Monday, August 13, 2012


Lately I have been thinking a lot about hope.

The word is in the songs we sing.  It is in the words people use to encourage us.

Hope was once a word I used to express expectations for my children.

I hope Matthew can sit unassisted one day.  I hope Autumn can "walk" in whatever way that may be.

Now, hope has a new meaning.

The past three weeks have been a whirlwind.

It all started on a Sunday.  Matthew woke up from a nap seizing.  We hadn't seen a monster in four months, so we were immediately concerned.
Diastat was needed.  It didn't help.

So off we went to our local ER.

There he was given Ativan.  That seemed to eventually have an effect.  Several hours later we were home with a loopy boy.  We honestly believed this was a freak occurance.

Fast forward to the next Friday.  Again, Matthew began having a seizure.  This one was a nasty one.  Diastat was given.  Again it didn't work.  And off the our local ER we went.
There he was given Ativan.  This time it had little effect.

The doctor ordered blood work and a CT scan.  After several hours we were care flighted to Cook's.
Upon arriving to Cook's Matthew had an even scarier seizure.  And he had several episodes of apnea while being monitored.
More Ativan was given.  Then Dilantin.

Eventually we were sent upstairs for a night of observation.

Saturday, Matthew seemed fine.  The seizures were still happening, but everyone was comfortable sending us home to follow up with our Neurologist on Monday.
Monday came.  A call was put in the our Neurologist.  He directed us to go back to the ER.

So we went again.  We waited.  Seven hours we spent lying on a bed in our local ER.
The doctor that was there was the same doctor we had seen on Friday.

We asked me to look at the CT scan with him.  He showed me every frame of my sweet boy's brain.  He then said it appeared Matthew had increased pressure.  We needed to follow up on that.  He also said that Matthew's brain was pretty much "mush."  He not-so-nicely told me that Matthew was not going to ever get better and that I should just deal with it.

And my heart is still laying in a million pieces on that ER floor, I'm sure.

After several calls back and forth to our pediatrican and a visit resulting from fever, we have decided to increase Matthew's Depakote level and "wait things out."

We have an upcoming appointment with our Neurologist later this month.

And suddenly the word hope has taken on new meaning.

Hope is a funny thing.

Before, my hopes for my children revolved around what I wanted them to accomplish.

I hope Autumn falls in love.  I hope Matthew is able to communicate with us.  I hope they both have the opportunity to play on a sports team.

Now, my hopes are different.  They aren't tangible outcomes.

I hope Matthew wakes up every morning and goes to sleep every night knowing how much we love him.
I hope he continues to always laugh when his sister cries.
I hope Autumn will never feel second best as her brother needs a bit more of our attention.
I hope I never fail either of them as a mother.

And I sit in a state of limbo.  I want to hope for the future.  I want to daydream about my children's destinies.
And yet, I am scared of what lays waiting for us.

Matthew's future has always been outlined in reality.  We understand the ramificiations of what hundreds of daily seizures due to an already overwhelmed and underdeveloped brain.  We understand that as he gets older and bigger, many things will become much harder for him.
Yet, we never viewed our lives or his in that manner.

We are children of a loving God.  We know who the ultimate healer is.  We have put our hope in knowing that everything works out for our best.

Though those things still hold true to our hearts, we have had to face some questions that we were naively not ready for.

And suddenly every single day seems so precious.

And all we have to hold on to is hope.

Now, this is not meant to be a sad blog post.  This is our life.  It is real.  It is raw.

We refuse to cry ourselves to sleep worrying about that which we cannot control.

Instead we are creating a "Matthew's Most Awesome List."

This list will be our family focus.  We want to insure we provide our children with experiences they deserve.

Let's face it:  Life is precious for all of us.

And I promise to try to blog more often.  I took a hiatus to try and find my blogging self.  I wanted to be a writer, and I felt that my writing was becoming very sad.  I don't want to do anything but give other people hope in the middle of their journey.  I want to be able to be open and honest.  And I hope that is what you blogger friends find here.

 Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all.  ~Emily Dickinson

Til Next Time....

Monday, April 30, 2012

Autumn's Pageant Weekend

This weekend Autumn participated in a pageant.

It wasn't a crazy pageant with spray tans or $1000 cash prizes.

No, this was a down-home local area pageant for fun.

We dressed up.  We tolerated the heat.  We made new friends.

All in all we had a blast.

The pageant was on Saturday afternoon, and the crowning was on Sunday.  Every single girl that participated received a title. 

Love that!

Autumn 's title:  Most Stage Presence

Now, this is the ironic part.  Autumn could not actually be on stage.  There was no ramp.  We "modeled" on the grass next to the stage.  The grass was hard for her to push through, and she became frustrated.

