Thursday, July 26, 2012

Acceptance.... Again

So I feel like we are on this roller coaster. One day we are upset and trying to see what we can do to change the outcome. Then we find that place of peaceful acceptance. Then there is upset and we are again in turmoil. I think it is and always is surrounded by Lily's seizures. They are what sets us in these highs and lows and again we have to say, and something I say very easily with the other two kids, knock it off.
Last night after Lily's, yet again, late afternoon nasty hard seizure, Andrew and I had a talk.
We take a med away, she has it. We give her a new med, she has it. That late afternoon seizure happens regardless what we do. So I said "what harm is this causing her?" and I mean it in the long run of her life. She has the seizure she doesn't cry before or after then she falls asleep. Is she more hurt by it or are we? Andrew just looks at me and says so what are you saying? I am thinking to love Lily is to hate seizures. It seems to be no way around this equation. What if we love Lily and be indifferent to the seizures? Maybe if we put less of an importance on them, maybe we can just love Lily as she is. I am not saying we'd love her more without the seizures I think we just have always felt it would make everyone happier for her to not have them. But maybe that isn't a possibility. Neuro wants us to do brain surgery. But is that late afternoon seizure bad enough to cut her brain open? Is it bad enough to risk, even to the slightest degree, risk her life? No. It isn't. Seizures suck. I pray one day they cure CDKL5 and learn to wipe out epilepsy. But as of right now Lily has seizures. She has them everyday. We have fought them tooth and nail and they still win, but we can't let them ruin us. So here we go again. Another round of Acceptance. Lily is safe, she is comfortable and we make sure those seizures never hurt her. So we will once again welcome that peace that comes from that beautiful three syllable word ACCEPTANCE.

Wednesday, July 18, 2012

Living with CDKL5

I am so excited to share "Living with CDKL5" from the AdaptiveMall site!
Click here for Lily's story
A few months back I saw the whole "living with" series on the site and emailed them to ask how we can take part and they sent me a questionnaire and asked for some pictures and I was thrilled to oblige!
I love how it turned out and am so grateful they included so many photos and even our CDKL5 and Me video I made 2 years ago.
So happy to be able to share our precious girl with the world and bring more attention to CDKL5!
Hope you all enjoy it as much as we do!

Tuesday, July 10, 2012

How we roll

Me: My period is starting soon
Andrew: Doesn't she know by now we don't like her?
Me: At this point babe we like her much better here than not here
Andrew: True

Monday, July 9, 2012

Which mama we talking about?

Andi Jane was in Greer with Grandma and Grandpa for almost 2 weeks and I didn't like it. We missed her so much and totally realized how helpful she is with the other kids. Sunday morning I was very hesitant in sending Lily into her Sunday School class because Andi Jane wasn't there with her (unfortunately I was rightfully so in my hesitation as she did have a seizure in class). Andi should be in the 2nd grade class, but instead she is in the 5th grade class acting as Lily's aide. And she is the best aide Lily could get. I am sure I will be the cause of much money spent in therapy for Andi Jane one day, but we do what we do as a family, right? We try, we make things work and then look back and see how all wrong we were. It's the cycle of life.  
Even Oliver, my funny, sweet little Oliver has been exhausting! I didn't even know this until Andi Jane left for the week. He talks to me all day long. All day. Every minute. And he is very hard to understand so he will ask me a question I will hesitate as my brain tries to catch up with what he is saying then he says, "Hu Mom? Say Yes" so I do. I say yes and the next thing I am doing is running around the house on a broom because don't you know he and I are witches? I said yes that we were. It never stops. I love that he wants to play with me, as second fiddle of course to "his Adi" but a mama does need to do other things than playing bad guy, spider man, ming ming, and a witch all within 3 minutes of each other. So funny all these things I would probably murder to have Lily do and I find myself totally hypocritical on this by being bothered with Oliver and his insistence on being up in my business all the time. I am a hypocrite. I know it. And by murder I don't really mean I'd murder someone for Lily to pick up a skill, that is silly. It's an expression. Actually a dumb one at that. But I would do pretty much anything to get Lily to talk all day long. But there isn't anything I can do legal or illegal so the whole thing is moot. Something we all say when we want something we can't have. And don't get me wrong I love playing with Oliver, he makes me smile like no other, I just now realize Andi handles a lot of that energy he produces. Granted they do fight and again my eyes are open to why Andi gets so frustrated. She is dealing with a 3 year old. Enough said.
And maybe my patience are cut short because Lily's seizures are just outrageous right now. And she was doing well. I even told her neuro she was doing great. But she is not. And to be quite frank, it really pisses me off. I seriously get angry inside because of it and as someone who has spent some time getting counseling, I know anger is a secondary emotion and I know in this case it is secondary to my great sadness I have over the fact Lily can't go a day with out a seizure. Heck she can't go 6 hours without a seizure. And she is almost 10. Almost 10 years with this beast. This stupid beast that we think we finally find a way to slay, at least handicap yet we never do. 
Saturday night we took Lily and Oliver to a Diamondbacks game. We do everything to make sure our seats are handicap accessible, we find elevators, we park in handicap parking. Everything we do is around the wheelchair and we don't complain. Ok if I see no van handicap spots open and see a little sports car in the only place my van is able to load and unload Lily, yes I complain, but for the most part we don't complain. It is our lot in life. It is Lily's lot. She is in a wheelchair and we do what we can to adapt our life to that fact.

