Calm Amongst the Chaos

Jesus took that wheel a time or two

Kim Nothdurft

March 9, 2015

It’s a long drive from Phoenix back to home, luckily it’s almost all freeway and usually in the middle of the day so it isn’t an awful drive, just a long one. While I am always thankful for clear roads (strangely my patience seem to do better with those) I am even more thankful after tough appointments with Lily for them because driving and sobbing at 65 mph is not strongly recommended, especially not in heavy traffic.

I remember the first time this happened, Lily was 5 months old, I walked at a super human pace carrying a heavy Lily in her infant seat from the doctor office to the outdoor parking garage elevator trying to smile at the strangers for the eternal 30 second ride down. I then race to the car, buckled Lily in and sat in the driver’s seat, started the engine and dropped my face to my hands, loud sobs escaping as I hear the doctors words ring in my ears “yeah, she can’t see very well”. She was 5 months old. We were slaying the seizure beast and now this. This?! My heart ached in a way I wasn’t sure how it would ever recover. I sucked in some air and put the car in reverse and drove home. And side note, found a kinder, way better pediatric ophthalmologist.

The second time I remember I was driving down the I-10 my ears rang as I heard his words over and over again. My precious girl at that time was now 3 year old and in her car seat sleeping while I frantically wiped at the hot tears rolling down my face “she’ll never walk, she doesn’t need those braces”. I had walked into that appointment with a purpose and hope and he took that hope ripped it in shreds as casually as we would have talked about the weather on a Tuesday morning. I spent the rest of the day broken and angry. Also still determined and she got the braces and lost that Doctor.

The third time was many years later and was when our trusted and beloved neurologist recommended we meet with a palliative team just to make plans we hope to never need. She was soft spoken and tender hearted as she told me we should do these things now when things are good and minds and clear and we can pray those plans can stay in the cupboards and never be pulled out. No matter how tender she was, no matter how good hearted her intentions, no matter how responsible and real those things were for her to do as a professional, no matter if I knew these things as facts tucked back in the very furthest part of my brain, they never made it to my heart and so then when she said them out loud, well out loud changed everything. I was sucker punched, devastated, I was blubbering, sobbing and driving with shaking hands and all I can really know is I am so thankful Jesus took the wheel.

(I have to add not for literary sake, but for the sake of my friends and family reading this, this appointment was necessary, it just sucked. Because of that appointment we met a wonderful doctor whom I am glad will be with us if ever needed, she hooked us up with the Ryan House and we got a Disney Cruise from Make a Wish…. The appointment sucked. Hard. But that is the reality of this life. Sometimes things suck hard and we just have to move thru it. It is in the past. And God forbid we ever need those services, we are set. But I would also like to add I see in the future, Andrew, Lily and me driving around the US in an RV. She is in our retirement plan. Just thought I’d let you all know that)

And all this to lead up to telling you all about the last time I spent my drive home in tears and that was just this past November 7^th2014. This was a routine appointment where we would get her an X-Ray and check her spine. We’ve been doing this for many years; I’d venture to guess to say at least 5 years. Each appointment is the same, so many degrees we will keep watching her. She has been given braces but the scoliosis she has is neuro muscular and there is no stopping it. We have been told surgery is in her future but we were thinking more like age 14. Except for in Colorado when we went to the CDKL5 clinic, they wanted her to have spinal surgery last spring, but we preferred to trust what our surgeons here thought and do that major of a surgery close to home. But the surgery is another little piece of fact tucked in my brain that never ever has swam down to my heart, until November 7^th when Dr. White walked in and said “she’s over 50 degrees now. We need to schedule her surgery”.

I sat there. I stared at him. I waited for the mumbles coming out of his mouth to make sense. When they finally did it seemed like he was walking out the door before my mouth opened to talk. I sat there. His PA came back in to give me something and I asked for some literature on this surgery. I needed something in my hands, something to absorb in my brain. I had no idea what we just all talked about. She left and came back and handed me some papers.

That was 4 months ago. I have spent a lot of time researching, talking, praying and praying and praying. I have had my nearest and dearest been praying with me and I am feeling peace about it… now. I have a wonderful large network of amazing people whom can answer my questions because they have been there. On Wednesday (11^th) I will tour the hospital with Lily and I will be able to speak with recovery nurses and there will be a mom who has been through it and she will be there to answer my questions (poor woman to have to answer all my questions). We are fortunate to be able to have the expertise of Phoenix Children’s Hospital just a teary bit of a drive down from our home. I am doing everything I can to make sure we are not blindsided this surgery. I have barely just started talking about it publicly and that is why I have been spending a week writing this post, I know it is time to share, but I guess I had been waiting for the right time that seemed to never come. So I am forcing it.

This is the last thing in the world I want Lily to go through. It is the last thing I earth I want to go through. It is something I would only speak in small increments about. I texted my friend “Lily is having spinal surgery. I don’t want to talk about it.”

But I have come a long way from then.

