Calm Amongst the Chaos

New Orleans was awesome! What a wonderful weekend! It was awesome to have some couple time, it was awesome to have a face to face meeting (for 4 hours 🙂 instead of a conference call) with the most amazing women I could ever possibly get to know and get to meet other CDKL5 moms and Rett moms that I have gotten to know and love via the internet. It was awesome relaxing in the big easy, drinking on Bourbon street and attending a tribute ceremony with amazingly awesome people. Get a room full of people who love and adore their child with Rett and CDKL5 and you find yourself at home. Friday Andrew and I ventured out a bit on our own with the thankful advice from my favorite Louisianan, Wendy, and ate.

Then we met up with other CDKL5 families and went to eat again! It was so much fun finally putting a face to a fb profile picture. We all got along so well it was like we were all meant to be friends. And getting to meet a few of our CDKL5 kids was so fun, the sweetest girls ever! And so inspiring to see some walk and even have words! CDKL5 can really vary and I enjoy seeing what other kids can do!

Saturday Andrew and I went to breakfast, again on the advice of Wendy, and had the best time. Then we walked, laughed, talked to strangers on the street, and went back to the hotel to lay out by the pool before I had to meet my ladies (board team) for a “little” meeting that went on for 4 hours.

And I would have been ok it going on for 8 hours. This is the best team of amazing woman! All with different talents to contribute, with hearts for our kids, working for one cause. Then Andrew and I broke off for again, yes food, and met everyone up for the tribute ceremony. I won 2 raffles and was so thrilled. I apparently won an ipad holder, but I thought I was winning an ipad. A little awkward, but not too bad 🙂 I did have a couple of drinks in me so I really shouldn’t have been trusted for much. At the end of the ceremony was a beautiful video of all the beautiful kids and of course it made me cry. THEN… we hit bourbon street. And I will let us all remain nameless and eventless because as much as they say what happens in Vegas, stays in Vegas…. it really should more so apply to New Orleans 😉

Sunday I woke up at 8am. And at 9am. And at 10am. And Andrew finally said you have to get up at around 11am. I did have a busy day. Oops.
Our conference started at 1pm and we got to hear from some wonderful speakers. We learned more about CDKL5 from the man who found CDKL5, John Christodoulou, all the way from Australia. Kind of surreal to ask him personally questions about our Lily and her faulty gene that really messed everything up.
We heard from the wonderful Dr. David Frame, our President of IFCR’s researcher hubby, he talked about research, where we are, where we need to be and goals for the future. We could have not got any luckier having Katheryn and David as our team leaders to finding a cure! Katheryn spoke beautifully about IFCR and we had therapists speak specifically on working with our kids. It is so eye opening to watch kids like Lily be able to communicate once they find the right device to do so. I have said this again and again, Lily has so much to say, we have to help her get it out!
My friend and fellow board member Kelly and I spoke on fundraising and media. I didn’t say much, showed a video I made of past fundraisers and hopefully inspired others to join forces and do what we can do!
Afterwards we all went out to eat and just talked and talked and talked. I met the sweetest little girl named Carly that reminded me so much of Lily at that age when I held her I didn’t want to put her down! Her parents I had just met, but we talked like old friends. Every moment was cherished. I love all my CDKL5 families and their kids and I just wish we could all live in a little neighborhood where we all can just be around each other all the time. But since that can’t happen I am glad to be able to meet up any chance we get! I love the energy everyone has to make a difference, to raise funds for research and to get the name of CDKL5 out there! Our goal right now is to get a big name to back us! Any tips from you out in cyberland we’d love to hear them!

Monday several of us got breakfast at Cafe Du Monde and we laughed when the menu was how many beignets you wanted. “What no eggs” asked Kristen? It was quite comical. But those were some darn good beignets, closest thing to them at home is a funnel cake from the fair. I loved that one last chat at breakfast with our friend and then it was all over. Time to head home. We had a great time, but I really wanted to see our kids!
Then we took a long trek home. A delay after another delay, after another had me antsy, I just wanted to see my babies but by the time we got home they were all sleeping so Tues morning was when I got all my hugs and kisses in.
So glad we went. So glad it was in New Orleans. So glad Andrew joined me. So glad that we were given this opportunity to have our meeting and if it weren’t IRSF giving us this opportunity it probably wouldn’t have happened. We are living a blessed life! It may not be the easiest life, but it sure is blessed. Thank you Jesus!

