Monday, August 26, 2013

Taylor Swift

OK back in May, which only felt like yesterday, we went to see Taylor Swift in concert. I am not a big concert goer. Well anymore... I went to some pretty sweet shows back in my day... New Kids, MC Hammer, Debbie Gibson, Bon Jovi, Lollapalooza (95), George Strait, ... yes I went to some concerts! Eclectic some may say. Cheap others will say because most of those I was asked and went. But honestly I have to really really like a band/person to go to a concert. Especially now. I like my ears to not ring. I like to not stand for hours, I like to not be touching body parts with sweaty strangers. I like my money in my wallet to stay in my wallet. I am old, maybe, but I think I have always been old. I have always liked to not like these things. I remember my friends just crying a river on our ride back from the New Kids on the Block concert and thinking... hu? Why are you crying. Your mom paid a ton for those tickets, our other mom just drove us across town, we were so far back my I love Jordan sign was only seen by the folks standing by us... I was just glad to be finally going home. So yeah, I don't get all hopped up on that stuff. I don't get it. I know it makes me so very uncool. I like music. Scratch, I love music. But I like music in a way that it is always around me. It's the soundtrack of my life. It is always there, but going along with me. Not screaming, jumping up and down and sweating on me. Worship at church is my favorite time of church. I love music. Just wanted to make that clear.
BUT when I want to see a person/show I am into it like nothing else. Like Bette Midler, we saw her in Vegas. AND I LOVED HER! I wanted to marry her after the show! It was one of the best times of my life! It was a show, songs, dancing and hello Bette Midler! OK so maybe my spirit is a little closer to 70 ... so what.
And then Taylor Swift. I got an email at work because we were ticket holders at this arena and it says "Any interest in Taylor Swift" in a heart beat I said YES! Long story short we got a suite, my sister and I shared the tickets, she brought her girls and friends they chose and I brought my girls and friends they chose (well I made sure the girls we brought were Andi and Lily's friends).
I asked the moms to join us because it was a school night and we were at least an hour from home and we had enough tickets to do so, so there we were 12 of us, several little girls, a teenager and girls in their early 20's, and us moms all getting ready for Taylor Swift!
I had no idea what to expect. I love her music and that was all I knew.
Then she came out! The show was amazing in ways I can't describe!
I do think us moms could have liked it more than the girls. We were all singing. We were all dancing. Taylor looked so amazing. I felt like she was my best friend. Along with the other 20,000 folks in the place probably feeling the same way. I have a point. I am not a concert reviewer, I am just one who gives way too much back story before ever reaching a point.
But all this aside, yes she was an incredible performer, her show was bright, it was stunning, it was impossible to take your eyes off of. All this wonderful stuff that we all enjoyed. But what I truly noticed and enjoyed was how appropriate she was for all ages!
Last night I didn't watch the VMA's but I saw the backlash of it. Mylie is a train wreck, she is just a few moments away from shaving her head Brittany style. That is sad. It is a sad life they live in Hollywood and as much as my sweet girl Andi Jane loves all things acting and singing I would be hell bent on ever even letting her think of that road as a possibility. Home girl here as seen way too many seasons of Celebrity Rehab.
But so often these young fresh stars see themselves only as young stars they have to start sexifying themselves. Making themselves transform from one stigma to another. It is sad to me. I understand their world is not like ours. I don't judge these young woman growing up under that hot spotlight, and I am not going to talk about something I know nothing about. BUT I am going to say what a fresh breath of air that Taylor Swift was.
What a role model for my daughters to see. She talked about not being mean and bullying. Talked about how special each member of the audience was. How they could be anything they wanted to be. She wore cute clothes but never slutty. She was an absolute class act.
I don't even care what anyone has to say about her and her dating and whatever. I don't care. Her persona on stage was outstanding. She was who my daughters can aspire to be like. She was a star in every way and I encourage you all to take your kids to see her. She is a rare find in this world and after that concert I became one of her biggest fans.
I know this sounds corny and I am sorry. But I will also add I became a Beliber after his movie and have seen things down hill for that boy sooo maybe my opinion doesn't hold a lot of water?




