Epilepsy- the stages of grief: Sadness and Anger

VBS was very hard for me this year. Last year Aggie thrived in that situation. She participated, she made friends, she loved every second of it. She was not the problem child in the room. She did not require 1:1 care. She did not get distracted from the Bible stories by a compulsive need to eat a sticker.

She had her normal moments this year, of course, and I am so grateful for those. But some of her behaviors are becoming unmanageable. And I really mean UNmanageable- no amount of training or preparing or disciplining will help with behaviors a child has no control over. Some things we just survive, and when that gets too tough or too disruptive, we just go home.

It’s those little things that other people probably hardly notice that break my heart lately.

I know other kids have trouble listening, other kids put odd things in their mouth, other kids feel anti-social at times, other kids like to climb on everything and wash their hands with toothpaste (ok maybe not that last one) but when I see Aggie doing these things it is just so NOT her. It is epilepsy, or the drugs, or both. It is THE PROBLEM reaching into her tiny little head and changing things around, confusing her and all of us, making her think and do things she normally would not. It makes me mad and want to cry all at once.

Part of me is still waiting for her to just SNAP OUT OF IT already! But Josh says, “the Aggie we knew before epilepsy is gone.” The other night we were talking about how Aggie used to love interacting with others, but now spends large amounts of time alone doing quiet, sometimes repetitive activities. Her Grammy said, “that’s how she is now and that’s ok.” My heart does not want to accept that, but it is true. We just need to learn to love her this way.

I love Aggie. I love the Aggie I know, the one I gave birth to while daddy was in Iraq, the one who loves starting parties and having fun and teasing and drinking chocolate milk. Now and then I get glimpses of that Aggie, though most of the time I am taking care of other Aggies: There's wild and out of control Aggie, tired and pathetic Aggie, confused Aggie, drunk and happy Aggie, mildly autistic Aggie, antisocial Aggie, emotionally fragile Aggie, and close-to-normal Aggie, just to name a few. I never know how she is going to be from hour to the next. And I still have hope that things will get better when we find a way to manage her epilepsy- but for now, this unpredictability is part of our daily lives.

As I thought about this the other day, a ridiculous song popped into my head. I'm sure you know the oldie- “If you can't be with the one you love, honey, love the one you're with!”

It's quite an odd song to have for a theme song, especially for a pastor's wife! But it fits my life perfectly this month- plus, it makes me laugh!

Lord I have prayed a million times for you to fix Aggie, yet the storm rages on. Your thoughts and your plans are bigger than mine- help me to trust you through this trial, to remember that you are “in the boat” with us. I see changes in Aggie that break my heart, but the fact is, this unpredictable, changing Aggie is the one I am called to love and to serve. Lord make my heart bigger, help me adapt to her new needs, help me to accept where she is right now and love her has she needs to be loved today. In Jesus' name, Amen.

haircut day!

Yesterday was "haircut day" in the Cook house. Josh and Seth got their normal buzzes and Lorraine got a little trim. This time Aggie got to join in the fun:

Lorraine and Aggie feel like brand new princesses with their new hair dos! I wonder if they will still allow daddy to cut their hair when they are 13?

Meanwhile, Marcus is giving us a run for our money. He sure loves a party. I exercised by dancing with the kids yesterday, and so all day today Marcus keeps grabbing my hand and saying "dance?"

As cute as he is, he sure is trouble though. I remember reading a James Dobson book a long time ago that mentioned three kinds of children: complaint, strong-willed, and STRONG WILLED!!!! I think Marcus might be of the third kind. Every time Josh would tell him to do something yesterday Marcus would yell "NO!!!" (and of course got in trouble every time.) Josh made significant progress with him. Now, when he is asked to do something, he takes a huge breath and says "NNNNNNN...." and then begins to obey.


All the kids are sad that vacation went so quickly, but we are all looking forward to Nana's visit on Tuesday (she's staying for about a week.) We hope she recovered ok from that climb to Lake Michigan! I know I am still sore!

Meanwhile, Eldon thinks this family is hilarious. We think he is a funny little guy too! And a good baby- he slept through the night last night!!!!

Epilepsy- the stages of grief: Denial

Even though Aggie has been having seizures since last fall, there is still a bit of unreality to it all for me. Some days I feel like I see what is going on and I am handling it. But other days are more of a struggle, especially if we are considering doing something new to adapt to her disability, or considering another risky drug, or talking about surgery. My instinct is to resist, and my heart cries “Are we really talking about brain surgery? WAIT a minute- she was JUST fine!”

For example, some days Aggie is incredibly oral- constantly chewing or licking everything, and I mean everything. It's weird, it's gross, and it has the potential to drive me bonkers. Apparently this is common with epilepsy in the temporal lobe and related to anxiety. Apparently this is probably more of a compulsive need than a trainable discipline issue. Apparently they make safe chewable necklaces for children with this problem. But my four year old princess wearing a slobbery necklace all the time? Wait just a minute… she’s not really that bad, and it’s not all the time, and she was JUST fine! Like five minutes ago (ok last fall.) It feels like I just turned my head for one minute, she was just fine and now she is not. Like I am half expecting to see things snap right back to normal if we just wait... just a few more minutes… maybe she will be just fine again.

I guess it is the same kind of thing people go through after a loved one dies suddenly or someone gets a nasty diagnosis… We stare in shock and amazement- stammering "they were just fine, how can this be?"