I am overwhelmed. Like to the top and over. I have a million things to do and about 14 hours to do them in. I have to be a couple different places at the same time and I know it will all work out in the end, but the feeling of anxiety I have has a tendency to overtake me, leaving me feeling like I am on the edge of a panic attack. I have never had a panic attack but the fact that I am panicking I will have a panic attack is probably not a good thing.
I hate leaving the kids. I hate having others do my job. It makes me stress out.
Yes my friends I am the epitome of super fun right now.
I had such a great night out last night with a friend and I do know how to shut it off, but then I get back home and go bizerk again.
This morning we were so late getting everyone where they need to be in order for me to get some stuff finished up at the office and it was down to just Andi Jane and I in the car.
We pass a nice nursing home and she says:
Andi Jane: “That is a pretty house”
Me: “Yeah, that is a nursing home”
Andi Jane: “What’s that?”
Me: “Sometimes old people can’t take care of themselves anymore and they have to live where others can care for them”
Andi Jane: “Elderly”
Me: “Hu?”
Andi Jane: “The word is elderly, don’t you think they would rather you call them elderly than old?”

Sigh…. How am I ever gonna be a good enough of a teacher for this amazing kid? I should just hand the reigns over to her.

All this stress calls for a hurricane in the french quarters, ready or not New Orleans we are on our way!

So many times I see a teenage boy and I think I sure hope my Oliver turns out like him. I am never talking about the star of the baseball field or the winning quarterback. I am always referring to the young man who holds the door for others, a kid who has the sense to use their manners and knows where the proper place to tell a fart joke is. When I am in my healthy moods (they come and go) and go jogging in the morning I end up passing lots of high school kids and I love the girls that look up at me and smile or say hello. I think I sure hope my Andi Jane will walk with the confidence to say hello to a stranger. There are so many amazing young people right now I see living big. I have some incredible nieces and a nephew whom I watch grow up and always say if my kids end up like my sisters, I am doing alright. But I also watched my sister keep them in line and my Lord it is a lot of work! I go to a church where there are rows and rows of High School kids who actually enjoy their church. Who go on missions and help build homes and make a difference in other people’s lives and I say “God please help me raise kids with hearts to serve, to love, to share.” I know raising kids is hard. So so hard. I know that things we do with them as very young children can and most likely will shape who they grow up into being. I know every stage of parenting is difficult but I mostly am afraid of the teen years. I get into battles with Andi Jane now that seem relentless and she is 7. I can only imagine the fights we will get into when she is 14 and loaded with ammo of hormones. I know newborns are rough. I know toddlers are tough. I know preschoolers can be down right frustrating and I am now learning that school age kids are pretty awesome, not without struggles of course, but I think this has got to be some of the most enjoyable years just to gear us up for the preteen and teen years. Parenting is hard. At any age, it is tough. But our kids have to know and these are the words from a friend of ours “I won’t give up on you!” not matter what, we won’t give up. We will stick it through it all because you are worth it.
Because when you eff it up and sorry that is the only way I can describe it, when you eff it up you can really create a monster. And it is so devastatingly sad to see what becomes of a bad childhood. And you don’t need to know what happens to a kid to make them so rotten, but you know it wasn’t good. And my heart wants to help these people, pray for these people, change these people but if they change or not, often it is something we don’t see, so we get discouraged and sad and heartbroken.
Not to long ago some kid, 10 feet tall and bulletproof under the protection of the nameless internet, posted a comment on a video of Lily on YouTube that as the most horrifying, disgusting, heart breaking thing a mother should never have to read about their own child. NEVER. I saw it and deleted it the second I saw it. I wish I hadn’t because after it sunk in and I told Andrew about it I tried to report the person but it was too late since the comment was deleted there is no way to contact YouTube about it. As a matter of fact there is no way to contact YouTube at all and so this person was able to make their comment, ruin my day and break my heart and with no repercussions and think they were pretty cool. Not that reporting anything would make any difference anyway, I am sure people say disgusting things all day, every day. Andrew called the Canadian Authorities (the posters info said they were from Canada) and reported it, but there is obviously nothing they could do. The cop did tell me that it was disgusting what they wrote but unfortunately there is “no law against being a douchbag”. I had to laugh at that and when Andrew wasn’t in ear shot, I said I know there is nothing you can do, but my husband was very upset and needed to do something and the cop said he totally understood and would have done the same thing. I love how protective men are over their families. Nothing sexier.
I wrote to this person on their page. I told them I was sorry for whatever happened in their past to make them who they are today. I told them I would pray for them and I told them to find a job and not a trench coat. I took the high road, I guess the medium road. I should have just simply ignored them. But my heart hurt. My stomach ached. I am not kidding when I say what they said was horrifying. Their comment was of wanting to cause brutal physical harm to my beautiful Lily. My mom wanted to know what they said, I told her no she didn’t, she said yes she did so I handed her my iphone with the email from YouTube stating so and so (douchbag in Canada) left you a comment. My mom read it and tears instantly sprang to her eyes. She could not believe what they wrote. She could not believe people are out there that would say something like that in reference to a little girl trying to walk with her physical therapist. But I know this person, this anonymous person, this 19 year old from Canada must have had a life I could never imagine giving them this kind of perspective on life. This person was most likely once a child who wasn’t loved like they should have been. Wasn’t told they were awesome and they will change the world. They weren’t told they were loved. They mustn’t have been hugged. And that makes me sad. And it makes me most sad because if they can treat strangers the way they do, how will the life cycle continue for them? I pray for this person. I pray that their heart can turn. They can and they will change their own future. I will never know what happens in this person’s life. I will never know if their heart softens, but I like to think it will. I like to think they will feel shame and remorse for the things they say and make a change in their life for the better. I can make my own ending to this story because the reality will probably never surface. But in my ending they change. They heal, they love, and they change their future.
Please love your kids. Hug your kids. Yes they spill things, they sharpie things, they loose your favorite things, they break things, but they need you. They need you to correct them, but love them. They need you to show them the way with a tender touch. They need to see a walking talking example of who you need to be. We can’t make them who we want them to be, but we sure can give them the tools to make the right choices and not go online and say really shitty things that breaks the hearts of a strangers.
That’s it. That is all I will ever say again about this. That person took up too much of our energy and took up too much of my feelings. They accomplished their goal. So I am done with it. I said my prayers and I am at peace.

