Thursday, December 30, 2010

Guilty

Yesterday I was talking to Andi about guilt. I threw the word out there and she questioned what it was. I explained it as a feeling you get in your tummy when you know you are doing something either wrong or not nice. She said she understood and that was the end of the conversation.
Cut to Target a little later, I tell Andi to pick out a box of cereal, she grabs a big box of Lucky Charms, I say no let’s get this box (generic) she whines and says she wants the one with the leprechaun. I compromise and say then get the smaller box with him on it. Yes I’m cheap. So we finish up our Target trip and get home. I start unloading groceries and I see the generic Lucky Charms. I am totally confused. Andrew makes fun of the box and I say that isn’t what we got. I call Andi into the kitchen and ask her if she got that box of cereal and this is what she says “well I felt my tummy hurt like I had to poop but I didn’t have to poop it was, what is that called? Guilt? Yeah guilt. You said not to buy the big box and I wanted it, but then my tummy hurt so I put it back and picked up the other one.” Then she just walks into the other room. I stand there in awe. She listens. She listens.
Keep voting! 2 days left!

Wednesday, December 29, 2010

Holiday Miracle Fashion Show

I am so proud to have been a part of this wonderful charity event for Phoenix Children's Hospital and so thankful they interviewed me and let me "plug" CDKL5.
Watch and see how cute the kids are all in the fashion show!
A couple days left, keep voting!!! Lily had 2 large tonic clonic seizures today amongst all the small seizures she has. We had to add yet another med to her huge daily regime of medications. Please vote, let's cure this stupid disorder! Don't forget to comment that you voted!

Ivanhoe Couture Holiday Miracle from Missionary Films on Vimeo.

Monday, December 27, 2010

Ok Now I'm Begging

I truly believe December is the most wonderful time of the year. I love everything about it. I love the hustle and bustle, I must because why else would I still be shopping Christmas Eve Eve? I love the crabby people who you run across and the happy happy joy joy ones too.

I love the smells, the baking, the decorations, driving around looking at lights, the mall Santa Claus, trying to get the gifts for your kids that will bring the biggest smiles, making evidence of a visit from Santa. I love it all. I love that my birthday is in the crescendo of it all. I get to celebrate my birthday at the most wonderful time of the year. I love December.

But December 2002 my opinion changed for awhile. I found out I was pregnant December 2001, but by 2002 I had a 4 month old I was afraid for Santa to hold because what if she would have a seizure with him. We had a 4 month old that had a total of 4 very large grand mal seizures on Christmas day 2002. And not much changed by 2003. And 2004. And 2005. And 2006. And 2007. And 2008. And 2009. And 2010.

My attitude has gotten better over the years, but you better bet I still don’t wish every Christmas morning Lily was tearing into presents, smiling big over her gifts. Not propped up watching her brother and sister open gifts and then have a big seizure amongst it all.

Every single time I watch her have a seizure I am taken back to that first one. I am frustrated, angry and mostly sad. I want so much for Lily to enjoy everything she is surrounded with, and maybe she does, but I want her to have fun. Smile, laugh, care about the gift we are showing up right in front of her face.

When I think about all we’ve gone through with Lily, I am reminded of how far I have come with my acceptance with her, but I am never very far off of the reminder of all that I am angry about missing with her.

Yes I stay positive and I love that little girl with every bit of me. But I so selfishly want to see her how I feel she was always meant to be. I want to see her and her sister Christmas morning running to the tree. I want to see that. I want that more than anything else in this world but it won’t happen. But it could happen for another family down the road who has a child with CDKL5 but never have to suffer the way Lily did because we raised enough money and awareness to find a cure and if not a cure AT LEAST appropriate treatment.

We are just a few days away from closing up this Pepsi voting thing and we are currently in 12th place. I see there are 3 (3!) animal causes in the top 10 that we should be replaced with. I love animals too, but can we even compare a child with an abandoned cat? How can priorities be so confused?

I am just pleading today, tomorrow and the last few days of 2010 that we all vote each day and tell our friends and family to do the same. Let’s push us up several places and get this thing done. Our kids need this more than any cat does. Hell I’ll take in several of those homeless animals, if we all did, they certainly wouldn’t need $50k would they? Let’s put the money to a cause that will save lives and families well being.

Please. And don’t forget to go to the contest post and comment if you voted.

Text 102973 and click the widget on the right of the screen.

Peace and love to you all!

Sunday, December 19, 2010

CONTEST!

Ok I have never done a contest before, but in efforts to win Pepsi Refresh this month I am going to do one. My lovely friend Amy over at http://www.babiesnbags.com/ has offered two $25 gift certificates to her awesome online store in efforts to raise money for CDKL5 Research. Babies 'n Bags is a local owned business ran by a talented mother/daughter duo! Take a few minutes and browse the site, I bet it won't take you long to find something you want.I've got my eye on a cute apron as we speak.
So here are the rules and we are going on honesty here, make the right choices (that is said in stern motherly voice to make anyone who is cheating feel guilty), all I ask is that you vote every day and when you do come back here and put your name in the comment box. If you vote daily, you can comment daily. Two winners will be randomly selected by Andi Jane!
First way to vote is text 102973 to 73774
Second way is to vote at Pepsi and don't sign up through facebook, make an account and vote there (the widgit is on the top right, just click on it)
Thirdly is vote via facebook http://www.facebook.com/apps/application.php?id=263136462520 (it is much easier to be my friend on facebook and click on the links I post daily)
And that is it! Vote and post in comment box. Just your name will do, but if you want to sing my praises you can do that too (although it may make my head large, it won't help you win). If you are mean however, I bet Andi won't pick you ;)
Winner will be named January 1st! (make sure to leave your email in the comment or a way I can reach ya!)

Monday, December 13, 2010

Just because....

If a song is ever to bring a smile to my face it is this one



what doesn't bring a smile to my face are all the dumb spam comments. so uncool.

Wednesday, December 8, 2010

Prayers Please

I found out I was pregnant December 2001 and shortly after those two lines were pink I found myself all over the internet. I didn't know the first thing about why my boobs hurt, why I was crying at a drop of a hat and the next minute attempting a drop kick to Andrew and I found an August 2002 expecting club on Ivillage and joined there I got my questions answers and sometimes just an offer for a virtual frypan to hit Andrew with if needed. Cut to 9 years later, I still go on that board daily (we've moved our meeting place, but you get my point). Yes people will say I don't really "know" these people, but I beg to differ. I've shared with these ladies more sometimes than I am willing to share out loud. We have seen so much together and the fact that so many of us are still coming to that board daily for 9 years says something. I've met a few lovely ladies in the real world and love being a part of this group. And right now we have a tragedy going on and I am asking for prayers for a very special little guy named Collin. He has an awful disease called NMO that he has been bravely fighting for years now and right now he is very sick. http://www.caringbridge.org/visit/collinsquest
His amazing parents have moved mountains to make this little boy comfortable and receiving the best care possible and right now they are praying that God's will be done. I think we all are praying for a miracle and we know God is able, but we pray his will be done.
Please join me in storming the heavens with prayers for this amazing family.

Monday, December 6, 2010

Fun Day!!

Ok back to splash for a cure a wonderful woman named Christina who is creator and owner of a fabulous children's clothing line called Ivanhoe Couture donated a sweet tutu outfit to our raffle. Well she alone set up a fundraiser for Phoenix Children's Hospital at a luxury resort in Paradise Valley that included a child fashion show and she had our 3 monkeys in it.
I thought I would loose my mind back stage. For some reason I had the only children running like wild animals. Apparently I have no control. Most kids nervous around strangers and in a strange place... not mine.
The outfits were adorable! Her thing is blinged tops and tutu's and cute hair accessories. Well Lily and Andi looked simply sweet enough to eat. And she had a Johnny Cash shirt for Ollie and it says "Baby in Black". It was adorable! Ollie of all the kids was the most comfortable on the runway. Seriously, they clapped and he just ate it up. The child isn't even two. I figured I'd have one model in the family, I just didn't think it would be a boy.
My friend Stephanie emceed the thing, she is a local celebrity here and the host for a local morning show called Sonoran Living, so the kids already knew her and it was funny because Andi Jane came out shy and Stephanie said "she is not shy, show them your stuff" and then Andi strutted down the runway and at the end blew kisses! So maybe we'll have two models. I was more hoping for doctors....
I got to push Lily in her chair and I was not prepared to be handed the microphone and describe Lily's disorder. Ack! I sucked, but Lily looked so pretty it didn't matter.
They also had some very special models, patients of PCH who were well enough to come. We met a little girl named Alexa who has Spinal Muscular Atrophy she is 3 and just such a doll! Seeing her with all her equipment made me sad to see how much some parents have to deal with and made us feel blessed that Lily, yes has an awful disorder, she is a healthy girl. And just so precious. She does not love fashion. She refused to open her eyes when we had the cute hat on her. Take the hat off, eyes open. She is so funny! They did an interview with me and she had her eyes closed the whole time. Anyway, it was an awesome day!
Here are some photos of the busy day. (which I ended with a 7 hour shift at the restaurant, needless to say I'm spending today relaxing! Well as much as I can with wild man Ollie)



bunch more being added to flickr

Saturday, December 4, 2010

Early Christmas for Us

So after almost a year of denials and appeals and with the help of Lily's most awesome PT she finally got her TAOS Orthotic System! Now this thing is incredibly different for Lily. She is not used to be all strapped in. Not used to heavy shoes. Not used to standing so freely. This was her first attempt and I think she did pretty awesome. Since it is a video taken from my phone I am not able to edit so no need to watch all 5 minutes, but Lily is incredibly cute so maybe you will. But we just wanted to share how she is in this at the beginning and I hope to update with her progress!
Happy December folks. After coasting through Halloween and Thanksgiving, I am ready to throw myself into Christmas and making the end of this year make up for all the crap it gave us earlier.
We're sending 2010 off with a bang!