We are ready as we can possibly be. April 7^th at 7am she will be having major spinal fusion surgery, approximately T2 to L2. She is expected to there a week if all goes well and full recovery will take about 3 months. She will finish out the school year at home. This surgery is necessary for her future health and we are preventing a lot of bad stuff (proper medical term) by doing the surgery now. I have come to a complete sense of peace at knowing this is the right thing to do. Am I still scared sick, totally, but we have faith in a God who has walked with us every single step of her journey and he isn’t going anywhere now. I ask all of you to keep her and us in your prayers, as hard as it will be on Lily, Andrew and myself, I know Andi and Oliver will feel this deeply as well. Our family life will change during this surgery, recovery and healing time and they need to know how important they are as well.

I know there will be many other teary drives home in our future, but I am glad we have the people in our world who are here to soften that fall and help us pick up the pieces. God is good and we are in his strong and soft precious hands.

She’s 12 (!)

Kim Nothdurft

2 comments

August 30, 2014

“You know that feeling when your kid does something amazing or incredibly funny or super smart or just something that makes you so proud your heart feels like it will burst? That’s what’s it always feels like to be Lily’s mom. It’s been a good day. A very good day. Can’t believe she is 12.”

How is that chubby baby now 12 years old? Sometimes it seems like it’s only been days and other times it feels like its been a lifetime of loving and raising

Miss LilyAnna Blu.

Every birthday of hers I cry. But this year it was just a few tears and a short hiccup of breath and it was over. I didn’t let myself get lost in the what might have beens or should have beens and just relished in the what it is. And it is good. She is good. We are good.

It was a great day. She got some loving on by all of us in the morning then she went to school.

At about 2 pm I took Andi Jane and Oliver with me (they had a half day!) to go to her class and celebrate with all her classmates and teachers. She has a really good friend who helped blow out her candles!

At home she got a call from her cousins in South Dakota who wished her a happy day then we ate a homemade (a very cheesy) baked ziti with applesauce -minus applesauce for mom (yuck)- and we all enjoyed a favorite meal of Lily’s with of course chocolate milk and cake.

It was nice to sit around the table with just our family and Lily’s sweet caregiver of over 3 years now and enjoy our time together. Grandma Cheryl got to be on face-time with us as we sang to Lily.

It was a great night!

Did I mention last Saturday we had about 60 people in our home – she is well loved!

So that was why her actual day was a much quieter day. We have great friends and family and I’ve said it before, I’ll say it again… we are so blessed. God is good!

There was once a day I would say why her? Why us? And today I can so proudly say, I’m so glad it was her. Thank you Jesus it was us.

Regaining Focus!

Kim Nothdurft

1 comment

July 23, 2014

OK can I just say being a mom is hard? Can I get an AMEN? We have to lift each other up, because I know so many of us are doing enough of knocking ourselves down. Cheers to all you mamas! You are AMAZING!
I just wanted to say we did have a weekend of family fun before school started. (Yes school started. July 21st. It was 111 degrees. Yay for year round school in Arizona) Although I will say 2 rooms next time, and maybe we will just take one kid at a time on vacation. Preferably Lily. I kid. I kid. I read last post. I totally kid. {but it would be more peaceful}
So we went on a little family staycation because Arizona Resorts know how to do a staycation!
We went to the JW Marriott at Desert Ridge and it was wonderful. We floated on the lazy river. We swam in the pools. We laid in lounge chairs. And although Lily had seizures (as always) we just let her sleep them off in the shade under cool towels. She really seemed at peace there and when she wasn’t seizing or sleeping she was swimming and was so happy!
*Side note… we won a Kiefer float for her at conference (which I really wanted) and it was incredible for her all 3 times we took her swimming with it. Then we left it at the pool and never saw it again. But I am in contact with the resort who says they are doing all they can to search for it and if they can’t find it they will buy us a new one! I’ll keep you posted on that.*
The kids had such a wonderful time. Andi made a new friend, as always, Oliver just loved to swim and play catch. Andrew and I enjoyed an adult beverage and we took advantage of the kids eat free deal.
It really was like we were out of town. So fun.

Then school started. And sleeping in was over. Rushing had began. I knew it would be different with three now I had to get up and ready and really different because the past 5 years before Oliver seriously slept through it all. Andi pretty much gets herself ready and all I use to have to do was get Lily ready. Which is a lot of work as you can imagine as she is full care. But this year it was Lily’s full care and pulling a sleepy Oliver out of bed and forcing a kid who doesn’t like to eat breakfast to eat breakfast and get his sleepy head dressed and teeth brushed. And still full on getting Lily ready. The first day I was in tears and we waited outside for Lily’s bus to come and then we were all going to walk the kids to school and I could see Oliver in his class… but Lily’s bus didn’t show in time and Andrew had to take them. I stood and cried and thought I am missing his first day of school. His first day of school! For the rest of his life he will never have his first official day of school again. And there I stood.. missing it. Proving once again they take second to Lily. Not wrong. But also not fair.

But here they were before

Oliver-Kindy, Lily-7th, Andi-4th

Second day someone was “sick” and didn’t think he would make it to school. I called it second day jitters…

He’s fine. Just dramatic.