I remember the first day I met Andrew’s Grandma Gloria, she was tall and oh so slender and had the best stereotypical grandma voice I had ever heard. She gave me a big hug and that was it, I was welcomed to the family. I remember visiting her and sitting at her dining room table. I remember bringing Lily there to visit for the first time, sitting at that dining room table. I remember her and her husband Ray coming to visit us August 2003 for Lily’s 1st birthday. We brought them to Greer. She always sent cards and $2 bills to the kids. She always gave Andrew big silver coins. I remember whenever we visited we were sure to leave with a gift from her closet.

Andrew tells me stories of her when he was younger. She gave us a book for our wedding with poems she wrote for Andrew when he was a young boy. She had a lot of grandkids, but she sure made them all feel special. I know we didn’t get to see her often as the time went by, but every visit was a special one we had with her. She was so healthy and happy when we visited in July of 2010 before she got in a bad car accident. But she pulled through that and what an inspiring woman she was. Her love for our Lord was so evident in every word she spoke. In her entire book of poems she had written, all to glorify our Lord.

I was so glad Andrew was able to go back in January to see her and then when he heard it wouldn’t be long I am glad he made it back to see her, talk to her before her time came to an end. What a special moment that must have been for Andrew’s whole family to be there as she took her last breath. And I just know the kind of welcome she had to have gotten at those pearly gates! I know she is leading the choir up there and just talking with Jesus. She lived such an amazing testimony here and earth and left a tremendous legacy of love for her family to carry on.

Grandma Gloria passed away on Friday May 25th and Andi Jane and I flew out to meet up with Andrew on Monday the 28th for a Tuesday funeral.

It broke my heart to leave Lily and Oliver back at home, but it would have cost another $1000 to get them back with us and we just couldn’t swing it. Thank God my niece Ariel rose to the challenge and took care of them for 2 days. But man did it knot my tummy up not being with all my kids.

We were able to stay with Andrew’s brother and family and it was so fun to watch Andi Jane play with her cousins whom she is smack in the middle in regards to age. Not height though, of course. My giant 7 year old. Andi also loved her two younger cousins whom she can carry around and pretend to “mommy”.

It was so nice seeing all of Andrew’s family who we just don’t get to see often enough. All his cousins’ kids are our kids’ ages and all just so cute. I’m not kidding, that is one good looking family! The weather was perfect, the service was beautiful. It ended with a song Grandma Gloria sang that Andrew’s cousin got on tape. It was such an amazing experience to sit at a person’s funeral and hear their voice, the one thing you long for after they are gone. It was perfect.