PS we are still in the running for $50k from Pepsi! Keep voting! Let's make December our month! Text daily 102973 to 73774 as well as vote on Pepsi Refresh and Facebook!


Sunday, November 28, 2010

Thankfulness 10 - Wrap Up

I'm gonna finish up this thankful November ala Erica over at the Robertson Family (mom of sweet Avery with Rett Syndrome) and do this list style, because yes I am thankful for the important things like my kids, my home, my family, my life, but there are so many non important yet essentials to my life and I will list them all now. You may need to take an intermission. This may take awhile. These are of course in no particular order...

  1. lip gloss
  2. good tippers
  3. goody spin pin
  4. tampons
  5. disposable diapers
  6. socks
  7. miralax (for Lily of course)
  8. reisling (for me of course)
  9. coffee
  10. even better starbucks
  11. toilet paper
  12. a kid who says "mom I am the girl who saved Christmas"
  13. kitchen aid mixer
  14. automatic pet feeders
  15. a husband who wants to put lights up for Christmas
  16. a birthday in December
  17. a boy he hugs and kisses other kids who are crying (boundary issues or not)
  18. keebler town house flips
  19. a girl who doesn't say a word, but cracks up when you make the sounds she does
  20. scented candles
  21. a good friend with 600 thread count sheets
  22. october, november, december, january, feburary, march and april in arizona
  23. may, june, july, august and september in northern arizona
  24. tivo
  25. bravo
  26. amazing friends
  27. vs pink! sweats
  28. online shopping
  29. 36" inseam jeans
  30. a good bra
  31. an amazing church
  32. MOPS
  33. great family
  34. good always comes from bad if you look for it
  35. blackberry
  36. hobo wallets
  37. good old fashion magazines
  38. laptop
  39. itouch
  40. several good purses
  41. a warm home
  42. online banking
  43. chocolate
  44. recliners
  45. my blanket
  46. hubby's sweatshirts
  47. ikea
  48. target
  49. good doctors
  50. movie theaters
  51. good hair colorist and stylist
  52. bret and barb at orthotic specialists
  53. awesome therapists who go above and beyond
  54. a mom who buys great ever lasting gifts like special ornaments every year and personalized stockings
  55. qt with crushed iced cherry and vanilla flavoring in dr pepper

Tuesday, November 23, 2010

Thankfulness 9

I'm thankful for a sense of humor and even more thankful for other people with them.
As a server now I run across a lot of people and not every one has a sense of humor. Go figure. But when I get a customer who has one or better yet gets mine, I am golden! It can make my whole shift. So I can only assume the same goes towards other fellow humorous creatures that work in our community. Take the pharmacist at Target yesterday. I had a whole 8 minutes before my shift and Target happens in be where I park my car at work (take note stalkers). I have had this sinus crap, I think we're going on week 4, probably should get into the Dr. but I really only have time to take my kids to the Dr. I don't come very high on my list. Back to my story. I am in a hurry. Advil Cold and Sinus, sure I'll give them a plug it's the only medication that takes away my nasty sinus headaches, is of course behind the counter at pharmacy's because as we all know the crack heads ruin everything. So I hand him the card and he asks me for my drivers license. I hand it to him. Still in a hurry and have that sense of urgency to move along, "registration?" I look up blankly. "Birth certificate?... passport?" I stop staring and smile. "If this cold doesn't go away I'm gonna end up in jail" I joke and he says "it's only a 24-48 hour stay and I hear those ladies are real nice". He's joking with me! He's joking with me! Thank God almighty he is joking with me and not only is he joking, he is pretty darn funny especially for a pharmacist. Take no offense pharmacists, you are smart, you don't have to be funny too. "I'm sure they are just lovely" I say back smiling ear to ear. "Hope you feel better soon" he says. I thank him and run to work. And I tell you what I was in a great mood. Not that I would have been in a bad mood if he just checked me out like most pharmacists would have, and no I didn't want his phone number, it just made my day to joke around with a stranger. Made me realize when I asked my customer if next time he just wants a bowl of ranch because he's salad had too "many greens" maybe I made his day a little better too (btw he laughed and laughed when I said that, I am careful with who I make fun of, the guys who complained about their forks having hard water stains on them, they just get their food).
So share a joke with a stranger. You just might make their day. Or if you're not very funny, just smile.


Saturday, November 20, 2010

Thankfulness 8

I’m thankful for marriage. And not just mine, but the institute of it. And while I try to practice traditional family values, I also love and appreciate all types of marriages. Traditional and nontraditional. I just love the fact that two people come and decide that they will take life’s journey together. And at first you are starry eyed most often young and so in love you can’t see straight. Then life happens and you grow together or apart. And it is sad to see how many do it apart. I am totally guilty here. I was a starry eyed 20 year old and a 21 year old divorcee. No intentions of trying to work it out. We just went our separate ways. I am glad that happened because we weren’t the right people for each other and if we tried to force it I don’t know for sure our future, but I don’t think it would have been so great. And if I stayed I couldn’t have met Andrew and then you see there would be no LilyAnna Blu, Andi Jane and Oliver Isaac Steven Nothdurft.
A decade plus later marriage is so much more than a relationship. And bring children into the mix and here you are in a partnership. You sleep together, parent together, you do your finances together, share a bathroom, closet, and sometimes a vehicle. You live your lives together. There is no you or I, it is us. And so often along that way you forget all about what made you those starry eyed lovers and that’s when so many couples say, I’m not in love with you anymore and leave.
What I love are the couples who stick it through and not only stick it through but see the worst marriage can offer and dust it off and keep on going. And not only keep on going, but do it better. Nothing I love more than a random conversation with an elderly couple who tells me about their marriage together. So often there is humor in their answer of how they worked and so often you still see that sparkle for each other. My parents stuck it though. Andrew’s parents have stuck it through as well as both sets of my grandparents, both my grandma’s passed away with their husbands by their side. Both Andrew’s grandfathers left their wives young widows. Divorce is not prevalent on either side of our families, but sunshine and rainbows aren’t either. I appreciate changes made, love renewed, spirits restored. I believe in forgiveness and understanding. I believe sins are forgiven, but consequences still have to be paid. I believe in a just God who loves marriage and family. In our family I want the man to be the head, to lead our family and support us in all ways. I understand that may annoy feminists, but it is just how I feel.
I heard this song on KLOVE the other day and I just cried. Exactly the words this man is singing were words I was crying this past summer. I wanted to be lead by strong hands. I wanted to have him stand when I couldn’t and you know what, God heard my cries and gave me that man. It wasn’t overnight and it didn’t come out of a good situation, but God knows what he is doing. And sometimes we have to deal with sour to taste the sweet. And it is hard to be thankful for things that have happened, but how can I not be thankful to have the husband I have leading his family the way it always should have been.
This picture means a new start. A new beginning from a couple that has seen it all and then some. We want to grow, learn and start a new and I am thankful to God for overseeing us and making marriage a union I whole heartedly want to be a part of.




Wednesday, November 17, 2010

Thankfulness 7

So my good friend Liz calls me on Saturday and says “so what’s this deal about your bird and it about to have it eggs hatch?” “What are you talking about?” I ask, “Andi told Reagan that you have a blue bird that’s eggs are gonna hatch and she has been asking nonstop to come over and see it” “Oh. My. Gosh.” I say. I am driving at this time and I look back at Andi Jane and I said “did you tell Reagan that you have a bird that is going to hatch some eggs?!” And she smiles and shrugs. I give her a dirty look and explain that I am so sorry, that it is so not true. First off I despise birds and if one was in my house, I would not be in my house. Secondly, what?! Like seriously Andi?
So the story goes on as Reagan is sad to hear that Andi lied and we have to have this long talk with Andi about lying.
Now granted the story makes me laugh. But it also pisses me off. But in looking for thankfulness in things less than pleasant I had to realize that having a child who can speak is awesome. One with a vivid imagination is amazing. Having parenting skills to take her lying and turn it into a lesson is wonderful. Like me telling her anything she wants she can get at Target. Get her hopes up then say, sorry I was lying. Mean, maybe, but she understood how Reagan felt after that. I’m thankful for the opportunity to be a parent. To be a teacher.
So while that child will test me until the day the lay me to rest, I am so thankful for her spunk her, feisty attitude, her character and all those characteristics giving me a learning lesson practically daily.


