Monday, April 21, 2014

Easter

This past weekend I was reminded of the greatness of our God. Did anything big happen? No, not really anything at all, but goodness happened and that will always be my favorite reminder.
This past weekend I was able to see friends I haven't seen in awhile. I was able to go hiking with dear friends and enjoy breakfast with them afterwards. We were able to have friends/neighbors over for a big lunch and sit outside laughing and talking while all our kids got along and played inside. It was like they weren't even there. Until we came inside. Ha. Totally worth it. I got to go out to dinner with just Andrew and Lily. That never happens. We dyed Easter Eggs. I got some alone time, cleaned out closets. Got a pedicure. Found the best fitting jeans in all humanity for the cost of 4 lattes at a consignment shop. We got to spend hours enjoying my sisters cooking and my families company just laughing and telling stories. And although Lily had a bad seizure Saturday, she had a wonderful Easter Sunday. No big seizures at all. Oh what a day it is to have no big seizures. No long naps, no drooling sleepy kid. No refusing to eat or drink. Oh what a day. Oh what a weekend. 
Goodness. Goodness all over. A friend coming to the rescue with a medication we ran out of and thought Lily wouldn't get another dose til Monday. Andrew's parents being able to spend the weekend with us and the kids got fun Easter baskets. Church was soul filling as always. Being with my parents, Andrew's parents, my sisters family and my brother and his girlfriend all together was soul pleasing. 
I went to bed last night with this peace in my heart knowing that our life is good. It is so good. We are surrounded by good people. Honest to goodness, good people. And when you are lucky enough to be surrounded by good people, you can't help but remember just how good our God is.





Tuesday, April 15, 2014

The Road I must Travel

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

Monday, April 14, 2014

Seizures... always seizures

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

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







Tuesday, March 25, 2014

Greetings from our bubble

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


Monday, March 3, 2014

Reflections

This is for all you mama's out there who have withered the storms and changed who we are for people who stole our hearts from the moment they were growing in us, handed to us, or fostered by us, however they came to us, they are ours and we live for them and that changes you.
We've changed, how could we not? But it is for the better. Absolutely the better. You all inspire me.

It was Christmas 2001, and Andrew and I were so excited to share the news that we were pregnant. I was 23 and in my family, not young at all to be a mom, Andrew on the other hand was 20 and just about right. We had only been married since August and met just the New Year Eve before so to say we were on a fast track of life would put things lightly. But this baby was very wanted. We were thrilled! Our family was thrilled. Yes we were young, lived in a tiny apartment and had really nothing to our name, but everyone was happy, because it was a baby! Everyone hugged us and said "yea!", well everyone except my 11 year old niece Ariel who stomped loudly upstairs looking very upset. Mind boggled, but not giving her too much mind (she did have a flair for the dramatics) we continued to celebrate and talk the typical baby talk. Awhile later I overheard Ariel talking on the phone to her cousin and we realized she was upset that I was pregnant. She was upset that I was no longer going to be fun. Up until that Christmas morning my life was my nieces and nephew. I was the cool, fun aunt who took them places and loved being with them on weekends and during school breaks and all Ariel saw was that lady was gone. Now my world will be sleepless nights, frustrations and doting on this new little person that was ours and cool aunt Kim will fade into a sweet little place in their memory. I laughed and said I will always be the same person. And I didn't mean to lie. I really, honestly thought I would continue to be the Kim I always had been.

The whole story has become a family joke. We all laugh about it. Ariel, my now beautiful, educated, witty 23 year old niece will say what a little jerk she was and we all giggle at how she responded to what most people thought was happy news. But I never put much more thought to the whole story until recently when I read a book called What Alice Forgot by Liane Moriarty. One of the best books I have devoured in a long time. And I know it was great writing that captured me, the wit and charm the author brought to her characters, but it was also the content. It was about a 39 year old woman who hit her head in spin class and when she came to she thought she was 29 and pregnant with her 1st child. She had lost 10 years of memory and nothing was as it was. It was as if she were living a strangers life. I won't share more about the book as I want to hear all your feet shuffling to go get one for yourself. Here I even linked it for you What Alice Forgot. But this book really had me evaluating my life and who I was at 23 years old and pregnant with my first child and who I am now at 35 and have 3 kids, all gone beyond that baby stage. I am a totally different person.

