100th Post and a Give-away!

Well, if you are reading this, you my friend, are one faithful reader of one very unfaithful blogger:) (Or you are here because my friend Bethany sent you my way:) I love this little blog o' mine, and I really do have good intentions of updating it more often, but I don't always find the time to spend updating it as much as I would like! Plus, sometimes it feels like there are only about five people reading it anyways, so why bother. Ya know?

Still, somehow I have manged to reach a very important milestone- my 100th post!

In honor of finally updating this little blog 100 times, I have a very special giveaway. . . .

You see, I have this dear friend. A dear, out of this world, amazingly talented friend. She's a party planner extraordinaire. A phenomenal photographer. An amazing listener (sometimes I barely let her get a word in edgewise during our hours long, kinda one sided, phone conversations - and I interrupt a lot. . . ) She has been there for me during some of the darkest, I mean really, really dark moments of my life. She's the one I call when it hurts so bad I think I will explode, and even though she's like halfway across the country and there's nothing she can say or do, her simple "I know." somehow makes it better. She's just too sweet for words. She deserves a post of her own and if I updated this blog oh, say, more than once every two or three weeks- I would totally dedicate an entire post to dear, sweet, Bethany. . . but for now. Let me just tell you that another one of her talents is bow-making. . . Look at this sweet cutie-pie and that adorable bow! I'll bet you know someone who would look really cute in a bow like this:)

You could win a bow like this one, just for leaving a comment at the end of this post:) (And no, commenting on my Facebook page doesn't count this time- sorry.) If you don't have a blogger account, you just comment anonymous and leave your name and email at the end. I will randomly draw a winner on Sunday afternoon- so you've got a while to get your comment in! I will then contact you and Bethany will send the bow your way. . . cause she's cool like that!

I would make a bunch of promises about updating more and being a better blogger, but I'm not sure that I could keep them. So here's your chance, leave me some comment love on this important blog-o-versary and win your cutie-pie this adorable headband and bow! (Adorable model-not included:)

Kaylen Rose

When I dreamed of being a mommy, I could have never imagined the perfect gifts God would bless me with in my sweet girls. Miss Avery certainly gets her share of attention on this little blog, because well, putting it lightly she's always up to something isn't she? But there's another little girl in this house whose little life is certainly blog-worthy.

I've tried many times to put into words how I feel about my first born, my precious Kaylen Rose and I always fall short.



You see my friends, she's nothing short of amazing, this precious girl.



For one thing, she's a riot. She's always saying something that makes Britton and I laugh out loud. Some of her favorite phrases right now include, "Oh. Come. On. People!" "Are you kidding me?!" and "Remind me what's funny about this?" (Trust me, these sayings are so much funnier coming out of her little mouth:)

When we were in Chicago I was using the restroom and I guess I was taking longer than she thought was necessary. She kept asking me, in a loud, exaggerated whisper "Mommm! Are done yet?!" Then the automatically flushing toilet in my stall flushed and she exclaimed, "Well, its about time!" Except that it wasn't. My toilet flushed underneath me for no reason. When I told Kaylen this she said, "Uhhhh Mom? I think that's the toilet's way of saying. Get off. Your time's up!"

Oh, Kayley Rose.

You crack. me. up!



Kaylen is also a very determined little person. She works so hard at anything that she puts her mind to. She was recently asked to be a part of a junior competitive dance team. While dancing doesn't come naturally to her, she works so, so hard at it. At home she goes over and over the steps and pieces of routines that she is learning in her classes, and while she's still got a long ways to go, I'm so proud of her for her work ethic. She's the same way about school. It doesn't all come easy for her but she doesn't give up. She will write a word that she misses on our practice spelling tests at least twenty-five times without me telling her to, until she gets it right.



From the time Kaylen was very little she was a generous child. Even at two, she would offer you half of her favorite snack or the last bite of something that she clearly wanted to eat herself. She is constantly worrying about "the kids who don't have enough food to eat" or "don't have very may toys," and as a result has prompted us on many occasions to drop off donations to our local Salvation Army food kitchen, and to donate to Goodwill. She truly cares about other people and worries about them. We can't even begin to think of letting her watch the news, because if she hears the inevitable "bad news" or of a tragedy she will worry about the people involved for weeks. She worries especially about her friends. When her little neighbor friends squabble, as they often do, sometimes Kaylen comes home and cries because she can't "make everything better." She worries about one of her favorite classmates who "Doesn't have many friends mommy and I don't know why because I love her." She has such a soft heart. She hates spiders, but won't let me step on them. . . (well, unless they're really big mommy!)



Probably the thing that gets to me the most is this little girl's heart and love for her sissy. We've never told Kaylen that she needs to be "a good big sister" or to take care of Avery. She just does. She has a huge heart and is so, so very protective of her sissy. Once when Avery was little she reached up for the stove when it was on, and I automatically slapped her little hand away. Kaylen came running at me, already in tears, grabbed Avery and said "Don't ever hit my sissy! She doesn't understand!"



