Calm Amongst the Chaos

Fondue for a Cure! Make a Change!

Kim Nothdurft

February 18, 2012

Ever wonder what your 9 year old daughter is thinking? Has she ever gone away for a weekend leaving you longing to hear her voice again? Have you ever wondered what really made her smile?
Ever think back about when she was an infant, the way she made eye contact with you while you fed her? Do you remember how you felt when she first uttered those first precious words, mama and dada? And how about that time she giggled herself silly over something you did. Those moments are so fleeting, but it feels so good to look back and remember those things, those moments that stopped your breath.
Those simple milestones come easy to so many babies, just like breathing, but not every one is so lucky.
My daughter had her first seizure not long after her umbilical cord fell out. Eye contact with her is rare at the least. We never got to see her reach for a toy let alone sit and crawl. Watching her walk is something saved for our dreams only. And her voice. Oh her voice. How we would do anything to hear that voice of hers form one word. Just one word. Just once. Most cannot imagine a world where their child is silent. For us it is our greatest hurt. We know stuck in a body that refuses to work with her is a smart girl. A typical 9 year old girl who is stuck, a 9 year old girl that has to rely on her parents for picking out the right outfit for her, each time she eats they make that choice of what she eats. Every television show, every place she goes. Every movie she sees. She has to sit in her wheelchair as she watches her brother and sister run around the house, feeling excluded because it isn’t always easy to include the sister who seems to pay them no mind. But I know she is there. I talk to her because I know she is there. I ask her if she likes things, because I know she is there.
A beautiful girl. A perfect girl. Our girl. LilyAnna Blu. Made of love, always giving love, living the example of a perfect love.
Some say we were dealt a bad hand. I used to ask what did I do wrong? But we know better. We were given a blessing. An angel to raise for our own. And to use the pain we have from not having the child we expected to make a difference in this world, is a gift from God.
Lily has a rare deletion on her CDKL5 gene causing her to be robbed of many things. For us parents the thing we feel the most robbed is her voice. Communicating with your child can be so easily take for granted. Maybe exhausting at times, but when your child has no voice, you dream of never ending “whys”, fights and story telling, because those are the things that make our children who they are. Their voices show us who they are and when that is lost, you are left trying to decide for yourself who she really is.
CDKL5 causes intractable seizures that happen to plague Lily’s every day. Every single day of her life she has had some seizure of some sort. Big, small, it doesn’t mater. Each one causes frustrations for us, her parents, being unable to stop something that constantly is wearing down your child can make a person go mad. Lily has to take 4 medications and be on a strange low carb, high fat diet and she still has seizures several times a day, but that is an actual improvement from where she was. It’s a hard debate what is worse, the seizures or the lack of communication. I am sure no one would like to have to decide.
But instead of crying about what we don’t have, we do cherish what we do have. And we take this hand life dealt us and plan to turn it into something amazing. We have the power to change the future. We have the ability to change the future for this disorder. What if 20 years from now a mom has a baby and that baby is screened and is found to have CDKL5, and an agent is given to that child and that child nor their parents will never even know anything is wrong? This isn’t science fiction; this is something that can happen. That will happen! What we need is support from people like you. People who want to see a change. What if it is your grandchild you could be changing the future for? You never know who will be touched. If you told me at 23 years old that my daughters life would be filled with seizures, specialists, therapists and medications I would have said you were wrong. I thought dance classes, prom and a wedding was the future for my daughter. But because her future isn’t what we planned, I pray the future will be everything a new mom plans and CDKL5 won’t rob them of what it has robbed us.
Please help our cause. Please help us change the future. CDKL5 won’t have a fighting chance against what we can all do!
Http://cdkl5.com
Join us Saturday February 25th 2012 For Fondue for a Cure in Mesa, AZ!
Plan your own fundraiser! Help out! Change the future!

ADD?

