Calm Amongst the Chaos

Update

Kim Nothdurft

April 16, 2013

We saw a different neuro last week. I met Dr. N when I went into TGen and had a meeting in a conference room with a table longer than my house. I met 4 researchers who were interested in CDKL5. I don’t know how we are moving forward, but I was thrilled to speak with these guys and just let them know about CDKL5 and know that it could be something they want to look more into. I met Dr. N and learned that he has been researching Rett Syndrome for 20 years! He sees lots of Rett patients here in AZ and I thought, Lily needs to go to him. She needs to see a Rett Dr. considering no one seems to have much of a clue about Lily and CDKL5 here in AZ, at least a Rett Dr might have more of a clue about CDKL5. So we see him. He was kind, interested in Lily, let us know of some research in the works, did some blood work (that I was thrilled to have done, an x-inactivation test, I will follow up on that when we get results back) and then he told me we must stay with our neuro as she is the best with epilepsy, but he would still love to occasionally see Lily and learn all he can about CDKL5 and let us know of any trials, or research he feels may be of an interest for us. I had a little more faith in the appointment that it could help change our now, but I am comfortable knowing that he may be able to change our tomorrow. I like people to meet Lily and then when they read a report, or think of ways to research they will think of her blue eyes and gap tooth smile and think let’s do this for Lily.
I am disappointed in her seizures. What’s new? I am disappointed her being on 4 meds and still having up to 4 tonic clonics a day. I wanted him to say let’s do this and this and waala things would be different. But is it ok, we can’t always get what we want. Mick Jagger told us that. I do trust God and I am glad we went to that appointment. I will also go back to our neuro and see if we can’t change things again. Something. Never stopping.
I am however excited about an upcoming road trip with my girls in July! Lily has an appointment at our one and only CDKL5 Center of Excellence Clinic in Denver (for now our only!)! It is a partner with the Rett Clinic and there we will see every Doctor you can think of that does/can/will relate to CDKL5. It will be a long clinic and even a longer drive, but that might tell you how much flying with Lily is not happening. We will be flying in June for her Make A Wish and I think that is the most we can do for a summer. So it is my girls, me, lots of music, lots of fun stops, especially in Albuquerque to see one of my oldest dear friends…. she is not old, I just mean we have been friends since the 1st grade. Which was a really long time ago, so yeah she is old too I guess 😉
But we will see Uncle J and Aunt A, cousins J and M and we will enjoy some beautiful weather that is not Arizona in July. I may be nuts, but I am so relieved knowing we are driving and not flying.
We are also hoping to plan a CDKL5 get together with the other families who will be at clinic and those who live in Colorado! I can’t tell you enough how excited I am for this trip!
I know this wasn’t too thrilling of an update, but I just wanted to share what is going on right now.
We are praying for Boston and sad for these acts of incredible cowardliness. We were so happy to cheer on Team Rett who worked so hard to go to Boston and run for their kids and to have this senseless act happen….ugh.. I pray for the families whose lives are forever changed and pray that they will overcome with strength and courage.