Death and sickness are everywhere, and yet we are always so shocked when they come near us. Why is that? We feel good at this very moment, so we expect to tonight, and tomorrow, and a few years from now. We are receiving life in full measure at this very moment, by pure grace, and because we have been given it for however many years we think it is ours to keep forever. Our kids come out of the womb healthy and we expect them to stay that way.

Then in a moment things change. Our eyes are opened, and we see how fragile we are. And we try desperately to close our eyes again, to return to that sweet, safe dream.

But there is no safety at all, absolutely none, other than in the hands of our God.

Other refuge I have none, hangs my helpless soul on Thee
Leave, ah leave, me not alone, still support and comfort me.

All my trust on Thee is stayed,
All my help from Thee I bring

Cover my defenseless head with the shadow of Thy wing.

(Jesus lover of my soul, TLH 345)

Just because they're pastor's kids...

don't assume they're civilized!

Seth and Marcus are both in a stage I call "I-wonder-what-will-happen-if-I..." Here are some recent wonderings from my trouble makers....

Seth: I wonder what would happen if I tried to drive my Grandpa's golf cart?


Marcus: I wonder what sound Eldon makes when I poke him right here? how about here? here? How many times can I poke him before mommy chases me away?


Seth: I wonder what would happen if I drank a bottle of bubbles?

Marcus: I wonder what would happen if I laughed about getting a spanking?

Seth: I wonder what would happen if I looked right at my daddy and smiled while dumping my lemonade out on the table?

Marcus: I wonder what would happen if I try to eat a rock? a piece of chalk? a bug? my shoe? my sister?

Seth: I wonder what would happen if I ran home ahead of Miss Schneider (since she is slowed down by a screaming hungry baby,) then locked the door on her? I wonder what would happen if I danced around and laughed instead of letting her in?



Mommy: I wonder what would happen if I ran into the woods and hid for a few hours?

a date!

We finally have a date- July 7. Not quite as early as we had hoped, but we are grateful nonetheless. The more we hear about Cleveland the more we like it. They intend to do all tests that Mayo was going to do (MRI, Video EEG, etc) plus more: Neuro-psych testing to see how the epilepsy and meds have affected her development, and a PET scan to check for metabolic disorders that could cause seizures. The testing will take at least three days, possibly more.

This date also gives us time for a much needed vacation, a trip to Michigan to see our family. We plan to go next Thursday night for a week.

So what do we hope to get out of Cleveland? We are hoping for a clearer understanding of what is going on with Aggie, though we know that 70% of the time, there is no known cause for epilepsy.

We are also hoping to find out if she would be a candidate for surgery. Though there may be drugs out there that would work in her case, so far it is not looking good. And the more meds that do not work for her, the less likely it is that any of them will work. So, as scary as brain surgery sounds, it is also scary to think it may NOT be an option! (especially considering she had nineteen seizures yesterday!)

Brain surgery is only an option for people who have a "seizure focus," that is, a part of the brain that seems to be causing the seizures. If there is a focus, and if it is reachable without causing too many other problems, surgery may be a good choice. 70% of patiets are seizure free after surgery (and these are patients that could not gain seizure control with medicine.)

We are eager to explore this option early on, as young kids seem to recover much better from brain surgery- the sooner the better. Of course we also want to hear more about the ketogenic diet and the VNS and any other treatment options out there.

So Cleveland will be a time of big decisions- if surgery is an option we may decide to do it right away, or we may try other things first.

How does one prepare for our time at the epilepsy center? For possible brain surgery? For huge decisions and hope and risk? Will Aggie be coming back home with us? The same Aggie we took? A helped Aggie? A brain damaged Aggie? Will we come back with good news and hope, or devastating news and last resorts?

We have no clue, so we will just keep doing what is in front of us.... Probably while hugging the all kids a little tighter along the way.

baby boys

As I wait for the phone to ring, I thought I'd share some pictures of my baby boys!


Marcus was riding on this horse while listing to Garth Brook's song "rodeo!" What a goof!
He sure is a good dancing buddy!


And chubby little Eldon- I think he is a comfort eater like his mommy!

Cleveland Clinic it is!

We got a call from Cleveland clinic yesterday- sounds like they can get us in there sooner than Mayo- we do not have a date yet but it looks like maybe June 24 or the week following (they still have to process her insurance, review her meds, etc.) We are SO glad to see things moving along- she had 16 seizures yesterday. Mostly short, but still.... enough already!

I will post when we know a little more. Thank you all for your prayers! As you are praying for the sadness in our house, today please add one more thing... we had to put our dog down yesterday. He got injured somehow and just wasn't going to make it :( The kids are taking it ok so far. He was a good dog.

short Aggie update

Aggie's doctor is consulting with an epilepsy center today to see if he can get her in before July 15. (possibly Cleveland instead of Mayo if she can be seen sooner.) Meanwhile we are stopping her fourth med (the one that made her act drunk and did not help the seizures), increasing her third med and holding steady on the others. He said he suspects she will fail this med also as it has not even touched the seizures yet... but we still have to give it a good try (most docs will not even consider surgery if you have not yet tried enough medicines.) We hope to hear about Cleveland / Mayo tomorrow.


It is so nice to have the boys back! What a happy reunion we had on friday! Though I must say things are a LOT crazier with all the kids around. And if there happens to be a tiny moment of calm Marcus is sure to stir things up by, say, smacking Eldon on the head and then running away laughing, or shaking baby powder all over his head and my bedroom! (Note to self: the kids do not take scolding seriously when you are taking pictures at the same time!!!)

But today is a good day- though I think my standard for 'good days' are different than most people. What I mean by that is 1. Aggie has not stopped breathing today AND 2. all the elevators we rode in today WORKED!