Here is where I complain, we were in our seats, having food, I was feeding Lily her dinner and meds when mid bite she goes into an awful seizure. A big seizure, one that made me think she will choke her food and I was mad. Almost mad enough to leave. Lost my own world with Lily I hear Oliver singing "This is serious", you have to watch The Wonder Pets to get the tune but one part of me wanted to scream THIS IS SERIOUS! This sucks! Our life sucks because we can't do one single fun thing without these stupid idiotic seizures ruining everything. You know in 40 year old virgin when he gets his chest waxed and he screams everything he can possibly say? Well that is how I feel. I want to scream every expletive imaginable because for some reason I think it will make me feel better. This is my rant that is running in my brain. The life isn't fair tantrum. BUT instead of letting her take the show I shut her down and look at my son and sing back to him "this is serious" and I kiss his sweet buzzed blond head and swoop him up on my lap and snuggle him because he doesn't know yet that life isn't fair and I am not going to be the one who tells him that. He has plenty of life left to see me mad, I can't let my anger at seizures get redirected to him. 

And right there at that moment I realized man I sure can compartmentalize. 

Lily slept and the rest of the game was cool. I did my best to enjoy our family time but all the while that selfish me stood there with her arms crossed and totally pissed.   It hurts. It hurts with this intense burn that burns in my gut. I'd say in my heart but it really lies in my gut. It also hangs out in my throat and makes it hard to talk. It fills my entire body yet I shut it down. My great sadness I shut out. Yet with Andi gone it was just so much more prevalent. And I guess if I had to put into words why, I'd have to say and I hate this, but I think we pour everything into Andi. I think we put all our hope for 2 daughters on one poor girl. I try not to project on her, but I think I must. How else can I explain how hard it was when she was gone. Yes she is my daughter, yes I missed her, but my anxiety over Lily was heightened in her absence. That isn't fair. It's like I share my burden of Lily with Andi. I never knew that and I hate that, but there must be truth in that for me to have felt it so much in her absence.
I had let myself get into a bad place again obsessing over things I can't change and want to change. In New Orleans I saw videos of kids communicating and I think if we can stop the seizures Lily could do so much more. I obsess on the thought of if we can do this, than this. I wear myself out because what I want is not becoming a reality and then I find myself in the words of a 'real housewife", Angry Spice. 
Did I let myself get into a bad place mentally again because my prayers weren't answered how I saw fit? Maybe. Was I upset because my 7 year old daughter whom I place way too much responsibly on was out of town and I didn't have her around? Possibly? Am I just cycling all my sadness again like some kind of clock? Possibly, it is almost Lily's 10th birthday and lately I have been running into a lot of 10 year old little girls that crush me a bit every time I hear them tell me their age. I do so well for so long and then that selfish arms crossed, pissed at the world girl starts taking more and more space up in me and I am realizing it is because I am letting her. I am loosing my focus.
Lily is having more seizures, Lily is also entering a new physical stage and it is possible her hormones are out of whack. We are seeing an endro for her and who knows, maybe they will have some suggestions. Andi is back home and I am going to do my best to lighten her load some. I had no idea how heavy it was for her. It is probably why she wanted to stay in Greer forever, I don't blame her! I need my focus to go back to a safer place, a quieter place, a place I am loved as I am. I am not expected to be everything. The one place I can lie at his feet and be completely vulnerable. I have strayed from that place trying to be all to everyone and by doing that I weakened myself. I need to go back where I was last year and find solitude again. 
I can't let outside circumstances ruin who I am. Lily has seizures. Has practically since birth. I can't change that. I can't mess with a petri dish and change her future. Of course I can still hope and pray and do everything I can to change the future of CDKL5, that is in my blood, that is what I am supposed to do. But what I can't do is hold all my self worth in her and her seizures. They have become the idol in my life I am worshiping. The very thing I despise is what I am worshiping. And that I can't continue to do that. I will continue to compartmentalize. I will always hold my sadness, my anger, my happiness all in the same body, but I have to let that hopeful girl shine through them all. Give her far more precedence than all those other mood suckers. I am working on changing my attitude and my heart because as we all know we often can't change our circumstances, but we can change our attitudes. 
It's not easy and I do think at times I am working with a half full heart, but aren't we all? I have to love with that heart no matter if there are cracks in it, it has to be used, all of it. My kids need to know how special they are each in their own way. Lily and her smiles and princess attitude. Andi and her heart full of compassion and Oliver his humor that is spoken in his own language. They are all perfect. And just because life didn't hand them to me in the package I had planned and expected doesn't make them any less lovable. I thank God every day for all three and especially that 4th of July vacation we brought home with us because if it weren't for Andi Jane, totally unexpected, I don't think I would have known the brightness parenting can bring. I pray I can love them seizures, attitudes, non stop mouths and all. All of them. They will have all of me. Even if it's not enough. Thanks Matt Hammitt for writing the best song ever when talking about loving our children. They are worth every fallen tear. Worth facing any fear. They will have all of me. And the good me.

Sunday, July 1, 2012

New Orleans!

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.
(Acme Oyster Bar)
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!

(I'm fairly certain Andrew would have brought her home with us if he could have)

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.

(we loved the bright colors we saw everywhere)

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 ;)

(....I don't know)

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!

(Karen and Samantha)

(Kristin, Patti, Susan and Melissa)

(Amy and Carly)
(During this dinner we saw a parade of elephants walking the street. We don't know why, but it was quite the show/dinner stopper)

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!
(Awesome new shirts!)

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