The Blessings of Epilepsy

Look at that handsome devil.  He got a normal Brain MRI result last week.  I was walking my little diva into preschool when the neurology clinic number showed up on my hot pink cell phone.  It was the nurse, which caused immediate relief.  She wouldn't be calling if there was a problem.  I started skipping across the parking lot as my daughter skipped along with me, oblivious to the reason for my joy.  She said six words:  "Your son's MRI results are normal." That was it.  I thanked her and hung up.  I picked Squirt up and squeezed her since Dude wasn't handy.  As much as I had convinced myself that we would be okay with a tumor finding or something that required serious medical attention, I don't know that I would have been.  I tried remaining calm through that whole process, but as I watched my 7 year old cling to me for help as they were sedating him, trying to free himself of the mask and tubes in complete fear, I knew I wasn't the supermom I convinced myself I would be.  Thank you Jesus I don't have to put on a cape.

Moving on from the "let's eliminate anything scarier than  Epilepsy testing," I've had a few weeks to process Epilepsy and what it looks like for our family and our little Enderman (Mindcraft is ALL he can talk about these days).  I've sat with it and digested it with as little drama as my over dramatic self naturally gravitates toward.  I've watched my son with more patient and loving eyes and noted all the moments that I assume are seizure moments.  I've laid with him at night and watched his mouth twitch and his arm move with new understanding of what might be going on in his marvelous little brain.  My husband and I inwardly bow our heads as we help with "focus" on his homework, knowing that his brain is doing everything in its power to steer him away from 24+13.

I've processed and sat and prayed and breathed and here's the Epilepsy conclusion I'm coming to.  We're going to treat it like a blessing.  In my heart of hearts, I believe it's a blessing.  It points to what we can only hope and pray is the root of so many other struggles he has faced.  Epilepsy offers us a more clear understanding of our son as a person and what's happening in his body on a day to day basis.  It allows us the opportunity to look at him with more compassion and understanding for the things that perplexed us and caused angst in the past.  It's not a ball of wax anymore.  It's more like a bouncy ball with a tie dye pattern running through it.  Complex, but really pretty and mesmerizing to look at.  It bounces much better too.  Epilepsy offers the blessing of working with trained doctors to find solutions.  As much as we've worked our tails off avoiding medication and doing natural therapy and diet options, we have no choice but to embrace Epilepsy meds.  And if you're one that will argue that we should avoid medication and try diet alternatives, please be so kind as to swallow your opinions.  In this case, we're not game.  We're aware that the medication road very well might be windy and frustrating, but in the end, I trust we'll figure it out.  And the results of what our little man might experience as a result of carefully chosen and monitored treatment causes nothing less than little girl giddy excitement for this mama.  I don't doubt the blessing potential that's ahead.

So, on March 2-4 we check into Children's Hospital where we'll sit in a hospital room for up to three days.  Dude will be hooked up like he was for the EEG that entire time and will also be video monitored.  We'll have to push a button when we suspect he's experiencing a seizure so they can mark that moment in the video.  We'll also have to tell them when he wants to move from the bed to the chair so they can move the camera.  THAT we're not looking forward to.  He's going to go ape shit by the end.  As are we.  We have to be with him in that room every second, forcing us to bring in Grandma V as a reinforcement.  She'll hang with Squirt so Tim and I can share hospital duty.  If they get an adequate amount of results in the first 24 hours, they might allow us to leave. We're hoping for that scenario, but planning on the long haul.  We're told the results will be given to us while we're there, which is helpful.  The waiting game is no carnival ride, not that I think carnival rides are at all fun.  At that point, our doc will get the results and we'll consult about what type/s we're dealing with and what meds she recommends starting with.  Bam, that'll be that.  Epilepsy will be our medical blessing in disguise and with God at the wheel managing our level of peace and optimism, we can handle it.  All of it.  Just please no more surprises, ok God?  We're all surprised out for a while.

