It's Just Brain Damage, No Big Deal

Derek had a neurology appointment today at Children's Hospital in Omaha.  It was his first since his MRI.  I had a billion questions for the neurologist.  I wonder if she's ever seen the likes of me before...

My son's MRI was back in December.  (If you want to read about it, just click on the word.)  The MRI revealed that my son had a "brain injury."  The neurologist called me to tell me the details, but I was so shocked that I didn't think to ask any questions.  I also learned that week that my son was having seizures (his EEG showed sharp spikes) and although I was not as surprised by this news, it was still a stressful week.

I had to get up at 5 a.m. this morning in order to get out the door by 6:45.  It was a 3 hour drive to Omaha--and it was a looooooong drive with both boys.  Derek's appointment was at 10:30, but I had to drop Tyler off with my parents in Omaha before going to the appointment.  (Tyler was sick--he came home from school with a fever yesterday and foiled all my plans!)

These were some of the BIG questions I had for the neurologist:
1. Is a brain injury the same as brain damage?
2. Where is the brain injury located?
3. Can you tell when or how it happened?
4. What does it effect--speech?  memory?  social skills?
5. Is it causing the seizures?  Or are the seizures causing the injury?
6. Is it possible the injury caused his autism?


This is what she told me.
1. Yes, a brain injury is the same as brain damage.  
2. His left frontal lobe is the area that is injured.  
3. There is no way to tell exactly when or how it happened.  It could have been caused by a blood clot in the placenta, or it could have been caused by a fall.  It is not your fault--you didn't do anything wrong.  
4. It can effect a lot of things--there are many different pathways through the brain. 
5.  Hard to tell--which came first?  The chicken or the egg?  All we can do now is treat the seizures to prevent further injury.
6.  Yes, it's entirely possible.  But since we don't know when it happened, it might NOT be the cause.   

I keep reminding myself that nothing has really changed.  Derek is still the exact same child he was yesterday.  Now I just have more information on how to help him reach his full potential.  

Actually, it just makes my son seem all the more inspirational to me.

Derek is singing songs at preschool.
He's learning to write his own name.
He's counting to 11 by himself.
He's asking other kids if they want to play with him.

This kid of mine is freaking amazing...and he always will be.

Adopting a Guinea Pig

My boys walking into the Nebraska Humane Society

I think I've mentioned once or twice that Derek loves animals.  For a while now, I've been wanting to get him a pet--but my husband is allergic to cats and I honestly don't think we have the time (or money) for a dog.  However, I've had guinea pigs most of my life.  When Tyler was just born, I actually had SEVEN.  (Yes, I said SEVEN.  One of the pigs I got at Petco was supposed to be a girl and turned out to be a boy...there were babies.  Lots and lots of babies.)

Anyway, we haven't had them for a while.  But I've kept all of the supplies.  I had two empty cages downstairs just sitting there, as well as empty food dishes and leftover bedding.  I decided to see if there was a guinea pig that needed rescuing at the Humane Society.  I didn't want to get one from a pet store again.  I've had bad luck with pet stores in the past--one of the pigs I got a few years ago was very sick and after spending hundreds of dollars on it at the vet, the poor thing still died.  Another was infested with mites and we had to wash him in a bath that smelled like rotten eggs to kill all of them (nasty).  I knew that the Humane Society has a vet check their animals and I'd be getting one who was older, but at least healthy.  Plus, I'd be saving a guinea pig's life!  

So, on March 1 we marched into the Nebraska Humane Society, knowing there was a guinea pig named "Bob" who had been there since mid-February.  We had high hopes that he'd be coming home with us.  Well, Tyler and I were excited anyway.  Derek didn't really know what was going on.  He was excited to see all of the different animals though.  Besides cats and dogs, there were gerbils, mice, birds, rabbits, and there was even a snake!

Derek checking out the snake.

The boys looking at the birds.  Derek did a happy dance when he saw them.  :)

Turtles swimming in a cage.

Tyler excited to adopt "Bob" (we renamed him QT)!

About an hour later, we walked out of there with our new pet.  As you can see from the pictures below, my boys LOVE him.  Derek gets a big smile on his face whenever he sees QT and immediately wants to pet and feed him.  He'll hand him a carrot and say, "Eat it Squeaky!"  He doesn't remember our old guinea pigs, but Tyler does.  And Tyler is Oh, So Happy to have a new one.  Especially a friendly one that squeaks and purrs.  