Thursday, August 22, 2013

Slow Down Mama part duex

So I wrote this slow down mama post in February. I wrote it with conviction and for all intents and purposes to get myself to slow down. Yet it seemed like life had alternative ideas. We were blessed beyond belief this summer! I mean BEYOND! Maybe too blessed. We never stopped! It was a crazy time with big plans and exciting happenings that seemed to elate us and overwhelm us. I am not complaining. I went looking back at our Make a Wish trip and my heart lurched thinking about that magical trip. And Splash for a Cure! How amazing it was to send a check for over $4,000 to IFCR! I love having supportive friends and family! And our Colorado trip! What a week! And then 2 weeks ago we went to Whispering Hope Ranch with Hope Kids and had a wonderful weekend! SO amazing! Then the week after I was out every single night with a different set of friends celebrating someone's something (which was amazing, I just wish they were all spaced out better) And then last weekend Lily went to the The Ryan House and the other two to my sisters and Andrew and I celebrated our 12th anniversary at a resort. The Ryan House was amazing! What a blessing to have this option now! But even on our little stayca Andrew and I struggled to just chill out. We were constantly doing stuff. Although the stuff was eating, swimming, eating, eating... spending 2 hours (!) listening to a dumb time share thing just for a gift card to eat some more, but each morning I was up at 6am. I refused to just lie around, I went straight for coffee, then woke up Andrew with my less than stealth moves and then wanted to get up and do. Then we get home, get the kids and then it's Monday and time for work and school, backed up with laundry to where I still don't see an end in sight. Oh and we got a puppy. Did I mention we got a puppy. Don't ask me why, just look at this face and tell me you wouldn't have a puppy if you saw this face.

So here I am now. Thursday. Andrew hopped on a plane to go to South Dakota for a wedding and all I can think about it how my weekend starts in a few hours. I have nothing but a conference call scheduled for this weekend and I intend on doing puzzles. Playing Candy Crush Land. Baking. Hopefully holding my neighbors new born. Doing laundry. And nothing sounds more amazing than those things. We haven't been home on a weekend in a long time. Too long of a time. I am tired. I am beat. I am looking forward to just being at home with the kids and that is it.
And as I look back at this post I am grossed out by myself. All these things we have done have been amazing things! Wonderful thing! This is such a huge case of 1st world problems. And maybe that is what I am saying too. We need a huge detox of excess. Everything we have done has been amazing. Maybe if we were able to space them out more? Who knows. What I do know is the TV needs to be off. Phones need to be off and the kids and I need to get back to the basics. Super fun, laundry folding, fun life basis.
Maybe... just maybe it is truly time to this mama to really SLOW DOWN!

Tuesday, August 20, 2013

To the me that was 10 days away from becoming a mom....