At first, I was stumped that there was no ramp.  I called a head of time to inform them we would be in a wheelchair.  I thought that was enough.

However, I am daily reminded how inaccessible this world is.

In Special Needs-topia everything is accessible.  We maneuver around the obstacles.  We find the easiest route.  We park close to the doors.  We get tables in the back with more room around them.  We have managed.

Yet, there are parts of the surrounding "Normal" world that doesn't cater to different abilities.

I could be mad.  I could throw a fit. 

It wouldn't matter.

The problem is not that the world refuses to acknowledge chair users, tube users, or any other users.  The problem is we don't take the time to educate them. 

We get mad.
We stomp our feet.
We throw a fit.

We waste perfectly good opportunities to empower and educate this world.

We are too busy looking at what is wrong instead of acknowledging what could be done.

I'm not saying we are the problem.  Special Needs-topia exists.  We are loud.  We are proud.

I make absolutely no excuses for my children, their chairs, their tubes, their "accessories."
It is who they are.  And I am proud to be their mother.

And I have been known (a time or seventy) to roll my eyes and mumble under my breath when we are again reminded of the fact that we are different. 

But, I don't want to leave that legacy behind. 

We cannot expect the world to understand the needs for our children if we do not understand that those needs are foreign to them.

We did not wake up one day and immediately understand Algebra.  No, it took classes, tutors, and tests.
And if you are anything like me, a few really really bad grades.

We all have to learn.

So, this weekend Autumn was in a pageant.  A small pageant.  A pageant where she was not able to be on stage due to the lack of a ramp.

Next year, there will be a ramp.  


Because the education begins now!

Wednesday, April 25, 2012


Have you heard about this story?

What about this one?

Or even this one?

What is happening in our schools?

And these are relatively recent reports.

This isn't about being a parent to a student with medical needs.  This is about being a parent!

We MUST do something.

We MUST advocate for our children and their well being.

School is supposed to be a safe place.  It is intended to be a place of learning, a place to play, a place to interact.

Now, for many parents, it is the place of nightmares.

Even in a small town theses things can happen.  They do happen.  They just do not get brought to the public's attention.

And as a parent to a child in school and a child six months away from entering school, I am terrified.

So what can we do to stop the abuse?

Take Action!

First and foremost, be an involved parent.

Now, I am not saying these parents weren't involved.  In fact, I believe they were very involved.  That is why we know their stories.  That is why we can stand up with them.  I believe these parents are trailblazers in a movement of inclusion and equality of treatment in schools.

 How do we stay involved?

Volunteer.  Be at the school, with your child, when you can.  Educate yourself on their day.  Talk with your children.  And above all else, listen. 

Secondly, stand up and speak out.

If you think there is something a wry with your child's care at school, then ask.  Ask for answers.  Demand a meeting.  Get to the bottom of what is happening.  Some of these parents fought for six months to get answers.  Some of them had to wire their children.  Some of them did things that were uncomfortable and out of the ordinary to ensure their children were been treated with respect.

Last, know your rights!

Wrights Law has an abundance of information regarding children with special needs.

Safe Child also has great resources regarding education and bullying.

And there are many more...

Please don't forget to praise those individuals that stand up for you in your absence.  Maybe your child has a tracker.  Maybe your child's teacher is a front runner paving the way against bullying.  Praise them.  Thank them.  Get involved with them.

We Must Stand Together!

Okay, that was a little intense.  How about a Ryan Gosling comic to make you smile before you hit the road running on your way to advocate for your child?

Tuesday, April 24, 2012

Baby Making...Progress?

This week is Infertility Awareness Week.

This week recognizes those of us who struggle to conceive.
This week recognizes those who have struggled in the past.
This week recognizes those miracles some of us hold in our hearts and in our arms.

And this week we were supposed to be able to conceive, granted we ovulated.

Which we did not.

That has always been the problem

What is to blame?

Polycystic Ovarian Syndrome

PCOS is a common hormonal disorder in women that is characterized by numerous cysts on the ovaries.

In other words, my ovaries are apparently very mad at me.  They light up like the fourth of July on a sonogram, and they do not want to be messed with.

PCOS is painful, physically.

Emotionally we are a rollercoaster!

We are trying everything that is in our power.

We have started taking multiple vitamins.  We are drinking more water and much less caffeine.

We are eating fertility boosting foods.

And yet, my body continues to say no.

We are spending a lot of time in prayer preparing our hearts for God's will.

What's the next step?

Medical intervention.

We will start that process in May.  First we will have check ups.  Then we will start a six month round of Clomid.

All the while, preparing for God's will.

We are blessed beyond belief to be parents to our two babies.  We know God has more children in store for us.

We are prepared for the fact that those children may join our family by adoption.