Kim Nothdurft

3 comments

February 1, 2012

Ever leave your room to take folded clothes to your daughters room, walk into that room and see that your son “fed” the guinea pig timothy hay all.over.the.entire.room, say “Oliver Isaac Steven!” and then go to get the vacuum, on the way to the vacuum see another load of laundry needs to be ran, put the dry clothes on your bed, see the show you left is almost over, finish it up while folding laundry and take another set of folded clothes to your daughters room and see the hay all over the room again and say oh yeah, I knew I was doing something. Here Bravo this is what real housewives are really all about.
If you haven’t had that happen, well awesome for you.
I just wanted to update Lily is back to eating like the rockstar I know she is. I really think it was yet another phase of refusing food all together not necessarily what she was being fed. She is back to eating everything I give her and school gives her, it really isn’t that bad of foods except for that fake sugar taste, all the other foods are regular foods I know she likes, they just had to be modified a bit.
She is still having one to two seizures a day. But I’m being patient. What other choice do we have?
I’m just thrilled she is eating again. She is getting meds and all. Yay.
I wanted to share a cute story about Andi Jane. She had a tummy ache so I brought her to work with me on Monday. She is having constipation issues again, that’s not the cute part. During the day my coworker/cousin took her to Dairy Queen and on our drive home this was our conversation. “Mom you wanna know how mean that Dairy Queen is” “sure…” “they had a sign on the door that said no shoes, no shirt, no service, mom what if someone can’t buy shoes?” “Well maybe they should buy shoes over ice cream” “Mom! Shoes cost like $13, ice cream is like $2, that is not fair to not let them get ice cream. If Mike (cousin) and I went there and Mike didn’t have shoes and I did and they would give me ice cream and not Mike, I wouldn’t get any ice cream!”
In my head I thought I should tell her the whole reason for no shoes, no shirt no service policy, but then I thought, she has a point. Her heart bleeds for others and I will just let her continue to have that kind of heart. I love my Andi Jane. She’s gonna save the world. With or without shoes.

Life Lessons

Kim Nothdurft

1 comment

January 27, 2012

Lily is eating better. I found out she loves avocado. I found some tortilla with very low carbs and who doesn’t love a cheese quesadilla? She likes a cauliflower mixture with cream and chesses that I think tastes like mashed potatoes. So I am feeling better about her getting more food in. Not happy that she is getting no relief on the seizures. This morning I had to wake her for school and I just knew I didn’t want to do that because of course that sent her straight into a seizure. But after it she ate and went to school happily so while it sucked, she is so used to them it is just part of her life. I am told to be patient. 9 years of being patient. Guess we’ll just continue being “patient”.
Andrew has been gone this week to South Dakota and I have been holding down the fort. Parenting is just not the same with only one adult. I give so many props to single moms, military moms, and moms with husbands who work out of town all the time. It is hard work! And not just missing the help with the kids, it is someone to talk to at the end of the day in bed. Someone to say “man what a day” or to giggle with about something silly the kids said or did. I am not looking forward to tomorrow it is going to be a hectic day Saturday. I am looking forward to Monday when he finally makes his way back.
I had to spend my morning at the court proving I do have insurance and paying $250 for a ticket I cannot attend traffic school for because I already been there done that just a few months ago. And it is my fault. I can’t blame the police officer. I can’t blame anyone but myself. I’d like to blame my overwhelmed brain, but that’s like a drunk blaming it on the alcohol. I have so many other ideas of what to spend $250 on. It just made my gut sick. BUT I have to say, I have gotten pulled over at least 6 times in the past 10 years and never gotten a ticket, I always drive too fast. While I do think I am a “cautious speeder”, but maybe that is a little like a “responsible drunk”, all those warnings were making me feel invincible. I mean I was pulled over at least 3 times in the past 2 years alone. I shouldn’t be driving so fast. I need to be reprimanded and believe me having to write a check for $250 made me want to vomit. But I bet you one thing; you won’t see me with another speeding ticket. At least not until I can attend traffic school again, I kid.
This day made me realize how much this felt like being a child and being held responsible for my actions. It sucked, I was mad at the cop (not his fault), annoyed with the court clerk who told me I had to come back to see the judge (not her fault), annoyed that I couldn’t smile my way to a lower fine with the judge (not his fault). Mad at my smile that seems to not be working like it used to? Ok maybe. But I pouted a bit and got over it and it left a huge imprint on taking responsibility for my actions. I realize with my kids it is the same way. Warnings are nice, they let you sigh in relief, but they also don’t teach you much. This was a great learning lesson for me today. And if life is anything, it is all about tests. Some tests we pass, some we fail and have to retake again. I am thankful for a gracious and merciful teacher who hands me the test and says this time you’ll do great.
Things are crazy, things are hectic, and things don’t go the way I want them to, especially as of right now. I have about 10 things I’d like to just change with a snap of my fingers, but that won’t happen so what I am going to do is keep moving forward. Keep trying to pass my tests and keep learning from my mistakes. I figure if I keep up this attitude by 100 I will be perfect.

Seizures, diets, new bed .. Oh my!