Then I prayed the bus would make it in time. And when it didn’t, I asked Andi Jane, “can you get him to school and to his class?” She said she has been waiting for this moment since we moved here. We live less than a block away and so there I stood and watched them as they left. Again.

So today dangit I was not going to miss them go again! So we all (Lily, Andi, Oliver, me) walked to school kissed those little nuggets goodbye and Lily and I walked back and then we still had 10 minutes of sitting and waiting {in peace} for the bus. I felt so much better. I knew that OK, this is our morning routine. We just need to get ready a little earlier and that is just how it will be. And we will really celebrate weekends.

Oh and just an Oliver update, he had a better 2nd day than first. He came home so happy to tell me about a book he made and even made a new friend with a “cool name”. He is growing up so fast helping with chores around the house and even earning an allowance. He actually asks what else he can do to help. He voluntarily brought in the recycle bin on Tues. Bless his little heart! He seems a little more emotional than usual as last night after prayers he just sobbed like a drunken emotional sailor crying about everything from hoping none of his friends come over and ruin that book he made, to not being a “cool guy” to a very serious worry over a family friend (sweet Ellie Grace) who is battling cancer right now. We just said another prayer after he spilled all his worries onto me and then he slept like the little sweet prince he truly is.

Andi Jane is rocking 4th grade! Loves her teacher and the kids in her class. She asked me to put some Jamberry wraps on her and she was loving all the attention she was getting for her awesome nails! 🙂 She has been helping me with Lily and Oliver and even pitching in with chores. Andi is not a chores person. So I am so glad she is finally realizing she needs to pitch in. Even if I had to make some incentives to get her to do so. She is a good girl and I can’t believe she is in the 4th grade. Time really flies.

Jr. High is going much better than I anticipated! Teacher has called me everyday with updates and questions (asking questions is so good!) I have been informed how wonderful the paras are (from great sources) and look forward to meeting everyone on Monday when I go in to teach them about the Tobii. I had this overwhelming feeling of doom thinking of Jr. High, then I met the teacher, heard their are only 6 kids in the class and was told about the paras and I just felt relieved. I worry. A lot. And it seems like every time I do so God proves himself to me and says… SEE? We are always so covered by his love and peace. I am OK. I am feeling confident about this year.

So now I have three kids in school. Three lunches to pack. Three folders to check. Two I will need to reinforce homework with. And again… will really appreciate weekends.

And Summer is Almost Over

Kim Nothdurft

2 comments

July 11, 2014

Holy crap! I think I have whiplash. Is summer seriously almost over?
What?? Seems like here I am again coming here to update over summer starting.. at least I made it before Christmas.
I lay in bed and write the best blogs. Like seriously share worthy. Then I wake up and go to the computer and it is though I am grabbing those words, but I can only grasp a couple letters at a time and they never formulate like they did in my head.
It’s been a good summer, but an almost over summer. Modified year round rocks all year, except for summer. I like them home and I am not kidding. There is no strict bedtime, no homework, and maybe it’s impending doom of Jr. High that is shadowing me and my feelings, but I can’t shake the melancholy. I feel like Oliver going into kindergarten is overshadowed by this awful sense of knowing …Lily is going to Jr. High.
And once again I am reminded of how much our house/lives/world revolves around Lily. And it isn’t bad. It isn’t wrong. But sometime I realize, it isn’t fair. But I also realize there isn’t much I can do about it.
Since 2010 every summer has been focused on something for Lily. From conference to out of state clinic, to hospital stays, we spend our summers focus and money on CDKL5.
In Virginia on the last day of conference we sat in on the sibling panel and I cried. I was tired, yes, tears always overwhelm me when I am tired and also when I am PMSing, which I was also doing, but I think I would have been full of tears with lots of sleep and no extra hormones.
We stayed up and “socialized” every night in the hotel bar. Let me tell you, no one knows how to “socialize” like special needs parents. Can I get an Amen? We need it. So yes I was tired. But something struck me hard as I listened and laughed and cried at these kids who shared what it is like to have a sibling who doesn’t speak, who acts differently, who has seizures, who (and most gut wrenching noted) may not always be around. My heart literally ached as I sat there. I thought of the lives our kids live and how not typical it is and how hard it can be. And I know the positives. I state them all the time, our kids are better for having Lily as their sister. But there are serious negatives as well. And they are real and they are ever present and they suck.
At conference I learned a lot, got a lot out of conference, we had a wonderful time, it was incredible meeting families and connecting and sharing and my heart was filled that long weekend, but it also broke. It broke over the connection we all had. It broke over sharing notes on seizures and wheelchairs and heart break. It broke over realizing the world we live in although so normal there among friends who understand, it is so not “normal” back at home. And there is a rawness of understanding the life our “typical” kids live.
Don’t get me wrong, it absolutely was a time of hope and connection I can’t put into words, but it was also a moment of conviction for my focus at home and a realization for my other kids who may be standing in a corner saying look at me. See me.
Although often it is a screaming over dramatized rendition of a stubbed toe, but tomato tomato. (you are supposed to read those differently, doesn’t come across as well in writing).
The kids were great back at home with Grandma, our trips up north were cool, relaxing and filled with good times with great friends. And of course seizures never left our side… well except for when Lily was hooked up to an EEG for 30 hours. Oh then the seizures took a hike, but they were back when the cap came off. Seriously think there is something behind that. But we did get data without a big seizure. As it turns out and I really already knew this, but Lily has a mess of an EEG. Spikes all the time, has seizures that don’t even look like seizures and this was all the while I would say she was having a wonderful day. I really wanted to see what her O2 and heart rate do during her big nasty seizures, but I guess it just wasn’t meant to be. We will try another med to add to the list of many. And that’s all that about that.
It’s been a summer. Not too different from Christmas. A whir wind leaving me breathless and spinning. But also focused on claiming back my family. My focus and seriously.. and I mean it this time.. slow down mama. SLOW DOWN MAMA

