Rollerskating Fun

Brielle is into rollerskating lately. It's her new thing and we have been letting her express herself and go to lessons to learn "tricks." Ash enjoys it too and the following is some pictures I took the last couple of times.

 

 

 

Long Week

The nurse had a perfect description for it. She described it as a plane trip you can't get off of without the cramped seating and crowd. I agree.

This week Ash had a five-day in hospital eeg. She has been having seizures for the last year that have not gone away when we increased her dose. They aren't bad and they don't affect much but they won't stop. At this point, that means she has failed four medications and the doc said she has has a small chance of finding success on any medication. So he wanted to explore the option for surgery and Ash wanted to as well. The first step on this journey was to catch the seizures with an eeg and camera so they could see if there was a focal point to address, hence the five-day stay.

I don't know how you balance these these challenges in life. I think it's more of a plan and brace type of situation. Hoss took days and I worked during the day and took the nights. Brielle went to school, spent dinner with sister and got dad all to herself at night. Ash patiently endured it the whole time. She had a 40 foot radius in her epilepsy pod and spent the time watching TV, playing her bass, crafting with her sister and doing the homework they assigned.

They took her completely off her meds and saw all the brain activity they needed in a controlled environment. Her emergency med chart terrified me and even included atropine and the heart paddle dosages, but they never had to use even an emergency dose of epilepsy meds. Now that it is over we have more tests and then all the specialists will sit around and come up with a recommendation. For now though, it is over and we are all relieved to be done.

Last night, for Friday movie night (our family tradition), we went to the base theater and sat through Guardians of the Galaxy 1 and 2. Bri and I were bored out of our minds and slept through most of the second movie, but Ash and Hoss were in heaven. I was just thankful for the normalcy of the whole thing. It was a long week, but we have so much to be thankful for; Everything went smoothly in the end and everyone came out of the week unscathed. It was more than I hoped for. Life is good.

Crafting with sister

I love this picture!!!!

Bri got lots of puppy snuggles to make her feel better when she was worried about sister.

Friday was mismatch day at school. Bri went all out;)

Fresh (re)Start

Hello World! It's been a while!

There are so many reasons I quit blogging and so many reasons to start again. So I will and hope that it creates a space for those far away and those nearby to feel close to me.

I have no way to write a few years into this posting. I can say it continues to be a whirlwind and we are blessed to be with those we love and cherish whenever and wherever we can. The girls grow in mind and stature everyday and I feel so grateful to be a part of their existence. They bring me joy every second and I hope my constant adoration for their uniqueness and the vivacious way they embrace life never drives them away. I am their biggest fan.

This Summer we were so fortunate to be able to take a trip to DisneyWorld. It was a wonderful experience and I am happy that our lives afford these luxuries. I do not take our ability to go on trips for granted. It makes the long days at work and the time away from my family (while they are at school) that much easier to bear.

Ash is in 7th grade and Bri is in 5th this year. I can't believe they are getting so old. It terrifies me to watch them grow and be exposed to all of the bad things in this world. I want to go off the grid and raise them in a natural state where the pollution of human nature cannot create the toxicity that marks our journey from childhood to youth.

At any rate, every journey starts with a single step. This is mine and I will attempt to keep going on this path. TTFN.

I love this pic because of the troller in the background! 

Bri was so excited to meet Olaf. He was the only one she wanted to see.

These next couple are from a nephew's Eagle Scout cermony...

I love my puppies!!!!!

Twinsies! 

Waiting for a night show

Park 3 of 4...DisneyWorld is huge! 

Last Day! 

It Gets Better! My take on Epilepsy...

“It gets better”…. These were the words said to me by the school administrator when I had to tell them that Ashlynn was admitted to the hospital again after two more ER visits and another three-day admittance the week before. Living with a child with epilepsy makes these words seem so empty, but it is a phrase that I clung to over the course of that week. Last Saturday, after two and a half years of medication and chaos, she took her final pill and we are seizure free. It’s been a long road, but it did get better.