Kim Nothdurft

6 comments

January 24, 2012

Seizures are the devil. I hate them. Lily is on 4 anti seizure meds. 4. Have you ever read the labels on anti seizure meds? Ever listen to a commercial talking about a medication for foot fungus and hear the side effects and figure you’d rather just have foot fungus? Yeah it’s like that. We’re no stranger to AED’s, we’re no stranger to lots of them, but 4. That’s just dumb. Plain ole dumb. But you’d think, well with 4 AED’s the child couldn’t possibly have seizures, right? Well that is where you my friend would be wrong. Lily still does in deed have seizures and wanna hear something else on top of it all? Lily got put on a modified atkins diet. This means hardly any carbs, tons of fat and no sugar. Oh did you know that already by the no carb thing? Well things were starting out ok last weekend, then by Monday she took a turn south. Started refusing everything. Everything. She is getting keto-cal, which she actually loves (a formula for kids on keto diet, like her diet but even more restrictive), she likes this smoothie I make that is a convert of a smoothie I drink every morning, a combo of heavy cream, water, ice, low carb diabetic yogurt, peanut butter and a bunch of spinach, she likes that. And she likes a yogurt whipped cream combo and this is literally only whipped cream with a touch of sweet n low and don’t even get me started on my kick of I hate all things unnatural, especially with fake sugars. I had a waitress tell me Lily should not have a diet soda because it contains aspertine. Thanks lady. Appreciate that little nugget. So we are on week 2, on week 4 we can more than double her carbs and maybe life will be better but as of right now she is hating life and that makes me hate life. Feeding Lily has always been a time consuming event, but now it is like a marathon event that you keep falling before you reach the finish line, and you will only get the yogurt in and she will spit out that yogurt if you even think of slipping her meds in it. Something we were always able to do with full flavored yogurts/puddings. But maybe this isn’t the diets fault, because Lily has on occasions gone on not eating kicks and I am thinking this may be more of one of those events because at a point of desperation I took 1/8 C of her favorite greek honey vanilla yogurt (her allotted amount of carbs for the day), the stuff that tastes like sweet heaven, and tried to get her to eat it and she refused that too. The only protein she is getting is in the smoothie. She drinks, she just doesn’t want to eat. I promised myself to give this the full college try, but considering I only went to college for one year and that second semester only ended up being a first aide class after dropping anything that mattered so I guess the old college try may not be to me what others may think of it. To be perfectly honest here, I have always been afraid of the day Lily stops eating. It happens a lot with kids like Lily, and I never want that to happen, but if I had a button to put her meds in??? Man life would be a whole lot different. I can’t believe I even wished that. If you have known me these last 9 years, you know I pride myself on no button for Lily. Many kids like Lily and in better shape than Lily have buttons. Lily has always eaten like a champ so it really sucks that I am saying this. Meds never used to be an issue. I am being cleaver and figuring it out how to get them in, but it is hard. And there were days when I don’t think she got any and no wonder her seizures are a mess. The mom in me is ready to give her a carb hog day and let her go wild and see if she starts eating again, but the stubborn in me says we’ve made it this far we must go on. I’d really like someone other than myself in my head to argue with, but then I imagine I’d have a whole nother world of issues to deal with.
So right now Lily and I battle each meal. It sucks. I don’t want her to have brain surgery yet she is on 4 meds that do nothing and a diet that seems to do nothing and has a neuro that seems to think surgery will do something. I am a mama that wants someone to write the play book and I read it. Preferably available on audible.com.
Lily did her get new bed. That is an awesome thing. I’d love to share a picture, but life isn’t that easy with out your camera. I can’t post pictures on the blog of what I took with the ipad. I know, right? A sphincter says what?
But I can say one piece of positive news, I apparently was carrying a huge load on my back before this new bed came. That first night, after we said our prayers and I tucked her safely in, I slept a whole different sleep that night and could honestly and literally say I felt lighter.
Man, I can’t imagine how I’d walk if we found some way to get these seizures back under some control. I’m not asking them to go away completely, I already know that is not a hill we can climb, 9 years of evidence shows this truth, but to be back where I don’t have to watch her go stiff, hit her body on something near by, go red, stop breathing for moments of time, maybe that would make my steps feel like air. And who cares about me and my walking on air, what about Lily? I bet her nights would be a whole lot different without waking to seizures and sleeping to seizures. My poor precious girl. We need to find relief.
Ahhhhhhhhhhhhhhh the sweet relief of verbal diarrhea. I feel a little better. How about you?

Resolutions?