11 years ago I was 23. I was 23, married, and pregnant with super swollen feet and pretty confident in what we were about to get ourselves into. I was an aunt. A great aunt! I had this. WE had this.
There is so much I want to tell her. Her, than confident young woman about to become a mom.
I know there are a ton of blogs on this. I read one not too long ago that I loved, shared on facebook and wish I had written it myself. I am not copying her. Well I am copying her. Her and about 80 others that I pulled up on google search trying to find the one I am talking about so I could link it. But I cannot find it. It's not an original idea to want to talk to your old self. I just loved that blog post so much it inspired me and made me want to tell myself a thing or two about the adventure she, her, me was about to encounter.
1. Just because you were in magazines and people paid you to be "pretty" doesn't mean your daughter will do that same thing. I know you named her something that was unique and special because you just knew you would see her name in lights. But she will come to you perfect, in a way that you have never seen perfection. Her name will be known by many, but never for reasons you could imagine.
2. You will want to refresh on those chemistry and biology books you paid no attention to. In fact, you may want to do a whole refresher on school because you are headed down a road that you will need to know things you never thought you would ever need to know.
3. You will experience a heart break like you have never experienced. Your daughter will be the one who does this to you. It's OK. You will love her deeper for it.
4. You will get a letter from new found friends called Welcome to Holland. And you will love it. Reminds you how much you didn't enjoy your trip to Italy when you were 18 and also reminds you how much you want to visit your family in Holland.
5. You will cry like you never did before. You will hide those tears for a long time, but eventually you will learn that tears are not weakness. I would love to encourage you to embrace them sooner. The sooner you are able to express yourself to others the sooner the load you carry will get lighter.
6. Your habitual writing in your diary will become a lot more public. You learn that rawness is the only way you can share your journey and because of that you meet others, and even maybe help others while helping yourself.
7. You will loose all your faith in God and gain it back in a way you never knew him before.
8. You will have your heart broken again. And again.
9. You will always be OK though. Each time you will build up back stronger. Maybe a little tougher than before and maybe a little guarded, but it is your only way you know how to build back up.
10. You will be so proud of the little things you think your heart will burst and you will never take any skill your other kids do for granted.
11. Your wardrobe slowly starts to become less and less important. You find the faces you make causes a huge wrinkle in your forehead and your laugh causes your eyes to have crinkles. You never imagined this happening to you. You are too busy to do much about it and rely on nature to hold you up, but you will look in the mirror at times and wonder where she went.
12. You will end up a mother to 3.
13. You will end up being so busy you crave a moment to just sit on the couch and watch TV. Yes that goes away. That becomes a luxury.
14. You will be challenged by the strengths of your other daughter you never imagined being yours. She will bring light back into your dark world and also cause you frustrations you have never known.
15. You will try things you never imagined trying for your special girl. The one who broke your heart. You will try to cure her a million different ways all to no avail.
16. You will experience a son and all the rough and tumble things that come along with that. You will also experience a bond with him no one could shake.
17. You will become more simple.
18. You will become a woman of faith.
19. You will inspire others.
20. You will go through things in your marriage you won't think you will survive. But you will. And you will be better for it.
21. You will think you are constantly making mistakes in regards to your kids. Sometimes you are. Sometimes you aren't. You will do your best and feel pretty proud most of the time.
22. You will never think you are good enough, or smart enough. But you will continue to work on that.
23. You will make friends you can't imagine never knowing. You only meet them though because you have a common bond you never wanted to have.
24. You will start to like yourself. Your insides far more than your outside.
25. You will have many pets. Teaching death to your middle child will break your heart again.
26. You will laugh. A lot. You will learn that laughing is way better than crying and sometimes things you find funny may or may not be totally inappropriate.
27. You will be glad that the cute guy you met that the bar, that you married on a whim ended up being the best person you will ever know. He will make you laugh. He will get you through some really rough times. His positivism will be a little annoying at times, but you will appreciate him bringing something you can't.
28. You will get tired. To a point of complete exhaustion. But you always get up and do what needs to be done. I know how you like to be lazy, and you may eventually get to be that again, but it is good to know you can do what needs to be done when it needs to be done.
29. You will see more small caskets and attend way too many funerals and you will learn quickly you are in a world you never wanted to be in, and it can really suck.
30. You will know IEP's and EEG's, MRI's, and PetScans, you will know all about sleep studies, and EKG's, brain surgery and epilepsy. Medications and procedures. Diets and herbs. Minerals and oils. Dr's, specialists, therapists, and even chiropractors. You become an expert in things you never had the patience to even read about and learn that you have to be an advocate for someone you love because no one else will do it like you will.
31. You give your time to a disorder that changed your existence. You wonder who you would have been if this disorder never happened and you are scared of the answer.
32. I'm not saying you are self involved and worry about petty things... but well you are and you do. But the wonderful thing is you learn, you evolve and you grow!
33. Your modeling past will be that, your past. You will have no connection to that world within months of knowing your baby isn't like other babies. But you are definitely OK with that.
34. You are OK with everything, because you are strong. You survive so much because you have to.
35. The last thing I want to tell you is don't be afraid of that baby girl that will soon be in your arms. Yes she will break your heart. Yes she will take your life in a direction you never imagined, but don't be afraid of her. Hold her tight, sing her songs, dress her super cute and love her through each and every seizure she has, and there will be a lot, each day. She is going to rock your world and you need to always love her fiercely with all of you. You will be the best you can be because you get to be her mom.

It will be interesting to see what my 45 year old self needs to tell this 34 year old.