Tuesday, November 16, 2010

Thankfulness 6

On a lighter note....
And no I didn't take the weekend off from being thankful, I just took it off from writing. Officially it's Tuesday now so I suppose I took a long weekend, but I spent all day yesterday home with Ollie cleaning the home I am so thankful for ... so there.
I am tall. 5'11.5" yes 11.5". I never hit the 6' mark, but most people just assume I am 6' and I will at times just stake that claim. But honest to God I am not 6' tall. And naturally thin. I am not bragging, I'm not. I just have always had a fast metabolism, even with hypothyroidism. I am active and I eat whatever I want, but in moderation. I know people roll their eyes at that, but I am not eat a batch of cookies kind of gal, just one please, ok maybe two. And yes I am incredibly thankful for that too.
I was "found" at a mall when I was 13 years old and became a model instantly. I was wine and dined, traveled all over the country and a few places out of the country mostly before I was legally able to drive. I was in three different international Vogues, Brides, Self, Mademoiselle, Sassy, Teen (I am fully aware of how much I am dating myself with magazines that are no longer in publication) etc. And I am yes thankful for those awesome opportunities, but this isn't brag on my past post, this is actually a post about being humble. No matter what I did in NYC, LA, or even the Virgin Islands, I came back to Kino Jr. High and was not cool. I was a foot taller than all the girls and maybe a foot and a half taller than the boys. And if any boy was taller than me, he certainly wasn't interested in me. He liked the cute voluptuous cheerleader. So nothing about being a model in Mesa, AZ meant anything to anyone. It was an odd experience to have 23 year old men hit on me on the subway in NYC then come home and have no one ask me to a dance. But you know what, I am so thankful that my childhood was like that. I can't imagine who I'd be if everyone told me I was "lucky" "beautiful" or God forbid "perfect". I may had actually grown up believing that were true. What I grew up to was being called daddy long legs, jolly green giant, skinny minny, stick legs, oh this was a nice one.. Abraham Lincoln on stilts... not that those follow me around still.... ahem.... Cory Rittenhouse you big jerk!
Seriously though, now women have told me in my adulthood that they wish they were tall like me, or they want long legs like me, but first of all I will be the first to tell you everything I dislike about myself and secondly I say ok but if you want to be tall like me, you have to survive Jr. High like I did! And believe me, it was not easy! Especially add a last name like Diepstraten. I'm surprised I turned out as well as I did. Must be why I am such a fighter for my Lily and am soooo conscious of how she looks when we are out. People are always gonna stare so we make sure she looks absolutely gorgeous while they are doing it. She doesn't sport high waters like yours truly did. That's for darn sure.
So yes I am grateful for those years I just wanted to chop off my legs. Drank lots of coffee in hopes that the whole it stunts your growth thing was true. Was made fun of. Because of those years I developed character. A sense of humor. I learned no one of any quality will like me because of my looks, but they will like me if I am funny, warm and kind.
I came across this picture at my mom's house and it just brought back all those uncomfortable memories of being so different from my peers. It is ok to laugh. We all do.
You may have to look hard but I am sure you can find me ;) This is a team softball picture. I was 12. Summer before 7th grade. (you have to double click if you want to see it in all its glory)
ps... ahhhaaaa I fixed the comments! I welcome one and all to comment freely.. even you anonymous ;)

Friday, November 12, 2010

Thankfulness 5

I'm finding it hard to be thankful for Lily's seizures, which are off the charts right now. But I was challenged to find thankfulness in ALL things and not just the wonderful things like my family, friends, warm house (that we are totally upside down in but that is neither here nor there) and food to eat. And I am not thankful that Lily has seizures, not the act of themself. How can I? They come on when we are having fun. Then they make her whole body stiffen, then she has an odd smile while her body is involuntarily moving and she is clearly not "there" then when that finally fades and it is at least a minute or more, then she is wiped out. She passes out where ever she is. Her chair, the floor and if it is an environment she simply cannot sleep then she will just cry and cry and cry. How do I say thanks for that? BUT what I can do is say thanks God for being with her through it. And while it is hard to sometimes even do that, I have to dig further and see beyond the seizure itself and think about the things in life I would have never known if my precious baby never started having seizures.
I have learned to stick up for my daughter and myself along the way. I learned no is not a stop, just a fork in the road. I've learned I am far stronger than I ever gave myself credit for. I would have never met Wendy (my awesome Nashville friend), Tiffany (Emmie's mom), Kelly, (Janelle's mom), Carol (Kaitlyn's mom), Geri (Nathanial's mom), Linda (Rylee's mom), Beverly (Cheyenne's mom), Jean (best preschool teacher alive), Ginny, Marcia, Michelle, Sara, Tara, Mary, Marie, Ms. Amy, Sarah, Kris, Molly, Ms. Ashley, Kris, Marlo, Teresa, Sharon, Jennie, oh my heaven's the list goes on and on! I know I am missing so many amazing wonderful people who have come and gone in our lives. People who have blessed me and enriched my life to an extent I would have never known. Sometimes I wonder if Lily we're who I planned and not who God planned would I be who I am today. I don't doubt my parenting skills, but I do worry about what my priorities would have been.
I'm no saint there isn't one day that passes I don't wish to see Lily and Andi Jane interact as sisters should. I wonder what it is like to just say everyone load up in the van and just go. I fantasize about an easier life all the time, but then wonder would I be as honored to be my kids mom? Would I appreciate the stories Andi Jane tells or the simple skill of Ollie feeding himself? Yes some days I feel sorry for myself but other days I am truly thankful to God for trusting us with Lily. So no I am not thankful for the suffering I have to see my daughter go through every single day, but I am thankful for the life we have because of her.

Wednesday, November 10, 2010

Thankfulness 4

I am thankful for my friends.
I have friends I have known since childhood and some I have only known a year and others I have met somewhere along the way. But my friends are all amazing women and each offer me something different and they, and I hate to sound so Jerry McGuire (but it was an awesome movie) but seriously, complete me.
Some give me brutal honesty. Some soften the blow. Some can make me laugh until tears roll down my face and others I can look at and break into tears. They all have warm and welcoming shoulders that comfort me in times of need and 2010 has been the year that I have needed good shoulders the most.
I feel educated by my friends, empowered, understood, acknowledged, worthy, and loved by them. I can go to them for honesty. I can go to them for advice. Sometimes it’s as simple as what to wear with this, and how do you handle when your kid says they hate you and other times it is how do I survive until tomorrow. I am prayed for by my friends and cared for by my friends and I am so thankful to God for my friends.
I always feel sorry for women who say they don’t like girls or they’d rather male friends. I just think they haven’t met the right friends, because a friendship with other women is something so different than anything a man can offer. Sure guys aren’t catty and they are fun to have a good laugh with. But I would never ask one what to wear or how to survive my next day. Unless they are gay but that would put them back into the warm soft friend zone that my girls are in. So yes, this is to all my girls. You all are what made this year bearable. I love you all and want you to know what your friendship means to me.
Cheers to you!



Tuesday, November 9, 2010

Thankfulness 3

I am thankful for in-laws. I happen to be a very lucky woman married into a wonderful family. I have a lot of girl friends and acquaintances and let me tell you in laws, especially mother in laws, aren’t the highest ranking position in a lot of women’s lives. But I can honestly say I am blessed in this arena. It hasn’t always been roses and tulips, but we all have grown into each other quite beautifully. Andrew has two brothers and I love each one of them. I love how different each guy is yet all so similar. And with brother in laws I get two sisters in law and I love them so much! We all get along and when we are together we have so much fun! I wish we were all closer, but it makes our get togethers even better when we do finally see each other. We had such a great time in South Dakota this past July with Josh and Carrie and Ayden and Avery! And a great time just a few weeks ago when Jeremy, Andrea and Jayda came to visit us.
And along with great in-laws I get awesome nieces and one sweet nephew and one more on the way to try to even up the score. I love that a family of all boys made 4 granddaughters and 2.5 grandsons. I am pretty sure the total will stay 4 and 3, but you never know. I know our participation is complete.
Andrew’s family has been so loving and accepting of Lily from the start. They have all rallied around for her and have loved her unconditionally and we appreciate every single one of them. That includes all Andrew’s Grandma’s, aunts and uncles and his awesome cousins as well. Seriously I married into an awesome family!
Grandma Cheryl (Andrew’s mom) has been so amazing. She comes to visit whenever she can and whenever we need her. Nothing big has ever happened with out her around. She is an amazing Grandma who puts her all into her family. And Grandpa Steve is a funny guy. He comes always with candy, a deep voice and a funny laugh. The kids get a huge kick out of him and so do Andrew and me when he comes because he can’t sit still so our garage will get cleaned out, garden revamped or recently he helped Andrew build our BBQ!
I am incredibly grateful for the family I was lucky enough to marry into.


