Tuesday, March 26, 2013

Spring Break ?

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

Thursday, March 14, 2013

The Mall

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

Monday, March 11, 2013


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

Friday night was our LBD (little black dress) night where we started at the Marriot where we sat and had a drink and over looked the city and then we all loaded up in a bus and had an expensive but absolutely amazingly yummy dinner, I would have been fine with just my appetizer and dessert but that is how I am carbs, carb, carbs :). It was an emotional dinner as we all shared who we were, who our awesome kids were and there were tears and laughs.
My mom and I
Saturday we had to be outside the Today Show VERY Early (after a night of no sleep due to a cup of coffee with my dessert!) and it was very cold for this AZ mama! Very cold! But the long story short is we not only got our mugs on the today show with CDKL5 bright green on, our president of IFCR, Katheryn, was able to say a little burp about us and our websites (CDKL5.com and CDKL5uk.org) got a ton of hits from our stint on the show so that made it worth it for freezing and not sleeping :) Now on to trying to get them to feature us on a story, INSIDE the studio!

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

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

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

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

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

The ones who were left on Monday Am

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