And we will praise God every step of the way.

Infertility is mean.  It doesn't discriminate.  It can ruin friendships, relationships, lives.
Infertility can leave a woman feeling less than a woman.
Infertility can ruin a great day.

But, at the end of the day, what we must remember is that infertility can not beat us!

If you have never struggled to conceive, please don't feel guilty.
Infertility affects one in six couples.
Chances are you know someone who is facing this very disease.
Hug them.  Join in their journey.  Encourage them.

If you are struggling to conceive, don't lose hope.
God has a plan for our lives.
He wants us to prosper and receive the desires of our hearts.
Keep trying.  Keep praying.

If you once struggled to conceive and come out of the other side, congratulations.
Its a long road.  I'm sure the most you traveled alone.
We are grateful for your survivor stories.

Happy Infertility Awareness Week my fellow friends

Let's kick infertility in the rear!

Monday, April 23, 2012

Where Does the Time Go

Sometimes my inspiration comes from the strangest places.

Just like today...

As we are sitting down for breakfast, Autumn is once again refusing to eat.  This is a battle we have fought for a while, and I am speculating we will be fighting a while longer. 

We are arguing.  I am losing.

And at just the moment when I am about to accept my condolence prize, Autumn announces "Mommy, twoooo bites!"  While saying this, she holds up the accurate number of fingers!

This may not seem impressive to anyone else.  However, we are currently working on counting.  She is a fantastic mimicker.  She occasionally will start counting by herself, though those moments are few and far between and always begin with 8, 9, and 10.

But today, today she held up her two fingers.  She announced she was going to eat two more bites.  She then indulged herself with the remainder of her cereal. 

I may be proud of her counting abilities, but who am I to keep her from finishing her breakfast!

These moments are happening more and more.

She is growing right before our eyes.

Yesterday she spent the afternoon outside helping her daddy work on his truck.  When it was break time, she sat in a big girl chair alone and enjoyed herself her very first sonic drink (that was not otherwise poured into a sippy cup).

And I think my heart broke just a little.  

When did the time go by so fast. 

Her language skills are developing quickly as well. 

She is now forming sentences.  She engages in conversation, though her side is mostly excited exclamations and giggles.

When being told to finish a task, her response has become "Okay Mom."

Okay, I will admit, the "mom" portion of that sentence totally breaks my heart.  I am still occasionally "mommy" but with a big girl comes more grown up words, like "mom."

And her new favorite word(s) to describe something are "cute" and "super cute."

Yep, our toilet is not officially super cute!

This week will mark two years since Autumn came home.  That means that on Saturday she will exactly two and a half years old!
April 25, 2010

April 15, 2012

I wish she could stay little.  I wish she would always be mommy's little girl.

However, watching her grow is one of my absolute favorite things to do!

Happy Monday blogger buddies!

Thursday, April 19, 2012

Planting Flowers

I can't even believe Matthew has been in school for a week!

He is loving it!

So far he has acquired on entourage.  A group of kids politely follow him around on the playground all the while asking if they can push him.  They talk about his hair, his shoes, and his awesome smiling skills.

I am loving that he is loving it!

I must admit, though, I am a teeny bit sad.

You see, around 11:00 AM, just an hour before he heads to school, Matthew starts to cry.

Mommy-mode kicks in.

Maybe his tummy hurts.

Maybe its his ears.

He didn't sleep well last night, maybe he needs a nap.

And I remind Josie that if he doesn't feel well just to bring him back home.

Only she doesn't.

Would you like to know why?

Because around 11:00 AM, just an hour before he heads to school, Matthew starts getting excited about school!  The crying immediately stops once he arrives at school.  Each and every day he has so much fun once he gets there, that we witness this smile!

Come on now.  Isn't that the biggest grin you've ever seen?

My heart aches a little, though.  I wasn't aware that my big guy going to school would suddenly make me feel slightly less important.  If your children have ever headed off to school you know the feeling.

Its a tiny uncontrollable twinge of guilt knowing your child is having so much fun and learning so many new skills.  I want him to want to go to school.  I want him to have fun.  I want him to learn new skills.  I want him to acquire an entourage.  I love that he is doing so well!  

 I just thought that Matthew would need time to adjust, that Autumn would need time to adjust.  I didn't factor in that I would, indeed. need time to adjust.

However, last Friday when I relieved pictures of Matthew planting his very own flowers, nothing but pure bliss filled my soul.

My little guy planted flowers.  My little guy tasted the soil.

His teacher even emailed me the pictures and commented on how sweet he is.

All in all, I am unbelievably happy to report that Matthew has already made an impression.

Although, I really didn't expect anything different!

Wednesday, April 18, 2012


I had a funny post to write today.

