Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Not only is my good friend Liz beautiful, she is an incredible photographer! She took Oli’s 2 year pictures. He rarely even looked towards the camera let alone smile at it, but I think they turned out pretty incredible and since I insisted in jumping in a few, I feel blessed to have these cherished pictures to last a lifetime. I am hoping to do the same with both the girls this year for their birthdays. As us moms know rarely do we ever get in pictures with our kids, why? Because we are always the one behind the camera, knowing what moments we want to treasure. It was so nice to be in front of the camera with my little man.







Back in September I wanted to escape what the big bad wolf did. I didn’t want a staring role in our family anymore; I was willing to settle for character actor. I just needed out without really checking out. So I took a job at a bar/grill as a server. I hadn’t waited a table in almost 10 years. We did need the money, but most of all I needed something to distract me from what my life had turned into. And every weekend that is where I went. And in the beginning I really enjoyed it. The money really is great, and it was fun to feel “young”. When the place was swamped it was nice to have the only thoughts of who’s drinking what beer. But then my toe nail fell off. I dreaded leaving my family. I started finding reasons why I couldn’t work certain days and I started to want to be back home. Yes seriously my big toe fell off after turning black from 3 days of 8 hour shifts in too tight of shoes. My hands also look awful. After a long shift my feet will cramp when I stretch out while sleeping. I will say “no no no..” and jump out of bed to get the cramp to go away. Friday night I didn’t get home until 1:30am and had to be up with all the kids and have them to church by 8am for Andi’s basketball game. I just knew I was done. My boss who is a single owner of the place with her hubby is awesome. She was amazing to work for! So understanding and was totally understanding when I said I couldn’t do it anymore. They are letting me stay on as a back up which will be nice so I can come in from time to time. I enjoyed all my co workers and the regulars. It really is a cool place to work for and go to so part of me is sad to stop working, but other parts of me are excited to be able to pick up and go up north again with out needing weeks advance notice to take off. I’m excited to be able to put my kids to bed. Just to hang out at night again. Things I have been really missing. So this Sunday, super bowl Sunday will be my last day. I am ready for it to be over. I’m feeling so tired. So old.

My parents were so awesome to take the kids all day Saturday so Andrew and I could do some running around and I could take a nap! Oh how amazing it was! Then we went to my good friend’s 29th birthday party (no really it really was her 29th, her first one) she made homemade sushi and martinis… she rocks! So we had a date day and night! Then Sunday I went to see a play called RESPECT with my mom, sister, aunt, cousins, etc, and it was awesome! Oh my goodness, ladies you have to see this! It was so much fun! After that I came home and we took the kids for a walk down to the neighborhood basketball court and we all played til the sun started to set. Andrew and I even ran 2 suicides, voluntarily! Man I was sore the next day, but I think we need to do that more often.

So the weekend started out a rough, long exhausting night, the place was slammed! But it ended up being pretty much one the best weekends I have had in a long time!

I called University of Chicago’s genetic lab department because I wanted to know why Lily’s diagnosis was so plain. A deletion involving exon 1 on her CDKL5 gene. Most other CDKL5 families have a far more intricate diagnosis and I was jealous. OK probably wrong word choice, but I did want to know more than I thought I was being told. Lily’s pediatrician (whom I called first) said he had no more information than I did and maybe try calling them. Knowing I would they gave me the number. I left a message and just a few hours later the director if clinical services and education called me! I was so impressed and stumbling for the proper words to use. “Yes ahem, I was only curious to know if you could perhaps be so kind….” yeah right, I said ok all these other families I know have these crazy diagnosis with letters and numbers and periods Lily doesn’t, what’s up with that?

She explains to me most children with a CDKL5 infliction have a mutation. She described to me that if each gene was like a book there are chapters and pages. When a child has a mutation it is like they are missing a chapter or pages and those can be pinpointed very specifically, but when a child has a deletion on that book it is missing an entire chapter and with Lily’s deletion on exon 1 it kinda means there is no Once Upon a Time. Meaning the book never even starts. This made me sad. She was incredibly kind and informative, she was not being hurtful she was just simply explaining to me an almost impossible subject (genetics) in very plain terms. I was very grateful for her explanation. But I had to follow up with “is this why Lily seems to be more severe than a lot of the other kids” and she simply stated “yes”.
That kinda sucked.