60 Degrees in January

The kind of weather we've been having calls for outdoorsy time.  Last Saturday we drove 15 minutes to one of the most scenic spots in the south suburbs for a hike and rock climbing (not with gear my friends...just walking around on ground laden rocks).  We found a path that ran along the street with barb wire fencing on either side and not another human in site, meaning Enzo could run free and find his happy place.  There was plenty of snow and ice, meaning the kids could slip and slide and find their happy place.  And since those three were in a happy place, that equals happy for Mom and Dad. We walked and walked and walked some more and soon realized that the destination was not as close as we anticipated and it would not be in our best interest to keep forging on.  Tim and Enzo Benzo went back the 1.75 miles to get the car to transport us to the rock climbing area.

While the monkeys and I waited for our carriage to arrive, we parked our tiring booties on rocks next to a heard of beautiful and randomly place buffalo and white horses (we called them stallions to add to the intrigue).  The kids chatted with the stallion they named Snowball, talked in depth about the enormous mounds of buffalo poo in the field and asked 74 times if I had water.  I did not.  Tim decided to pick us up (he could have totally ditched us) and we finished our excursion in the rocky cliff area.  After a few more requests for water (which I had made clear I did NOT have) we decided to call it a day.

We're supposed to be in the 60's for the next 5 days, so look out for more Colorado adventures.

Little People, Deep Thoughts

As Tim and I laid on Dude's bedroom floor this morning, rummaging through thousands of colorful, tiny Lego pieces, we talked about the deep level of thinking that has come from our little people just in the past few days.  The examples of various conversations I've had with them kept going and going and going.  Granted, they were making farting noises and arguing over who was looking at who as we discussed these examples, but that's life as every parent of little people knows it.  

Conversation Summaries:

#1:  Dude and I were sitting at the kitchen table doing homework.  I asked him if there were other kids in his class who were adopted or knew about adoption.  A little boy of Asian descent had asked me questions about Dude being adopted at school the week before and I wondered if he too was adopted.  Dude said, "No, but Jimmy makes fun of me and laughs at me for being adopted.  He asks if I was and when I tell him yes he tells everyone to laugh at me.  I don't know why he laughs about it Mom."  My heart dropped and my fists clenched all in the same moment.  I told him that kids do mean things when they're confused or don't understand a situation and that Jimmy just didn't know what that meant for our family, so he acted mean.  Dude's reply?  "Well, next time someone asks me if I'm adopted I'm just going to say no so they won't laugh at me."  I wanted to grab his sweet face, but he doesn't like physical touch.  Instead I held his pale little hand and told him that we never lie about who we are and that God made us to be an awesome family and we wouldn't change anything about us.  I felt like someone had slapped me in the face with the reality that this was just the first of countless conversations like this to come.  Turns out, it WAS the little boy I had spoken with who was laughing at him.  Little punk.

#2:  Squirt knows that her brother goes to lots of special places and doctors.  She's typically dragged along to act as a waiting room fixture.  We never really explain the big picture of these occasions for fear that she'll see him as "sick" or "needing help."  In the car on Friday she says, "Mama, why brudder going to doctor today?" He was getting his brain MRI done that afternoon and we told her she had a special play day so we could take Dude to the doctor.  I froze, mouth open, not sure how to respond.  The truth was that he was going to be put to sleep so the doctors could take pictures of his brain to make sure there isn't anything terribly wrong that would require immediate action.  Like a tumor that would change his and our lives.  THAT is what my brain had been telling myself.  And THAT reality freaked the shit out of me, so what would it do to an innocent 4 year old?  She sensed my silence and said, "Mom, what brudder DO at the doctor today?"  I told her that they were going to take pictures of his brain to make sure it was super healthy and we were so glad that we had healthy kids and that we should pray for all the kids who have to go to the doctor because they're sick.

She got a look of sadness on her squishy face and said, "Like Colin.  He sick and God has to make him better, right Mom?" Collin is a 5 year old friend of a friend who is battling cancer.  We've talked a lot about him and the reality of illness in the world.  "We don't have to lose our hair or take all dose medicines. Brudder just had to go to Brain Bounce."  (Brain Balance)  That little princess diva has an unbelievably deep understanding and perspective on what I tend to over think.  

