now it all makes sense.  I was watching him go up that hill and he just reminded me of this little old man shuffling away.  I could even picture him as an old man shuffling along.  But now I see that he has an old spirit.  Many kids like Jared have old spirits.  You can see it in their eyes." 

 I have often thought as I look into Jared's eyes, that there is wisdom there that I can't comprehend.  His body is not perfect, but his sweet, wise spirit is and sometimes we get a glimpse of that.  I am grateful that this woman reminded me of that.  I am so grateful for the blessing it is to have Jared, and all of my children, in my life.  They are teaching me so much.

May the Force Be With You

The Children's Hospital is undergoing some renovations over the next year and because nasty bugs can hide in walls and possibly be released in the air when they are knocked down, all transplant patients are required to wear masks at the hospital for the next little while.  It has been a while since Jared had to wear one of these but he was cooperative as usual.  At his last transplant clinic, as I was checking him in, he came up to me and said, "Mom, I look like Darth Vader!"  He was currently in a Star Wars obsession so it was a logical comparison.  The ladies at the check-in desk thought that he was so cute and were impressed with how he turned a not so nice situation into a positive.  For the rest of clinic he told people that he was Darth Vader and they played along and referred to him as such.  As we were playing along with him I told him that I hoped that he was the "good Darth Vader" and he politely told me that no, he was the "evil Darth Vader"  It was so funny how he said it.  He would come up to me and quietly, under his breath he would say, "I am Darth Vader Mommy, and I am still evil."  He would then do the Darth Vader breathing sound.  He kept all of us smiling at clinic that day although I am still hoping that he will be the "good Darth Vader" next time!

Our Thankful Tree 2012

It has been forever since I have written a post.  I'm not sure what my problem has been but I couldn't just throw these out.  The month of November we had a thankful tree on our kitchen table and each night when we sat down for dinner we each wrote down something that we were thankful for and put it on the tree.  It was so fun!  We missed some nights but it was still really fun.  I am cleaning up Thanksgiving as we get ready for Christmas and read through all of the things that we were thankful for and decided that I should write them down.  Here goes.

Jared- I am thankful for:

• The fireplace
• My toys
• That I can play
• Angry Birds
• Playing with Mommy
• For School
• For yogurt
• To do stuff
• My magic kidney

Alyssa (she got really in to this activity and had many submissions to our list)- I am thankful for:

• Baptism
• Nice warm beds
• Ice
• Food
• Water
• Mashed potatoes
• Our thankful tree
• A temple so close to us
• The universe
• My very, very, very, very, very, very, very, annoying but cute little brother. (Next year there will be eight very's because he will be eight. )
• Skittles, not the candy but I like those too
• Thanksgiving
• A paranoid Dad with hawk eyes
• My miraculous, marvelous, mom
• A wonderfully annoying service dog named Astro
• Family
• A nice big brother who plays Ever with me
• My voice
• Transportation
• Salt and pepper

Tyler- I am thankful for:

• BYU
• Cuties (not girls, but fruit....although those are good too.)
• Good friends
• Pie on Thanksgiving
• Pizza
• All of the amazing technology we have
• Beautiful mountains
• Having the priesthood
• Awesome literature
• Home teaching the Moens with dad
• A crazy, awesome family
• My awesome ninja skills
• The greatest snow on earth
• Yummy restaurants near us

Rebecca- I am thankful for:

• The rain
• My three, beautiful children
• A warm, comfortable home
• Our country and those who defend it
• Hot showers
• The opportunity to vote
• Dates with Jeff
• The BEST husband in the world!
• Beautiful fall days

Jeff- I am thankful for:

• How the light shines in the fall (he was teasing me, because I always say this)
• Tyler getting up by himself
• Silly puddy (Jared was saying this one night and Jeff likes to be silly)
• Jeff's jello
• All three kids being 5 minutes early to school

Assistance Dog Camp Days1-3

Alyssa and I are in Lincoln, Nebraska at Domesti-PUPS Service Dog Camp!  After a long day of traveling on Tuesday, Alyssa began her training on Wednesday Afternoon.  Here's a day by day look at training so far.