Retraction of the Biggest Kind

Kim Nothdurft

4 comments

April 2, 2013

I would like to retract my whole last post. I pride or blush myself on my honesty. I find myself relating to others when I am honest. But what is honesty truly? Like say I don’t like your dress and I say I don’t like your dress, then follow it up with what I am just being honest. But is that really honesty? That is just sharing your rude opinion. It isn’t really honesty. But when I say Lily’s seizures break my heart. That is honesty. Relating honesty. But when I go on a tirade about a frustrating day, maybe that isn’t really being honest. Well it is, it is being honest in the sense of this is how I am feeling, but kids staring doesn’t always make me so grumpy. Actually normally they don’t. It was like I let insecurities build and threaten me and then I blow off steam and vent in my blog and then cover it up with hey I am just being honest. I didn’t like that post. I debated hitting publish post and then regretted it. And you wanna know why I regretted it? Because I knew I wasn’t really being honest. See that word again. I wasn’t being honest completely. I was venting and when we vent we just go nuts and say things we don’t necessarily mean to say. But I am glad I was well aware of my nuttiness and glad at least I was 100% truthful on that aspect.
But see in my gut I knew I wasn’t right in my post. I was taking out my “I have a special needs kid” card and trumping others with it. I carry that card in my back pocket and use it freely and I do hate that about myself. I will let myself get into a pity party and want to trump others who I feel don’t carry as heavy of a cross as I do. But that is so dumb! Ugh! So dumb. I need to throw that card away. We are not special. Yes our family has different circumstances than others, but don’t we all? I remember my friend, another special needs mom, texted me and asked us if we want to go camping with them and I replied, “dang I can’t use my typical I can’t I have a kid in a wheelchair excuse with you” and we both laughed. Well I assume with both did. I laughed and she said LOL. But that is how I roll. Say no to things that will be too difficult because we have special circumstances. This is something I somehow shed light on (all by myself) and so glad I did. I know each day I grow and learn and if I don’t I am loosing out. I am learning every day and I hope to one day know it all and rule the world. Just kidding. I just want to rule myself. Own myself. Trust myself and respect myself. I want to know my limits and stretch them. I want to never be too comfortable and always be willing to do more. Speaking of we said yes to camping this year. Yes STRETCH. HUGE STRETCH.
I am totally off track and wanted to share why I retracted my last post. So….I post this post. My kids are great. They know better than to stare or to ask questions. They aren’t rude or nosy. RETRACTION. Isn’t God awesome. You think you know it all and then you go to Target (don’t judge me and my Target, ps shouldn’t I get some royalties by how often I mention my happy place?) with your 4 year old and your 8 year old and you are so busy, stressed and at your limit that you pay no attention to the fact the person that is checking out your lane is a little person. Sweetest guy. I see him all the time. (at Target, don’t judge) always makes my day seeing him and how kind he is. BUT I wasn’t prepared for what happened with my 4 year old whom I told the world was better than others who point and stare. Let me just say this was the most excruciating check out in a mothers history. I never have a few items either. Oh my gosh. Andi is my sweetness, my love, my helper, she tells him hi, she helps him bag. She makes small talk with him and then there is Oliver. Oliver who says “MOM! MOM!” “Look at that little guy!” “MOM!” “Mom! Look at what his feet are standing on!” “Mom… Mom.. MOM! LOOK!” Oh my goodness. I am trying everything, honey say hi. Yes sweetie, do you need to go potty? Go potty.. Go find another family please (just kidding, didn’t say that) I was red, I was flustered. I was dying. Andi finally said “Oliver can you go throw your trash away in that trash can” which sent him away for about 5 seconds and then we are finally leaving and I am dying, I give a weak smile to this guy and as we walk away Oliver says.. “Mom! Dad is way bigger than that guy”.
I don’t even know what to do or say. God said Kim, oh no. You are not who you said you were. And I said you are right God. Holy crap, you are right.
So then we talk, and talk and talk to Oliver. Andi and I both. We tell him we are all different, just like sissy is different. Some people are small, some are tall. And we go home and read some more Todd Parr. Oh my heavens. Let me just say that was excruciating. EXCRUCIATING. And I am sorry. So sorry for my last post. And so sorry Target guy. We will come through your line again and I promise I will do better. My child will do better. Sigh.
So the day after that experience we go to CHURCH. It is Good Friday and we have something called an Easter Walk for the kids, it explains all the events, acted out, leading up to Easter Sunday. So wonderful for kids and I just love it. After the walk kids are coloring and I am giving Lily some cookies. Then a crowd of little girls we didn’t know just stood around Lily, staring. And the first couple seconds I felt unnerved. I felt protective over my Lily. Then in a moment grace washed over me and I knew that if I don’t tell these girls about Lily they will continue to just stare and never know. If I don’t teach them, who will? So I say, “Hi! This is Lily” and then the questions start coming, “why doesn’t she walk?”, “can she talk?” and I explain to them simply that she is different and they say “oh” and then a friend comes up to the girls and says, “Oh that’s Lily! She is my friend” and at that moment my heart melted. It was mush. Had I stood there being annoyed, or turned Lily from the stares I would have missed that precious moment where Lily was explained and understood by a peer her own age. Oh the blessing that moment was to me.
So I am learning. I am moving forward. I am not going to let myself pull out that card in my back pocket. I am going to be more conscious. I am going to be more graceful. I am so glad that I did write that post, just so the following events could happen in a way that I saw them so differently. God is so good. Be thankful for the uncomfortable situations that help you to know and understand and grow from.
But I never want to relive that check out line again. Ever.

Spring Break ?