Ashlynn was diagnosed with simple, partial seizures in Fall of her Second Grade year. The simple part means that she is coherent and can verbalize during the seizure. The partial part means, for her, that only one side of her body is affected. So for her, she experienced complete paralysis on her right side and it went stiff without her ability to control it. The first time we experienced a seizure was when she was four. She was walking hand in hand with her dad and she started giggling. She went limp in his grasp and folded over onto her right side; he told her to pick up her feet and walk. She said “I can’t myself is tickling me!”  After that we took her to the doctor and the physical turned up nothing so the doctor told us to ignore it. A few months later we were eating at the dinner table and she folded up again. This time she was horrified because she knocked over her water glass.

These episodes happened periodically and all of the internet searches I did revealed nothing. We told her to ignore it and pretend that it didn’t tickle so she wouldn’t draw attention to herself. It wasn’t until December of 2012 on opening day of the new Hobbit movie that we got concerned. That morning we went to Denny’s for breakfast and she was so excited!!!! However, walking into Denny’s it happened; She crumpled up and her dad scooped her into his arms and waited for it to go away. Over the course of the meal it happened again and then about once an hour after that throughout the movie. We still were not concerned, but I started recording the time and length of the “tickling” episodes.

We recorded them over the weekend and by the end we had had over thirty episodes so I made a call to our doctor to have them checked out. While we were at the doctor’s office she had another one and they immediately called the pediatric ward to set up a bed for us. That was the beginning of our adventures and the chaos that followed. Nothing is normal when you have a child with epilepsy. Your idea of what is normal in life constantly changes.

When you have a child with epilepsy even a simple trip to the Balboa Park Carousel can create a panic attack as a parent. She was an independent seven year old who wanted to ride alone. I had already witnessed her standing in the middle of the kitchen when one came and she fell, face first, onto a stool; bloodying her face and knocking out her tooth.  The doctors told me she couldn’t take a bath because she could drown, but she had one in the shower and when she fell she bloodied her body on the corner of the counter and became wedged in-between the door and the counter so we couldn’t get to her until she could physically move herself once the seizure was over. They happened everywhere and it was hard to predict. Riding the carousel for those two minutes without me meant that she could have a seizure and I wouldn’t be able to catch her or fix it while it happened. The desire to hover and protect her was a conflict I would experience everyday for the next two and a half years.

At the beginning, we had periodic breakthrough seizures when she would grow and then we would adjust her medication to make them stop. The medication was pretty successful for us and the only side effect we experienced on Trileptal was that it mellowed her out, which for us was a good thing. She’s a kid that moves nonstop and can never sit still. The medication took care of that and, while it dampened her intellect by a bit, we were so thankful to have it. During this time we met amazing people through the Epilepsy Foundation who became dear friends and helped us navigate the territory. They helped her meet kids just like her and she became proud of who she was, epilepsy and all. Unfortunately, having epilepsy brings you close to these people though because you all understand the bad times.

Our first bad month happened in February. I was scheduled to take the California Bar at the end of the month and my stress level had the whole family on edge. At the beginning of the month she started having seizures at school and I would pick her up afterwards. By the end of the first week it became our new normal. I would drop her off at school with a brave face and then drive away crying, knowing that she would have a seizure and hoping that she wouldn’t get injured. She just wanted to be normal and I wanted to let her pretend that she was. I would be home long enough to start studying and then I would get the call to come get her. It was awful. We upped her meds twice during this time, but it didn’t do anything. Her seizures stopped the day I took the last examination.

Our last and worst period started after an extended series of unfortunate events. Her uncle, who was living with us and who she was very close to, left for boot camp. Then her dad, who is a Marine, left for Afghanistan. Then her Great Grandpa died and the final straw that set the whole thing off was when another uncle, who had been working in San Diego, left to return home. That next day was the start of four long months. She had between four and twelve seizures everyday for that entire period. 