Strike a Pose

Kim Nothdurft

1 comment

June 8, 2014

Many years ago I was a different person. I stuck a pose like there was nothing to it.
I lived in New York City. At the age of 14 and 15 (!) What? I did. Spent my summers there. Working. Legitimately.
I was “found” in Fiesta Mall in Mesa, AZ, not like I was dropped there and CPS “found” me, I was walking around on a Saturday with my friend (as in it was the 90’s and I was 13 and what else was I going to be doing?) and there was a fresh face model search contest going on and we were watching and a judge says “you go enter” I say shake my head “no” and he keeps insisting. Well next thing I know the entire mall is staring at me as I walk the runway in my Guess shirt, jean shorts and probably not brushed hair. And then I walk off the stage and we go right into Contempo and there some girl says “they are calling your number” what?! I was asked to come back on stage. I got top 10 out of 200 some people (and by people I mean Kelly Bundy hotties-90’s remember) and the rest they say is history.
By the next summer I was in New York City working in magazines such as Mademoiselle, British Vogue, German Vogue, Italian Vogue (what was wrong with American I say?) Teen Magazine, Sassy (yes I am dating myself real fast), Brides (at 14!), Self, did campaigns for Carolina Herrera and Abercrombie and Fitch (before I even knew that was the name of a store). I worked with Albert Elgort many times, worked with and quite possibly offended Bruce Weber and never even knew who these guys were. I was handed the world that I never even thought to ask for.
I had no idea some girls would have killed for the opportunities that were handed to me on a platter and because of that lack of knowledge I threw it away because I didn’t want to spend all my school breaks in New York. I wanted to go to Sun Splash with my friends, play basketball, work at Dairy Queen (because my friends did) and then when I realized what I threw away it was too late to even think of trying to get it back.
I didn’t dream of being a supermodel. I didn’t dream of marrying a super star. I always just wanted to fit in. I hated being a foot taller than my friends. I hated that I never could share clothes with them. I hated being taller than all the boys and when they finally started catching up to me in height then I really gave up that big apple because all I wanted was right here in AZ. A boy friend. A job at the mall. My friends.
Looking back would I change it? I don’t know. I hate to live with regret, but I do wish I didn’t burn the bridges I did. I wish I knew there were a million boys out there taller than me and I had plenty of time to find them. But I don’t know if I would have necessarily stayed with the lifestyle that modeling was. It just was never me. I never felt I fit in. I never felt like I fit in with the models, yet I never felt I fit in with my peers. It was just a mess of a time in my life and before I knew it, it was all over. Poof. Married with kids. And it was all gone. And then more than a decade after my last job I feel run ragged. I feel wrinkled, stressed, broken out and unattractive and I think back to days I was paid $500 for a few hours of work. Back when I felt pretty and I felt special. And I think how did I get from there to here?
So when I saw an old friend from High School who is now an incredibly talented photographer was in town from London to do a Hot Mama shoot I got selfish and booked a session with the one and only Pied Piper!
I had never had to pay for photos taken of me and I could name on my hand 5 other things I should have spent the money on, but I chose to be selfish and spend a day with getting make up on, getting my hair done and feeling pretty. I know I hate that those words are even coming out of my mouth/err fingers?, but I can’t help it. It’s honest. I wanted to feel pretty again.
And I did. And I love the photos and I have no idea what I will ever do with them beyond using them as my facebook profile and share some here on this blog, but I don’t care. None of that matters. Maybe when I die an old lady in my bed you can use these photos to memorialize me 🙂
So all that leads up to me sharing these photos of me. The me that got made up and smiled for a camera that honestly felt so good to do after so many years of forgetting how that felt. And that’s that. This is not my normal me. But it’s good to know with a make up artist, a hair stylist and talented photographer I can look like this 🙂 I bet you Lily’s bus driver wouldn’t even remotely think this is me. Ha! She sees the real me. Lucky lady.

I still remember my Blue Steel

Are you there God, it’s me Kim

honestly my favorite.
i think mostly because my teeth aren’t perfect.
perfect teeth are boring.