Kim Nothdurft

2 comments

March 26, 2013

Spring breaks are long here in the chandler unified school district. Very long. They go to school for 9 weeks and then take off 2 weeks and 2 days til summer and that is when this whole thing pays for itself, summer break is only 7 weeks. Boo ya. Is that how to spell boo ya? Is that two words or one? I’ll take words that aren’t words for 1000 Alex.
But yesterday was the last day of our long spring break, then they get Friday off. For Good Friday you ask, Lord no. Yes, but no. It’s “Spring Holiday”. Then we are back in session til the end of May.
Why such a long introduction to what I want to say? Because I wanted to. I always do. I give way more back ground to a story than an actual story. So there.
Spring break… ahhh break is never a word I think people should be throwing around when you work out of the home some days and have to figure where they all need to go and the days you don’t work you work 2x as hard with all three kids in the house together. They fight, yell and break things.
I was able to get care for Lily on my work days the first week because ASU had the same break so Lily’s respite worker was able to help out and we put Andi in an acting camp that our neighbor took her to and from for me and Oli went to Nancy’s where he always goes. The second week Lily came to work with me, Monday and Tuesday and Andi came Tuesday as well which was really helpful, she is the best sitter Lily can get 🙂 But what I am trying to talk about is the days I didn’t work. The days I had all the kids. The days that I felt nutty.
We had appointments to kill one day, a zoo-date in record breaking heat another day, mall trip (I already spoke of), Target trips, pool days (my favorite), birthday parties, daddy driving race cars and lunch dates. We never stopped the whole break. Never. Grandma and Grandpa came from South Dakota on Thursday and it has been so helpful to have them here! I was able to get to work early on Friday and Monday .. so early in fact I am done with my work today and now blogging to you all.
Also during this break I have been trying to track down medical records that I have to say on record HAS BEEN HELL! Hell I say! I won’t even bother going into the details of this hassle, just know that pre HIPPA I was able to call MY daughters Doctors office and ask them to send ME her records. Today that DOES NOT happen. Caps are needed. Actually butt chewing is needed, but caps is all I can do right now.
But all this crazy spring break stuff made me come to a realization… I have awesome kids. Like primo awesome. Yes it is a lot of work to do with all of them, but they really are great. Andi and Oli do feed off each other and can be hyper as all get out in a store, or fighting in a store, or whatever, but in matters that matter they are great. And I am bragging and I am gonna say something that people may get offended by and I will apologize in advance for it. Some kids stare. Hard. And their parents don’t do anything about it. And it really sucks. And if my kid made your kid feel like a zoo exhibit I would say something to my child so that never happened again. I guess in our bubble of school, church, and neighborhood people don’t stare. But spring break we broke the bubble and went places we normally don’t go and so I got reminded how normal our family is not.
I know my kids are lucky, they have a sister in a wheelchair. They have an uncle in a wheelchair. They go to events with tons of kids who are “different” than them and they play with them and become friends with them. Andi especially has the biggest heart for these kids and causes fights in Lily’s class because all the boys want to marry her. She sees someone different and wants to friend them, hug them, help them. Oliver just usually covets cool wheels and doesn’t understand why he doesn’t get a “cool wheelchair”. We have people of every color, race, religion in and out of our home and they understand we are all different on a level most kids just don’t naturally see or understand. Our kids are lucky in this way, I know this and I don’t expect other kids to not be interested in people different than them. We are naturally curious. Kids are most vocal about their curiousness and I find it refreshing most of the time. It’s honesty in its purest form!
But when you walk into walls gawking it isn’t. I had to box out a little kid who was staring so hard at Lily having a seizure I should have gotten a foul. I am already upset at a seizure, another seizure, again and again, she is having them all the time now and yes I get upset about it. I am trying to keep my attitude in check. I am finding my blessings, but sometimes I am angry. I am angry that we can’t just have a nice day at the zoo with friends. It turns sad. A fun day at the pool turns sad. I have to click off a part of me that is sad and turn it to happy to be with my other kids who deserve a mom who is not always sad. So I am two faced. I do multitask my emotions and it can make me a little nutty and a little off balance and a little not ok with people staring. Probably way more sensitive than usual. And I am sorry.
I do want to say for the staring kids 9 out of 10 have moms that say “hey don’t stare” or “hey she’s just like you, just in a chair” (my favorite response I heard by a stranger followed with a sorry my kid just did that smile) so I am not a grumpy lady mad at the world, I am ok with those situations. I was even ok when the kid super loudly said “what happened to her mom?” it’s fine. I had Andi stalk this poor little person at a store and I did everything in my power to show her jewelry, clothes, anything to get her to leave this poor woman alone, but despite my hardest effort to distract her, she still went over to her and told her how much she liked her earrings. Phew. But I get it. Kids are kids and that is fine, great even! What I find not ok is how some parents just let us be totally uncomfortable with lasers beaming Lily and I while watching Oliver play in the mall play area. Like lasers that hurt. Like stop. Please. We have no second act. We have no clown car. We are just sitting here. No trapeze show about to start. Just sitting here. And still sitting here.
I know that the beautiful readers of my blog are awesome parents who don’t let their kids do this and so I am just complaining, not preaching. Believe me on our outings there are always kind smiles and those who run to open a door for us and I should be writing a whole post on those people, and I am sorry now that I am not. I guess I just hope our next spring break will not fall around PMS and with 2 weeks that may be hard, but sorry it did this time and with seizures so bad and with hormones my emotions were out of whack and I was grumpy and my feelings got hurt and I know I shouldn’t let things get to me, but it did.
I am working on it and thinking next time we go out I should hand out Todd Parr Books.
It’s OK to be Different. It really is.
School is back in session. I have 9 weeks before I become nutty again. Let’s enjoy this time.