Petting QT

I think they call this LOVE.

This pig is full of personality.  I've had a LOT of guinea pigs in my life (Piggy, Fuzzy, Snowball,  Pepe, Tweek, Puddin', Rascall, Patches, Mu, Pip, and JR.).  QT is only the 2nd one I've known that sits on top of his house for fun.  :)

A Midwinter Night's Dream

4:43 a.m.  I wake up from the usual nightmare:  Derek is drowning and no matter how hard or how fast I swim, I cannot reach him.

I roll over and gaze at the 5 year old boy sleeping beside me.

Moonlight falls on his face through an opening in the curtain.

He looks almost angelic in the blue light.

I stop and stare, trying to drink in the moment for all eternity.

Long lashes flutter on his smooth cheeks.

His lips move as he mumbles a little.

I watch his chest slowly rise and fall and am reminded of the hundreds of times I checked to make sure he was breathing as an infant.

His hair, curling softly, smells faintly of the lavender scented baby wash I used the evening before.

His face is losing its baby fat, and he's looking more and more like a little boy.

His hands and feet remind me of a puppy's--they are just a little bit too big for his body.

My child is growing, right before my very eyes.

I wish, for a brief moment, that I could stop time.

Derek's MDT is coming up.  It has been more than 3 years since the official autism diagnosis.  I know that nothing has technically changed.  His teacher told me on the phone that they were "confident" that he would still qualify for autism services.  A lot of people will be at this MDT.  The school plans on doing neurological and psychological testing, as well as an IQ test.  Speech and OT will be there as well.

These tests don't matter to me.  It no longer hurts me to see how far behind his peers my son really is.  Standardized tests don't reflect the important things, and they never will.

Tests don't show how much my son has overcome.
Nor do they show his capacity for learning.
Tests don't reflect determination, patience, or compassion--qualities I know my son has in abundance.

I continue to watch him sleep.  He stirs and calls out, "Mommy?"
I put my hand on his arm and say, "Mommy's here."
He instantly stills and his breathing quiets.
I wonder what he dreams about--and if he speaks without difficulty in his dreams.
I wonder what the future holds for my beautiful child.

No.  I will not worry about tomorrow.  My son has everything he needs right now; a roof over his head, food to eat, and a family that loves and believes in him.

Dream big, my son.
Anything is possible...

The Perfect Pity Party

"The best laid plans of mice and men often go astray..." 

--Robert Burns

I had big plans for the weekend.  BIG plans.  Unfortunately, Mother Nature decided to laugh at my plans and dump a foot of snow on my doorstep.  

About a month ago, I decided I actually wanted to do something for my birthday.  Since Tyler and I have birthdays so close together, I usually just throw him a big party and ignore the fact that I'm adding another candle to my birthday cake as well.  Once you reach a certain age, birthdays aren't that big of a deal anyway, right?  That's what I tell myself, anyway.

Plan A) This year a friend of mine was supposed to drive 3 hours to come visit me.  I had everything arranged.  I'd made a reservation at a hotel 30 minutes away that I'd wanted to go to for YEARS.  Why?  Because it has waterslides.  I figured the two of us could take the kids down the waterslides for a few hours and play until we were exhausted.  Then, when my husband got off work, he could take the kids home and I could actually have a girl's night out.  I was beyond excited--until it started snowing.  

Plan B)  THEN, when school was cancelled last night and I knew my friend was not going to make it, I tried to make back-up plans.  I called a few local friends to see if they'd be interested in coming over with their kids for dinner and drinks and movies and games.  Great plan, right?

Not only did we get bombarded with snow, but Derek woke up sick.  He has a fever and is coughing and congested.  Super.  Plan B is out too.

So what did I do to celebrate my birthday?  Simple.  I did a whole lot of nothing.  And it was INCREDIBLE.  I stayed in my pajamas all day long.  I snuggled with my boys and watched a movie.  Tyler and I finished reading Where the Red Fern Grows and started reading The Best Christmas Pageant Ever.  I helped Tyler put together his coin collection (he's collecting state quarters).  I made a lasagna.  I sat and watched the snow come down with Derek in my lap.  I played on the computer while my boys played on the Ipad.  Derek and I set up a huge train track.  

Derek studying the snowflakes.