Last Sunday night after we tucked Kaylen in and had said goodnight, I was out in the living room picking up. I heard Kaylen kind of sniffling in her room, so I peeked my head back in and to check on her. She was lying in bed in the dark, sobbing softly into her pillow. I ran to her and asked her what on earth was wrong, and she managed to choke out, "I don't want Avery to have seizures anymore! I don't want her to have to go to the hospital. I don't want you to leave and go to California again." My heart ached for my girl as I reassured her that we were going to make things better again and I held her until she fell asleep. I could only hope that I wasn't making a promise I couldn't keep. Then I picked up the pieces of my broken heart and I left her room.

(Here is Kaylen holding Avery during the week that Avery went toxic on her meds and was miserable. She didn't want anyone to touch her, and Kaylen was the only one was able to comfort her.)



We will never know the bond between sweet Kaylen and her sister, its not like just any other sisterly bond. It goes much deeper.

I wish that I had the words to explain what an amazing precious person our Kaylen Rose is. Everything I want to say about her, seems like such a cliche, but they're all so true. She's one in a million. She's an angel on earth, the apple of my eye, and the love of my life.

Kaylen Rose, do you know what an amazing little girl you are? I have never met someone who cares about other people the way you do at seven years old. You love without holding back, you give until it hurts, and you are perfect. I can only begin to imagine the amazing things God has planned for you sweetheart. I thank Him everyday for choosing me to be your mommy and I love you more than you can possibly imagine. I will love you forever.

In spite of it all

Certainly life has thrown our little family its fair share of curve balls. Just when we think the storm clouds have moved on and we hang up our umbrellas, it begins to rain. And in our family, when it rains, it usually pours.

When Avery started having seizures again a few weeks ago, I took it really hard. I cried everytime I thought about the seizures for a couple of days. I just so wanted them to be gone for good this time. I never wanted to have the conversations about the risks of brain surgery again. I didn't want to consider whether to put her on some new medication and weigh the long list of potential side effects against the chance that it might stop her seizures. I just didn't want to deal with any of it. At all. But what choice do we have?

What amazes me the most about having a child with a chronic debiliitating illness is that no matter how bad things get, no matter how much you feel like throwing in the towel. . . life goes on. There are meals to be cooked, beds to be made, and stories to be read. There are spelling words to study and dance classes and doctor's appointments. In spite of it all.

In spite of it all, our family finds reasons to be happy. Almost all the time. We smile more than we frown and we laugh more than we cry. We choose happiness.

In spite of it all we go to birthday parties.






We visit the pumpkin patch.











We plant a tree together and watch it grow.





We do homework. (With Avery's help:)



We play together.





And we love.





Some days I don't feel like I can take another second of the sadness, the worry, the stress and the hurt of watching Avery battle this disease. But then she fits a shape into a shape sorter and claps for herself, takes a drink out of a big girl cup and sets it back down on the table without spilling a drop, and smiles her big beautiful smile.

And we find a way to keep going.

In spite of it all.

Not the update I wanted to write. . .

After nearly six months of seizure freedom, Avery has had a seizure almost every day for the past week and a half. At first we hoped it was just because she has been a little under the weather, but it seems that perhaps we are facing what we feared the most. Avery's long overdue break from seizures seems to be screeching to an abrupt halt. In just a few short weeks we would have been able to celebrate six months of no seizures and it hurts so badly that we can't that I hardly even know what to say about it.

I spent the better part of two hours sobbing on my sofa and punching pillows last night. I have known for awhile now that she was having a seizure here or there (for at least the last ten days) but it didn't really sink in until last night. So if you've talked to me in the last week or so and I said that things were fine- yeah, I was still enjoying the soft comfy blanket of denial. Watching Avery seize at the kitchen table last night felt in so many ways like the very first time she had a seizure in my arms some three and a half years ago now, except that there was no shock this time around to cushion the blow. I knew instantly deep in my heart back then, before I even knew about tuberous sclerosis, that nothing would ever be right again. And it isn't. Nothing can be right when you watch your child suffer and there's no way to sugar coat that or put a positive spin on it.

Except to say that if Miss Avery has taught us anything in the last four years, it is to never, ever count her out. She has shown us time and time again that she is up for the battle and refuses to give up or feel sorry for herself. She just keeps on keepin' on, and so we have no choice but to follow her lead. We try to focus on the positives and keep things as normal as possible for her and big sissy Kaylen, who is taking this latest setback particularly hard. We try to adjust to our new normal once again while questions about what to do next, fear, and despair threaten to overtake our hearts.

Perhaps, Miss Avery is just going through a growth spurt and we need to do some adjusting to her medication. Perhaps, she still has a bug and her seizure threshold is lowered. Or perhaps she is fighting a nasty beast of a disease that is relentless in its pursuit of her. Regardless, we have no choice but to trust that she will overcome this next hurdle and to pray for her safety and complete healing.

We ask that you join us in praying that these new seizures are just a temporary setback and soon Avery will be enjoying seizure free days again.