Let’s play catch up

Kim Nothdurft

no comments

June 5, 2014

I wonder if I didn’t have facebook I would blog more. I am sure I would but since I do have facebook..well you know. A 3 sentence status update usually trumps a long drawn out run on sentence of a blog I tend to do. So that’s that.
I have had so much I wanted to share. And I always want it to be written pretty with photos and all that jazz that makes one want to read a blog, so then I think of the energy I would need to do that and decide that doesn’t win and nothing gets written. And I love to write. I do. I love it. But everything gets put in front and right now my plate is so full I should be 800 pounds, filled with all that stuff on that imaginary plate.
So here I am. At work. With lots of work to do. So this has to be quick. And don’t fear for my job, I know people.
I just wanted to give an end of the school year/start of summer update and no it isn’t being written from the Bahamas as it should be. Yes I come shamefully with my head down to say my huge proclamation that we will go on another Disney Cruise summer 2014 was just all hype. We did really put a down payment on it. But then I asked for it back to help with our backyard. Ha suckers. We were so caught up last year that we thought, how can we not do this every year. Then life was like… um this is how you don’t Disney Cruise every year. A back yard to landscape, a broken hand, insurance refusing to pay for expensive meds that your child cannot miss a dose of, a company taking some financial hits resulting in loss of a good bonus, um life. Yes life. That silly thing we live in that seems to suck every bit of money and energy we have. So cheers. No bahama mama, no hanging on the deck with Mickey. It’s instead work. It’s over air conditioned stale air and a computer screen. Cheers.
But I digress… end of the year for Lily.. sucked! Oh thought I was switching gears to awesome, hu? Ha! Fooled you. End of the year was like 100 no Disney Cruise disappointments. 7 years at Ryan Elementary. 7 years with two of the same paras, 5 years with the same teacher equals a lot of sad faces at the end of the year “party”. Ha if you call me sobbing my face off, unable to utter a complete sentence a party well then I don’t want to party with you.
But I will be positive and say what a blessing it was to have such a SAFE, Wonderful, Caring, Supportive place to send Lily all these years. Never had one fight. Everyone was on Lily’s side and wanted the best for her. I never worried about her safety, her well being, her not being entertained, fed, loved on, hair always styled. It was above and beyond and we were blessed.
Here is Lily graduating with Ms. Ashley shaking her hand.

6th Grade Grad! Lily with Ms. Ashley (teacher) and Ms. Marlo (para since kindy)

And here she is leading the 6th grade Clap Out! Sniff Sniff Sniff. Anyone have a tissue?

So proud of her. Although she suffers seizures daily she really lives a good life. She is so loved, she is so healthy and she is just so Lily. It is an honor being her mom and I love that I got this amazing life roll.

So now it is summer. 110 degrees of summer lovin. And I am not complaining. I take your 4 months snow plowing and raise you some swimming and air conditioning. (Did that even make sense? I’m not really much for poker) I rarely complain about the heat. Unless I am doing serious errand running with the 3 kids in the beast that really has no right being driven in an Arizona summer with a/c like it does, and of course the casual “it sure is hot” to relieve me from awkward silence with a random person, but I really don’t mind the sun. I prefer the sun. I’d love to throw a beach in the mix but we can’t always get what we want.

Andi Jane and Oliver are in VBS this week. Basketball camp next week and Andi is in drama camp the next. I know totally unnecessary to teach that child drama, but she can perfect her art. I asked Oliver if he wanted to go but he said he really can’t sing too good and would rather go to Joke camp. So we are still searching for the best place for him to perfect his art. Of jokes. Yes that was a joke. I am not looking for any such thing. But that is really the camp he requested. We could have had smart kids but I find those ones to be overrated.

Andrew and I are off to DC at the end of June for CDKL5 family conference. I am super excited about it for sure, but nervous as I have jobs to do that everyone will see the quality of my work. It’s not like behind the scenes oh my Lord who did that, it’s oh yeah Kim made those.. snicker… but I will do my best and hope for a gold star. And pray for one night out with my man on the town. It’s gonna be a busy time as a board member, but I would really love to site see a little. We are gonna be far from home, away from the kids and mama will need a drink. I am also hoping we can figure some sort of getaway this summer for our anniversary, a non thinking/non working trip. There is a song called Beachin’ by Jake Owen and that song makes me wanna run away for a ~~year~~ weekend to a beach town, wear a suit, cover up and slip flops and just dance and make out with my husband. Is that too much to ask? We’ve been married 13 years this August and dang it we need to celebrate!
I also want a vacation with our kids. San Diego. Beach. Maybe a theme park or two.
And a pony.

So that is my update.

Oh crap. I forgot one thing. This. Yesterday we did this.