Under the advice of the neurologist, we upped her Trileptal dose until she was dizzy, nauseous and confused all the time. When it didn’t work they left that dose where it was and added Keppra. Keppra changed her. I lost my beautiful girl. She went from being an intelligent, happy child to a depressed monster. She would scream at the top of her lungs over the smallest thing because she was so frustrated and angry. Then she would cry because she had yelled at us. When she wasn’t yelling or crying she would sit in her room with her headphones on because she couldn’t deal with life and didn’t want to be around people. Even at school she lost all of her friends and became socially awkward. Taylor Swift’s music was her only relief from a world that had turned upside down.

I was so worried. By this time she pretty much just did her work at home. I was trying to teach her, but her brain was so foggy that we would work on one concept for fifteen minutes and then she would be frustrated and need and break, but when she came back from her break she wouldn’t remember what we had gone over so we would have to start again. This would get her even more upset because she knew that she should remember, but she couldn’t. Doing three math problems could take us over an hour. One day I turned in the Math homework that she had completed and the teacher asked her to sit down and do the unit test. She couldn’t do one question. He asked me if she had done any of the homework that I had turned in for her. I went home and cried. It had taken us so many hours of chaos to get those few pages done and all he could see was the failure of that moment.

When the two medications still didn’t work we added Onfi on top of them. This caused sensory problems, short-term memory loss and major weight gain.  She gained fifteen pounds in six weeks (20% of her body weight!). She couldn’t remember a chore long enough to hear it and make it to the room where it needed to be done without forgetting what she had gone there for. We couldn’t make it through a grocery store without her crying because of the noise. I tried to go through the car wash and the pressure and sound had her screaming in pain. She took to carrying around a bumpy elephant that she found because she could distract herself by rubbing it when we had to be out in public. She would panic if she didn’t have it when we left the house. Her dad was still deployed, and she was never in school long enough for me to get anything done, so I had to bring her on errands. When I would bring her out I would put her in the shopping cart, if they had them, in case she had a seizure. Oh, the looks I would get from people who assumed I was a lazy mother whose child was much too old to be in a shopping cart.

I remember one night very clearly. She wanted so badly to perform “The Nutcracker” with her ballet troop, but by this time she was on all three meds and not really there in body or spirit. I had brought my camping chairs and activities for my youngest daughter, Brielle, and I to have while we waited outside the doors. We couldn’t drop her off because I needed to be there if she had a seizure. At any rate, one hour later she came out stumbling and said she couldn’t do anymore. She was exhausted and dizzy to the point of collapse. I had to carry her, the two chairs and hold Bri’s hand as we navigated through the busy parking lots. She was totally limp in my arms and I had to keep her talking to make sure she wouldn’t pass out. She couldn’t even make a coherent sentence. That’s when I knew it was bad. She never got to be in “The Nutcracker.” They let her wear the costume and help them during intermission, but she never was able to dance.

At the end of this time her seizures were lasting long enough that we were rushing to the ER and using enough emergency breakthrough meds that she wouldn’t remember how she had gotten from one place to the next when she was alert enough to realize that it had changed. She was admitted twice and finally in December we started seeing the light at the end of the tunnel. She was slowly taken off Keppra and Onfi and she started to improve.

In January she started smiling again. I had missed her laugh so much. She ended up being homeschooled for three months, but this Spring she reintegrated into a fabulous school that understood our complicated dynamics and loved us anyways. She is doing a presentation there next week on her favorite subject in school and she is doing it on Math. She has friends again. We completed a psycho-neurology evaluation last month and she is average or above average in everything.  Now that she is off medication she moves constantly and has a hard time falling asleep, but it is a side effect I’ll take over anything else. I am so thankful to be able to say…

It got better.

The Witching Hour...or my version of it...