Monday, November 8, 2010

Thankfulness 2

I could make this very easy and pick a person for each day, but that's too easy. I like to make things harder on myself than need be.
Next up is "extended family" I quotation that because my parents and siblings still feel very much like my immediate family to me.
My mom is the best! She really is. She showed me an example of a good woman of God and has never been judgmental or over baring. She is a one of a kind and I believe anyone who has ever met her would agree. I've heard so many adults ask to be adopted by her and my dad so therefore I know I am not wrong.
My dad is funny, extremely intelligent (maybe too intelligent for his own good), a little pessimistic/realist (I tend to get that from him, hence the need to throw in realist :)). He is full of dadisms that always make us roll our eyes or laugh. Things like "disappointment is my only friend", "here's a tip, don't park your bike in the rain", "measure twice cut once", "many hands make light work". He is generous and loves his kids and grandkids more than anything. He and Lily are just two peas in a pod. He just adores his Lily bug. He lives for us and we are grateful for everything he does.
My brother, oh Bryan, he marches, well rides his wheelchair, to a beat of his own drum. He has always been opinionated, stubborn and has a heart of gold.
Bryan has cerbal palsy and his life has been challenged to an extreme. He is smart as a whip but his body fights him in every aspect of his life. Yet he insisted on living on his own at 18. He has made friends with the wrong people at times and has made poor choices but his heart is pure good. And who am I to judge him and his choices when the stack has been stacked so high against him. He is a good man and genuinely loves and I am thankful for him and all he has taught me about life.
And my sister, Jenn. She has been a good sister to me. We'll choose to forgo talk of our life early on when she as 6 years my senior got a kick out of watching me cry. But as adults, she is awesome!:) She married and had my first niece very young so included in loving my sister I love my brother in law and her 3 kids whom I feel more like a sister to rather than an aunt. Probably why I've never been addressed by any of them as aunt, but whatever.
My sister and I finish each others sentences, know what the other would like and not like and read the same books. It's odd how well in sync we are.
Her kids are the coolest ever and I pray my kids turn out as awesome as hers. Ariel will be 20 in 2 days!! She lives in Flagstaff and goes to NAU. She is smart, gorgeous and has an amazing sense of wisdom about life and seems to always have. She's an old soul that I just adore. She is wonderful with my kids and we loved having her help out this summer. I can't believe she will be 20! Cody is funny, smart and very handsome. He taught me all about a 2 year old tantrum when I was 16 and threw himself on the floor at a grocery store for me. It was a great introductory to parenting. He has grown into a pretty cool guy and I look forward to watching his life unfold before us. And Skylar is a talented gymnast and cheerleader. She is a sarcastic, quit witted 13 year old that is incredibly bright. I love that she still will hang out with her mom and me and she is a great big cousin. Just yesterday we all went to the fair and she took Andi Jane on a bunch of rides, even rides that were too young for her. She is a selfless young woman and I simply adore all 3 of those kids.
Yesterday at the fair I said to Sky "when I was your age my mom would just say meet at a certain ride at 3pm, no cell phones just meet up" Sky asks "how did you know it was 3 o'clock" my sister and I said "we wore watches". Maybe you had to be there but it was funny. How am I the old lady telling when I was your age stories????
And along with my family comes my parents awesome families. My dad comes from a family of 5 and they all are amazing as well as their spouses. I adore each and every aunt and uncle and enjoy every minute I spend with them. And their kids, my cousins, are all such a diverse group of people within a huge age range that I love seeing and spending time with.
My mom the same thing! She comes from a family of 6 and there are 5 living and all have spouses and children and our family get-togethers are loud and fun!
I am so blessed for the family that I have.

just a few pix: my parents

my sister, aunt, niece and me (just a normal day....not a politically incorrect white trash bash)
my brother and lily




Saturday, November 6, 2010

Month of Thanksgiving

I've seen it on facebook, people saying each day what they are thankful for during the month of November. I didn't feel like doing it on facebook but I thought I'd do it here. Daily may be a bit over achieving but I will do my best.
I first pick my kids. Of course I do. What kind of mom would I be if they weren't the first thing I was thankful for. But I can't just say I'm thankful for my kids, I have to say what about them I am thankful for and I will first talk about my LilyAnna Blu.
I was so excited to be a mom and when she came I was thrilled. And I was especially thrilled she was a she! I spent a lot of time feeling angry at the world when my baby wasn't "perfect" like I planned. But as time went on we got to appreciate all that she had to offer. Her perfect soul. Her beautiful face. Her gentle heart. Lily loves and expects nothing. She is perfect and we adore everything about her. Her smile, her laugh, her "attitude" when she is annoyed at things, her appetite. She is a special girl and I love every piece of her. Even if loving her breaks our heart from time to time, it comes with the territory and I wouldn't trade her for the world.
Andi Jane was unexpected, she was cranky, she knew what she wanted and what to do if she didn't get what she wanted. She came into the world demanding attention and still at 5 1/2 wants to run the show. Her eyes are bright and brown. Her smile is perfection. Her stories she tells are dramatic and hilarious. Her heart is huge and open and I couldn't have picked a better sister for Lily. Andi Jane is compassionate, helpful, polite and social. She can fight with me, tell me I am not her best friend, but by the end of the day we are always cuddled in her bed reading and praying. God gave us Andi Jane at the right time and she is the perfect child for us.
And Oliver, Ollie, my baby. Our boy. His hair is white and his eyes are an indescribable color. He likes snuggles, kisses and hugs and thinks his sisters are his bestest friends. He loves shoes and wants to wear any pair he finds. He doesn't like things taken away from him and can throw a mean fit. His vocabulary is small but his personality is huge. He's amazing and I just adore that little man.
So not only am I thankful for my three kids, but I am thankful for who those three kids are and love watching them grow and change.






Thursday, November 4, 2010

Halloween!

I forgot to post Halloween pictures! I worked from 8:30am to almost 5pm n Halloween so I rushed home to find the kids already dressed and thanks to my mom the girls even had blush, eye shadow and blue polish. It was a long day and I didn't get many pictures, but we had a great time trick or treating at a friend's home.
Lily was Princess Jasmine, Andi Jane was Ariel the Mermaid and Ollie was a Tiger.
Fun times!



Nostalgic, Thankful, Thoughtful

Anyone watch Modern Family last night? Gloria having to celebrate dates of everything. First kiss, first time she cooked for Jay, etc. And of course Jay, the husband, having no clue as to what they are celebrating that night just goes along with it. I had to laugh, well I always have to laugh at that show, but especially because I am like Jay. Dates, unless it's a birthday or an anniversary (and even those are slippery for me) just don't phase me. If Andrew and I didn't meet on New Year's Eve I can't promise I would have remembered even that date. The anniversary of Lily's first seizure doesn't do anything to me. Just the fact my 3 week old had a seizure gets to me. So yesterday when my sister said, "It's November 3rd..oh man that is when Grandma passed away", I was taken back. When Grandma Norma passed away Lily was on one of her long hospital stays. Andrew's mom, Grandma Cheryl, stayed with Lily in the hospital so I could visit Grandma Norma at another hospital. She was only 69 years old and if she wouldn't had been so addicted to those stupid cigarettes I'd swear she'd still be around feisty as all hell. I told her that night I loved her and she said it back to me and not too many hours later I got a call in Lily's hospital room that she was gone.
Grandma Norma was feisty, she loved sports, she had a very strong opinion on everything and wouldn't even hear out the others side. She was competitive and loosing wasn't an option. She was funny and had a smile that lit up a room. But man if she didn't like your outfit, or the name of your baby she'd let you know.
I feel cheated loosing her so early. My kids never got to know her. She would have been so blessed by Lily. I'm sure she'd have a cure for her as well knowing her, I'm sure she'd know who to blame for CDKL5 and what to do fix it. And Andi Jane, her namesake (Norma Jane), and her would have been the best of friends. She would have just gotten a kick out of Andi Jane and I just know those two would have been kindred spirits. I still think they are. And Ollie. She probably wouldn't have liked his name very much and I am sure she would have told me so. But she would have loved him and his cuddles and I can almost hear her say his name.
So maybe I don't remember dates because if I remembered every date of something bad that happened I'd have a hard time doing my best to be thankful and joyful.
Today in MOPS we had some wonderful "mentor moms" talk to us about being thankful in a time that it is almost difficult to be. To be thankful IN everything we do, even if we aren't thankful FOR everything that happens.
I've made mention of this being a rough year, specifically a rough summer. I cannot share the details as it is not solely my story to tell and I would need permission and participation to share and we aren't ready for that. I can say that our marriage had been tested and tried. But with lots of changes, prayers and faith in God we are making the best decision we can make and work through this together and I pray one day be stronger together than ever before. But today in MOPS I was a sad blubbering fool because my heart was spoken to. It is so hard to be thankful for hurt. To be thankful for pain. But I have to learn and know that I must be thankful to God that he is there for me through everything. And even if we are left wondering why us, why me, why did this happen, I have to remember I will know why and it may not be for years later, but I will know why we had to have this hurt. Just like with Lily and even with the struggles I have with Andi. There are always reasons for our pain and it will be made clear to us one day.
So I am thankful for the 2x4 God hit us with this summer. It made us realize what we have to loose. Not to take anything for granted and to remember God first in our marriage and only with God first can we get there.
Currently life is stressful, busy, Lily's seizures are out of whack. But I have Lily. And her seizures aren't life threatening. And she doesn't complain about them like she really should. Life is hectic because I am trying to work and be a mom, but how many people out there can't find a job? I wish I could just stay at home all the time with my kids but I am thankful that I was able to for such a long time. I know we'll get back there.
So I am going to try to keep in mind, especially this month of Thanksgiving, to remember to give thanks for the things I do have and the things I love so much. And even the stupid things that piss me off and made me sad. So with all that said wish me luck! :)