Yes that is my title and I mean it. Suck it seizures.
Last Tues we went gluten free with Lily, not for seizures sake but for overall health and hoping for a little more awareness/alertness (and possibly help with tummy troubles). It is going well, it just costs a few more dollars and she pretty much eats all the same things. But I have been noticing an increase in seizures and then they just went haywire. I am not correlating the seizures with the gluten free, I am just sharing our timeline in what is going on in Lily’s world. Anyway they were really increasing, then we went up to Greer for the weekend and they started hitting her hard. Big ones, tonic clonics on top of the myoclonic clusters and atonic drops. I figured it was the elevation and just had her relax all weekend, like we all did. But then on the ride home they were every hour and then they continued at home. She does have a cold, but never a fever. I called neuro Monday and he upped her Sabril even more which she takes in addition to her other 2 meds (sigh) and now we wait until Feb 9th for her appointment with him. I admit she is doing better, but it is usually a temporary fix when this happens. Unfortunately there aren’t a whole lot of choices. We could explore putting a VNS on her other side since her previous one kicked the bucket and ruined her right side or re-visit keto. I hated her on keto, but I hate seizures more so I’m feeling a bit torn as to what to do. I have been able to worry less about her and her overall health and it has been nice, but when her seizures get like this it makes me worry. Worry about her at bedtime mostly. We have a camera on her all night, but still.
And to add to the mommy worry, we are having struggles with Andi Jane. We all know she is a high energy child and it has always been a concern in the back of my mind that it is more than typical hyperness. Lately she has been coming home with bad notes and her report card was poor in behavior areas, frankly I am concerned. I emailed her teacher and she requested that we meet to discuss her further. We meet tomorrow afternoon. I will update with what we decide. I think she just needs to do things that are a little different than for the average child. She is far from average and may need to be taught a little different.
Gotta love kids and worrying about them. At least I have very little worries with Oli at the time being. He is going for his 2 year photo shoot with my amazing talented friend Liz and I just can’t wait. I also can’t bring myself to cutting his precious blond locks so I just know when he is 18 he will say “mom why didn’t you cut my hair” and I will say “because I wasn’t worried about it”
Oh he is my little love. They all are so special, he is just my baby and has yet to worry me, much, so don’t judge.
Keep us in your prayers, Lily with her seizures and our meeting with Andi’s teacher. I just love Andi Jane’s spirit and style and I want to make school a pleasure and not so difficult, I mean at least not in freaking kindergarten!

Each month after finding out the Pepsi Refresh Challenge results these kids looked like this:

But guess what!!!!! SOMEONE didn’t play fair and was disqualified from the Pepsi Refresh Challenge AND guess who moved up into the top 10 for the month of October? Yup! That is right! Us!

IFCR will now receive $50k to go straight towards CDKL5 research!
Thank you to all of you who voted! We knew we had to be winners and it turns out, we were!!!
So Yay! Roll those happy faces now…