The Mall

Kim Nothdurft

1 comment

March 14, 2013

Up until a few years ago the mall was where we went. Like every weekend. I remember my mom dropping me as a teen and we walked the place for 5 hours. 5 hours! With maybe $20 in my purse. We met boys there, ate pretzels and cookies. We rarely even bought anything but took notice of what we wanted at Contempo or Wet Seal and then begged our moms for it when they picked us up.
I would call my sister who had little kids at the time, “what are you doing today?” she’d say “shopping” so I tagged along with them. My mom took me all the time as well. We lived at the mall.
When I had Lily not much changed except that my mall experiences went from looking and just going for the browsing to full on breaking out the credit card and spending more than I made in a week on one outfit. And I’d promise to not do it again until I paid it off, but then Lily would have more seizures, a new diagnosis and we’d head back to the mall. I mean she was the perfect shopping partner. She would snooze and I would shop. I’d buy for her and for me. I’d charge it all, feel sick to my stomach but then do nothing about it. Cut the tags and wear the clothes. Point of no return, literally.
Things went on, Andrew and I would both go shopping. I went with friends. Lily always along for the ride, quiet, usually sleeping in her stroller. Strangers would look at her and say “sleepy girl” “oh she’s so tired” “so relaxed” etc. I’d smile and say “yup” and whip out another credit card because she should be playing at the play area. She should be screaming to get out of her chair to walk. For all the “should of’s” I busted out the credit card. Then when she got older and the question came out of the mouth of a stranger “what’s wrong with her?” mama lost it. “What’s wrong with her?” I repeat back… “nothing is wrong with her, she is who she is” pissed and unable to communicate with this stranger all of a sudden my comfort place was rocked.
I was so upset I was shaking. My comfort place got rocked. This lady was rude. What’s it her business anyway.
But I came back. I bought Lily a “mall shirt”, I found it at Target, it said “Ok I am perfect, stop staring”. By then she had her wheelchair and it was a little easier, people knew something was wrong by the chair, not something looks wrong with the kid in the normal stroller. She was also still little and cute. Like a cute little kid in a wheelchair. Smaller than Oliver and in a chair, so people would smile. And my shopping got worse. Andi Jane came along and she sucked at shopping. So I left her at home with dad. And because she was a baby who cried all. the. time I had to buy myself stuff for having 2 difficult kids now. And more excuses and more. I seriously shopped til I dropped. All the time. We refinanced our house to pay of debt and racked it back up a year later. Out of control would not even slightly describe us.
It was a full out addiction that I was able to slow down, but never kill.
After Oliver came it just started to be impossible to get there. And I was trying to not spend so much on clothes and I started to see the price tag and say “$50 for a shirt?!” When before I’d say “it’s only $50 for a shirt”. It was slow coming, but then I started in on discount stores and sales. But I still had to buy clothes. Nothing else but clothes and shoes. I’d sale old stuff at less than half I paid, just to buy more.
Then came Dave Ramsy. Ugh. And we got rid of the credit cards. I have not used anything but my debit card for 2 years this coming May. And things changed drastically. We are still getting out of our grave we dug ourselves in, but we are doing it.
But even if it is in smaller amounts, I still struggle with it. I still buy from GroopDealz weekly. I still buy way more than is on my list at Target. I say it is cash so it’s ok, but then think about what it all adds up to, it’s a lot of money that could go to such better things! But it’s my safe place to go when I feel God disappointed me. When life has hurt me and it is my way of saying I’ll deal with this on my own.
Yesterday Lily had an orthotic appointment and her and Oliver had a dentist appointment. We had 2 hours to kill between them and I decided to take them to the mall to eat and to play. And from parking, to getting food in the food court, to trying to find a place to change Lily’s diaper, to trying to maneuver through Justice with a wheelchair (just trying to find something for the birthday girl AJ) and to all the stares at Lily like she was an exhibit at the zoo I was going to nuts on the place. I realized unless I absolutely have to, I won’t be going to the mall anymore. I had never felt so out of place with a place that once felt like home. Maybe this was good? I don’t know. Truth is, I saw stores I was dying to go into if it weren’t for being with the kids. I know I would have just gone with them in the past and cut out their play time. But I didn’t. I saw sale signs that were calling me, but instead Oliver played and I attempted a diaper change on 4’9″ Lily on an infant changer.
So I am growing. I will always be growing, but I want to grow bigger and stronger. I want to be able to understand that disappoint comes, but instead of running away from it with money in hand, I want to kneel before God with it. Cry about the disappointment. Whine even. But go to it. Not away from it. As I write this in my head I think about this dress on Groopdealz right now. I want it. The price is great and would be lovely for this summer. But I am trying to decide it I want it because I like it, or because I have a deeper need that I need to fulfill.
We all have our vices, we all have our struggles. I know all of mine. I know I can’t cure myself overnight, only God can, but I can at least acknowledge these struggles and be very aware every time I hit that confirm purchase button.
Probably still going to buy that dress. Imperfect progress was something I read about in a Lisa TerKuerst book “Unglued” and I am getting there. Each imperfect moment by moment.