Friday, October 29, 2010

Kisses, Comfort... VOTE

This morning I brought Ollie into Lily's room while I was dressing her for school and he wanted on her bed, so I picked him up and put him on her bed next to her and he puckered his lips and made the muuuuu sound and pulled Lily's hand out of her mouth and laid a big fat kiss on her lips! Then when Andi and I asked for one he refused. Only kisses for Lily! So sweet!
Then this very same morning I ran to my bedroom for a hair brush and walk back to the dining room and see Andi rubbing Lily's arm and asking if she was ok. I said what is wrong and Andi says, "she had a seizure". Bless both their hearts. I thanked Andi for comforting her sister, but also said, sweetie please also call for me if I am not in her room. My kids are the sweetest.
Because Lily's seizures are so bad right now Andrew hooked up a camera in her room, we've always had one but it wasn't night vision. We always had to have a light on in there if we wanted to see her so he hooked it up and it wires to our tv in our bedroom. I feel so much better now turning it on the the Lily channel after our shows. She's in picture in picture when we are catching up on TIVO. :)

~~~~~~~~~~~~~~~ALSO~~~~~~~~~~~~~~~~~~~~~
We just have 3 days left and we have to be in the top 10 in order to win the $50k from Pepsi. Please vote on the gadget to the right and also text (free) 102973 to 73774!

Thursday, October 28, 2010

Weekend Update

I got home Tuesday night at 5:45pm and I was beat! It was just Andrew greeting me, Ollie was at my mom’s, Lily and Andi were with Ms. Sharon at home and I was so happy to see them all! 5 days was a long time to be away, but what a great get away it was.
I got in around 2pm on Friday and we just laid low. I got to see Langan again and finally meet Franny. Oh my heavens, two of the sweetest girls ever! I honestly think a piece of my heart stayed in Nashville. Langan impressed me so much with her walking, stair climbing, self feeding skills and she gave me some of the best hugs! I loved it when I stood by her and she would grab my hand and hold it. Melted my heart. Little Franny has the bluest eyes and the biggest smile that makes her nose crinkle. She and I took to each other pretty quickly and I really am going to miss those girls. Friday night I got to watch Langan’s ABA therapy (is that right?) then we got Pei Wei, the girls went to sleep and Wendy and I watched a documentary she was in regarding a very sad case she had a few years back. Not bad watching your host on TV that isn’t shot from a cell phone posted on youtube from a drunken wedding. Then we crashed.
Saturday was a busy day! I stood and smiled at a booth at a down syndrome walk. Wendy was asked to hand out information on a class she teaches (in her free time…ha!) teaching rights to parents of special needs children ie how to survive IEP’s and get what your child needs. Then we had lunch at the famous Rotiers and had a yummy cheeseburger. Then back to the home to chill before a night of honkey tonking. Yup that is what it is called and boy did we honkey tonk! We started with dinner then moved on to “lower broad” (?) and had a honky tonking good time. Well from what I remember ;) Let’s say it will be a loooong time before I drink another beer. But it sure was fun to let loose! Dance and sing along with all the country music I grew up on. Who doesn’t love a little fishin in the dark?
Sunday was a bit rough for me after a honky tonking night; we got up and tailgated the Titans/Eagles game. I stuck with coke. Then the game, which was great! So much fun and a win for the Titans. It was fun to be a part of such an exciting game. I tell you what Wendy is a man’s dream with her stat remembering, rule knowing, football loving heart! Andrew would die if I cared a quarter about the Cards than her and her Titans! Wendy is one cool chick!
Sunday night I got to enjoy some of Jon’s homemade pizza and it was fabulous! But also witnessed sweet Langan have a pretty nasty seizure and it was hard being on the other side of it. I guess I got to feel what it feels like for our friends and family to watch Lily seize. It isn’t the same and made me sad. Langan is so sweet and works so hard to do the things she does and stupid seizures just knock her down. It was heart wrenching to watch her seize and Wendy just comfort her while it happened. I guess it was like watching my life unfold in front of me and I just hate that anyone has to go thru this. It really seems so unfair. I know there is a reason, but sometimes I still think it totally sucks. Well I always think it totally sucks.
Monday came upon us fast and we took Langan to school and I am so glad I got to meet her teachers and see her awesome school! Made me wish Lily and Andi went there too! Then we had some time to kill and Wendy took me to the court house to where I got to meet some of Nashville’s most honorable Judges, watch a murder trial and get asked if I was one of Wendy’s clients. That meant they thought I was coming from jail. I asked him if he thought I looked like one of her clients after she said no and he chuckled and said no. Sheesh I thought I looked cute that day, not criminal. Then we had lunch with one of Wendy’s friend who is an incredible woman, and also a special needs mom who inspired me. We all chatted for hours! The day ended with a meeting with the Mayor of Nashville who happens to be a friend of Wendy. He was so nice and we sat in his office and just hung out. I tell you what that Wendy can give one hell of a tour of Nashville! Only thing I wish I saw was Keith Urban and Nicole Kidman.
Monday night I borrowed Wendy’s car and met up with Andrew’s cousin Ashley who moved down there from South Dakota to go to Belmont and loves it so much she stayed there. She took me to a nice shopping area and to dinner. While out shopping I saw a guy on a phone with a distinct voice and said, “That’s my pastor from my church in AZ!” Ashley couldn’t believe it! I couldn’t believe it! I stopped him and introduced myself, it’s a big church, he said he knew me and that I was the first person from The Grove he has seen on his tour. It was hilarious to me to run into my pastor of all people in Nashville,TN! I was just glad I didn’t run into him on Saturday night down on lower broad.
Tuesday I had to kiss those beautiful girls goodbye and hug my Wendy good bye. And it seemed to have taken all day but then I was home to my family.
The house was a disaster, the kids needed their teeth brushed, but they were healthy and happy and they missed their mama, probably not as much as I missed them, but did I ever miss them. And life has been insanely hectic since I got back. I have to work Friday, Saturday and Sunday morning before taking the kids trick or treating. Then looking at my schedule for next week Dr apts, commitments, life. I’m thinking it will slow down hummm I’m thinking after Oliver is shipped off to college.

Wednesday, October 27, 2010

I'm baaaack

Dear friends,

If anything ever happens to me, please take turns cleaning my floors until Andrew finds either a new wife or a live in house cleaner. For my children's sake, please.

Love,
Kim who will be cleaning floors for days.

Thursday, October 21, 2010

The Powers of The Net

I wanted to share a post from a fabulous CDKL5 mom who lives in Australia and had a beautiful son with CDKL5 and has twin daughters with CDKL5. Because of her family the gene was identified and now kids are able to be diagnosed all across the world. They are the pioneers in CDKL5 and could't be a sweeter family on the earth. I so long to meet them in person one day. Asha and Lily look very similar and I would love to have the girls meet one day as well. Anyway I got this post on our CDKL5 yahoo group and I just had to share this lovely story about how small things can make a difference. Such as a video that took me about a day to make united two families on the other side of the world. I will second Leita on isn't the internet great and throw some props to God too. With him all things are possible. All things work together for his good. Hope you enjoy this as much as I did.

**Hi Kim,
I saw the beautiful video you've put on YouTube and want to tell you a lovely story about how it let me meet another little girl with CDKL5.
Her name is Bianca and her mum left a comment for you saying they lived in Australia. There are only 7 children diagnosed in Australia and I had never heard of her so I sent her mum a message.
Her mum emailed back with her phone number and we had a long chat the following day saying we'd like to meet one day. They live in Sydney too but about an hour away.
I told her I was going to the Children's Hospital this week to collect some t shirts.
Yesterday I recieved an email to say the hospital called offering Bianca an appointment because of a cancellation today and could we meet for coffee.
I had no idea what she or Bianca looked like so wandered around the hospital until I saw the unmistakable leg crossed, hand in mouth,sideways glance of an exceptionally beautiful little girl who looks SO much like your Lily and my Asha!!

Isn't the internet great?


Leita**

And please keep voting for CDKL5 on the Pepsi Refresh Challange, we are in the top 10and we will get the $50k if we stay there come Oct 31st at 11:59pm! Vote online with the widget on the top right of this here blog AND you can text daily 102973 to 73774.

I'll talk to you after I am refreshed from Nashville! :)

Monday, October 18, 2010

A Bottle Will Do Her...

Fall break is 2 and a half weeks long. 2 and a half long weeks.
We spent Wednesday of last week to Saturday in Greer and it was beautiful! My parents had the kids for a day and Andrew and I stayed at one of their rental cabins and we had a great break. We really just had Friday to ourselves, but it was much needed and so refreshing! We had to come back Saturday because Sunday Andrew and I had to work at church (watching babies) and then I had to work at the sports bar at 3pm. It was my first day having a section on my own. It got a little slammed at one point, but I walked away with about $70 in tips, not too bad for a Sunday night.
We have one day left of fall break and I will actually be spending the day in an alcohol class. No I don't have a problem, it is just for work. I will be there 10-2 and we found a very sweet new caregiver who is willing to watch all three and thank God because if I have one more day like today I will need that alcohol class for other reasons.
Sometimes people will say to me "I don't know how you do it" but they aren't always talking about Lily. They sometimes are talking about the child with energy that never ceases. The child who has no comprehension of the word no, the child who fights with her brother, the child who has no self control and at the end of the day she writes me a note apologizing for her bad behavior and hugs and kisses me and prays for self control. I love her. I love her I do. But man she can be exhausting. I seriously think I could take her to Doctor and get her prescribed something. I won't, but I would bet money she could be diagnosed with ADHD. I think I should take myself to the Doctor and get me a little prescription. Sigh.