When we said goodbye to 2009 we said 2010 couldn’t possibly be worse than its predecessor, we were hit hard financially considering our income solely survives on construction. Mostly new home construction at that, and we all know the crash we had. We knew times were still tough, but things had to get better, right? They had to.
But nothing else made 2009 so awful; looking back now it was purely superficial that we were so distraught. Oliver was born in 2009, wasn’t that enough reason to celebrate a year? The year of the birth of our only son, our last baby, how dare we take that so lightly? How dare we complain about what we no longer have when we know we still had so much more than many? But isn’t that life, always putting things into perspective for us.
2010 started out just like every other year, filled with hope. Filled with thoughts for the future! Wonder what that year will hold with an anticipation that we keep filled with hope. Maybe this will be the year we find seizure control for Lily. An amazing contract that makes us lots of money. A new car! A winning lottery ticket! But then the year went on and it was just like 2009, well in fact financially speaking, a lot worse. Ouch. Its ok we’ll figure it out we say as we stress each month to make the mortgage payment, and all the other bills we managed to rack up in the years.
Then when I wasn’t even looking the big bad wolf comes and blows our home, and he blows it hard. The whole house shakes and everything falls, breaks and is in shambles. I am left sitting in a room that used to be my living room and nothing is where it was. It was a disaster. A complete and utter disaster. So what did I do? I start putting things back where they belonged. I cried and wiped my tears while I quickly put everything back where it was so it looks like there never was any disruption. How can I ever admit our home was so weak that the big bad wolf was able to blow it and ruin everything? So I cleaned, I swept, I got it almost back to where it was and then as if to say he was not through with us he comes back and blows our home again, but this time much harder and I can hear him say “Ha! Fix this!” and everything I put away was once again all over the place but this time this blow by him was worse, more damage, many more repairs were needed. And this time I don’t get up, I give up. I sat in my living room surrounded by another huge disaster, not knowing what to do. So I do nothing. I sit. I cry. I sit. I cry. My head is in my hands and I quit. I can’t get up. I can’t put things back. Things are broken. Things are ruined. Some things I cared dearly for were broken beyond repair. The mess I was once willing to clean up, was finally too big for my hands because my hands were tired. My only thought was there is nothing left for me to do but leave. Let someone else deal with this mess. I am too tired to fix this. I am too tired to care. I tried so hard to clean this up, but now I simply cannot. I am done.
So there I sat amongst all my stuff, misplaced, broken, some of no use. And from the corner of my eye I see a light, a man, long hair, lots of facial hair, a kind smile. He takes a book he sees on the floor and picks it up and places it on a shelf that wasn’t for books. Then he takes another book and places it next to the other. I mumble to him, that is not where the books go, but he smiles and places another on the shelf. Then he hands me a book, but I look away. He keeps putting books on the shelf.
Then my husband walks into the room, sees me, sees the mess and starts to sob. He falls to his knees; he is overwhelmed with grief and is paralyzed with fear. He tries to hold me, but I push him away. He tries to talk to me, but I turn so I cannot hear him. This is his fault; he didn’t build a strong enough home. I hate him. I hate everyone. I hate everything. I even hate that kind man over there putting those books in the wrong place. Hate consumes me.
Then my husband sees the man and the man hands him a book, my husband looks at the book, at the shelf he is placing them on and at first looks confused, then looks at the man, smiles and walks over to that shelf and places the book on it. Then the two work together. I still sit immobile. The man again offers me a book to put on the shelf but again I look away.
There still are books on the floor but my husband and the man start to move furniture around and not where it belongs. “The couch doesn’t go there” I mutter, but no one hears me. They keep putting things away in different places, but I start to notice they are placing these things in better spots. I wonder why I never thought of putting that chair over there. I watch the two men smile and laugh while putting this home back together. I sit in awe. My feelings of hate start to fade and maybe I don’t want to leave after all, I’ve never seen my husband work so hard on anything before. He and that man are determined to put this home back together. My heart starts to soften some but I don’t really want to help them yet. I just sit and watch.
Then the man hands me a book. I look up at him and look down, feeling guilty, but not ready to help. The two men continue to work. They continue to put the home back together.
The man again comes to me and hands me a book, this time I take the book, and I walk the book over to that shelf, the wrong shelf, the shelf that was not intended for my books and place the book on that shelf. Then the man hugs me and lets out a loud glorious laugh and I can’t help but join him. Then the man points to my husband, and we walk towards each other, hug each other and we cry. Then together all three of us work together to put things away. Some things were broken and never got to go back at all, something things we managed to glue together and others stayed unchanged just in a different place.
Hardly anything went back where it belonged but it all went together so much nicer than before. Every once in awhile I get annoyed when I forget where that cup goes and I curse the big bad wolf for changing everything so completely. I curse his evil heart; I curse how he ruined our home and then just disappeared, no concern, no sympathy. No intention to help, but to move on and ruin other homes. But at that moment when I feel that hurt swell, I look over at that kind man with the long hair and warm smile and he smiles at me and gives me his hand and lets me squeeze it. We talk about the anger and we talk about that big bad wolf and pray that one day his heart will soften and while I do this that swelling of anger releases.
But the best part of all is when it is dusk and still, I look around at everything and think this is how it should have always been. I am happy for the changes. The way things were was never forgotten and sometimes I miss my old book shelf, even though the new one fits so much better. It took awhile to get used to but I’m grateful now to have things where they belong, where they always should have been. If the big bad wolf never blew our house and left it in utter dismay, we would have never welcomed HIM back in to help us put things in the proper place. We would have continued walking around banging our shins and stubbing our toes, never looking to HIM asking where should this go?
Now our home has a shield around it, it is built not with only bricks and cement but also a form of unity that the big bad wolf cannot penetrate. It is watched over by HIM and we are no longer defenseless.
2010 shook us to our core. But had it never broken us, we would have never learned how to repair us.
So bring it on 2011! Our priorities are set. Our shields are on. There will never be another 2010 as long as we live, in reality or theory. And while the big bad wolf may come again to rear its ugly head, we are prepared and we say bring it on!