So here's how my day went...It was pretty much ideal. I woke up before the girls so I could enjoy a cup of coffee in the quiet of the house before the girls woke up. I had a perfectly serene coffee moment and even spent the time texting Hoss. It was fabulous. Then the girls woke up and we snuggled on the couch while they watched their allotted one episode  of Netflixs each. Ashlynn calls me her Scooby Doo buddy and we were pals while we watched. I gave her, her meds. I heated them up my homemade breakfast burritos, I had my Fiber One, and we started off the day right.

Then in the later morning, in-between playing Scrabble with Hoss via app, we got dressed and ready to start our day. We cleaned the house and I even played dolls with Brielle. We were planning to go to the science center and walk around Balboa Park. I had gotten a coupon in the mail for Michael's though and so we decided to hit that up along the way. Brielle had been asking for polymer clay after she was introduced to it by a friend. So, with coupon in hand we went to the strip mall to get her a starter set. Then while we were there they asked for yarn and we picked up some of that too. Then they saw the Dairy Queen and, as it was a hot day, we got dip cones at the request of Ashlynn. Talk about one who is prone to advertising and suggestion, they have me pegged! Anyhow, we sat and people watched and ate ice-cream. It was awesome.

After that we were supposed to go to the science center, but they were so excited about their new crafts that they wanted to go straight home; and since we have an annual pass to the science center I decided to let them be excited and we went home.

Home was fabulous. I turned on the classical music and the A/C and the girls crafted while I got a couple things done on the computer that I had been avoiding. Everyone was blissfully happy, no joke. It was great! We stopped to go to Brielle's swimming lesson and then took her home to shower so we could head back out to Ashlynn's first swim team practice. She was so jazzed. She was a trooper. After lap 20 I was a little worried for her, but she only cut the pool twice.

We got home at 6:30 and I prepared stir fry, rice and watermelon. This is pretty good for me. Since Hoss has been gone our staples are ramen, mac & cheese, cereal,  PB&J and whatever else I can throw at them. I usually try my best to avoid even sitting at the dinner table because it just makes me sad because of the two empty seats. Anyhow, I made a real dinner and we sat together and ate it. I read to them during dinner from their body book for girls (a great conversation starter) and we had a lovely meal that was shared with Hoss via text.  We talked about our summer and the girls suggested it could be better if they had unlimited electronics access.

Then we actually got a chance to blog (I've been having a hard time fitting it in) and Ash wanted to play her new scrabble game so we started that while dad was texting everyone...and that's when my perfect day went downhill...the witching hour. The one we all dread that takes apart our parenting and the calm facade we treasure and throws it down the drain with the garbage that is called life.

It started with Brielle. She was playing with her polymer clay fairies and had brought out the craft bucket so she could decorate the blueberry container she salvaged for their house, but when she was done I guess she was cleaning up the contents and she threw her fairy in too. So yeah, she starts freaking out (its 7:45 which is fifteen minutes to bedtime) and dumps the bucket on the floor. Now this is a bucket that is chock full of glitter and sparkly things and bits and pieces of every cherished craft we have ever done and she says "Oh mom I guess you are going to have to vacuum again today huh?" and I'm thinking "add that to the list of crap I have to get done now that I'm exhausted" but I answered "Yes, I guess so" and then she bursts into tears and a fit because she just found her fairy and it's wing is broken off.

So she is completely inconsolable, remember its bedtime, and I have to calm her down enough to tell her I will fix it with super glue after she goes to bed (add that to the list along with the dinner dishes I left for later because Ash wanted to play scrabble) so she's still convinced that it will never work and is going to be in a bad mood the rest of the her short evening. So I ask the girls to go brush their teeth and Brielle starts to throw things and tells me that she wanted to play chinese checkers with me on the same app and "it's not fair" that I played with Ash and not her. So I have had it and send her to the corner to figure out a nice attitude, while I tell her that she doesn't get to play because she didn't do her reading and she doesn't get iPad time until her reading is done and she didn't want to do it today and Ash did. In the meantime the craft bucket is still all over the carpet and the dogs start sliming it.