She does well in school. She gets to socialize, play, learn, etc. We just need to get her back into it.
It was just days like today I feel like I could get in my car and drive far far away.
A trip to Walmart (yes Walmart) with a 20 mo old who refused nap today, a 5 year old who was just in a serious way of lacking self control and trying to push sweet Lily while pulling the crazy other two. I had no make up on. I was constantly squawking at Andi who deserved it and looked every bit the part at Walmart. But actually our Walmart is pretty nice, I looked like the typical Walmart shopper at a non typical Walmart. Go figure.
After getting a blow in July, another in August, AND yet another in September I am done. Cashed out. Thank God for my dear friend Wendy (and awesome mom to the famous Langan and now Franny) knew I was having a rough time and said "come on down to Nashville!" I typically would have said nah the kids, or nah no money, but something in me said go, do not pass go, do not collect $200, go! So this Friday at 6am (yes 6am) I will be on a plane flying to Nashville, TN (well first a plane to Atlanta, but you get the point). We are hitting some of Nashville's finest honkey tonks, we are going to a Titan's game (wearing my cardinals shirt, of course!) we are going to talk, laugh, drink and I get to get away.
With this new job, Lily's seizures worse than they have in years, several commitments I have, I am just worn out. Exhausted. Cashed out. Put a fork in me, I am done.
This trip is exactly what I need. I cannot wait. I have the kids all figured out. Andrew will be just fine with them. I am sure by Sunday I will be wanting to be coming home, but I won't be home until Tuesday.
Bummer....

Sunday, October 10, 2010

Love Hurts

Man, if love hurts, parenting is down right excruciatingly painful! Emotionally and physically!
Lily's seizures are back. She is sleeping again, eating just fine. Not sick. Everything is fine and she is up to two grand mals a day again. Suck it. I hate seizures and the only thing I probably hate more is the medication to stop the seizures. Back when she was little I would be on the phone with neuro a week ago, but I'm not jumping to do so because I don't want to up anymore of her meds that are already super high doses, I don't want to add a new med. Suck it all. Seizures you really need to get a life and stop bugging ours!
Because we are a blue collared construction family and our country is currently experiencing an economic crisis we are kind of screwed, so mama has her work pants on. I am waiting tables at a very cool sports bar near our home. It is actually been really fun so far. Cool customers, chill atmosphere, great owner, awesome job. Plus it is a nice way for me to get out of the house and make money while doing so. I waited tables 9 years ago but I was a little too nervous to ever be any good at it, but this place is different and maybe the fact that I deal with 3 demanding little creatures all day long so getting beer for dudes watching football is far easier. But what makes parenthood excruciatingly painful is not because I have to work on my feet now for 6 hour shifts at a time, it is because my beautiful little 5 year old daughter was playing with a heavy metal rod that she was no suposed to be playing with and she dropped it on my pinky toe. The pinky toe connected to the feet that have to be walked on for 6 hour shifts. Yes she was sorry. Yes it was an accident, but my Lord that hurt. Does hurt. Will hurt. Gonna hurt your eyes when you look at it....
See...

Tuesday, October 5, 2010

Oh What A Day...

Today started with a 9am appointment at Ortho Clinic. My mom had a Dr appointment so I had to take all 3. Luckily Lily's fabulous PT came to the appointment and 1st was an X-Ray. The appointment was a 2nd opinion about the scoliosis and bracing. I couldn't have the other two wild animals in the X-Ray room so luckily PT was able to hang out with them while I held Lily. In the room the kids were wild. Dr. came in, shook my hand, was very kind and had a great bedside manner. Asked what he could do for us and I told him. He looked at her film said she did have a 36 degree curve, but also said it was flexible and it could change degrees by the way she was sitting. He said she didn't need a 24 hour brace and even if he rx a 16 hour brace I probably wouldn't do it so he said she is doing ok and we can wait another 6 months. He was not being rude when he said that I wouldn't follow orders, he understood this is a quality of life issue and I told him if it were necessary to her health of course I would but at this point it isn't necessary and we just have to keep up with horse therapy, her other therapies and she has to be positioned properly in her seating systems, which are all things we are doing. He said surgery will probably be an issue one day, but not in the near future. He also said if PT emails him info on the TAOS Orthotic system the state keeps denying us on he will order it. I think if he does we may actually get it. Fingers crossed.
After that we had 2 hours to kill before Lily's eye appointment so we got some drive thru and went to the park. The kids had a blast, it was a beautiful day before the rain came down. After putting hand sanitizer on our bums after a gross toilet situation, we headed to the eye doctor. The storm was in full effect when I unloaded the kids out of the van. That wheelchair lift couldn't be slower when the rain is coming down sideways (said ala Forest Gump).
The eye doctor was as good looking as always, and after they dilated her eyes said her nerves look great (Vigabitrine can cause nerve loss and peripheral vision loss so in order to stay on that med she has to be seen every 3 months). So it was 2 pm when we finally left and I treated the kids to some Sonic ice cream for hanging in there with me all day and (by the way the girls are on fall break for 2.5 weeks, that is why I had everyone) then we drove home in a freak of a rain storm.
Lily's caregiver Sharon met us at the house and watched Lily and Andi while Ollie and I had to run to the grocery store. Finally we get home, I walk through the back yard to check out how wet the garden got and I see our patio glass table shattered. Totally shattered.
Sigh. Gone from 8am to 4pm with 3 kids. Home to a shattered table. I'm beat.
But thank God no brace!!!!

Monday, October 4, 2010

VOTE!

Please vote daily for IFCR in the Pepsi Refresh Project! You can vote easily from my blog or from http://CDKL5.com and also text daily 102973 to 73774.
Lily has seizures every single day of her life. Every single day. Lily can't say one word. She can't feed herself. CDKL5 stole everything from her and we just want to give it the fight of it's life.
So folks get out there and vote!!!!

Friday, October 1, 2010

Answered Prayers!

Just wanted a happy post and let everyone know the grand mals are not back! They were here that day Lily decided sleeping wasn't for her and left when she finally started to sleep peacefully again. We have keep this as a top prayer for us and it appears to have been answered. All us moms know how important sleep is and just how bad it is when we don't have it. It makes total sense for Lily who has a low threshold anyway to go into overdrive when her system is off.
So yay! She has only been having her usuals for the past 2 days. Fingers crossed.
Today is Friday before fall break. Our kids have modified year round school schedule, they are on 9 weeks, off 2 and so on. Here we are at 2 off. 2 weeks and 2 days. We may spend a week in Greer, but we really haven't planned that far in advance yet. Who does that?! :)
I'll keep you posted.

Wednesday, September 29, 2010

Seizures SUCK!

Lily has not been sleeping, then last night she had a huge grand mal, then became inconsolable then she had another big one. Sharon (her awesome care giver) fed her a light meal, gave her dinner meds and a quick bath and we put her to bed and she did sleep all night.
I am praying this was due to lack of sleep, but I am afraid it means they are back. If they are back I will be devastated. She has been doing so well. Making so many gains. This makes me sad. I hate seizures. Ugh I hate them. Seizures suck!!!!!

Tuesday, September 28, 2010

Playing Catch Up

When you think yeah things are gonna slow down they don't. Or they do so much that you're unmotivated to do anything. I've been dealing with so much lately and I am exhausted. Physically, emotionally drained. When I am struggling in life I go straight to writing and I have been, but it just hasn't been public. I do hope in time I will be able to share what all has been involved in this past summer of hell but as of right now I cannot.
I did want to share some positive notes though! Andi Jane and I went on a Kindred Daughters Retreat this past Saturday. Kindred Daughters is a group that meets at church and it is where like minded moms meet who have the same goals for our daughters. Lily and Andi are both in KD with me, but Saturday was an all day retreat up north with hiking, archery, field games, etc, it wasn't something I would be able to do with her and so I promised her a fun day with her and I that she will enjoy. Andi and I went to Prescott about a 2 hour drive. We had a great time. We really enjoyed all the games and lessons. Andi and I spent some time by ourselves praying in the woods and it was really nice. The entire day was really quite lovely.
Fri we finally got the approval for Andi to ride the bus with Lily. It only took an entire semester, but sMonday she started riding the bus with her sister. She has been so thrilled about this whole thing and has told everyone she sees about this fact. I am the one who should be shouting it to the roof tops, but I'll let her do it for me. No more waking up Ollie to pick her up. And racing home to get there just in time for Lily bug. Yay!
Lily has been having a difficult time sleeping lately and having more seizures. I have been giving her melatonin and still nothing. She will scream happy, sad, whatever it is it is loud. I don't know if it is because of the seizures or she is having the seizures because she is not sleeping. Hummmm....
But she is still doing well in therapy, school and is happy and healthy. I should knock on wood but she managed to be the only one in our home who did not get a hacking cold. Which is odd since she is usually a snotty gal, especially being in school already for 2 months! But we will take it!
Sunday we had a get together at my parents to visit with my dads cousin Ellen and her husband Paul who were visiting from Holland (The Netherlands). We hadn't seen them in 7 years and it is always so great to visit with them. They brought the kids gifts from a popular story book there and it always thrills me to get something original that no one else can get here. I have to tell this little story about my Andi Jane, she went outside where Paul was smoking and she said to him, "you know you really shouldn't smoke around kids". He laughed and told everyone about it. Thank God they have a good sense of humor. Oh my Andi Jane. She can really brighten a room.