#3:  10 minutes after that conversation, Dude got in the car.  He says, "Mom, did Amber (his birth mom) use a special blanket like Linsy's to cover up her boobs to feed me?"  Ok then.  I guess we're talking about this.  I told him that Amber did not use her body to feed him and that we used bottles to feed him and his sister.  He said, "Well, did you buy bottles before I came home so you could feed me?"  Yes, we sure did.  He then asked technical questions about how breasts work and if Amber had milk in hers.  And did I?  And of course, Squirt wanted the same information about Brook.  She wondered if she would ever be in my belly?  It bothers her that she was not in my belly. That's already evident.  I'll admit, those conversations aren't easy for me.   Naturally, this deep display of communication ended with both children acting as if they were giving birth in the backseat of the Honda Pilot.  And later I heard Dude ask Squirt why she was using a bottle to feed her dolls and had she considered feeding them from her boobs?  

#4:  We went hiking this weekend to take in the 60 degree bliss.  After misjudging how far our little jaunt would be, Tim ran back the 1.75 miles to get the car.  While we waited for our chauffeur, the kids and I plopped down on a huge rock next to a heard of buffalo and two impressive white horses.  That's all ture. Those animals were present, along with a ridiculous amount of buffalo crap.  Dude exclaims, very simply, "And now we're sitting on God."  I asked what he meant and he says, "Duh Mom.  God is our rock."  Oh sweet child.  You have no idea how true that is.  Or maybe you do and I'm just learning.

#5:  Squirt woke up at 2:30am last night and taps me on the shoulder.  She weepily says, "Mama, will you and Daddy be in heaven wif me?"  I sat up, lifted her into bed with me and asked what she meant.  She says, "I had a dream that my bed was on fire and I went to heaven with Jesus.  Will you and Daddy be there too? Because I will miss you so much if you don't come too."  Another long pause and mouth open moment for me.  I think I told her that she wasn't going to die until she was old and that Jesus and Mom and Dad will always be with her.  I remember feeling guilty ensuring her of something I have no control over.  I can't tell her that we can all die at any moment.  And so I didn't.  But I made sure to explain to her that no matter what happens, we all live in our each other's hearts.  That seemed to calm her, so I put her back to sleep and sat there staring at her for a long time.

#6:    At dinner tonight, we talked about MLK Day being the reason Dude doesn't have school tomorrow.  Neither of them knew about Mr. King so we explained that he was a black man who had a dream to change the way the world treats people with black skin.  Dude says, "Well, black people and Sarah (a little girl in his class) have the same heart as me!  And they have the same intestines too!  Why would we be mean to people who look different?"  We clenched our hearts and squeezed each other's legs to hold back from laughing.  Squirt says, "They are so handsome and beautiful too and their skin is so precious!  It's not kind to be mean to them."  I literally squeezed her face and released her of all the treacherous behavior she had displayed throughout the day.  Redemption was felt. Perhaps we're not completely failing at this parenting game after all.

I'm feeling a lot of "heavy" these days.  Obviously our kids are too.  We're hoping for a lightweight February. But if it's gonna be deep and weighty, I'm oh so grateful that sparks of Jesus are in the midst of it all.



 

Pancakes & PJ's

The big day of turning 2+2 was last Thursday.  I'm cherishing the fact that she's not yet a whole hand old.  She's still my baby in some senses of the word.  Not many.  These were her gifts from Nana and Papa.  Wrapped with love.  

You would think she opened a live pony, but pots and pans for her kitchen is a close second.

Scrambled eggs, made by our master breakfast make Dad.  Her very favorite.

And now for the main event. The next evening, 4 (minus a sick Molly) arrived in PJ's for the partaaaay.  Tim cooked pancakes, we doused them with sprinkles and fruit and maple syrup, we made fruit loop necklaces, we played "Pin the Pancake on the PJ's, Dude read the littles books about pancakes and we opened presents.  It was two hours of 4 year old fun and giggles.  Just what Squirt ordered.  