Kim Nothdurft

2 comments

January 22, 2012

“Too broad” my friend Codi says to me on New Years Eve as I tell her my resolution. But it was way too late into the night to really have any sort of meaningful conversation with me, I am sure at the time I thought it was meaningful, but by the next day it was lost in a huge headache. “Too broad” was right though I mean I said I wanted to live life fuller. I knew what I meant, but that could mean travel the world, leave my family to travel with the Renaissance Festival (a thought that does cross my mind at least once a year), or it could mean to sing and dance while we clean the house. I mean we all want to live a fuller life. We want to be in our lives enjoying each moment, right? Well maybe not those who live in their own filth on Hoarders, but are those people real anyway? But wanting and doing are two totally different things. Like today all I want to do is sit at my laptop and write. It’s been too long and I really wanted to commit to writing more, it is what makes me a better person, yet if I am really trying to write and Oli keeps coming up to me to reload his nurf gun telling me he wants to “shoot people” every 5 seconds and it is frustrating me am I not living fully? That is where the line gets blurred. One side if me would see living for myself as locked up in some beach cottage alone probably drinking way too much wine spending my time writing. Yet another side of me, the bigger side of me wants to live for my family so I will continually stop to fill his nurf gun, get up a million times to help him leaving whatever I write to be nothing but crap. Mindless mumbling that goes no where. I drive and I think of things I want to say, want to write yet it just gets lost in my head along with seizure meds and diets and practices and a job and another job and dinner and oh maybe something fun to do with my kids that has nothing to do with any of those other items listed above. Then I go on pinterest and get linked to blogs where these people have it all together. Rules for raising sons. Rules for raising daughters. Rules to be a better person. Rules for passing it forward. All beautiful things. Things I can totally see myself saying/writing if I weren’t on overdrive in my real life. So I wonder are these people locking themselves in their room and letting their kids fend for themselves? Or is that my jealous assumption to what most likely is they have the rules figured out and their kids sit and color with each other politely asking each other for the blue and green crayons? And is that yet another judgement to the fact maybe they need less sleep than I and are able to stay awake til 11pm and instead of spending their time rolling their eyes at the real housewives of whatever county knowing full well that the “real” housewives realize that their kids bus driver saw them in the same shirt for 3 days in a row and that is what it looks like to be real. Whatever judgement I place on people who have their act together is all about me and where I feel like I am lacking in my life.
I have so many wants that may actually be needs, but they never make it past the whirlpool going on in my brain, so when I said I want to live my life fuller I meant I want to be in every moment. Yet this moment, the one I want to write in I have a little boy who won’t give a two second break to actually think one coherant thought. So here I am thinking whose life am I supposed to live fully? His or mine? Are my dreams set aside when I had kids, let alone 3 of them? Do you put aside your wants for them or do you try to do both? I feel like I am failing miserable on all counts because I want to do it all. So when I say I want to live fuller that is so incredibly broad and something easy to say, but what I want from that statement is a different way of living. I want to play with my kids. I want them to remember a childhood of silly dance parties, edible dinners and a mom and dad that laughed with them. I don’t want them to remember me on my laptop ignorning them. But I also want them to be able to look back and read my thoughts on these years. Look back and respect me for working to help our family and understand I worked to make a difference for kids with CDKL5. I have to find a way to do everything at 100% instead of dividing those things into 100%. But the first step is knowing what needs to change, right? Having intentions to do better has to be a great place to start.
Maybe next year I will quit smoking. Which means I have to start smoking this year.

Another year older, another year wiser???