In NYC

Kim Nothdurft

no comments

March 11, 2013

I always want to sing like Annie “In NYC…. ” I hope you all do the same after reading the title. Oh I love Annie!
So I have been back from NYC for a week now and wow I am back to a very busy life. I can’t believe I was able to skip out of it for a few days, it seemed impossible up til leaving and when I came back I was wondering how they all survived with out me. But dad did wonderful, the house not so great, but the kids and dogs stayed alive and happy even (well except for the sea monkey’s, those poor guys did not survive my dismissal). And I got a break that I didn’t even knew I needed as much as I truly did need. Did that even make sense?
I am not even sure I am able to sum up that weekend in any decent way, but I will try with some highlights.
The first day it was wonderful to just share with my mom. NYC has sorta become a place for us. Our adventure with that big ol city started 20 years ago this June! And we always seem to make it back every few years or so. We had the perfect plane ride and then met with some ladies at the airport… then we took a shuttle then we checked into our hotel, then we went to dinner. That pretty much sums up the trip go go go! Mom and I “slept in” that first full day and it was the last time while there. AZ time was 2 hours behind so even a 8am wake up was only 6am for us. But sleep was pretty much the last thing we had the time for there.
Friday was a free”ish” day so a group of us walked through central park and had a really nice time. We would talk and share stories and just relate with others on a level not many can. We shared tips and I even took a phone call to refill one of Lily’s mail order medications while sitting on a park bench with others moms who totally understood that phone call. We took pictures, we laughed and we shopped.

Some Yummy Mummy’s in Central Park

Friday night was our LBD (little black dress) night where we started at the Marriot where we sat and had a drink and over looked the city and then we all loaded up in a bus and had an expensive but absolutely amazingly yummy dinner, I would have been fine with just my appetizer and dessert but that is how I am carbs, carb, carbs :). It was an emotional dinner as we all shared who we were, who our awesome kids were and there were tears and laughs.

My mom and I

Saturday we had to be outside the Today Show VERY Early (after a night of no sleep due to a cup of coffee with my dessert!) and it was very cold for this AZ mama! Very cold! But the long story short is we not only got our mugs on the today show with CDKL5 bright green on, our president of IFCR, Katheryn, was able to say a little burp about us and our websites (CDKL5.com and CDKL5uk.org) got a ton of hits from our stint on the show so that made it worth it for freezing and not sleeping 🙂 Now on to trying to get them to feature us on a story, INSIDE the studio!

Yummy Mummy’s at the Today Show

I hardly remember anything else from that day, a quick tour of the 911 memorial, it was beautiful. I hadn’t been down there since 2008 with Andrew and it was incredible all they have done in 5 years! Emotional and beautiful. A quick beer followed at a pub and a cab ride back to the hotel where this lady fell fast asleep for over 2 hours! Then on to dinner (yummy Thai!) and then my mom and I saw Tom Hanks in Lucky Guy! It was awesome and we had great seats! This is a great memory!! We were in the same room as Tom Hanks! The play was funny, sad, entertaining! And I will say it again, we were in the same room as Tom Hanks!!!! (and let me just say when talking about an awesome show in NYC there can never be enough exclamation points to all you naysayers)

Sunday was breakfast at Ellen’s Stardust Diner which was so much fun!!! The waiters and waitresses just sing and bring us food. If I could ever say something would be my dream job, that would be it! Not that I sing well, but who cares it was like living in a musical. Total blast! Then we had to say goodbye to many of the moms which was really sad.

Sunday night the ones of us who were left got in a bus and headed to Yonkers, NY where our friend Paula, all the way from Ireland, had a friend who owns an Irish Pub. We probably had the best night that night. It was so casual, so fun and of course karaoke! I may have sang a little Ice Ice Baby, which I did not choose to sing the mic just ended up in my hands. But let me just say that song is far easier to sing along to in the car without a bar full of people just staring at you. But it was fun! And the base was pumping… It really was a night to remember, we followed it up with a pizza slice around 1am and had our last moments together.

Then a little breakfast and a teary goodbye we headed home on Monday. We got to the airport really early and I noticed while checking in my bag that I left my carry on in the drivers car! I was sick to my stomach, mostly a bag of mementos for my family, every time I spoke to Oliver on the phone he would ask what I was bringing him. I had a gift for Andi Jane’s 8th birthday in that bag. I was sick with worry. It took me several calls but I finally found someone interested in helping me track down Carlos (always read your drivers name, ALWAYS). Carlos called me back and said he’d run the bag back to me! I was forever indebted! I paid him a gracious tip and was able to leave NYC knowing there are good people out there. I very well know that bag was as good as gone in most situations, but Carlos was a good guy and he is my new BFF. I thanked Jesus that he had this all covered! And I came home to my family who gave me a million hugs and when they all asked what I brought them I was relieved to show them the stuff I ended up paying way more than any of them were worth.

I can tell you all about what we did and where we went, but I can’t share with everyone how it felt to be with these women. Each one of us had to move mountains to even get away. Some single moms who had to have their kids care all planned out, some of us have helping husbands but we still had to make sure each appointment was made (or cancelled) food for them to eat, plans made, medication all planned out, etc. We all fight daily for our kids and we all adore everything these special kids do. No one else quite gets it when I say Lily went a whole day without a seizure. These ladies do. There was this unspoken connection that united us. A group of moms who understand each other on levels many won’t. Moms who will get up at the butt crack of dawn in the freezing cold to hold up signs just for one chance to get the name out there of the monster who has taken so much from us. CDKL5. These ladies warmed my heart and now I can put a face (and accent) to a name now and things will never be the same. I hope we all get to see each other again, in another part of the world, preferably a warmer part of the world and definitely would love our kids to all meet!
Hope-Love-Cure CDKL5! Together we ARE stronger!