Just a few weeks ago at one of our life group dinners we sat and talked about the Love Languages and what we all were and the funny thing was us women were all acts of service. But one of my friends said, I didn't used to be, it's just now that I am a mom it is more important and I thought holy crap, so true. Believe me, the old me could have cared less who took the trash out, because it sure as heck wasn't me, did I even know where the trash went? So acts of service isn't really my love language, it is my "if you and I want to survive this season" language. What did I used to like? Gifts. Yes gifts. Lots of them. As long as I don't have to know where the money came from. Because then I don't want a gift. I know how much those thing cost and know we can't afford it so thanks for the thought, but let's take it back and buy groceries. So gifts are no longer important to me, but you taking out the trash sure is.

That's who I am right now. And heck yes that sweet, excited, young mother to be would have no clue who this lady is tapping at these keys on a Saturday night 12 years later and she certainly wouldn't be all that thrilled to know she was her. She'd think, no. I'm still the fun aunt. I'm still young. I don't let things like chores and bills rule my world... do I?

I'd look at the dark circles under my eyes and wonder why I don't sleep.
I'd see the wheelchair ramp and think, does my brother live with us now? Never ever imagining the wheelchair was our daughters.
I'd see the marriage I have with Andrew as refreshing, seeing we are still in love, probably more so than we were back then. But I would have had no idea what something awful we had to survive to find that happiness.
I would see the bikes, the scooters, the backpacks and think, whoa true living big kids are ours. We are in charge of them and find an excitement and freak out at the same time at the grown-up"ness" of it all.
I'd see who my friends are and I'd be happy to know my same friends are still my friends and I managed to get some awesome new ones as well. And wonder how I did that.
I'd see my clothes and think, oh Kim... you lost your sense of style?
I'd probably be surprised my hair looks the same as it did in the 9th grade. That may be the only thing that hasn't changed much.

I'd love who I had become and hate her a little bit as well. I would understand that Ariel had the truest my honest response that day. She grieved the loss of that old cool aunt she knew she lost the minute that baby started to form in my womb.

My life changed, I have changed. My evolution didn't happen over night, it has slowly happened for more than a decade. Each step along the way has changed me into who I am today, and that person is better in so many ways, but also so very different and maybe a little worse too, I do know she sure would be a stranger to that unsuspecting 23 year old I once was.

Life is a crazy always changing, often challenging ride. This season might be the most character changing because as little as 12 years ago I had no one depend on me and now I have 3 people who do. One who we care for in ways I never imagined having to do so. But all of us, my sisters out there, we're just racing through it from practice to games, to school to friends, to play dates and doctor appointments, it is all flashing by us and it is all going so fast. And I know we will all survive these years and we will look back on these years and miss these days, but I also hope we are able to settle well into our next season and I pray to look at that lady who I become with some awe and wonder at how she survived and managed to do it all so gracefully. And how did she get the money to travel to Hawaii every year?..... Hey it's my future. Make your own.

I'm just so very thankful for a life that ever changes and challenges me and continues to push me to make better choices and better who I am.

And maybe be someone who vacations each year in Hawaii.