And once again, I was reminded how important days like today are.  No, I didn't get to hang out with my friends.  But I got to relax and spend quality time with my boys--and maybe that's what I needed most.  Or maybe that's what THEY needed most?  Either way, my day was incredible.  

.  

It's STILL SNOWING...

If not for the snow, I wouldn't have heard Derek wish me a "Hippy Birdie."  Nor would I have received a drawing of a four-headed dragon from Tyler--with a note on it that said, "Happy berthday Mommy you are very speshall to me."  

Thank you Mother Nature for foiling my plans.  I owe you one...

2555 Days With Tyler

My first-born son turns 7 this week.  Unbelievable.  It seems like just yesterday I was holding my colicky baby boy and trying to figure out how to get him to stop crying.  Time has a warped sense of humor.  When you have little ones, the days fly by in a blur...the day-to-day routine is so exhausting you can't fully enjoy it.  It's only years later that you look back at the little details and realize how important they really were.

The other day, Tyler couldn't find his shoes.  At his parent-teacher conference, we talked about how one of the things Tyler needs to work on is being more responsible for his own belongings.  So I reminded him that he needs to keep track of his things and asked where he last left his shoes.  Tyler got upset and started crying, so I asked what was wrong.  He responded, "You don't like me anymore."  I asked why he would think that, and he said, "Because I lose stuff all the time."

I reassured my son that just because he loses things doesn't mean I don't like him.  Then I started thinking of how much I really do LOVE my son, regardless of his missing shoes.  I have 7 years (2,555 days) worth of memories with this child...I don't know much, but I know I love him.

These Things I Know:

1.  Tyler's favorite color is currently red, but it was hot pink when he was little.
2.  His white blonde hair has a couple of darker blonde leopard spots.  You can see them on the top of his head if you look really closely--especially right after a haircut.

3.  He has a "crazy toe."  By that, I mean the 2nd toe on his left foot curls over the 3rd toe.  All the time.  If I have him step on a piece of paper with paint on his foot, the footprint that is left is "missing" a toe.

4.  Right now Tyler wants to be both a President and a Zookeeper when he grows up.  Just a few months ago he wanted to be an astronaut.  And a few months before that he wanted to be a paleontologist.  I wonder what's next?
5.  He has a smattering of freckles on his nose...and I'm in love with every single one of them.
6.  His favorite song is "Diamond Eyes" by Shinedown.
7.  When Tyler was a baby, I used to dance with him on my hip to Alan Jackson's "Remember When."  I told Tyler the story, and if he hears it on the radio, he tells me "our song" is on.

8.  Mashed potatoes make him gag.  So do bananas.
9.  Tyler likes to help me cook.  One time when he was really little, he was helping me make banana bread and decided to throw the entire egg into the electric mixer before I could stop him.  Little tiny pieces of eggshell scattered throughout the batter.  He was so upset that he'd ruined the banana bread that he started to cry and tried to pick the pieces of shell out, one by one.
10.  He tries to save the toads from our deep window wells every single year.
11.  He talks like an adult.  I've been told this several times over the past few years by numerous people.  Tyler is older than his years and has an extensive vocabulary.  I'm not sure if it's because he had to grow up too fast, or if he is just a really smart kid--but he shocks people regularly.
13.  I saved Tyler's life once.  He almost got hit by a semi-truck.  But I dove in front of the truck and pushed my son out of the truck's path.  Tyler rewarded me by punching me in the face for scaring him.
12.  He's an amazing brother.  He acts like he doesn't care about Derek, but he's the first to defend him.  He'll also check on Derek when he's sick, and he gets excited when Derek says or does something new.
13.  When Tyler was born, I thought he was the most beautiful baby I'd ever seen.  I'm sure a lot of mom's say that.  But I was expecting a red, alien looking thing...and they handed me a pink little boy with a perfectly round head, wide eyes, and dark blonde hair.  He was BEAUTIFUL.  I couldn't believe he was mine.

14.  Tyler has a huge heart.  Something happened a week or so ago that made me sad.  I won't go into details.  Tyler knew what happened and wrote me a note.  It was full of misspelled words, but the message was clear.  The last lines read, "I'll auease (always) be thare to kumfert you.  I'll auease be in your hart."

15.  My son is amazing.  He's smart and funny and sensitive and best of all, he's GOOD.  I couldn't possibly be more proud of the young man he is becoming.  Happy 7th birthday, kiddo.