Day 1-Wednesday
*We met all of the trainers and the other campers
     -Alyssa is the only camper from out of state and the only one getting a seizure assistance dog.  She is also the oldest of the three of them.  The other two children are so cute.  Jack is 6 years old and is paralyzed from the chest down.  He is such a cutie and makes wheeling around in a wheel chair look easy.  Haley is 7 years old and has cerebral palsy.  She has such a cute, spunky personality and doesn't let her disabilities slow her down.  Jack and Haley are getting mobility assistance dogs.  Jack's dad, Kirk, and Haley's mom, Jenny, are both so nice and we are having a good time watching our kids take on this new adventure!
     -Michelle is the CEO/Founder of Dometi-PUPS.  Becca is the director of the service dog program.  She actually has Epilepsy as well and has her own seizure assistance dog named George.  Merrie is the service dog program director.  Anne is the Edu-PUPS Coordinator.  There are many other volunteers that are involved as well, but these are the people that we will be spending the most time with.
   
*The kids got a picture of and learned the name of their dog.  They were so excited!  Alyssa's dog is named Astro.  He is a British Creme Golden Retriever.  He is beautiful and so sweet.  I think that he and Alyssa are going to be best friends before we know it.  Jack's dog is Kenzi.  She is a golden retriever.  Haley's dog is Rasco and he is black lab.  All of these dogs are so sweet!  I am amazed at how good these dogs are!

Day 2-Thursday
*This was the first full day of training.  We started at 8:30 and ended at about 8:30 that night.  It was a long day!  We were actually meeting the dogs in person but not until 3:15 in the afternoon.  It was a very long wait and the kids could hardly stand the suspense!  We had some lectures on how the dogs were trained and the kids spent some time with Becca's dog, George, learning a few commands.  When the time finally came to meet the dogs the kids were so ready.  They brought each dog out one by one and the kids got to spend time getting acquainted.  It was love at first sight for Alyssa.  And I truly believe that Astro is going to be the perfect dog for her.  He is very sensitive and sweet.  The trainers told us that he will take a little time to warm up to Alyssa, but once he does, he will be attached to her forever.  He is very loyal.  We just have to be patient as the bonding takes place over the next few days.
*After spending some time with the dogs, we all went over to a store similar to Color Me Mine where the kids got to paint there own dog dish.  Alyssa loved this!  She loves places like this and loved painting her own bowl for Astro.
*After dinner, we had to say goodbye to the dogs for the night.  Alyssa was very sad to say goodbye to Astro, but this would be the last time they would be separated.

Day 3-Friday
*More training today and Alyssa couldn't wait to get back to the training facility so that she could see Astro again!  We learned how to put on the dogs' leash and harness and learned more commands.  They also took pictures of the kids with their dogs for their ID tags.
*Today consisted of more training by lecture and by hands on work with the dogs.  They warned us that it would take some time for the dogs to realize that the kids were now the ones in charge.  They don't know the kids and they haven't been handled by kids before so it takes some time for everyone involved to adjust.
*After lunch the real fun began!  The leashing process took place.  From this point on for the next 3-4 weeks, the kids are leashed to their dogs.  This means that the dogs go everywhere with them.  Even the bathroom.  The kids have to do everything for their dog.  Alyssa is in charge of feeding, grooming, playing, pottying the dog (and cleaning up after the dog).  I am not even allowed to pet or talk to Astro because Astro has to learn that Alyssa in now the center of his universe.  This bonding process is essential to a successful partnership.  I never realized how hard this would be for the trainers.  They know and love these dogs and in order for the leashing process to be successful, they no longer acknowledge the dogs.  They don't speak to them, look them in the eye, or touch the leashes.  The dogs are also confused because they don't know who is taking care of them, so it will take a few days for this transfer of affection takes place.
*Later this afternoon we had a break back at the hotel and we were alone with Astro for the first time.  Alyssa amazed me!  She took complete ownership of Astro.  She wouldn't even let me help her put his harness on and even though she was very discouraged because it took so long for her to get Astro to cooperate, she never gave up.  She even cleaned up after he used the potty without complaining!  She is taking the leashing process very seriously and it is hard and strange for me to not jump in and help her when she is struggling.  This is a learning process for all of us!  She is doing very well and I am so proud of how she is handling the stress and challenge of this process.
*Tonight Astro spends his first night with us in the hotel room.  We are just going to watch and see how he responds to her seizures and then we will start to work on the specifics tomorrow.  He and Alyssa have just been snuggling and chilling all evening.