The ones who were left on Monday Am

Happy Birthday Mr. Husband

Kim Nothdurft

no comments

February 26, 2013

Today is my husband’s 31^st birthday! He is 31! I remember I couldn’t wait for him to join me in my 30’s, it would make us feel like we weren’t as far apart in age if we were both in our 30’s, but who was I kidding, age is just a number… after this life we’ve lived together we must be really somewhere in our 50’s.

I remember his 19^th birthday, I bought him a skateboard.

I remember being mad at him on his 21^st birthday because he bought… no he financed a little motorcycle.

I remember his 23^rd we had a huge bash at our house for him. Lily had just had her brain surgery a few weeks earlier and Andi Jane was a few weeks of officially joining us in our family. We thought a party was much needed.

I remember a huge surprise 25^th party for him; I had it at my parent’s and totally surprised him. (I think actually disappointed him; he thought he was going out for a steak dinner)

I remember my bitterness ruining his 29^thbirthday.

I remember doing my best to make his 30^th his best day yet.

And today he is 31. From 19 to 31.. wow.. I like to joke I had more tattoos than him when we first met. Oh it seems like worlds away. We met and fell in love in moments. It was the fastest relationship I had ever not only had, but seen. We jumped into everything and it could have ended just as easily.

I am so glad we decided together to do this thing. Together to change. Together to live.

I am a lucky woman today. I am a happy woman today. I am married to the man I need and am better for it.

Today we will celebrate yet another year of his life. Another year we have grown and another year we have rocked it.

I love you Andrew Steven, you are an awesome guy and I know this next year will continue to rock because we know who to trust in and let drive this ship of life.

Speak to me

Kim Nothdurft

4 comments

February 19, 2013

You ask me what do I crave the most from Lily and I will tell you it is her voice. Words. Humor. Stories. Her take on situations. Her story, her day coming from her lips.
I have always said and will continue to say that CDKL5 robbed the most important part of human interaction from her and I will always carry bitterness towards a stupid tiny deletion that took away the thing that makes us who we are.
When you describe a friend of yours where do you get your impression of them? Their style, maybe a little, their looks, yea, but how do you know the kind of person they are? It’s their voice. It is the words they say, how loud or quiet they are. The things they say about others. The big grand stories they like to tell, or the stories they never can quite tell right. Their words may tell if they are funny, or smart, clever or tough. The words we speak are how people either relate to each other, or frankly don’t like each other.
Words fill this world. And if you can’t hear them then there is a language you can speak with your hands. Options aren’t taken away when you don’t have a voice, but you do have your hands.
But when you don’t have your voice, or your hands, you are kind of stuck. You are dependent upon others for everything. And not just that, you never get understood. Not the way the rest of us are. Lily is sweet. She is sweet because she is quiet and likes to cuddle. But what if there is so much more that we never get to know. I imagine she is hilarious, just like her brother and sister. Why wouldn’t she be? Humor is the fuel in our family, why wouldn’t she be able to tell a joke? I bet Andi can bug her as much as Oli bugs Andi but she can’t say so. What if she wants to say stop it to her siblings and can’t. She just has to deal with them running around her being crazy.
I think there got a point where I stopped hoping we’d hear words from her. I stopped letting myself believe I’d hear her say “I love you mama” because when the day doesn’t come it just hurts more. We’ve gone through the heart break with thinking we found the answer for seizure control and every time it never works we are broken. And to hope for words and to never get them is even more damaging to us than seizure control I think. Because words would change everything.
So yesterday we had an appointment with a communication eval team. I was in knots over this. I knew this could change everything, or it could keep everything exactly the same. I was cautious to pray for a miracle because I didn’t want to be angry, even for a moment, with God if that was not a miracle we would be given. But I asked others to pray big for us. And I did pray big too. I cautiously prayed big for something to help Lily communicate with us and prayed to be gentle with me and my mama heart. But God came through big time on this prayer requested lifted up by some amazing people in our lives.
Appointment was at 4pm. A hit or miss time with her. But they came and she was wide awake. They put in front of her a computer screen called an eye gaze and she immediately looked right at the screen. The positioning was tough to get at first, Lily also has a visual impairment called CVI caused by the brain, not her eyes AND Lily got an awesome astigmatism just like her mama so seeing well, Lily does not. She had her glasses on and was right up in front of the screen, we moved it right to a perfect position for her and they put a cause and effect game up for her and she started popping balloons with her eyes. It was funny because it made her get all excited and wiggly. Then we started with the two choices and brought out juice. Well back up she asked for water, but I don’t think she knew what the picture was exactly but she looked and it said water so I gave her water and she cried. (Lily, spoiled Lily, doesn’t like water) so then we got it to a place where she could ask for juice or a to eat. She asked for juice, got her juice and was happy. Then we moved where the juice button was on the screen to make sure she wasn’t just looking in that direction and she chose the juice again. Then we added eat and offered her pudding and there she went for probably 15 minutes with her choosing between eat and drink and it was so intentional. She would say eat. Take a bite. Say eat. Take a bite. Then ask for a drink. Just like any of us would do while eating. She did this til the pudding was gone. She asked again to eat and I said Lily it is all gone and she cried! Yes sad, but amazing! She was so on task the entire appointment They were with us for 1.5 hours and Lily was awake, interactive and the biggest thing is she never had a seizure so she was awesome with this team. They were so wonderful too! They all had tears in their eyes and said this is why I do this job. I asked God for people with patience and patient they were. They said no need to test anything else out, she is a perfect candidate for the eye gaze system.
Now next we have to see two other systems and decide which one will be the best for her, but we will be getting her this amazing technology, in our home! And mounted to her chair! I feel a door has been open that I thought was bolted up. I feel like we will get to hear what she has to say now.
I may not be like in my dreams at night, but it is even better because it is going to be real!
We are praising God for these amazing gifts we are given and pray every non verbal child gets a chance to communicate with their family just like Lily is getting the opportunity to.
I am wordless on how I feel, yes I just wrote a lot of words, but how I feel about the actual chance to hear what Lily has to say …. absolutely wordless.
Keep us in your prayers as we continue this journey and I promise to keep everyone updated!

