Calm Amongst the Chaos

Seizures SUCK!

Kim Nothdurft

September 29, 2010

Lily has not been sleeping, then last night she had a huge grand mal, then became inconsolable then she had another big one. Sharon (her awesome care giver) fed her a light meal, gave her dinner meds and a quick bath and we put her to bed and she did sleep all night.
I am praying this was due to lack of sleep, but I am afraid it means they are back. If they are back I will be devastated. She has been doing so well. Making so many gains. This makes me sad. I hate seizures. Ugh I hate them. Seizures suck!!!!!

Playing Catch Up

Kim Nothdurft

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September 28, 2010

When you think yeah things are gonna slow down they don’t. Or they do so much that you’re unmotivated to do anything. I’ve been dealing with so much lately and I am exhausted. Physically, emotionally drained. When I am struggling in life I go straight to writing and I have been, but it just hasn’t been public. I do hope in time I will be able to share what all has been involved in this past summer of hell but as of right now I cannot.
I did want to share some positive notes though! Andi Jane and I went on a Kindred Daughters Retreat this past Saturday. Kindred Daughters is a group that meets at church and it is where like minded moms meet who have the same goals for our daughters. Lily and Andi are both in KD with me, but Saturday was an all day retreat up north with hiking, archery, field games, etc, it wasn’t something I would be able to do with her and so I promised her a fun day with her and I that she will enjoy. Andi and I went to Prescott about a 2 hour drive. We had a great time. We really enjoyed all the games and lessons. Andi and I spent some time by ourselves praying in the woods and it was really nice. The entire day was really quite lovely.
Fri we finally got the approval for Andi to ride the bus with Lily. It only took an entire semester, but sMonday she started riding the bus with her sister. She has been so thrilled about this whole thing and has told everyone she sees about this fact. I am the one who should be shouting it to the roof tops, but I’ll let her do it for me. No more waking up Ollie to pick her up. And racing home to get there just in time for Lily bug. Yay!
Lily has been having a difficult time sleeping lately and having more seizures. I have been giving her melatonin and still nothing. She will scream happy, sad, whatever it is it is loud. I don’t know if it is because of the seizures or she is having the seizures because she is not sleeping. Hummmm….
But she is still doing well in therapy, school and is happy and healthy. I should knock on wood but she managed to be the only one in our home who did not get a hacking cold. Which is odd since she is usually a snotty gal, especially being in school already for 2 months! But we will take it!
Sunday we had a get together at my parents to visit with my dads cousin Ellen and her husband Paul who were visiting from Holland (The Netherlands). We hadn’t seen them in 7 years and it is always so great to visit with them. They brought the kids gifts from a popular story book there and it always thrills me to get something original that no one else can get here. I have to tell this little story about my Andi Jane, she went outside where Paul was smoking and she said to him, “you know you really shouldn’t smoke around kids”. He laughed and told everyone about it. Thank God they have a good sense of humor. Oh my Andi Jane. She can really brighten a room.
Ollie is doing great. So cute, so much fun. He really is a cool kid. We really enjoy having this little guy as our finale child. I still believe he is the cherry on top.
Being these kids mom is the best thing I have ever done in my life and I don’t take a moment with them for granted.

Little Sister

Kim Nothdurft

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September 18, 2010

We were running really late this morning, Lily had a 9am well check that I had already rescheduled 3 times and the lady on the phone from the Dr office made me feel like a felon so I had to make the appointment. Andi slept in late and I let her sleep as late as I could because I knew Lily woke her up around 3am and she had troubles going back to sleep. So we are all running around trying to get everyone loaded up to get Andi to school by 8:30am and have Lily at the Dr. by 9am. Andi was just in tears because all the shoes she wanted to wear no longer fit her. She was not happy with any of the shoes that fit her now. She didn’t understand why her feet grow so much. Drama, frustration, we finally get loaded up and headed to school and I realize Ollie had no shoes on.
We are too late for regular drop off and I tell Andi she has to go into the office, I mumble to tell them she is late because she couldn’t find shoes. I am crabby and kiss her and kick her out of the van.
We go about our day, Lily’s appointment is fine. Annoying since she needs no Dr. care, but whatever. I drop Lily back off at school, see Andi on the playground, wave to her and go about our day.
We had to take my cat to the vet since he recently had surgery and they had to remove the tube from belly. Sigh…. infected abscess… $500 later…
Ollie missed his nap. Needless to say less than awesome day.
I pick up Andi from school and ask her about getting a tardy pass. I asked her if they had asked her why she was late and she says “yeah I told them I couldn’t find shoes to match my outfit” I laughed out loud and asked her if she really said that and she said yes. I then asked what the front office lady said and she said she started to laugh and told the other ladies in the office and they were all laughing so she said she just ran to class.
I don’t know if it is because I really needed the laugh after this day/summer/life, but this just made me laugh with tears. I told Andi I really needed that laugh and then she started telling me jokes that didn’t make any sense. Oh my Andi. Such a character.