So in comes Ash from the bathroom, where I sent her to brush her teeth, and I can sense from the time she spent that she hasn't brushed her teeth and when I ask her if she did she says "No, I just went to the bathroom" so I send her back. Which would normally not be a big deal, but because it's the witching hour she trips over the dog and jams her thumb. So she's screaming and crying and worried about the dog and I'm dealing with her finger and still hearing Brielle in the corner in the background. So I get Ash calmed down and send Brielle in after her hoping to just get them in bed with my sanity in tact.

If that was only the end...ahhh...but it isn't. So Ash and Bri finish and I send Bri to the living room to tackle the craft mess and Ash to their room to clean it up. Brielle, of course, ends up putting another fairy in there accidentally and has to start all over when she was just about done and I follow Ash into the room to make sure it's good and the pets are fed for the night. She had already grabbed water for them in a cup and that sloshed all the way from the kitchen to the bedroom. Then somehow her dress ended up slung across the standing, swivel mirror and as she eagerly rips it off the heart decoration on the mirror comes off with it. And this is the mirror we painted and glued every heart and jewel to specially for Brielle's birthday and the centerpiece is now broken. So she's devastated and starts freaking out to Brielle about how sorry she is and can I fix it?! Well, sure....add that to the list along with the laundry because your swim suits and towels are needed in the morning! So I'm trying to be calm but I'm at the end of my rope and even if I  don't raise my voice they can sense it and so she's apologizing profusely to both Brielle and I and it makes me feel awful because I know she didn't mean to. And Brielle is upset about it and everyone is feeling a little flustered.

Of course all I want is a glass of wine by now, but it's still a list of chores away. So yeah, I get them changed into Pjs,  in bed and settled. I started vacuuming and feeling like we made it, but we didn't. The girls remembered that they hadn't gotten their kiss from daddy. It's a chocolate kiss from a jar he decorated for them before he left so they can have a kiss every night from him.  I told them to stay in bed and went and got them one. Well, they have been sleeping in the guest bed together and it has white sheets and a white comforter...I bet you can guess where this is going. Brielle says "oops"; I turned on the light and somehow her mouth of chocolate had dripped onto the comforter and as I told her to get up and go wash her chin she wipes it with her hand and puts that hand onto the comforter as she gets up.

So here I am trying my hardest to hold it together and she's feeling bad and I am scrubbing furiously at it with a dishcloth and I finally get it all up and tell them we need a hug. Well, Ash holds back and I tell her to come over and when she gets gets up there is a chocolate dripping on her pillow too. I sent her to the bathroom and we had our hug and then I finished cleaning it up. All this in the span of about 30 minutes.

Here I sit an hour later feeling like a terrible mom for not holding it together better. I am exhausted. The laundry still needs to be folded but the dishes are done, the house is vacuumed and the water is cleaned up.  The kitchen and living room surfaces are wiped down. The mirror is fixed and so is the fairy. Hoss texted and I told him I needed to sit on the couch and have my wine. Of course the glass is still sitting in front of me full though. I can't drink it. I worry that, as a somewhat single parent, Ash could have a bad seizure and we would need to go to the hospital and what kind of mom would I be if I had a glass and couldn't safely drive her or tend to it. I might have a half of one, but somehow it's soothing just to hold it until it's not cold anymore.

I don't get it. How does such a perfect day melt into the atrocity that makes me want to crawl into hole and hide until it's over? We were doing so good. How do these things come when I am at my weakest and feeling tired from the day, it's just not fair. Oh well, I just figured I'd share. The witching hour won tonight, but I live to fight another day. They are now asleep and I will be soon too.

First swim team class!