I have to say my favorite part of the fast whirlwind trip was on the quiet drive home from the service was when the song Springsteen by Eric Church came on and the three kids just started singing, they knew every word. The windows were down and I just have a feeling every time I hear that song I will smile at that memory. Pretty ironic a song about a song being a memory is now a great memory of mine. Life can be pretty cool sometimes.

Grandma Gloria, you were a great mom to your 5 kids and an amazing grandma to your grandkids and great grandkids and I am so glad I married into your family. Thank you for accepting me and loving me right off the bat and for your love to our kids. Until we meet again you will be missed.

To say it’s been slow and easy living here in Chandler AZ, I’d be lying. I wonder if I will ever get to say that about our lives. I used to say “I’m board” as a kid, all.the.time. I would call my mom at work in the summer just to tell her that and without fail the words I heard back was “well you must be a boring person.” Au contrair mama, I haven’t uttered that word in probably 9 years and 10 months and I actually look forward to the day I can say it again. And I hope to call my mom and say that to her and when she tells me I am boring I will say Amen!
But since those words I won’t be able to mutter for at least another 15 years, I think I’ll just go with what we got. Non boring lives.
I have had so many cute stories I wanted to share. I wanted to share an update on Lily. I have wanted to do a lot but I hate to blog on the ipad and my laptop is on it’s way out and lately at work, well I have to work. Why is adulthood so annoying?
I am going to do a long wrap up and try to keep it as entertaining as possible, since I feel I am loosing my edge, I may have to throw in some quotes from 50 Shades to see if you’re listening. Sex sales.
Most importantly is the Lily update. She is ok. Yes I said ok. She is happy when she isn’t seizing. So that is good, but the seizures can be as many as up to 10 a day. And 3 of them being the long tonics that knock her out and ruin her day. So that sucks. She is now on summer break and we decided after two summers at home to put her in a summer camp. I hope it is the right decision. Andrew took her this morning and she was so excited to go! But then had a seizure in the parking lot right before drop off 😦
They are going to go swimming today and she loves swimming so it is my hope she gets to sleep off the seizure and then gets to enjoy her swim. She has upcoming neuro and eye doctor this summer. Her van got pimped out after it hit the skids and daddy put the fear of God in the kids to keep it clean this summer. It’ll prob make it thru June that way. I think that is a good catch up on Lily. Her disposition is happy. She is enjoying the Ipad more and more and since she got a new wonderful Speech therapist she is getting a communications eval and we hope she will get a new Ipad that no one else touches and we get it mounted on her chair and she can use it all the time. And except for the dang out of control seizures, she is good. She is still on 4 meds and we haven’t been able to do any weaning like we had planned. That just made a whole lot of problems. So still on 4 meds and she is still uncontrollable seizing each day. Cheers CDKL5. Suck it.
Andi Jane. Andi has completed 1st grade. She got the caring award from her teacher and I can’t imagine any other award being more fitting. Love that girl and her heart. This week her and Oliver are at VBS. So crazy Oliver can now go to VBS at church. (Vacation Bible School for you heathens).
Oliver’s Speech therapy came to an end until the next school year. It is going well, he is so darn cute. He has to take his backpack with him each session for 30 min of speech. Cute kid. Sorry is that one of those it’s only cute if it’s my kid type of thing?
June 22nd Andrew and I are off to New Orleans! We are going to the National Rett Syndrome Conference (same one I attended 2 years ago in Colorado Springs)! I am so excited! On Sunday we are having our own CDKL5 conference within the Rett Conference! I have to do a little speaking thing with another board memeber and that makes me a bit nervous, but I cannot wait to meet other families. There is just nothing else like being around those who truly walk in your shoes. Plus this will be a nice little vaca for Andrew and me. We’ve never been to New Orleans and I imagine I may get a few beads after a few hurricane’s if the night goes my way.
I kid. I kid.
(maybe)
I’ve changed my mind on continuing this post. Gonna break it up. Andrew’s wonderful Grandma Gloria passed away and just Andrew, Andi and I got to make it back her her service and I’d like to go into detail about something that recently happened on my youtube channel. These are things I cannot share lightly and refuse to throw in a silly post. So I will end this update and will work on the other two sometime before Christmas.