Middle School?

Kim Nothdurft

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September 13, 2010

As much as I would LLLLLLOOOOOOOOOOOOOOOOOOOOOOOVVVVVVVVVVVVVVVVVVVEEEEEEEEEEEEEEEEE to elaborate on that previous post, I will not. Sorry. Oh but do I ever want to.

So Andi Jane tells me that she wants to go back to gymnastics and I said I think we have to wait because we really can’t afford any extras right now. That is the back story to this:

Andi: “Mom I think you should be a teacher”
Me: “I don’t think so, the kids in your class don’t even listen to me when I say they need to stop using all that glue”
Andi: “NOOOOO, I mean you should teach like 7th grade”
Me: “I really don’t think that is a good job for me hunny”

I think we are done talking about this then a couple minutes later

Andi: “So can you start teaching tomorrow?”
Me: “No hunny I didn’t go to school to be a teacher, what is this all about?”
Andi: “If you go to work being a teacher then you can make money and I can go to gymnastics again”

Bless her little heart. I wish I could find a job, I totally do, but I am fairly certain the last thing I want to be is working with 13 yr olds. God bless you middle school teachers.

Have you ever?

Kim Nothdurft

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September 11, 2010

Have you ever come across a human that you thought only existed in movies? At least for sure Soaps? Someone who you think should have at least a sliver of a heart only to find out, nope, they don’t?
You haven’t? Oh me either…
Karma, karma, karma…

In my daughters eyes

Kim Nothdurft

2 comments

September 5, 2010

Friday afternoon I was a hussling hussy. Ok not really, but I like to play on words. But seriously it was one of those errand running days, Ollie missed his nap from the stupid nap robbing car ride and I was to make a meal for a friend of mine (and fellow MOPS member) who just had a baby last week. I love to be of a service to people, but the meal thing just makes me nervous. I cook just fine for my family, but for others is stressful. I never know what they would like, if they will like it and then once that is all figured out, I never get the timing right. It is just a stressful thing, but it is always rewarded by the chance to sit and hold a newborn baby. 🙂 ahhhhhhhhh.
So anyway back to the hussling hussy. I made cupcakes earlier, then while the dinner was baking I was making a special frosting, I am sweating, Andi wants to “help” but is basically just wanting to eat the frosting and Ollie of course is running on a 10 min car ride nap so he is screaming for me to hold him. I am trying to make sure Lily has her drink, snack and diaper changed in the meantime of all this.
Andrew gets home, I am trying to be pleasant, and pretty much take off, Andi in tow as usual.
On the drive there I’m sweating, looking a mess, and driving the van which although it has ac it really isn’t much of a match against 110 degrees in SEPT (!) AZ. Andi says to me, “Mom you are a nice person.” I think she wants something so I say “Why do you say that?” “Well whenever someone has a baby you make food and take it to them and when people die and people are sad you make them food and bring it to their house… that is like a nice person.”
And want to know what I felt? Proud. Amazingly proud. This summer I have felt like I have been a less than mom. Setting poor examples by being short with the kids, frustrated and not thinking before acting. But just something as simple as making a meal a few times this summer and taking it to someones home made my daughter see me in a different light and all of a sudden I didn’t feel like a sweaty disgusting hot mess, even if I was, in my daughters eyes I was a nice person and I felt on top of the world.
How lucky am I?

"I must be lost, I was looking for Easy Street…"