Emmie you are certainly missed. We were watching family videos last night and we saw several taken at FBC (Lily’s pre k) and Emmie was on a lot of them. Smiling, “sledding” on snow day, dressed as pretty as possible. I can’t imagine the heart ache her parents face each day not able to care for her like they spent 8 1/2 years doing. Today is Emmie’s 9th birthday. I wish we were going to go and celebrate with them. I wish she were still here. We miss you Emmie. You were something really special and we feel honored to be able to love you.
Happy Birthday sweet girl, may you be running and dancing and filling heaven with your light.

http://checkoutmyangelbabies.blogspot.com/2011/01/happy-birthday-beautiful.html

Lily has to see the eye Dr. every 3 months while on Sabril. It can cause tunnel vision (gotta love the side effects each and every AED brings) and the Dr. has to check for nerve damage every single visit to make sure she can stay on Sabril. At the last visit I mentioned I thought Andi Jane had a very slight strabismus and he said bring her in the next time Lily comes in so that was today. And let me just pat myself on the back for having all three kids fed, dressed and at the Dr. (who is a good 45-50 min from home) by 9:05am for a 9:15am appointment, that alone is worth the mother of the year award. Anyway, this eye Dr. is fabulous. It took me three guys to find him. He has bedside manor of a saint. He explains every number or medical term he tells his assistant to write down and he is bilingual, doesn’t matter to us, but that is pretty cool and he is rather good looking so it makes the time there even more fun. So the first lady tests Andi Jane’s vision and I am surprised she can’t read the letters on a line I think she should have. They say she is 20/30 and no concern yet, but they will follow up. Also said after dilation she has an astigmatism just like me and Lily. Still not so bad that she needs glasses yet, but they also diagnosed her with strabismus (imbalance of eye muscles) it is very slight as I am the only person who notices it and I have also diagnosed Andrew with it which just embarrasses him, but I know my stuff, Lily had surgery for this when she was 4. I know my eyes. So anyway no patching just yet for AJ, but he recommended some eye strengthening exercises, but if she shows no improvement by April we will have to patch her. I just figure fix this all now or else no Vogue later. 🙂
Now Lily’s turn. We have been told for years she has astigmatism, but her CVI has always been so bad he always said glasses would be more of a pain than a help, but today he said her tracking was so much better and her astigmatism is getting worse that what she is able to see is pretty blurry so he finally recommended glasses. We have been told for YEARS that her CVI has to get better before he will rx glasses and the day has come! Yippee! Now imaging Lily keeping glasses on is humorous to us, but we will give it a $200 shot. Sigh. I was actually surprised that her rx was -2.25 in both eyes! I was 25 when I had lasik and my rx at that time was -3.75, that is not that far behind. Poor little girl, even with crazy CVI she should be seeing so much better. We will take her to get fitted maybe this weekend. Cute Lily bug.
We follow up in April on that as well.
Just wanted to share, that was this blog was started for almost 8 years ago, Dr. appointments, then I started getting carried away with posts about my hair and then Andi Jane came along and well the rest is history 🙂