Ollie is doing great. So cute, so much fun. He really is a cool kid. We really enjoy having this little guy as our finale child. I still believe he is the cherry on top.
Being these kids mom is the best thing I have ever done in my life and I don't take a moment with them for granted.

Friday, September 17, 2010

Little Sister

We were running really late this morning, Lily had a 9am well check that I had already rescheduled 3 times and the lady on the phone from the Dr office made me feel like a felon so I had to make the appointment. Andi slept in late and I let her sleep as late as I could because I knew Lily woke her up around 3am and she had troubles going back to sleep. So we are all running around trying to get everyone loaded up to get Andi to school by 8:30am and have Lily at the Dr. by 9am. Andi was just in tears because all the shoes she wanted to wear no longer fit her. She was not happy with any of the shoes that fit her now. She didn't understand why her feet grow so much. Drama, frustration, we finally get loaded up and headed to school and I realize Ollie had no shoes on.
We are too late for regular drop off and I tell Andi she has to go into the office, I mumble to tell them she is late because she couldn't find shoes. I am crabby and kiss her and kick her out of the van.
We go about our day, Lily's appointment is fine. Annoying since she needs no Dr. care, but whatever. I drop Lily back off at school, see Andi on the playground, wave to her and go about our day.
We had to take my cat to the vet since he recently had surgery and they had to remove the tube from belly. Sigh.... infected abscess... $500 later...
Ollie missed his nap. Needless to say less than awesome day.
I pick up Andi from school and ask her about getting a tardy pass. I asked her if they had asked her why she was late and she says "yeah I told them I couldn't find shoes to match my outfit" I laughed out loud and asked her if she really said that and she said yes. I then asked what the front office lady said and she said she started to laugh and told the other ladies in the office and they were all laughing so she said she just ran to class.
I don't know if it is because I really needed the laugh after this day/summer/life, but this just made me laugh with tears. I told Andi I really needed that laugh and then she started telling me jokes that didn't make any sense. Oh my Andi. Such a character.

Monday, September 13, 2010

Middle School?

As much as I would LLLLLLOOOOOOOOOOOOOOOOOOOOOOOVVVVVVVVVVVVVVVVVVVEEEEEEEEEEEEEEEEE to elaborate on that previous post, I will not. Sorry. Oh but do I ever want to.

So Andi Jane tells me that she wants to go back to gymnastics and I said I think we have to wait because we really can't afford any extras right now. That is the back story to this:

Andi: "Mom I think you should be a teacher"
Me: "I don't think so, the kids in your class don't even listen to me when I say they need to stop using all that glue"
Andi: "NOOOOO, I mean you should teach like 7th grade"
Me: "I really don't think that is a good job for me hunny"

I think we are done talking about this then a couple minutes later

Andi: "So can you start teaching tomorrow?"
Me: "No hunny I didn't go to school to be a teacher, what is this all about?"
Andi: "If you go to work being a teacher then you can make money and I can go to gymnastics again"

Bless her little heart. I wish I could find a job, I totally do, but I am fairly certain the last thing I want to be is working with 13 yr olds. God bless you middle school teachers.

Friday, September 10, 2010

Have you ever?

Have you ever come across a human that you thought only existed in movies? At least for sure Soaps? Someone who you think should have at least a sliver of a heart only to find out, nope, they don't?
You haven't? Oh me either...
Karma, karma, karma...

Sunday, September 5, 2010

In my daughters eyes

Friday afternoon I was a hussling hussy. Ok not really, but I like to play on words. But seriously it was one of those errand running days, Ollie missed his nap from the stupid nap robbing car ride and I was to make a meal for a friend of mine (and fellow MOPS member) who just had a baby last week. I love to be of a service to people, but the meal thing just makes me nervous. I cook just fine for my family, but for others is stressful. I never know what they would like, if they will like it and then once that is all figured out, I never get the timing right. It is just a stressful thing, but it is always rewarded by the chance to sit and hold a newborn baby. :) ahhhhhhhhh.
So anyway back to the hussling hussy. I made cupcakes earlier, then while the dinner was baking I was making a special frosting, I am sweating, Andi wants to "help" but is basically just wanting to eat the frosting and Ollie of course is running on a 10 min car ride nap so he is screaming for me to hold him. I am trying to make sure Lily has her drink, snack and diaper changed in the meantime of all this.
Andrew gets home, I am trying to be pleasant, and pretty much take off, Andi in tow as usual.
On the drive there I'm sweating, looking a mess, and driving the van which although it has ac it really isn't much of a match against 110 degrees in SEPT (!) AZ. Andi says to me, "Mom you are a nice person." I think she wants something so I say "Why do you say that?" "Well whenever someone has a baby you make food and take it to them and when people die and people are sad you make them food and bring it to their house... that is like a nice person."
And want to know what I felt? Proud. Amazingly proud. This summer I have felt like I have been a less than mom. Setting poor examples by being short with the kids, frustrated and not thinking before acting. But just something as simple as making a meal a few times this summer and taking it to someones home made my daughter see me in a different light and all of a sudden I didn't feel like a sweaty disgusting hot mess, even if I was, in my daughters eyes I was a nice person and I felt on top of the world.
How lucky am I?

Thursday, September 2, 2010

"I must be lost, I was looking for Easy Street..."

I don’t know how “normal” I am. I don’t think that my mind operates like others. I’m not saying it is good, nor bad, just not normal. I live in a grey world. I know there is right and there is wrong, but the line is not made with a black sharpie all over my dining room table. Or figuratively either. I live in my world, the one that everything that happens is a lesson to be learned. I exhaust myself trying to figure out why that person in the pick up line cut me off and her license plate said “carma”. My mind is never ending running reel. I think of my life as a movie, I even have the soundtrack and often wonder how the story ends.
I can’t take a story that I hear and not try to put it into practice somehow. I take signs. I take signals and try to figure out what I am supposed to do with each one. Maybe that lady cut me off because God wanted me to practice patience. Or maybe he wanted me to have a good chuckle when I read her license plate. Maybe he was working on starving people in Africa and wasn’t paying attention. But that is just an example of how my mind works. I’m a dreamer, but not in a magical world with lollipops and gummy bears. I try to take the poop and see if I can’t at least sugar coat it enough to at least look less like poop.
This summer has been a never ending season of tears, anger, fear and frustration. Sure a few smiles from my amazing kids, but for the most part it’s been sweat and tears. Literally, it is an Arizona summer. I’ve put on here some struggles and I choose not to put up others. I’ve learned a lesson with blogging and as much as I enjoy airing out the dirty laundry, I will not. Just understand this summer has been probably the hardest season I have ever had to deal with. Not one particular thing, but a snowball of things that leaves my mind reeling. Wondering. Dreaming. And I’m trying to put into perspective what am I supposed to take from this and where do we go from here? I am still doing this and that is why I have not come here to “talk”. My handy notebook with handwritten notes is where my heart has been going lately and when I am dead you all have yourself a movie for gosh darn sure. But in all seriousness, I want to not look back on the summer of 2010 and think God that sucked. I want to look back and say God that sucked, but I am so glad that I took this away from that and now I can apply it to my fall of 2012, or whatever. I obviously am someone who gets it you can’t have the sweet with out the sour. Yup, got it. It’s literally written in ink on my wrist, “make lemonade”, but I need something deeper. I need to fully understand why this so we can have that. So I may not be the coolest blogger out there and my apologies, but I’ve never been cool. Ever. So I really don’t mind not getting that award.
After all that ramblings there is a life lesson I learned that I wanted to share. It’s been on my mind for weeks now since sweet Emmie’s funeral. Something I have a hard time sharing without immediately swelling up with tears. I do not feel comfortable sharing other people’s stories, especially about something as delicate as this. I feel like sharing a story that isn’t my own is not my business, but when Emmie’s parents shared a story with us at the funeral it was something so profound that I carry with me everywhere I go and I hope no one would mind my sharing.
Emmie’s dad spoke about their recent vacation, a cruise, and one day Emmie’s dad wanted to take her swimming so he carried her to the pool, but found it awkward to get in while holding her. A stranger saw him and said, “Can I hold your daughter for you so you can get in and I’ll hand her to you”. He used his help, swam with Emmie for 30 minutes and the entire time the man stood there with his son and waited for them and helped him take her out of the pool. That’s the story that was shared, amongst many other beautiful stories. This one I particularly took to heart because who knows how that mans day was going previously. Maybe it was a bad day? Maybe good? We’ll never know where that mans heart was, but I am pretty sure he had no idea what gift he gave this family. I don’t think he knew that a few weeks later the story would be shared at that sweet sweet angel’s funeral. He probably thought it was a simple task that anyone would do, but honestly I don’t think many would. He might have thought it was something simple, insignificant, yet now this dad will always have the memory of swimming with his daughter on vacation and not of wanting to swim with her but couldn’t because of her handicap. He will remember the goodness in a stranger and will share that story so all of us can think twice the next time we want to stop to help someone, but are in a hurry. Or we figure someone else will do it. Or we don’t really want to take the time to just stop what we're doing. Maybe after hearing this story we stop making excuses and just do.
It just proves how with every struggle we face in life we have to find out why we have these struggles. It isn’t easy.