Slow Down Mama

Kim Nothdurft

1 comment

February 12, 2013

One day scrolling through my news feed as I often do, and I stopped at a black and white photo of a snugly chubby baby sleeping with the words “slow down mama” on it and I stopped and looked hard at this picture. These days anything with a baby is gonna make me stop, it doesn’t really matter what words are attached, or at all. If you have recently had a baby and we are Facebook friends, know I am stalking you. My baby just turned 4. He’ll eventually be in a booster seat; he hasn’t worn a diaper in a year. He talks about beating up bad guys nonstop and really thinks he is a power ranger. And what’s not even fair is how he never was a baby. The dang kid crawled at 5 months. Pulled up at 6 months! Yes you better bet your bottom dollar that I was thrilled he was well and more than fully able to do things his sister couldn’t but it would have nice for my “baby” to have been an actual “baby” for more than a few months. So yes my ovaries cringe when I see a baby. I am looking forward to this new place in life with my “littles” being more independent and going back to just having Lily be the one whom I must care for in a way that is similar to an infant, I know this is good, but it still hurts knowing my baby days are over. Had Andrew not gotten the whole snip snip I would be begging for another and I know it isn’t what we need, but my want is stronger than my sense of need. So it is a good thing we made the decision when we were of sound mind and during a time of sleepless nights and knowing we are done done done with that phase.

So I was looking at this photo. The baby reminded me of our girls, they were both so robust and dimply and just amazingly precious, Oli too, but he has always been a skinny man J, there is something about a chubby baby! So I look at this picture and read those words “slow down mama” I am reading words on my news feed on my phone while Andi is watching TV, while Oliver is playing Power Ranger, and while Lily is rolling on the floor. I am mindless to them. I think oh how I wish they were babies again, not realizing this phase too is passing before my eyes. Oliver won’t be a 16 year old playing Green Ranger beating up bad guys (well I hope not at least); Andi will be off with friends, or away in college… not an arm’s length away and Lily, well with Lily I don’t ever want one day to pass I regret missing a chance to just snuggle her.

Slow down Mama.

But we are busy right? We have sports practice and games, we have therapy and Dr. Appointments, tutoring, we have wheelchairs to maintain and groceries to buy, dinner to make and friends to keep up with. Date nights we wish for and books to read and news feeds that need to be paid attention to. Right?

Slow down Mama.

I wake up with a million things to do day and lay down at the end of my day exhausted, watch mindless TV, scroll on my phone, play words with friends and wonder did I ever even acknowledge my God today? Did we chat at all? Did I do anything with our kids that went beyond their proper care? I’ll do it tomorrow I mutter to myself to help pacify the guilt that grows in me.

Slow down Mama.

I look at my calendar for each week and want to cry uncle. I look for things that I can give up and find none.

Slow down Mama.

I know there are lots I can’t change, but I also know this is my life, my marriage, our kids; I can do things with intention when I am able to do them. I maybe can’t change the appointments, the therapies, my job, the sport events, the tutoring, but the time in between I certainly can change. Car rides with discussion, dinner time conversations. I don’t want my 4 year old to say at lunch, I can play with my phone too it’s time to put down the phone. I can go to sleep earlier and not spend my time on mindless TV, which can help me to wake up earlier and spend time in the word. Maybe walk the dogs. Get back to exercising? Nah. But it is time to slow down Mama. I hear it loud and clear and the time is now to do it. I don’t want to look back with regrets of nonsense time suckers. I want to look back and smile thinking about the messy table with valentines on it, crafts that were made and cookies that were baked. We are given just a certain amount of time and wasting it would be a tragedy.

This lent season and moving on into this season of life my mantra is “slow down Mama” and I intend to.