Every summer Andi Jane gets fun color pops that always fade by the time school starts back up, I love this little tradition, she is so cute and just loves it so much. Oliver was whining when I told him that he has to hang out at the salon while we girls get our hair done (Lily is attending a little 3 hour 3 day a week summer camp). He wasn’t whining because it is boring, he was whining because he wanted his hair orange (he is a little obsessed with Syndrome on The Incredible’s, yes the bad guy) and I said no.
We get to John and he inquires why Oliver is sad and I say because he wants orange hair and you don’t have any orange… riiiight??? Well leave it to my buddy John to find some orange and make Oliver the happiest kid on the planet. I will be honest, I was not cool with this at first. I think I said he has to just keep his hair normal. And my buddy John (to call John “my hair guy” would be a great insult, John is our friend and a super cool guy who has no problems calling me out when I am out of line (which is so rare, let me tell you), as me to him, and is a super awesome hair dude too :)) says something on the lines of Kim, you of all people I am shocked to hear you say he needs “normal” hair. Touche. You are right. Why didn’t I want my son to get color in his hair, just like his sister does. It’s summer. It washes out. It’ll be back to “normal” in a week or two. Why not. So thanks John for your spicy honesty and making Oliver feel like the coolest kid on the planet. Andi Jane keeps looking in the mirror. Was in tears in the shower today when she saw purple water thinking it all washed out. See drama school not necessary. And me… well I am happy being blond again after a winter and spring of trying to be more “natural” with a dark blonde.

It’s summer folks. I will probably catch you all up again next Christmas.

Easter

Kim Nothdurft

no comments

April 21, 2014

This past weekend I was reminded of the greatness of our God. Did anything big happen? No, not really anything at all, but goodness happened and that will always be my favorite reminder.

This past weekend I was able to see friends I haven’t seen in awhile. I was able to go hiking with dear friends and enjoy breakfast with them afterwards. We were able to have friends/neighbors over for a big lunch and sit outside laughing and talking while all our kids got along and played inside. It was like they weren’t even there. Until we came inside. Ha. Totally worth it. I got to go out to dinner with just Andrew and Lily. That never happens. We dyed Easter Eggs. I got some alone time, cleaned out closets. Got a pedicure. Found the best fitting jeans in all humanity for the cost of 4 lattes at a consignment shop. We got to spend hours enjoying my sisters cooking and my families company just laughing and telling stories. And although Lily had a bad seizure Saturday, she had a wonderful Easter Sunday. No big seizures at all. Oh what a day it is to have no big seizures. No long naps, no drooling sleepy kid. No refusing to eat or drink. Oh what a day. Oh what a weekend.

Goodness. Goodness all over. A friend coming to the rescue with a medication we ran out of and thought Lily wouldn’t get another dose til Monday. Andrew’s parents being able to spend the weekend with us and the kids got fun Easter baskets. Church was soul filling as always. Being with my parents, Andrew’s parents, my sisters family and my brother and his girlfriend all together was soul pleasing.

I went to bed last night with this peace in my heart knowing that our life is good. It is so good. We are surrounded by good people. Honest to goodness, good people. And when you are lucky enough to be surrounded by good people, you can’t help but remember just how good our God is.

The Road I must Travel

Kim Nothdurft

no comments

April 15, 2014

Awhile back our board (IFCR) received a request/invitation for one of us to attend a conference a family was holding in Albuquerque, NM. Considering our board consists of folks much further east of New Mexico than I am west of it I said I’d go. Not having a clue as to what I was going to do or say, I just thought 16 hours in the car alone sounded a lot better than listening to another fight to be had by Andi Jane and Oliver. So I made a power point, first one ever and ~~stole~~ borrowed Andrew’s laptop and I got in the car and left.
Ha. Well actually I made sure Lily had all her meds refilled, wrote out each time of the day she gets said meds, left notes about foods for the kids and the dogs, made sure the kids were all accounted for and respite was in place when needed and then made sure everything at work was handled …and then I left.
The ride was long. I had previously asked my facebook network for some good book suggestions to listen to on the ride up and I got a lot. A lot. A lot. Many I had already devoured, and many I had to add to my list for later, but it was the book I was advised to NOT get to listen to in the car because the tears it will cause may hinder my driving, yes that was the one that won the game for me. I may be sadistic, but if you promise me an ugly cry I am there. Except for dog book/movies. That is a different ugly cry that I am not ok with. Have you ever seen Hachi: A Dog’s Tale? I was in the fetal position for about 3 days. I don’t recommend it. But yes, I like to get my emotions out on fictional characters that aren’t real. It’s just how I roll. So I got Me before You. And this isn’t a book review post, not sure how I got so lost here. Anyway I didn’t even hit sad to back at home and back to work and back to no more 4 hour stretches of aloneness. But it is good. Super good. Can’t finish at work. I’m a sobbing mess. And that means good book.
Wow… ok back to the road. I made it to Albuquerque in 7 hours with only one stop. Who’s the woman? Me! And I got put up in a hotel and I sat in the hotel lobby/bar/grill/ had a beer and a steak wrap, then took a bath and fell asleep by 8 pm. That is how I roll while alone with have no rules. I’m Willlld! (Dirty dancing friends feel me?)
I was up early and left super early to make sure I knew where I was going and was so early I got to cruise Albuquerque. Pretty sweet. Saw some hot air balloons, saw some.. houses. Yup, it was sight seeing heaven.
Get to conference and made sure I was set up with the audio system. So new to me this whole thing was.
I met the family putting the event on and they were so sweet. So inspiring! I was so impressed to see a family and community all rally together for Juanjose who has CDKL5 just like Lily. They have “angels” who volunteer at their events and this was an informative conference about CDKL5 and a thank you to those who help them out. I was honored to be a part.
I got to share our story and our video CDKL5 and US which I know is getting pretty old, but we are at over 18,000 hits! It is a great tool to show Lily’s story in a way much cuter than I can tell it, and I shared about how the IFCR was born and being a part of the board and it was over before I knew it. I stayed and listened to others and really enjoyed meeting everyone and taking part and helping where I could. It really was a great event. I was honored to be a part. I also got the pleasure to meet Juanjose and Max, two CDKL5 boys that melted my heart.
I was back on the road at 11 am and was in Greer by 3 pm and straight to the cash register I went to help my mom. Nothing like working the store. THE store, the only store in a tiny town. It really is something so foreign to me who grew up in a pretty large city. So fun, so much chit chat, so much gossip, so much fun. Plus I got to spend 3 hours with my mom. Just her and I (and the random customers that came roaming in and out) and that doesn’t happen much these days. I relished it. When we closed we went out to dinner with my parents friends and we laughed all night. It was great. Then we had breakfast before I headed out back on the road and home to my fighting children.
I know that was a serious play by play that may come across unnecessary, but that’s ok. This is my blog, my memories, I will come back to and read over and this weekend was really special and I wanted to take note of it. I also wanted a good picture of my parents and me but that didn’t happen. But as I have been told, the world is not my wishing well.