Kim Nothdurft

1 comment

December 29, 2011

I turned 33 last week on the 19th. And while it wasn’t my favorite day this year, it was ok. I’ll have others. My day started nice enough with Alex the Elf sitting on my new Kerug coffee maker. I always thought they were cool but never thought we’d own one. I had been fine with my coffee pot from 82 since 82. Ok not really 82, but it was old and just fine. Even if it leaked coffee each time I poured it, it was fine. But yay, add to my addiction please. Thanks hunny, that was sweet!
After that I had to get Andi ready for an appointment with a new Dr. Actually it is a chiropractor. There is a lot behind this and after this, that instead of totally throwing this post on a tangent I will just promise to comeback another day and talk about the specifics of all that. On our way to the appointment Andi Jane bursts into tears after I explain to her that us moving to a farm for her birthday probably won’t happen. After she wouldn’t stop I said Andi, “it’s my birthday, can we talk about this later?” Whatever, we get to the appointment, the guy is amazing and worked so well with her. It was a great appointment, I was encouraged, she was excited, yada yada… “ok let’s go to school!” “No” “No?” “No I don’t want to go to school, my back hurts now” (as my eyes roll) “you are going to school” this was the conversation all the way to school. Cut to me in the parking lot trying to pull a 68lb kid out of the car while she is SCREAMING and fighting me. Yes. This happened. Oh did I mention it was my birthday? We hadn’t experienced a fit like that in at least 6 months and she let all those frustrations explode out of her right there in the school parking lot. I slam her door and say fine, you can go to work with me and when we get there your dad will take you to school. You might need to throw in a $ and an # and maybe a $%#$*@$(@*@*$(& as well if you want the exact way the story went, not proud, just honest. It was infuriating. She got me. I am a patient mama. I am one very patient mamajama, but I have a limit and unfortunately when my limit is hit it is not cute. Not at all. So then we drive in silence. I am very certain there was steam escaping my ears. There had to be, I don’t know where else it could have escaped from. We get to work and dad takes her to school. Not one peep from her to her dad. She just rode quietly to school, got out and went to school. Curses. Yes, many. Oh did I mention it was my birthday??
From then on I worked. Had lunch with my sister and hubby. (yes my co-workers are my sister, my husband, my cousins husband and a sweet girl that has worked for us for over 10 years, to say were a family business would be correct) but my mood was just even. Not down
but certainly not up. It wasn’t my 16th birthday. It wasn’t anything special, but typically don’t we all just have a certain beam in us on our birthdays? Maybe not everyone, but I do. At least usually. I’ve been at therapies with Lily, the hospital with Lily, I had OB appointments, I have been sick a time or two all on my birthdays and none of those put me in the mood like having a fight with my daughter. I felt
disrespected, devalued, a person with no sense of authority, embarrassed and sad. I let a 6 year old do that to me. The rest of the evening
was nice, beer and wings with Andrew (yes my choice) but the day just stayed on an even keel for me. It sucked that I was unable to cheer
up. I was unable to change my attitude, but it was what it was. I needed to share that background to go forward.
I’m reading errr rather listening to a book that was read by some friends in a book club that I rarely can ever attend but I like to read what
they are reading, it is called 1000 Gifts. It’s not exactly a book I would pick up and read. Well the cover is very pretty, so I may pick it up
but if I read the back I’d probably put it back down. It is a religious book so you faint of heart for Jesus soooo would not like it, and even I
someone who proclaims to the world that Jesus rocks my socks has a hard time listening to something too preachy and I bet myself a
couple years ago would tune out on this one, but you know why? Because of the truths the author speaks of. No one wants to know how
they are doing things wrong, not unless they are willing to make changes of course, so this book has been very challenging for me. I love the
authors writing style, very poetic and I like that she is the one who reads her audiobook. She has a cute Canadian accent that I like to copy
while in the car. But that really wasn’t necessary to share. But you should hear me when I am listening to a book read by a British reader.
Oh cheer-io. I so wish I had an accent. Wow. Ok back to my book. She starts by sharing some of her life experiences that were really awful,
she saw a lot of tragedy and darkness but she started looking into what the bible says of giving thanks, eucharisteo, and being thankful and
finding you joy through being thankful and it really changed her life. It was a small project of writing 1000 gifts in her life that just grew and
grew and she now is blessed because she blesses others. Its a beautiful book, I am near the end and my mind has just been so wrapped
around it all and that is why I go back to sharing my birthday. Not to complain, not to be felt sorry for, not for parenting advice for an out of control child, but who I am, where I am and where should I be and who I should be. The book makes lots of mention about people who feel entitled to happiness and do what they can to be happy tend to be pretty miserable people. Also when we have expectations, we are always let down. Like for instance my birthday. Why did I feel that I should have this extra special glow on my birthday? Do I deserve that? No. So why did I expect it? So I share my birthday experience and this book because it is changing my thoughts. She also mentions in this book about how many times she washes dishes (she is a mother of 6!) and expected thankfulness from her family and when she doesn’t get it she is upset, disappointed, sad, etc but then she says what if every dish I wash is like washing God’s feet? Blessing him. Ok this was a huge point she hit on me because I feel disgruntled every time I do dishes. I hate them so I am annoyed that I am the one who most often is doing them, so when I heard this I thought oh yuck, I can’t think like that. I can’t feel like I am blessing God, I want thank yous from my family. But then when I dig deeper and really think about this, how do I really want to feel from the inside? Do I want to be “right” on all accounts that it leaves me feeling annoyed, frustrated, grumpy? Or do I want to feel good on the inside and feel joy that only I can decide for myself to feel. And when I think of how I parent when I am full of joy and how I parent when I am grumpy and frustrated those are two different me’s. And it doesn’t take a rocket scientist to know which one produces better results.
It’s not easy being thankful. It’s not easy finding the “beautiful ugly” as she calls it. But it is so necessary to do so.
So this 33 year old woman is kind of lucky in a sense that I get a whole new year with my whole new year. A time to look back on what I liked about 32 and 2011 and what I want to change moving forward as a 33 year old in 2012.
I want joy and I feel like I have the tools to find that joy. It will never be with a new house, or a farm (Andi….), or more money or more of anything. It is finding your joy in your house, right now with what you have.
I look forward to a new year with new insight. I pray that I am able to stay on course as this year goes. I am challenging myself to find that beautiful in everything, even the ugly and I challenge everyone else as well. It’s not easy, but it’s also not easy for everyone around you when you choose to be angry over the expectations you put upon everyone else. So cheers to 2012! I look forward to what I will bring to YOU.

1. Sunshine on my face
2. A city surrounded by mountains
3. Crooked teeth smiles
4. Sparkling blue eyes
5. A boy who is hard to understand
6. A husband willing to swallow his pride and make changes for his family
7. A sparkly blue wheelchair
8. Big round brown eyes

What are some of your 1000 gifts?