All Things Work Together for Good….

Kim Nothdurft

3 comments

January 31, 2013

So often you hear people say why does God let bad things happen? It is a lifelong question that you will hear a ton of different answers to. Bad stuff happens. Genes get messed up causing a devastating result. Marriages fall apart. People die. People survive accidents but live the rest of their lives dependent upon others. Life is hard. Life can suck as so many put it. It has always been that way, but people who aren’t Christ followers often use that as the reason why they don’t believe in God. And I am not here to sell anyone on anything; I just wanted to share something really special to me and it shows my heritage. Something that I came across on Christmas day when my uncle brought a bunch of my Grandparents stuff over and it answered the question so clearly in my head to the question of why bad things happen. It shows how when really bad things happen, good things happen to people. One time I googled quotes of adversity and I sat in tears as I read quotes beautifully written by people who have seen suffering and saw the other side of it. This one is one of my favorites “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ― Elisabeth Kübler-Ross

Bad things happen. It’s a matter of fact, but we don’t have a God who just throws a lightning bolt down and says make them suffer oohhh hahahahaha… he says this is going to hurt and I hurt with you. Please know I am with you and will never leave you.

When I was a year old my aunt passed away. It was always a family fact. I was too young to have remembered her but I love to hear stories about her. She was 19 years old and she suddenly got sick and her parents had to suddenly decide to remove life support on their beautiful, vivacious 19 year old daughter. It was never more than a family fact to me until I was 19 and thought how young I was and how young my aunt was. Then when I became a mom I looked at my grandparents differently. I looked at them differently because I was now a mom. A mom who was suffering herself with being a mom, I was a mom begging God to let me swap brains with my daughter because I loved her so much that I wanted to take her suffering away. And when I became a mom I thought about how my Grandma and Grandpa must be different people from who they used to be. I can only imagine when you lose a child there is the you before and the you after. I had only known the after for my grandparents and I looked at them through different eyes. Unfortunately I only got to see my grandma a couple months with those new eyes because she passed away when Lily was only 8 weeks old. At only 69 years old my Grandma Norma passed and we were all devastated, but there was no doubt that she was celebrating in heaven with Jesus and her beautiful 19 year old daughter Karen. So what is good about a 19 year old passing away suddenly? How did my family get “blessed” by something so tragic? How did we know she was in heaven with Karen? Because Karen at 19 was the first person in our family to accept Christ. She became a christian by going to church and was discipled by a wonderful family friend to whom our family’s christian heritage started from and she just so happened to be one of my longest life long friends Grandma. Karen became a christian and her illness and death introduced new people into my families lives and when the time came they all accepted Christ as well.

It was a sudden change for everyone. They all changed their lives completely. They changed because something really bad happened. They changed because their hearts were broken and they found a way to heal their brokenness. I know Karen rejoiced when she saw her family change because they lost her. I know Karen will be greeting us all one day and I can’t wait to meet her. I know Grandma and her have been playing a lot of scrabble up there and singing praises because it was what my Grandma liked to do. I bet she even watches the Suns play and gets frustrated still with them. I honestly don’t know who I would have been if tragedy didn’t strike when I was too young to understand it. I don’t know who any of us would have been. I don’t know who I would have been if Lily was off to dance class and volleyball like I planned on her doing. I don’t know if I would truly understand what it is to have a servants heart if I didn’t serve my daughter every day. I don’t know if I would ever appreciate my husband for who he is if we didn’t almost loose each other several years ago.

I honestly don’t think I would have liked who I would have became if things came to me easily and the only heart break I knew was from a boyfriend. Heck I am able to appreciate my health after we all had the most miserable flu ever last week. You really can’t taste the sweet if you never knew sour. We go through stuff and I know some of you go through some STUFF and it is hard. It is ugly. It can make you want to not continue living. But you can come out stronger and better. It is all a beautiful woven masterpiece but you really have to take a step back to see just how marvelous it really is.

This hand written note took my breath away. It is my heritage. It is proof to me that God 100% is in control of it all. And it is amazing to see my grandma used my favorite verse on this paper I had never seen before.

This is a what my grandma Norma wrote on a Sermon Note about Karen’s funeral:

“Ted Symonds gave a beautiful service for Karen. He was the pastor of Tri City Alliance Church where Karen attended. Our beautiful Karen had accepted our Lord just 11 months before she died, and because of her death, her mother, father, sister Nancy, brother Danny, Jim and Ronald, her brother in law Ted and her sister in law Paula also came to “Our Lord and Savior, Jesus Christ, and gave their hearts to him. I know that Karen is rejoicing in heaven and thinking of the verse in Romans 8:28 “And we know that all things works together for good to them that love God”

And The Winner Is…..

Kim Nothdurft

5 comments

January 12, 2013

Spoiler Alert! Cherie Dell comment #22 you are the winner!!!! But you didn’t leave me your email so can you please email me at knothdurft at gmail and get me your info and I will love to get you that necklace! 🙂 Thank you everyone!!! Let’s do it again real soon!