Friday, August 29, 2014

She's 12 (!)


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

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

Every birthday of hers I cry. But this year it was just a few tears and a short hiccup of breath and it was over. I didn't let myself get lost in the what might have beens or should have beens and just relished in the what it is. And it is good. She is good. We are good.
It was a great day. She got some loving on by all of us in the morning then she went to school.


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




At home she got a call from her cousins in South Dakota who wished her a happy day then we ate a homemade (a very cheesy) baked ziti with applesauce -minus applesauce for mom (yuck)- and we all enjoyed a favorite meal of Lily's with of course chocolate milk and cake.
It was nice to sit around the table with just our family and Lily's sweet caregiver of over 3 years now and  enjoy our time together. Grandma Cheryl got to be on face-time with us as we sang to Lily.
It was a great night! 


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


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

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





Wednesday, July 23, 2014

Regaining Focus!

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




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

But here they were before

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

Second day someone was "sick" and didn't think he would make it to school. I called it second day jitters...

He's fine. Just dramatic.

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





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


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


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


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


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

Thursday, July 10, 2014

And Summer is Almost Over

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

Sunday, June 8, 2014

Strike a Pose

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


Are you there God, it's me Kim






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

Thursday, June 5, 2014

Let's play catch up

I wonder if I didn't have facebook I would blog more. I am sure I would but since I do have facebook..well you know. A 3 sentence status update usually trumps a long drawn out run on sentence of a blog I tend to do. So that's that.
I have had so much I wanted to share. And I always want it to be written pretty with photos and all that jazz that makes one want to read a blog, so then I think of the energy I would need to do that and decide that doesn't win and nothing gets written. And I love to write. I do. I love it. But everything gets put in front and right now my plate is so full I should be 800 pounds, filled with all that stuff on that imaginary plate.
So here I am. At work. With lots of work to do. So this has to be quick. And don't fear for my job, I know people.
I just wanted to give an end of the school year/start of summer update and no it isn't being written from the Bahamas as it should be. Yes I come shamefully with my head down to say my huge proclamation that we will go on another Disney Cruise summer 2014 was just all hype. We did really put a down payment on it. But then I asked for it back to help with our backyard. Ha suckers. We were so caught up last year that we thought, how can we not do this every year. Then life was like... um this is how you don't Disney Cruise every year. A back yard to landscape, a broken hand, insurance refusing to  pay for expensive meds that your child cannot miss a dose of, a company taking some financial hits resulting in loss of a good bonus, um life. Yes life. That silly thing we live in that seems to suck every bit of money and energy we have. So cheers. No bahama mama, no hanging on the deck with Mickey. It's instead work. It's over air conditioned stale air and a computer screen. Cheers.
But I digress... end of the year for Lily.. sucked! Oh thought I was switching gears to awesome, hu? Ha! Fooled you. End of the year was like 100 no Disney Cruise disappointments. 7 years at Ryan Elementary. 7 years with two of the same paras, 5 years with the same teacher equals a lot of sad faces at the end of the year "party". Ha if you call me sobbing my face off, unable to utter a complete sentence a party well then I don't want to party with you.
But I will be positive and say what a blessing it was to have such a SAFE, Wonderful, Caring, Supportive place to send Lily all these years. Never had one fight. Everyone was on Lily's side and wanted the best for her. I never worried about her safety, her well being, her not being entertained, fed, loved on, hair always styled. It was above and beyond and we were blessed.
Here is Lily graduating with Ms. Ashley shaking her hand.
6th Grade Grad! Lily with Ms. Ashley (teacher) and Ms. Marlo (para since kindy)
And here she is leading the 6th grade Clap Out! Sniff Sniff Sniff. Anyone have a tissue?






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

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

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

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

So that is my update.

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




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

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

Monday, May 5, 2014

I Heart Lily .com

About a month ago I had gotten an email from AdaptiveMall.com showing a rocker/recliner chair that would be amazing for Lily. Lily's current options are wheelchair or floor while we are at home. She can't sit on the couch without being held up with full on support, she can't use the expensive bean bag we got her because it is too thin and she rolls right off. If she is sleepy she can sleep on it, but that is it. But this chair rocks! Literally! Lily used to rock and rock and rock in one of those infant to toddler chairs, she sat in it until about age 7, but then she would flip herself out of it too many times ... literally... we decided her having fun wasn't really worth her breaking her arm or leg so we had to take it away from her. Since then however she spends her time rolling on the floor. That's about it. And it sucks, but it is what it is.
So this chair really caught my eye and in the age of social media with one click I was able to share the chair with over 1000 friends and I said ... man if I had a dispensable income.. something like that. A lot of special needs parents agreed at the coolness of the thing and then one sweet friend said, "let's fund-raise for it" I replied with a simple "I heart you" and she said "seriously". And next thing to happen is my friend got an idea and ran with it and I kid you not just last week, in two days, enough funds were made to purchase the chair.
Two days! Two days! I am still overwhelmed, speechless and have a hard time wrapping my head around it all.
This friend, Laine, found a cute bracelet to make on Pinterest, held a little bracelet making party with our bible study group and her husband Gil, super talented graphic artist, made a website. They sold a bunch of bracelets at bible study on Wednesday and Thursday a site was up and the thing went viral!
IHEARTLILY.COM Check it out! We surpassed the initial goal and Friday I was able to order the chair that will be in our home in 5 weeks. People were still requesting to donate so we let them know we already met the goal, but there are continued ongoing medical expenses for Lily and any donation will be appreciated and will be put towards good use. People are still donating! Well they are super cute bracelets! And if you got one, or will get one please show it off with the hash tag #iheartlily.


Currently Lily was denied a DMO Suit for her scoliosis so we may be using the extra money to get her the suit. This frustrates me. Infuriates me. But the longer we wait to fight the longer she goes without the support she needs to help her scoliosis. She outgrew her TLSO and the DMO is a much better option for her. We had to change insurances this year, this new one is hideous. We pay too much each month and have nothing covered. And because they don't cover it, our secondary is refusing to cover the full amount. This never has happened to us before. In fact we ordered a car seat 8 (!) months ago and have yet to get that. Lily has no car seat, we have our van but sometimes that decides not to run and she has no car seat. It really leaves me wanting to just repetitively bang my head on my desk over and over again.
But I digress. We have friends who are willing to donate $20, get a cute bracelet and lift a very heavy burden from our shoulders. So we are blessed. We are loved and I am an overwhelmed woman who is suffering from many different emotions. I may sort of seem a little like Sybil. Maybe.
I started  my period the day before Lily's IEP where we talked all about moving on to Jr. High. You think I handled that well? Nope. Thanks for thinking otherwise though.
We are experiencing some serious personal issues with work. It's a mess and scary and again I am full of a knotted stomach and heart burn.
But what has always been constant in my life is God. And he has been here for me from before I breathed life and will until my last breath. He has always been a step ahead of me. Has always proved to be gracious when I least deserved it and I know he is here again. He knows how frustrating insurance can be. He knows how scary life changes are. And he knows showing himself to me in the form of good friends and generous hearts is what helps me know it will all be OK. It will all be more than OK. It is blessed and it is good.
God is good.

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.





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