Just Friday night I cried myself to sleep because I wanted nothing more than my daughter to beg me for an itouch or a cell phone or hell Justin Beiber tickets for her 8th birthday. But she didn’t. She never asked me for a single thing. I still struggle with one of the biggest life lessons in my daughter, but I am doing better. I let myself feel sorry for what should be, but on Saturday 8/28/10 we celebrated the best gift, the best lesson I’ve ever had and that was the 8th birthday of our special LilyAnna Blu.
I try to put positive twists on everything and I will always continue to do that because I will not be someone who will muddle through life just surviving. I will learn until the day I die and I will share my lessons with my children and hopefully my grandkids and yes they will think I am crazy, but they will one day appreciate it and hopefully some of them with think just like me and continue to learn and teach their own lessons.

Friday, August 27, 2010

Sisterly Love

Last night we had Ariel come for the last time this summer....sniff sniff... she has been the best this summer. She was Lily's hab and respite provider and the best babysitter for the other two. She asked (yes asked) us to work one more night before heading back up to NAU for her sophmore year. She came and while I was doing my chicken dance running around getting dinner for all the kids ready so Andrew and I could go on a "date" (we had to go shopping for stuff for the kids), Andi asks me to write down what I like about Lily. I write her sweetness real quick and don't even think another thought about it. Well come this morning while feeding Lily and Oliver I look over at the donation box from the fundraiser and I look in it and I see a note Ariel wrote about Lily, my note and a note from Andi saying I love my sissy.
She made a box of things we love about Lily, melted my heart. Sure she is fiesty and her and I will probaby fight until the day I die, but her heart is so tender and I just adore that she is our daughter.

Wednesday, August 25, 2010

We Splashed for a Cure!

Wow! What a weekend!
Andrew and I had a little “staycation” in Scottsdale Friday night, our anniversary was Wednesday August 18th and Grandma Cheryl was here in town to help out with Splash for a Cure. We took advantage of her to watch the kids and advantage of the awesome rates you can get at 5 star hotels because who wants to be in Arizona in August. And we had dinner and a night out on the town. No curfew, although we were in bed by 10pm. No one waking us up, except for we were both awake by 6:30am. But we had no one to feed but ourselves. And that was awesome.
Then Andrew dropped me off at a spa where I met up with my mom, sister, niece, aunt and cousin to where we had massages, facials and swim time. I thought the last thing I should do before Splash for a Cure was relax, but it surprising went well. Those ladies were on my committee so we talked a lot and planned a lot and relaxed a lot.
However when I got home, I got to work. And so did my amazing team of women who none of it would have been possible with out! Jennifer Cavanaugh, Nancy Diepstraten, Gloria Mason, Kim Dimas, Liz Beisemeyer, Ashley Galvanoni were my core team. I also had help from my nieces, my nephew, my cousins, all the other half of the women, plus a few friends went far and beyond getting me amazing raffle prizes. It practically went flawlessly. There are things that I am kicking my butt over but there is nothing I can do but just not do it next year (and yes there will be a next year!).
A little rundown for those unable to attend:
We get there at 5:10pm and they let us in to set up, event starts at 5:30pm and we did not have enough time. But those who showed early were patient and some even pitched in a hand.
Rick from Tom’s BBQ came alone and brought enough food for 200 people! He donated it all, his time, his food all for free! We got about 100 hotdogs to give to the kids and we were totally out of food at the end of the night. Since Rick came alone Andrew served food with him all night long. I was proud of him doing what he had to do to help out. And hopefully if the construction field crashes here even more than now, at least we know he has something to fall back on.
Everyone was swimming and chatting, it was probably about as hot and humid as AZ can ever get and I felt bad for those who did not want to swim and will next year see if we could do it in September. The raffle prizes were awesome and I had my niece Skylar and her friends out selling raffle tickets, Ashley and my mom working the raffle tables sweating their tails off. We sold a lot of raffles and every single item had raffle tickets in it. Some more than others, but all in all those were some pretty coveted items!
Then we sang happy birthday to the beautiful birthday girl and we had cupcakes made for everyone (Jenn, Gloria and I all made several dozen). Then we drew for the raffle and it was over.
And I kept thinking once this is over I’ll never want to do this again, just like after running a half marathon, I did that once and I pretty much stuck to that whole never doing that again, but when this was over I felt high. It was this overwhelming sense of accomplishment. We made, I don’t have a complete tally yet, but over $4,000!
Andrew’s parents did a fundraiser in South Dakota during Sturgis Bike Week and they rose over $6,000 so our team Lily will be contributing over $10,000 to IFCR (international foundation for CDKL5 research)!
And now we just know we can do more and can do better.
We are just so proud to be Lily’s parents and to have a name of something that we can beat if we really try. There is a cure out there, we just have to have enough money to get there to be interest in finding it. Sad but true. So we will keep going for Lily, for all the kids like Lily. We will fight until we find the cure and appreciate everyone willing to put up their gloves and fight with us. (or your pocketbooks, that works too)
I will be posting a video soon with the photos from the event. I’ve got one hour left of the boys nap so I will get on that right now!

Friday, August 20, 2010

2 Days

2 days until the big day! The day I have been stressing out about for the last 2 months! I am excited, nervous and well freaking out. I am sooooo not a party planner, I am not someone who asks for anything. This is every bit out of my comfort zone, yet I'm amazed at how well it is going so far. There are a few things that I am really nervous about, but in my experience in life the things I get worried about and stress about always end up never as bad as I imagine. So let's pray that is the case. I have the most amazing team of women who have helped me along the way from planning, to making, to doing. I am blessed to have the people in my life who help others because they want to. Thank you ladies and thank you to those who sent my email out and had friends send it out. The raffles items are amazing and I could have never asked for a cooler group of family and friends.
I am asking those who plan on attending to pre purchase tickets at http://splashforacure.blogspot.com and for those who cannot make it, please pray for a smooth running, succesful event.
I will update on Monday!

Tuesday, August 17, 2010

Muddeling Through...

Last night was the viewing and today the memorial service. I don't even know what to say, this gal is speechless.
I've been to funerals, I've even been to a child's funeral (2 in fact), but I never knew the child, or the parents like I know this family.
Andrew was very hesitant to join me last night and I had to remind him, no one likes this. No one ever wants to attend a funeral. But it is for those left behind that we need to be of support to.
We went. It was extremely hard to see that gorgeous precious girl there, lying there. A little girl that was just a couple weeks ago on vacation with her family.
Today at the memorial the parents stood up and spoke and I have no idea how, but it was the most beautiful thing I had ever witnessed and they shared tender moments they had and just what loving that special girl was like and I was sobbing. Almost to the ugly cry which no one wants to see. And I think about how much I hurt for them and it is nothing, NOTHING compared to the hurt, the loss, they are feeling.
I don't know what to say. I don't feel at liberty to go on about something that is not mine to share.
I am just heartbroke for this loss and want to do whatever I can to be of a comfort and it is those moments that you don't know what to do that leaves you standing there spinning in the wind.
What I do know is that Emmie was a precious girl that lived here on earth for such a short time, but the lessons she taught will stay with us for a lifetime.
Emmie Rae Check, your spirit will live on. Enjoy running, playing, singing and dancing now the way you always should have, we selfishly would have rather you stayed, but now you are free.
We love you and will always miss you.

I am praying for comfort every night for them and it feels like that is all I can do.

Friday, August 13, 2010

Grief

It is with a heavy, heavy heart I say that beautiful Emmie is no longer with us, but is with our Lord and Savior dancing, singing and playing like her earthly body never allowed her to do. But even knowing where she is now, free, I still feel so much sorrow for my friend. For Emmie's entire tight knit family and for our family of special needs moms that we have become over these past 5 years. I don't know if I have ever felt a crush like this. It's something we all fear and something we all carry in the back of our minds, but for it to become a reality, to one of US? It is unbelievable. Simply unreal.

I remember so clearly walking Lily into prek for the first day 5 years ago into Mrs. Jean's class and I see on the floor this gorgeous girl I had never seen before. She had two side buns and gorgeous jewelry, cute top and this beautiful satin long blue skirt and I said, "I need to meet her mom, I know we will get along!" And we did. Tiffany and I bonded from the start. The prek the kids went to was at Foundation for Blind Children and not only were they amazing to our kids, they were amazing to us facilitating meetings for us moms, support group meetings. It was there we laughed, we cried, we learned. We all created a bond that can only be made by people with a unique common tie. We all came from different walks of life, religions, traditions, but we all loved and adored our special kids and that was the bond we made and we all loved each others kids as our own.

Birthday parties, Mom's night outs, and the best, game nights! We all stayed in touch even when our kiddos moved on into the big bad world of public schools. We weren't seeing each other as often, but that bond is still there. And the news of our dear sweet Emmie has rocked us all to our core.

Emmie, Emmie, Emmie....You will live on in our hearts forever. You are set free from a body that you had to fight every day.
We adore you, love you and miss you so much tremendously. Keep over your mama, daddy, little sisters and soon to come baby brother, they will need to know you are around.
Here are some fun memories I wanted to share:













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