Friday, August 2, 2013

Wowzers! Splashing, Arizona, New Mexico, Colorado, ... oh my

July has been one action packed month! I mean seriously, action packed! It was like a movie with Matt Damon and lots of guns and fast cars.... Or it was like me running all over from hot humid AZ doing a billion different things all the way to Northern Colorado doing a bazillion things. Very similar. My life as a movie. Exciting. Fast cars! Big van! Small pruis. Awesomeness.
We had LilyAnna's Splash for a Cure on July 10th, which was AWESOME! We did very well! Was able to donate over $5,000! It was a great event! Lots of folks came out, our community center was perfect! Kids were in the pool, playing in the field, playground, lots of folks eating, bidding on silent auctions.. we had a fellow CDKL5 sister from San Diego make it! We had a mermaid.. seriously. We did! Thanks to Fairytale Events! It was awesome! Can't wait to do it again next year!

Then just a few days later the girls and I packed up the Prius and headed to Albuquerque, New Mexico to stay with one of my longest known childhood friends as we made a pit stop there before moving on to Colorado for Lily's clinic appointment in Aurora!
It was a good drive. The girls were so good! Lily had a huge seizure right at the start so she slept most the way. Andi Jane sang, played on the Ipad and just was Andi Jane. We stopped for dinner at Applebees's in a little town 2 hours away from Albuquerque and that took longer than necessary which ended putting us in the middle of a rain storm in the dark. No fun. I white knuckled it to my friends place and it was after 9pm when we made it. Andi got rather whiny on that last drive and then struggled falling asleep that night. She was a bit of a hot mess. My sweet friend had a great room for us, Lily slept on an air mattress on the floor next to the bed and we all finally got to sleep and woke up to a super soaked Lily and I was up and at em to get her all cleaned up. Poor girl. I got to do some laundry as well. House guests from hell right here!
My friend had to be at work early and I found out my mom was gonna meet up with us (yay!) in the ol ABQ so we had to wait for her. We had time to kill and a strange town to do it in. But thanks to the power that is facebook, I had a fellow August 02 board member in ABQ and we decided to meet up!
Very quick background, when I was pregnant with Lily I found myself all over the internet reading about my swollen feet, my cravings, my mucus plus and all that comes with that beautiful pregnant belly. In my searching I found IVillage and there I found an August 2002 expecting group. I introduced myself and that was it, friends. Then it became and August 2002 playgroup and now we all have almost 11 year olds and should call ourselves August 2002 preteens group, crazy. We still stay in touch online. I know it sounds crazy. But these ladies (and one guy) were who I cried to when not knowing what was wrong with my baby was too much to handle. I had to be strong on the outside for reasons I have no answer for and have long since thrown in the wind, but back then I kept a brave face and would cry in private to my group of friends behind my computer screen. I've actually met many of them. And will continue when I am in a town and someone says "let's meet up!" I will! We are all on facebook now and have faces much more than we ever did before. Oh you silly internet always upping things.
So yeah, my friend said let's meet and I said I have wanted to eat at Tim's Place since I saw it on the news one night so that was where we met. And we met Tim! He was so sweet! The best restaurant owner/greeter I have ever seen! After breakfast I realized my mom was still hours away so we then decided to hit up the museum! That was fun! Lots of dinosaurs and science stuff that seems to fascinate everyone from the 6 year old to the 34 year old. It really was a fun day! Then we got ice cream, on a rainy 60ish degree day, and finally met up with my mom.

Long story short we got to Colorado Springs about 9:30pm and got room service and hit the hay.
Our sleeping arrangements there were Grandma and Andi and Lily and me. I thought I wouldn't sleep with wild Lily, but I was wrong. She slept all night snuggled next to mama. It was such a treat! We slept til 9am! What?! We were at the beautiful Cheyenne Mountain Resort and had to enjoy the view at breakfast and let Andi swim before we had to hit the road again.



And then we were at our families home in Windsor late afternoon. So fun to get to see our niece and nephew and have the kids play together! What a blessing cousins are!

Again Lily and I snuggled up together that night and she slept beautifully. Soaked all their linens of course... again... house guests with the mostest! And then that AM mom, Lily and I were off to Aurora for our clinic appointment. We started the morning with an early lunch with other CDKL5 families and Rett families also there for clinic. It was awesome to get to meet so many wonderful families and beautiful kids! I was so happy to finally have my friends meet Lily too! Such pride I take in being her mom.




Back home Andi stayed back with her cousins to swim and play the day away and at the clinic mom, Lily and I sat in clinic for over 6 hours! Phew!!!!