Seizures… always seizures

Kim Nothdurft

6 comments

April 14, 2014

Johnny Rockets, a luau birthday party, church. All places we attended a few weekends ago. All places Lily had seizures. Big nasty seizures.
It was in the mid 70’s that weekend, it was lightly overcast and Arizona was showing us spring in true perfection. We wanted to be outside, we wanted to enjoy the time as a family. And we did. But always in the background is the looming seizure monster. He is always there just to take away our smiles, to bring us that sense of reality when all we want is to be, dare I say ..normal.
I have said since Lily was an itty bitty that I’d take it all, the wheelchair, the delays, they everything, but the seizures… Oh how I despise the seizures.
She is a zombie. She takes 4 heavy duty meds, all high doses and she is a zombie. Then she has seizures still on top of it all and she sleeps and drools. It isn’t fair. I am not OK with it, yet I have to be because nothing seems to change. Nothing ever changes. Med changes will help for a short period of time, but the monster always comes back and he just comes back harder and harder. He has no care in the world where we are. He thinks “Oh they are having a nice family outing, let’s stop that.”
We are desperate to stop this monster and willing to do whatever we have to do to stop him in his tracks.
Lately we have been trying to catch a seizure on video for her next Dr apt and we keep missing them from the start so while out at lunch Lily started her pre big seizure (small seizure of jerks- that is my medical terminology of course) and Andrew started filming, not knowing for sure if she was going to go into a big one or not and then boom, seizure.. while ordering our lunch.
I hesitate to show this video for many reasons firstly, I really only like showing the pretty side of Lily. The smiles, the calm gazes, the 1 out of 80 photos that looks its best. We have always felt Lily has enough going on, the last thing we need is people staring at her for looking “weird” or whatever so her internet face is a picture perfect one. And I am not ashamed at all to say that. I will show you any ugly angle of myself any day, but not her.
Secondly, the internet is full of offensive jerks who hide behind anonymity and find happiness in others great sadness, we have felt true evil from strangers via You Tube comment on a sweet video of Lily taking steps with her therapist. Therefore a video of her seizing is welcoming these evil people to come back into our world and that scares me and thirdly, this video in particular, we are ordering our lunch. While our daughter is seizing. That seems pretty awful. Except for this is our 11th year of dealing with daily seizures and it is a reality of our every day life.
So I guess I feel like after sharing all the reasons why I didn’t want to post this video, I will share the reason why we want to share the video.
This is our life. This is the life of many other families. This is the ugly side of a very ugly disorder. This is our reality. And when we hold fundraisers or ask people to vote for IFCR or say a prayer for a friend with CDKL5 that is suffering, this is why. This disorder robs us daily. Daily of family outings, any type of normality, Lily won’t ever be able to ever succeed in any therapies or any life skills if this reality continues.
We need something to give. Something to change. We need more Doctors on board with CBD trials and lawmakers to understand that there are some real healing agents in medical marijuana and although we have yet to get our hands on what Lily needs, we will continue to look into this more. Or try harder to find what needs to be done to help calm seizures in Lily and kids like Lily.
So this is the video of our sweet Lily having a lunch out with her family and having the seizure monster ruin it. And seriously, ignore the talking. We truly are ordering lunch. And there is super loud Johnny Rockets jukebox going on. And a very bubbly waitress.
It’s our life.
Life in all it’s messy, complicated, life like stuff we deal with.