1000 Gifts

Christmas came and Christmas gone

Kim Nothdurft

1 comment

December 26, 2011

Here I sit on the day after Christmas. The day that all of a sudden I realize I have no elf mischief to figure out. No wrapping to put off. No shopping, no baking, no cooking. Andi Jane is at a friends, Lily is resting after her caregiver fed and bathed her for me and Oli is quietly playing with all his new toys. I am awaiting others to make a play on words with friends and pretty much got all caught up with what everyone else did yesterday on Facebook. So here I sit with my feet up nonetheless while hubby watching some show about a pawn shop while he switches back to a show about coast guard tryouts. I sit with Lily’s iPad on my lap trying to type out a blog on this keyboard that I am not a huge fan of, yet too cheap to purchase a keyboard for this thing. I guess what I am trying to say is this may be the closest to bored I have been in a long time and probably the last time in a long time. It’s quite nice to be honest. Christmas time seemed to have flown by as it always does, but I wasn’t too sad for it to be over. As much as I love it, I never realized how exhausting it is for parents and it seems the older they get the more involved it all is. And to be totally frank, I will be happy when my kids realize we are Santa. I never cared much for the whole hoopla of him anyhow. Maybe it’s because my sister was a bit of a jerk and ruined the whole thing for me before I ever really got to enjoy the idea of him, maybe that is just me projecting that upon my kids. Maybe it’s because we do a whole lot of work for him to take the credit and maybe it’s because The birth of Jesus really gets over shadowed by him. (excuse me while I get back into my bored position. I needed to change a poopy diaper and run to walgreens for some pepto for the hubs….ok …feet back up…. Ahhh…. Ok)
So where was I.. Oh yeah Scrooge mode. Not necessarily, I just first hate lying to my kids. Especially with Andi Jane who is well beyond her years. This is the same kid at 3 asked why Santa had the same wrapping paper as us, at 3! So her questions get more elaborate and it’s getting hard to keep this whole thing going. She still totally believes. How do I know this? She told Chelsey (Lily’s amazingly wonderful caregiver whom is only here during her Christmas break, all our caregivers are wonderful we are very lucky, but it’s a special treat to have
Chelsey here for this short period of time) Andi told her that Santa brought her the dollhouse because her parents would have never bought her that. Pretty funny she said that because she watched her dad put it together and we all knew he’d never choose that project on his own.
Anyway, knowing Andi we wont have too long with her still believing, but I am pretty sure she’ll help Oli still believe. So who knows how long
we will be figuring out what Alex the elf is doing each night. Although when they do realize it all, they may not think it was that funny that
“Alex” drew mustaches on their faces.
Our Christmas was wonderful. Christmas Eve was simple, we just hung out at home, I baked a lot then we volunteered in our church nursery
and after went to the 5pm service. Lily’s class didn’t meet so she sat with us. We were pretty close to the front and she was great the whole service, well almost. Andrew sat next to her and held her hand the whole time. That kept her quiet, but then daddy had to go to the restroom,
I was a seat over from her but kept touching her so she knew I was there…. But apparently that wasn’t enough for her because in the middle
of service she screamed a scream only Lily knows how to do. So loud she stopped our pastor right in his sermon. He was talking about
writing our own songs in our lives and he recovered by saying just like that and then said that it was ok and smiled. I however sat there with
an extremely red face and couldn’t stop laughing. When Andrew came back I told him what happened and for the rest of the service I just
giggled. Apparently in my attempt to quiet the child I put my hand over her mouth and realize that probably looked awful, but I didn’t know
what else to do. At the end of the service our pastor made a point to find us and apologize for stumbling after she screamed. I thought that
was very sweet of him, considering we should have been the ones to apologize. He said Lily is welcome in service any day. The service was
standing room only and I’m sure there were well over 500 people in that service so we thought that was very sweet of him to go looking for
us. Everyone loves Lily even when she screams a blood curdling scream in the middle of a Christmas Eve service.
Christmas morning was perfect. Kids loved all their gifts, they were all so excited. Oli got some drums which has been interesting. Gradma
and grandpa N got an electric mototorcycle for him and he’s been all over the place in that thing. He’s been a crack up. Girls got cute clothes and other fun girl things. Lily mostly cares about pumpkin pie and Aunt Jenn’s pineapple cake stuff that goes with ham though.
We went to my sisters this year since my parents have moved up north to Greer. My sister could put any cooking show celebrity to shame. She bakes and cooks amazingly and so it’s always nice to be at her house. It was great to see my parents were able to come down for the day and we had a great time. Whenever my family gets together it seems like we end up with a popular quote of the day and yesterday was I was gonna get your gift but the store was closed. That was a true story from my sister to Andrew but then it started coming up whenever we wanted an excuse. Then after my mom gifted out scratcher tickets (they are convience store owners) 🙂 my 14 year old niece sat there while scratching saying “I’m pretty sure this is illegal” which of course ended up being the quote of the day as well. But an awesome thing happened, my brother won $500 on his scratcher! He totally deserved it so it was an awesome thing to watch happen!
After my sisters we went to my aunts and celebrated with my moms brothers and sister, we ate, laughed and played a little LCR and I lost each time. No we really aren’t gamblers but it sure sounds like it. Christmas was a great time! We had such an amazing day. I just love being with my hubby and kids on this special day. My extended family makes things even better, but being with my hubby and the 3 very special little people we brought into this world makes me feel really blessed. Also super thrilled with my ninja I got 🙂