Kim Nothdurft

4 comments

September 2, 2010

I don’t know how “normal” I am. I don’t think that my mind operates like others. I’m not saying it is good, nor bad, just not normal. I live in a grey world. I know there is right and there is wrong, but the line is not made with a black sharpie all over my dining room table. Or figuratively either. I live in my world, the one that everything that happens is a lesson to be learned. I exhaust myself trying to figure out why that person in the pick up line cut me off and her license plate said “carma”. My mind is never ending running reel. I think of my life as a movie, I even have the soundtrack and often wonder how the story ends.
I can’t take a story that I hear and not try to put it into practice somehow. I take signs. I take signals and try to figure out what I am supposed to do with each one. Maybe that lady cut me off because God wanted me to practice patience. Or maybe he wanted me to have a good chuckle when I read her license plate. Maybe he was working on starving people in Africa and wasn’t paying attention. But that is just an example of how my mind works. I’m a dreamer, but not in a magical world with lollipops and gummy bears. I try to take the poop and see if I can’t at least sugar coat it enough to at least look less like poop.
This summer has been a never ending season of tears, anger, fear and frustration. Sure a few smiles from my amazing kids, but for the most part it’s been sweat and tears. Literally, it is an Arizona summer. I’ve put on here some struggles and I choose not to put up others. I’ve learned a lesson with blogging and as much as I enjoy airing out the dirty laundry, I will not. Just understand this summer has been probably the hardest season I have ever had to deal with. Not one particular thing, but a snowball of things that leaves my mind reeling. Wondering. Dreaming. And I’m trying to put into perspective what am I supposed to take from this and where do we go from here? I am still doing this and that is why I have not come here to “talk”. My handy notebook with handwritten notes is where my heart has been going lately and when I am dead you all have yourself a movie for gosh darn sure. But in all seriousness, I want to not look back on the summer of 2010 and think God that sucked. I want to look back and say God that sucked, but I am so glad that I took this away from that and now I can apply it to my fall of 2012, or whatever. I obviously am someone who gets it you can’t have the sweet with out the sour. Yup, got it. It’s literally written in ink on my wrist, “make lemonade”, but I need something deeper. I need to fully understand why this so we can have that. So I may not be the coolest blogger out there and my apologies, but I’ve never been cool. Ever. So I really don’t mind not getting that award.
After all that ramblings there is a life lesson I learned that I wanted to share. It’s been on my mind for weeks now since sweet Emmie’s funeral. Something I have a hard time sharing without immediately swelling up with tears. I do not feel comfortable sharing other people’s stories, especially about something as delicate as this. I feel like sharing a story that isn’t my own is not my business, but when Emmie’s parents shared a story with us at the funeral it was something so profound that I carry with me everywhere I go and I hope no one would mind my sharing.
Emmie’s dad spoke about their recent vacation, a cruise, and one day Emmie’s dad wanted to take her swimming so he carried her to the pool, but found it awkward to get in while holding her. A stranger saw him and said, “Can I hold your daughter for you so you can get in and I’ll hand her to you”. He used his help, swam with Emmie for 30 minutes and the entire time the man stood there with his son and waited for them and helped him take her out of the pool. That’s the story that was shared, amongst many other beautiful stories. This one I particularly took to heart because who knows how that mans day was going previously. Maybe it was a bad day? Maybe good? We’ll never know where that mans heart was, but I am pretty sure he had no idea what gift he gave this family. I don’t think he knew that a few weeks later the story would be shared at that sweet sweet angel’s funeral. He probably thought it was a simple task that anyone would do, but honestly I don’t think many would. He might have thought it was something simple, insignificant, yet now this dad will always have the memory of swimming with his daughter on vacation and not of wanting to swim with her but couldn’t because of her handicap. He will remember the goodness in a stranger and will share that story so all of us can think twice the next time we want to stop to help someone, but are in a hurry. Or we figure someone else will do it. Or we don’t really want to take the time to just stop what we’re doing. Maybe after hearing this story we stop making excuses and just do.
It just proves how with every struggle we face in life we have to find out why we have these struggles. It isn’t easy.
Just Friday night I cried myself to sleep because I wanted nothing more than my daughter to beg me for an itouch or a cell phone or hell Justin Beiber tickets for her 8th birthday. But she didn’t. She never asked me for a single thing. I still struggle with one of the biggest life lessons in my daughter, but I am doing better. I let myself feel sorry for what should be, but on Saturday 8/28/10 we celebrated the best gift, the best lesson I’ve ever had and that was the 8th birthday of our special LilyAnna Blu.
I try to put positive twists on everything and I will always continue to do that because I will not be someone who will muddle through life just surviving. I will learn until the day I die and I will share my lessons with my children and hopefully my grandkids and yes they will think I am crazy, but they will one day appreciate it and hopefully some of them with think just like me and continue to learn and teach their own lessons.

Sisterly Love

Kim Nothdurft

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August 27, 2010

Last night we had Ariel come for the last time this summer….sniff sniff… she has been the best this summer. She was Lily’s hab and respite provider and the best babysitter for the other two. She asked (yes asked) us to work one more night before heading back up to NAU for her sophmore year. She came and while I was doing my chicken dance running around getting dinner for all the kids ready so Andrew and I could go on a “date” (we had to go shopping for stuff for the kids), Andi asks me to write down what I like about Lily. I write her sweetness real quick and don’t even think another thought about it. Well come this morning while feeding Lily and Oliver I look over at the donation box from the fundraiser and I look in it and I see a note Ariel wrote about Lily, my note and a note from Andi saying I love my sissy.
She made a box of things we love about Lily, melted my heart. Sure she is fiesty and her and I will probaby fight until the day I die, but her heart is so tender and I just adore that she is our daughter.