Dear Daddy,

Today I had a fun day. It was my first class of swim team class. It was awesome. I loved it very much. It was really cool. There was this girl and you know she had like a sassy voice that Brielle uses all the time...you know...she got put at the back of the line because she was slowing everyone down and then she got in front of me and said "I get to go in front of you because I passed you". And I told her to ask the teacher and she said "I am going to ask the teacher" and I said "yes do" and after I told her yes she started to go off about how people who say that are mad about stuff and kept going on and going on. And I went and swam then told her..."Oh look I got here first" and then she said..."because my googles weren't working"...so I wanted to say "yeah right!" but I didn't because it would be rude and I am not a rude girl...Ok maybe sometimes.

I also got yarn to knit with. And you know how I love to knit sometimes! I am knitting a hat. The yarn I got is white with other colors in it. It is called loops and thread. We went to the craft store. Thats where we got everything. We also got polymer clay. Brielle loves Polymer clay. We first used it with B. That's how we got the idea to buy it. Mommy took us because she had a coupon. Then while were there I begged her for Dairy Queen because it was at the mall we danced at remember the Christmas Tree one?

I dyed their hair pink...They love it, but it sure did fade fast! 

Bri hamming it up while Ash was swimming

Dear Daddy,

I love you and miss you. Today I had a great day! It was super fun, except when a kick board punched me in the face at swimming class. I love you. Blog back to me if you can!

Today with our polymer clay (what Ashlynn was talking about) I made fairies out of it. They are really cool little things. That's what I would call them at least, but you can call them whatever. It doesn't matter to me that much. Well, I hope you have a great day and I just wanted to write to you on the blog today. Oh and daddy I hope you knew that Ashlynn loved her present that you gave her. She just got it. (he got her a flag flown over the base).

Love Beanie. Muaahhhhh!

Their polymer clay things they have been making

Another day...

Dear Daddy,

I love you and I miss you. Today I'm having a great day. I watched Muppets Treasure Island. I liked it a lot. I have already watched it before. We watched a lot of TV today because Ashlynn was sick again because of her medicine.

Today at swimming lessons I had a lot of fun. It was fun because it was fun. I know that really makes no sense though. I did a lot of lap swimming at swim lessons.  We also watched a lot of Scooby Doo. Misses Piggy was really chatty in the Treasure Island thingy. Well, I'll blog to you tomorrow. I love you.

Sincerely,
Brielle


Dear Daddy,

Today I had a kinda great day. Half of the day...because I slept the whole time, because of my medicine. Mommy woke me up with some Scooby Doo because I wouldn't wake up. My dream was that the bad parrot in Scooby Doo was trying to get these golden disks and I don't know what was going to happen. While I was sleeping B. came over too and played with Brielle.

Also, at swimming all we did was circle swimming, with lap through lap through lap. I did backstroke, streamline on my back, and breast stroke. Oh and my teachers name is Miss Lacy. She is also the polo and swim team coach.

At dance I did ballet class but I couldn't because my neck was really hurting during tap class. I love you daddy.

Love, Ashlynn.

Home Again

Dear Daddy,

Today we played with R. and we went to her party and then sat down and watched Scooby Doo episodes. We are on the 22nd episode.

Todays weather was rain and it had thunder with it and the dogs went crazy over it.

At R.'s party we went to the beach instead of the park and got soaked. We are maybe going to see R. on Saturday but we are going to see R. for sure on Sunday.

Today we also got our hair dyed "atomic pink". It took a long time, but we liked it. We just did the ends.

Love, Ashlynn

Dear Daddy,

I love you and miss you. Today we went to R.'s party. It was really fun. We also were supposed to go to the park, but there was water next to there and we chose the water instead. We got soaking wet! And we were playing puppies and laying down in the water and walking on our hands. It was really, really fun. I was still in my clothes in the water.

We were supposed to have another playdate, but we didn't and I was happy because we were tired and  exhausted. We also would have had three playdates because there was the concert at the end. And after that we watched Scooby Doo. Me and sister snuggled up on the couch with a blanket and then we watched "Muppets Take Manhattan". It was really fun. The whole group splits up and then comes back together to be on broadway.

Today me and Ashlynn are also being twinnsies. We are wearing the same shirt and jeans.

Sincerely, Brielle