Christmas in the air

Kim Nothdurft

1 comment

December 20, 2011

I wrote THIS (click this) many moons ago. I wrote it as a new mom of a very special baby girl. A mom who started coming to terms with the whole meaning of Christmas. Ok I grew up knowing the meaning of Christmas, but becoming a mom meant knowing the true meaning of Christmas and maybe more so the meaning of Christmas to Mary. I have always felt a kindred to Mary. She has always fascinated me. Maybe because from the age of 5 I have played her in plays. In Kindergarten I sat still and looked down at the baby doll while my classmates sang *gasp* Away in the Manger in public school nonetheless can you imagine the boldness of that school circa 1984! Also as a teen I played Mary in a dramatic modern version of a teenage girl trying to convince her fiance that she is pregnant and not by him. I mean that part gets glazed over a bit, but can you imagine? Now a days there are many words she’d been called not to mention crazy when she says who the father is, but back then you don’t get called slut you get banished from your family, your community. This was a huge undertaking for this young girl to take on.
And I played Mary in a one woman act on Easter morning (several years ago)talking about seeing her baby boy, first born perfect son, beaten and hung upon a cross. So while I could never say I know how she feels, I can say I have spent some time channelling her trying to imagine her emotions. My favorite time is to imagine Mary though is her with her newborn baby boy. As a mom we all know there are no more precious life moments than your newborn upon your chest. Examining them for the first time after spending 9 months imagining them. And I can only imagine what Mary thought when she kissed her baby boys fingers and toes and realized that this tiny sleeping precious baby is not only her baby, but the son of God who will change our world for eternity.
I love Christmas. I love this week. The one that all the Christmas parties seem to cease and the time left is just us with our families. Baking cookies. Watching Elf, Christmas Story and Christmas Vacation. The time to wrap, construct, smile from within thinking of the smiles we will see on Christmas morning. I cannot wait to hear our little Oliver exclaim is sweet little “wow!” he exclaims whenever surprised with a little something. I can’t wait to help Lily pull her goodies of her stocking and watch her get silly after some chocolate. And I can’t wait to hear all the theories Andi will have when it comes to how Santa did it this year.
I wish you all a very blessed Christmas spent with your favorite people doing your favorite traditions!