We Splashed for a Cure!

Kim Nothdurft

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August 25, 2010

Wow! What a weekend!
Andrew and I had a little “staycation” in Scottsdale Friday night, our anniversary was Wednesday August 18th and Grandma Cheryl was here in town to help out with Splash for a Cure. We took advantage of her to watch the kids and advantage of the awesome rates you can get at 5 star hotels because who wants to be in Arizona in August. And we had dinner and a night out on the town. No curfew, although we were in bed by 10pm. No one waking us up, except for we were both awake by 6:30am. But we had no one to feed but ourselves. And that was awesome.
Then Andrew dropped me off at a spa where I met up with my mom, sister, niece, aunt and cousin to where we had massages, facials and swim time. I thought the last thing I should do before Splash for a Cure was relax, but it surprising went well. Those ladies were on my committee so we talked a lot and planned a lot and relaxed a lot.
However when I got home, I got to work. And so did my amazing team of women who none of it would have been possible with out! Jennifer Cavanaugh, Nancy Diepstraten, Gloria Mason, Kim Dimas, Liz Beisemeyer, Ashley Galvanoni were my core team. I also had help from my nieces, my nephew, my cousins, all the other half of the women, plus a few friends went far and beyond getting me amazing raffle prizes. It practically went flawlessly. There are things that I am kicking my butt over but there is nothing I can do but just not do it next year (and yes there will be a next year!).
A little rundown for those unable to attend:
We get there at 5:10pm and they let us in to set up, event starts at 5:30pm and we did not have enough time. But those who showed early were patient and some even pitched in a hand.
Rick from Tom’s BBQ came alone and brought enough food for 200 people! He donated it all, his time, his food all for free! We got about 100 hotdogs to give to the kids and we were totally out of food at the end of the night. Since Rick came alone Andrew served food with him all night long. I was proud of him doing what he had to do to help out. And hopefully if the construction field crashes here even more than now, at least we know he has something to fall back on.
Everyone was swimming and chatting, it was probably about as hot and humid as AZ can ever get and I felt bad for those who did not want to swim and will next year see if we could do it in September. The raffle prizes were awesome and I had my niece Skylar and her friends out selling raffle tickets, Ashley and my mom working the raffle tables sweating their tails off. We sold a lot of raffles and every single item had raffle tickets in it. Some more than others, but all in all those were some pretty coveted items!
Then we sang happy birthday to the beautiful birthday girl and we had cupcakes made for everyone (Jenn, Gloria and I all made several dozen). Then we drew for the raffle and it was over.
And I kept thinking once this is over I’ll never want to do this again, just like after running a half marathon, I did that once and I pretty much stuck to that whole never doing that again, but when this was over I felt high. It was this overwhelming sense of accomplishment. We made, I don’t have a complete tally yet, but over $4,000!
Andrew’s parents did a fundraiser in South Dakota during Sturgis Bike Week and they rose over $6,000 so our team Lily will be contributing over $10,000 to IFCR (international foundation for CDKL5 research)!
And now we just know we can do more and can do better.
We are just so proud to be Lily’s parents and to have a name of something that we can beat if we really try. There is a cure out there, we just have to have enough money to get there to be interest in finding it. Sad but true. So we will keep going for Lily, for all the kids like Lily. We will fight until we find the cure and appreciate everyone willing to put up their gloves and fight with us. (or your pocketbooks, that works too)
I will be posting a video soon with the photos from the event. I’ve got one hour left of the boys nap so I will get on that right now!

2 Days

Kim Nothdurft

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August 20, 2010

2 days until the big day! The day I have been stressing out about for the last 2 months! I am excited, nervous and well freaking out. I am sooooo not a party planner, I am not someone who asks for anything. This is every bit out of my comfort zone, yet I’m amazed at how well it is going so far. There are a few things that I am really nervous about, but in my experience in life the things I get worried about and stress about always end up never as bad as I imagine. So let’s pray that is the case. I have the most amazing team of women who have helped me along the way from planning, to making, to doing. I am blessed to have the people in my life who help others because they want to. Thank you ladies and thank you to those who sent my email out and had friends send it out. The raffles items are amazing and I could have never asked for a cooler group of family and friends.
I am asking those who plan on attending to pre purchase tickets at http://splashforacure.blogspot.com and for those who cannot make it, please pray for a smooth running, succesful event.
I will update on Monday!