It was a great experience! A lot of wonderful ideas, from seizure meds to change around to sleeping ideas to get her to sleep better... apart from sleeping with mom each night :) unfortunately they said spinal surgery is probably way more sooner than later, I thought we had a few more years but will see what our guy says. I am afraid he will agree. He spine isn't getting straighter on it's own. That part makes me want to vomit. Actually writing that made me throw up a little in my mouth. My baby girl. Ugh.
They said she is in the middle of puberty, from a 1-5 on the scale she is a 3. Awesome. Say that could be the reason for her seizures becoming so bad. And they are BAD! Every day she had at least 2 large ones. She had one in front of the neurologist who said that she had several seizures in one seizure. I was glad he saw it. Poor kid. Those things wipe her out too. Ruin her day. She sleeps for hours afterwards. :( I hate seizures. They suck.
Although the cardiologist didn't show I did get to see her so famous EKG that I fought so hard for. Cardio said it was fine. I saw that it said on it flattened t-waves. Again. I guess there is nothing that can be done, but it just sucks to have a heart that doesn't beat normal, especially when she has all her other things that go on as well. But it is just another Lily-unique thing. Like her bendiness. She impressed everyone with her bendy ankles and neck and arms, they said it isn't necessarily CDKL5-like but they don't think it is a condition in addition too, they think it is just another Lily-unique thing.
It was a good day. There was a lot to take in and a lot covered. A lot of tips that were all written down and a lot of talking and brain picking and snacking. It was a wonderful day that Rocky Mountain Rett Association helped to put on and it was really nice to be surrounded by kind families who get you. Oh another funny coincidence, one of the women with Rocky Mountain Rett that was making sure everyone was well taken care of looked very familiar.. long story short, I met her in Utah back in 2008 when Lily was at Shriners, pre dx, the mom looked at Lily and said I really think she has some type of rett. I said me too, but nothing yet has been conclusive. And kid you not weeks later we got the call. I was like oh my gosh, I met you in Utah! Oh the small world it is we live in.
After clinic mom, Lily and I got a beer and dinner at BJ Brewery. Lily stuck to root beer although I bet she could have used a beer as much as mom and I did.

That night Lily moaned all night long, hardly slept and then puked all over the bedding. Anyone want us over to stay?????? We spent the rest of the night on the couch with a bucket just in case, but never needed it. Not my favorite night. I have no clue what that was all about. Lily is not a puker. At all. Unless she is on keto, but she isn't. So no idea what that was all about.
Next day up and at em... played with cousins, drank coffee, munched on breakfast said our goodbyes and hopped in the car again to go to Castle Rock to have lunch with my dear friend and IFCR Board President and family while she was staying with her good friend. Let me just say lunch turned to dinner and dinner turned to breakfast. It was what I call a very good date :) Andi loved playing with Lily's CDKL5 friend, and the daughter of the sweet family that opened their home to us. It was such a wonderful experience. Lots of talking around the dinner table. What a wonderful way to decompress after such a long clinic day.
But our time there had to end as well. We still had to get back to Albuquerque to get my car and make it to Greer that night. And we did. It was about 8pm. Long day, but the girls again were real troopers. It was a good day of traveling. Slept in Greer, finally got to see Andrew and Oliver again and then went home on Saturday. Almost one full week away! It was good! It was long! It was exhausting being the sole carrier of Lily. And I mean that in the kindest way possible, but it is hard, she was measured at 4'10" and 70 lbs. It was a lot of lifting and changing, bathing, etc. A lot. But good. It was a time of bonding with my mom and daughters, it was a time with bonding with friends, making new friends, learning about this condition that changed our lives forever. It was a good trip. Memorable.


We got home Sat evening and the girls went back to school on Monday! We had a lot of shopping to do on Sunday, and laundry and all that fun stuff.

I still don't feel like we are all situated yet. I never really feel all that situated. I most of the time feel like I am surviving, not thriving, but I am at least conscious of it and working on getting back into the groove and loving this wonderful life I was blessed with.
Gotta get back to my schedule, back in shape, back in the word. I let a lot go this summer and it always makes me feel like I am running up a down escalator.
I'm working on it and know I will get this thing back in working order.
Thanks for taking the time to read the ramblings of this crazy mama.

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