Before Motherhood - Fit Pregnancy Mag 2002



Family of 5 - San Diego 2013

Wednesday, January 15, 2014

Whispers in the Soul

It was a moment I heard a calming voice within my soul, I remember the exact time, where I was, what I was doing. The whisper was clear and profound. I was praying "God please stop her suffering" and in return I heard a whisper from deep inside asking, "whose suffering?" I stop, I think and I say "Me ... Me.. I am ...." each seizure I watch her go through I am suffering. Each time her body convulses and she is lost to me, I am suffering. The instant was so clear and so real and all perspective changed in that moment. I cried "Me Lord, help MY suffering". 
So here we are months later and not much has changed with Lily. To be honest, things have gotten worse. Seizures are worse, we suspect she is having circulation problems and in November she was very sick with pneumonia. There is still suffering. But there is also peace. My perspective has changed, once again, it's a never ending roller coaster when you are mom to a special needs child. Darkness and light can interchange in a moment. But the realization at that exact time of who I was really praying for, who I was crying out about and I say it is her... and it is her.... but it is often selfishly me. It is me who is hurting, it is me who is suffering. It is me who is wishing and it is me who is hoping. Those things never change. But once I got real with myself and confirmed exactly what I was truly wanting, her to get better FOR ME, my heart made a switch. 
Now I still pray each day for Lily to be comforted. I still pray the seizures are manageable. But I also pray for me. I pray that I have faith that God has his hands all over us, guiding me in my parenting not just care taking for Lily, but parenting her and her brother and sister. Do I worry still, at times yes, but I also have a quietness inside me that comforts me when it gets to be too much. I have a peace that passes all understanding.
I continue to pray for this peace that carries me and comforts me. I can look at Lily and see in her face peace. I know God has given this precious girl a great gift. I should be more proud of this sweet girl we have been given and not worry so much with all the things she can't do and the things I think she is missing out on. 
I am happy to have heard that whisper in my soul that put perspective in my life and turned my heart towards the direction it needs to head in and stay in.



Monday, January 13, 2014

Dear Kim 1994

I was in a Mothers Who Write Workshop this fall, as I have mentioned before, and this was one of my assignments I never turned in. Our task was to write a letter to our teenage self. This was the toughest one I was given. I struggled and struggled with writing it. I like to mix lightness with heavy in my writing and my teen years were tough so it was impossible to be light in this. And I guess that was why I felt so exposed with this piece. So exposed I didn't go to class that night and never turned this piece in. 
Yesterday at church our pastor talked about the examples we are to our kids. He said some crazy facts on kids who go to church with their moms don't end up continuing church nearly as often as kids who go to church with their dads. He talked about how the words we say, the actions we take are all absorbed by our children and at the end he had us all stand if we had any of x, y, or z situations growing up or in our current family now just to see how we all have been exposed to crap and we are all still here. Almost everyone stood. We all grew up with crap. We will all continue to overcome stuff, but knowing it is never too late to make changes, make ourselves better, and bring our kids up in a world better than the one before it. So I am OK sharing this piece. I am willing to expose myself because I understand that being vulnerable is how we grow and strengthen. God is good and will uses our pain for good purpose.


Happy Sweet 16 Kim. I’m sorry Dad didn't show. I wish I could change that for you, but I can’t.
I know you are hurt and upset, you have every right to be, I just want to tell you he isn't a bad guy. 
In about a year from now we will almost lose him, then things will change for the better. Cry today, hold a grudge, but keep your heart soft to him.

Pay attention to how mom does it all, and especially how she handles your brother Bryan. You will be surprised at just how much your life ends up parallel to hers. And I know how much you love him, let him know that. His disability affects him way more than it does you. That is something you should know and eventually will understand. It isn't all about you. When you realize that... the world opens up.
And that pretty mask you wear, only hurts you. I know high school is tough. I know your home life isn't “typical”, but be you. You are a lot greater than you give yourself credit for. Being two people is exhausting and you will find a freedom when you finally take off that mask.

You take second best when it comes to relationships. You settle. You take what you think you deserve, but you will see you deserve more. You will find more. Your guy is out there. I promise. It won’t be easy, but it will be worth it.

Keep your soul tender to God. I know it is just Mom’s thing right now, but God will surprise you.
You’re about to embark on some rough years. How I wish I could tell you to turn left when you go right, but even as I know now the hurts you will spend many years regretting, I would never say not to do them. It’s your mistakes that become your greatest teachers. It’s your choices you made that now force you to make better ones today.

Trust your heart, love deeply, forgive easily and always show compassion. 

God will protect you and he is there to comfort you. You are smarter, stronger and far lovelier than you ever believe you are. Chin up, take it all in. You will only be this young once.

And keep writing. It is the one thing that will always cleanse your soul. As we know running is not, nor will ever be our “thing”.