Per my Pinterest paroozing, I attempted to make the table resemble a bed.  A concept lost on everyone else, but maybe from this angle you can tell????

Dude is reading to the children.  They can't much see the pictures, thus why Lando chose to move up close and personal for a better view.

Oh Squirt.  

Lando could NOT get that darn pancake on the PJ's and he would not stop until he was victorious.

It was a fun week of celebrating our baby girl.  She's worth celebrating to the moon and back and then some.  Happy Birthday Punkster.

2 Weeks of Free Time

Sounds like a blessing - 2 weeks to do nothing but sit at home, hang out with the kids, cook, clean up, go sledding, wish it was warmer, break up fights, remind kids not to trek wet boots and snowsuits into the house, cook some more, clean some more, remind the kids not to assault the dog, assemble another puzzle....it was a blessing for a week.  Then we deeply regretted not planning something to get the heck out of dodge.  We did have many highlights of fun during those 2 weeks.  See below for evidence.

Squirt's very first ballet lesson.  Need I say words?  Notice the necklace she has on came from her friend Molly.  It's a "BFF" necklace.  I had one of those in 6th grade with a friend I won't name and I asked her to give it back to me so I could give it to someone else.  Sorry Ernose.  I will teach my daughter to cherish her BFF's and not become a traitor.  

The little girl in the front did not come back week #2.

Tim took Dude on a boy's sledding adventure one morning.  They went to a steep hill in the open space across from our neighborhood.  Tim was shocked at how awesome Dude did until..... a tree stump met Dude's boyhood area and knocked him flat on his skinny fanny.  Out for the day.  This might have caused occassional strife for the next couple of days.  Rest assured, he is ok.  Just a bit marred from the experience.  SO, we chose a more mild sledding experience later in the week and it went off without a hitch.  Enzo relentlessly ran after every child who went down the hill in an effort to herd them back together at the top.

Squirt refused to allow anyone to join her on her trips downhill.  She was a bit of a persnickety sledder. When she reached the bottom, she would sit motionless until someone arrived to walk her up the hill, all the while saying, "This is SO hard to climb, right?"  Every time.

I forced Enzo down one time and he was freaking out in a major way.  Made for cute pictures anyway.

We swam at the rec center with our Glassman peeps.  Baby Hayes had his very first pool experience that day.  He might possibly be the easiest, most endearing baby boy on the planet.  It was blizzarding outside which made it all the more enjoyable to be in the warm pool.  Until we had to walk to our cars.

 We played LOTS of baby.

 We were handed roses at the grocery store simply for being cute.  Just what she needs.  More people telling her how charming she is.  The next day an old man at Barnes and Noble handed her a dollar.  Perfect.  I made her give it to the present wrapping ladies.  

 Mommy got new kitchen rugs.  Happiness.  Of course now I have to change the paint, the wall hangings, the pillows...

 We hung out at Starbucks for a change of scenery. Which means we fought at Starbucks rather than at home.

 Dude graduated from Brain Balance Center after 3 months of HARD work and countless hours of time and exercises both at therapy and at home.  It's exasperating to think we did all this before we knew the Epilepsy diagnosis was coming, but we're grateful for the positive changes we've seen as a result of all our time and effort.  Dude got a kickin' Lego set as a reward for being so amazing through it all.

 New Year's Eve consisted of a very fancy dinner out at a taco chain with Miss Hadley June.  We put the kids down at 7:30 and had our Kansas City friends, Eric and Megan, over for drinks and hang out time.  We (I) made it till midnight, I'm proud to say.

 We constructed a magical wooden sled at everyone's favorite box chain hardware store.  Squirt has impressive hammering skills already at the tender age of three.

We bowled at a sweet Denver alley and BBQ pit.  The McKinster clan turned us on to it and we had a blast.  

 We slept.  In camouflage.

We chilled.  And we're grateful that life is back to a normal routine again.  Happy January!