*Updating due to the amount of people not able to see the video, I did post this to Youtube I tried to set the settings as private as possible, if I feel this was not a good idea I will remove*

Greetings from our bubble

Kim Nothdurft

1 comment

March 25, 2014

It is becoming clear to me that I/we live in a bubble. It is a safe, happy bubble and I like it that way.
How is this all of a sudden becoming clear to me? Oh I don’t know… the internet? The Renaissance Festival.
It’s so true. Last October we went camping. I think I posted pre-camping and never posted post camping, but it was awesome. Can’t wait to do it again. And by camping, we were in San Diego, about a mile away from a Ralph’s and we had a pop-up trailer. And bathrooms. And showers. And that my friends was as camping as this girl will get. But while we were there I had two separate occasions where a stranger came up to me and complimented me on my parenting/loving/caring for of Lily. It was sweet. One lady was crying. So maybe a little awkward too, but it was sweet to hear the comments from these strangers. But weird too. At home, or shall I say in our bubble, no one sees what we do for Lily as different. Because we are in their bubble too. We are all friends. We share schools and church and grocery stores and we all live together doing good things and just keeping our bubble a bubble. Yes my dear friends say words of encouragement to me all the time, but we aren’t some anomaly, we are the Nothdurft’s. So that was weird to me to be pointed out and showed me how out of touch I am in this world.
I will read blogs that are written by special needs parents, like one a couple weeks ago for instance was about the things not to say to a special needs parent and I think, do people really ask those questions? Like it’s been years since I heard the “what’s wrong with her?” question, and by the way don’t ask that. But other than the stares we get, that some days I do not have the patience for, we really don’t seem to be a reason for unnecessary questioning. Occasionally someone will ask me questions, but they always end up being a therapist, or Dr, or someone who knows someone with a similar disorder OR just genuinely concerned and asking questions. And I love to talk about Lily, so I want those questions. I am eager to talk about our sweet girl. So I wonder, this must just be us living in our safe bubble again, I guess. Because I don’t get asked those questions and I don’t find the need to write a post all about how people are idiots for asking them. And I guess then my posts will never make it to the Huffington Post either, but that’s totally fine. My bubble survives without the notoriety. It’s cool like that.
Also recently I saw on Facebook I saw on my news feed posted by a local news station that someone wrote in the sky “forgive your enemies”. Awesome, right?! Like super awesome, positive thing to say to the valley of the sun that perfect 80 degree March day. But then you read the comment section. And then you realize you don’t understand people beyond your bubble. Because from this awesome post the comment section says things like racist remarks, justifying hating and people saying they would never forgive and I think wow. My bubble would say it is awesome. Because forgiveness is an awesome thing. When given and when accepted. Awesome thing.
For Andi’s birthday last week we went to Blue 32 for dinner, her choice (yes our 9 year old daughter loves the local sports bar so what) and we ordered a lot of food. We laughed and had a really nice dinner. I was giving Andrew a hard time about how much the bill was going to be in front of our server (because he orders an obscene amount of food) and she says, “Oh your bill was already paid for” we were shocked and said “What? Who?” and she says “they already left, all they said to say was you are a good mom”. Yes that happened in our bubble. Tears stung my eyes and I sat in shock and awe at what had just happened. I recounted the evening, thinking about how I was at dinner, what in the world did I do that made such a difference in these strangers eyes that made them cover our dinner. And I mean it was over $100. We were beyond blessed and shocked and amazed and realized that this bubble we are in, couldn’t be a softer, safer place.
So I sit and think about things. Things I see and hear others do and say. And I think I am so glad I found this new place in my life. I have friends that go on missions, foster children, friends who rebuild a home in a tough neighborhood to turn from what was a crack house to a safe house providing community support. We volunteer together, we pray with each other and support each other, laugh with each other, we eat together, have community with each other. It is a safe and very happy, very comfortable place.
And I love our bubble.
I adore our bubble.
And I know our bubble exists because we all have faith in God. We do for others as they would have done for us. We love each other and care for each other because it is the right thing to do. It gives our lives meaning to not live self absorbed lives. And I couldn’t have been placed anywhere else better.
Our lives aren’t without stress or complications or heart break in our bubble, but we have a community to rebuild our strength from. Our bubble brings meals, sends gifts, prays.
But then I worry, is it all too safe? Too comfortable? Too easy? I know life isn’t easy, but it sure is easier when supported by a great community. I can’t imagine living our life not supported. Not having shoulders to cry on when things get too tough. I can’t imagine not having a safe place to worship and pray and I can’t imagine not having the freedom to believe what I believe. It’s hard to be happy for yourself when you know others aren’t as safe, aren’t supported. And I sit and wonder what else can I do? And I don’t know the answer. Volunteer more? Buy more shirts from Sevenly.org? I don’t know. I don’t even know what the purpose of this post is, honestly. I just realized we are so very fortunate and while I sit and think about how blessed, fortunate, what ever word you want to use, I know so many others aren’t. And that sucks. And I want others to live knowing the world doesn’t have to be a bad place. It doesn’t have to be a place where you never forgive and you take any opportunity you can to find reasons to spew negativity. And I know I am preaching from a safe bubble. I haven’t witnessed anyone being shot. I don’t have parents who do drugs. I wasn’t given up or abandoned. I am a girl who has lived a pretty safe life offering sympathy from a far away bubble and I realize that really isn’t all that comforting.
Sigh. It’s good to be comfortable and happy. But it is also good to have your eyes wide open to the realities of this world.
I want you all in my bubble.