Updates…

Kim Nothdurft

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December 12, 2011

Every year I say I won’t do this to myself. I will be more organized. I will save and I will budget. I’m a freaking FPU graduate thank you. (GoodSearch it if you don’t know what that is) But I didn’t. Here I am 2 weeks before Christmas still scrambling. But I can pat myself on my back for not touching one credit card. NOT ONE! Christmas is much thinner this year, but my debt is also. This is so not where I planned on going with this post. I saw on my google dashboard that my last post of Nov 23rd. That was a long time ago in my blog world. Darn. But I am proud of my last post so at least it didn’t sit in limbo on some dumb post about irritable bowels or something.
So let’s play catch up… we ordered a sleep safe bed for Lily and put our boxing gloves on ready to fight, but they said we’d prefer you go with the easy care bed (which is pretty darn close to the sleep safe) and they’d approve that. What? Insurance improved our request on first attempt? Awesome news. Especially since the other night on prompting from strange lights on the infrared camera in Lily’s dark room I found her face down in a pillow having a bad seizure. I immediately rolled her back and she gasped a large breath of air. I don’t even want to talk about it. I didn’t like that experience, I never want to have it again and I think God might have pulled some strings to get us this far safer bed sooner rather than later.
Lily had Ortho clinic last week checking her scoliosis and the AZ Cardinals were there! It was awesome! We’re big Card fans, always have been, always will be! I had all three kids with me due to not being able to get Andi to school and Lily to the appointment on time, so what an awesome surprise. At one moment we had 3 cardinals, 2cheerleaders and the cardinal mascot in our room. Oh and a photographer. It was awesome! They were so sweet to Lily and thought Oliver was the cutest. Andi and Oli couldn’t believe the Cardinal kissed my hand and Andi said she was going to tell her dad. On the way home Andi said “Mom the bird expressed his feelings towards you when he kissed your hand” oh she is some kid. Dr was kind as always, seemed a bit jealous of his stature compared to the football players, but got right to business. Scoli still there, and bracing may not be too far in the future. Surgery as well. One thing that caught me off guard was he asked her age twice then asked if I knew what stage she was in her disease, if she’s plateaued. I told him we aren’t aware of stages in her disorder, she isn’t typical rett. I told him she never regressed because she never progressed. She’s pretty much always been in a plateau. I was concerned with why he asked and he never followed up on that. My thoughts were he sees her getting older and sees her scoli.. and I don’t know. People complain about getting older but they shouldn’t. Be thankful for your years you are given. The more the luckier you are. I think when you have kids with severe special needs children the concerns get more as the kids get older. It sucks. That’s all I have to say about that.
Thursday the 15th I am taking Lily to keto clinic and we are going to put her on modified atkins in an attempt to help the seizures. I am praying this helps because I know according to Neuro last step will be completing the corpus callosotomy. Her seizures are just so uncontrollable right now, even on 4 meds.
Lily started back up in hippo therapy (horse) but last time we went she had a seizure 5 minutes into it and that was it. We are gonna try again tomorrow. Weather willing. It’s raining here. And a lot. So odd. So ridiculous in my opinion. TOM’s are not good rain shoes.
Wow. Intended to come on and post about Christmas and my thoughts and yadayada but I guess sometimes when I let my brain take control there is nothing my hands can do but go along with it.
I’ve been going back and forth about setting my old blog up the one about nothing. There are things I’d like to say on here, but I feel like my feelings on motherhood and especially Lily need to be here, but certain other things that I feel the need to get out shouldn’t be done here. I’ll let you all know if I do so. That would require more time from me so probably not gonna happen. But maybe.
Do blogs without pretty pictures and crafts even still exist???

Thankfulness

Kim Nothdurft

1 comment

November 23, 2011

This is the time we remember what we are most thankful for. And I could give you a list as long as the world is wide. I am thankful for so much. From the shoes that cover my feet to the roof that doesn’t leak that is over my head. Thankful for one clogged toilet because it isn’t two. I am one who does her best to find the light in dark. It is how I am wired and it is one of the few things I like in myself.
Last night was a rough night. Lily had a seizure in PT, then fell asleep and slept hard for over an hour. She woke up just to have another seizure. Then she didn’t want to eat and didn’t go back to sleep very well. So when Andi Jane whom I always let pick a book for me to read from each night before bed asked for some odd reason to read from Lily’s baby book, I was like really? “Really Andi this is what you want me to read” and she said “yes I want to learn more about Lily”. OK so I read.
I start with the easy stuff, how mom and dad met, how my pregnancy was, then her birth. Then the stupid milestone page that was practically blank. I remember not being able to wait to write the dates of crawling, pulling up, walking, saying mama and dada. But those spots were blank. I trudged on. Reading about her first holiday being Halloween and she was hospitalized at that time. I read her dr. appointments that were supposed to be about well checks and ear infections, yet this was EEG, VEEG, MRI, Pet-Scan, etc. It was awful. Then the last page was where I wrote a letter to my one year old daughter. One who I still thought would still graduate from college and I quickly gave Andi a kiss good night and went into the kitchen and cried into my hands. I sobbed for what I had back then that I don’t have anymore and that is hope. I hope this isn’t taken wrong, I still have hope that there will be a cure, I still have hope that the future can change. But I am also not still hoping for a life that isn’t going to be Lily’s life. And it is sad to look back after 8 years of change and see what you thought it would be and it isn’t.
And while this is all sad, admittedly sad, it’s not hopeless. And I am not thankless for sucky things. Without Lily in our lives who knows where would I be. Who’d I be. What priorities would I set and where would my compassion levels be? I don’t think I was ever not a compassionate person, nor an unloving person, or a person with ill set priorities, but I do think I am now a person of more. More love, more understanding, more heart and more passion. So I am thankful for those blank spots on that milestone page. As much as it sucks, I am thankful for them. Because it is those pages that has shaped our lives, our homes, our priorities and it is that precious girl who never has to fill in those blanks that I am most thankful for.
So hug your babies, hug your family. Be thankful for the people God placed in your life, in your family because there may be times you wonder why God set old Aunt Edna in your life and at the seat next to you, but maybe if you listen to what she has to say, even if it is after she tells you she doesn’t like you hair style, she may have something powerful to say. Or maybe God just wants you to practice your patience.
Happy Thanksgiving. I know I have tons to be thankful for, I am sure you do to.
XOXO