I Promise

January 21 was Martin Luther King Jr. Day.  At school, my 1st grader learned all about him.  He came home and asked me a billion questions, like usual.

Then he asked, "Did Nana go to his funeral?"

Nana is Tyler's great-grandmother.  She is 96 years old, and my only living grandparent.  She lives in Rhode Island and I haven't seen her since Tyler was 18 months old.  Derek has never met her.  We talk on the phone a lot, but she can no longer travel, and with Derek, it's too difficult for us to fly out and see her.

I suggested Tyler call Nana on the phone and talk to her.

This is what I heard:
"Did you meet Martin Luther King Jr.?"
"Did you hear him speak?"
"Did you have to sit separately from other people on the bus?"
"Did you go to his funeral?"
and finally...
"What do you mean women weren't treated equally either?"

When Tyler hung up the phone, he was silent.  (This happens rarely.)  Since then, he has asked me a lot of questions about rights and equality.  I told him that, unfortunately, people will always have to fight for equal rights.  And that he will probably have to fight for his brother at some point in life.

He asked me, "Because he can't talk well?"
Me:  "Yes, baby."
Tyler:  "I will.  I promise."

The Transition

tran·si·tion  

/tranˈziSHən/

Noun The process or a period of changing from one state or condition to another.

Verb Undergo or cause to undergo a process or period of transition: "we had to transition to a new set of products".

Synonyms passage - change - crossing - transit This beautiful boy has been under my wing for 5 years now.  I've been more than his mother.  I've been his protector, his interpreter, his advocate, his nurse, his cheerleader and his teacher.  In a lot of ways, I've been his voice. Now, I'm about to let my child start his first real adventure without me.  He started his transition from preschool into kindergarten today, and will continue to go every Friday for the rest of the school year. It's time for my child to grow his own wings. And I'm terrified.   I know that at some point, I have to let my son grow up.  It's part of life.  It's a GOOD part of life.  But I'm scared for Derek in ways that I wasn't for Tyler.  I don't know what school is going to be like for him.  I don't know if he's going to make friends.  I don't know if he'll be bullied.  I am guessing he'll have trouble with the school work--but how much trouble?  And what about communication?  Will he be able to tell the teacher what he needs?  Like if he needs to use the bathroom or if he's hungry?  My fear paralyzes me. Today was a trial run.  The plan was for me to take him to school, drop him off in the kindergarten classroom with one of his preschool teachers as an aide, and return in an hour. Does anything ever go as planned? No. On our way out the door.  Derek was nervous... We got to the school a little early, which was good.  The kids weren't in the classroom yet.  Derek was fussy and clinging to my arm--until he saw the trains.  Then he started playing.  "Choo-choo!!!!" Derek found the trains. Then the kids arrived.  So did the noise. I tried to sneak out, but Derek saw me leaving and started crying.  He said, "Coat off?" which is his way of telling me to stay.  I knew that if I left, it would be an hour of nonstop crying.  I wanted his first day to be a good experience.  So I reluctantly stayed, but I tried to be as inconspicuous as possible.     Derek did surprisingly well...at first.  It helped that the teacher had prepared the class that morning, and told them about the special "Friday guest."  Everyone wanted to be Derek's friend.  And the kids wanted to show Derek the toys and play with him.   Derek's actually sharing a toy.   Derek also got to play on the Smart Board, sing and dance, and have a 3rd grader read to him.  Reading was where Derek started to run into trouble.  Derek has never been that interested in books.  He HATED being read to as a baby.  As he's gotten older, he's started to like them a little better and will look through the pictures once in a while, as long as it's at his own pace.  If he DOES let someone read a book to him, it's usually a very short book.  The book this 3rd grader was supposed to read him was long.  Derek got antsy.  He couldn't sit.  I had to hold him in my lap, and the few times he escaped he ran around the room flapping his hands.  When I caught him and brought him back to where we were sitting to read, he said loudly, "GO HOME."  The next time he escaped, he went to the coat room, grabbed his coat, and put it on.  Then he announced to the class, "Bye!" My son was done.  Luckily, it was only 5 minutes before we were supposed to go.  So I decided to let it go for the day. Day 1, done. Derek barely made it through an hour with me.  How in the world is he going to make it through an entire day without me next fall? I hope his wings grow quickly.  This letting go stuff hurts more than I expected.