It was full of sarcasm and wit.

It was short and simple allowing me to continue on with the busyness that lies waiting for me.

Yet, somehow those words aren't coming to me.

Instead I sit here typing, wiping away my tears.

Being a parent to a child with medical issues causes the colors of the world to shift.  Sometimes you see the sky as pink or green.  Sometimes the birds "meow" instead of chirp.  Things are not black and white.  In fact, the majority of life becomes a rare shade of grey.

Being a parent to a child with medical issues forces parents to understand the five stages of grief much sooner and much differently than normal.

Being a parent to a child with medical issues, sometimes means you have to say goodbye to your children much sooner than you wanted.

And sometimes you witness your friends do this and your heart breaks.

Through our journey we have met many inspirational people.  People we have come to love.  People we have come to cherish.  People we can't imagine not "doing life" with.

And this week we said goodbye to one of our own, while Heaven opened its arms and welcomed a sweet spirit into the gates.

The Evans family said goodbye to Emily on Tuesday evening.  She was too young, too beautiful, too inspiring.  And now she is no longer hurting.  She is finished fighting her fight.

Though her family grieves.

Please keep this beautiful family in your thoughts in prayers in the next coming weeks.

Please tell the ones you love just how much you love them.

Please don't take any day for granted, for we never truly learn when the Lord will call us home.  

Tuesday, April 17, 2012


Nine years ago today, as I walked down the aisle, I was nervous.

I wasn't sure how to be a wife.

In fact, I burned our very first married meal.

I knew I was in love, but marriage was work.

We struggled that first year.  We lived off Ramen noodles and hot dogs.

We learned how to organize our finances.  We learned how to overcome disagreements.

We learned how to truly love one another.

As I type this, I am still as madly in love with Brandon as I was nine years ago.

I have seem him grow into an amazing husband and father.

I have watched him win arguments just by making me laugh.

I have found how to be a wife simply by loving him every day.

Today, still, he is my best friend.  He is my partner in crime.  He is still other half.  He is my comic relief.

In honor of nine wonderful years with Brandon, here are nine things I love about him.

1.  He is funny.

2.  He is kind and tender hearted.

3.  He still gives me butterflies.

4.  He's always a good sport.

5.  He helps anyone and everyone.
       One year around Christmas, a man Brandon barely knew had car trouble.  Brandon had a job that required him to be at work at 9:00 am.  He stayed up all night long in the snow just to help this family out.

6.  He loves deeply and truly all the time.

7.  He works hard for his family.

8.  He always puts others before himself.

9.  He is the best father I have ever met.

Happy Anniversary babe!  I love you always!  Here's to ninety more years with you by my side!!

Monday, April 16, 2012

Super Matthew's Super Hero Party

Matthew had an AWESOME Super Hero party yesterday!

We had candy.

We had cupcakes.

We had capes.

We had secret identities.

We saved the day one superhero at a time!

And Matthew was in great spirits.

He received tons of presents!

And even had a little bit of frosting!

We are so blessed by everyone who came to help us celebrate our very own Super Matthew.

I still can't believe he is three!!

Friday, April 13, 2012

Six Little Lessons

This week Matthew turned three.

This week I turned twenty-nine.

Next week I will celebrate nine blissful years of marriage.

In the past few years I have learned a lot.

Being a parent to a child with special needs child has the ability make time fly.

Your days get scrambled between IEPs, doctor appointments, therapies, and trying very hard to remember to put on deodorant.

While the days are flying by and your leg hair continues to need its own straightener, you learn a lot.

Medical terminology you once thought was a foreign language becomes everyday jargon.  You begin to be able to not only pronounce your new language, but you can now spell words on a whim.

Life takes on new meaning.

And we learn new lessons.

1. It is okay to say no
              Just because an extremely expensive therapy worked for someone else does not mean it is going to work for you.  Even the best parents need a break.  Sometimes a pajama day rejuvenates your entire house.  Learn to say no.  It will change your life.

2. The internet is your friend and foe
              When we first brought Matthew home I scoured the internet to find all the information I could about his diagnoses.  I spent late nights and early morning reading horror stories.  I was a wreck.  I was depressed.  I had lost hope.  I stopped googling things!  But I have also found hope in the faces of those friends who share our journey.  Facebook and this blog have allowed me to connect with parents who inspire me.  They make me smile and warm my heart.  We celebrate together.  We mourn together. We are never alone.

3. You have to wear your big girl panties
             If you are not the type of person who stands tall and speaks out, you soon will be.  You will learn to trust your instinct.  You will put your children and their lives at the top of your priority list.  You will scream at doctors, nurses, spouses, and friends.  You will make waves.  You will lose friends.  You will be better for all of it!

4. The medical community does not "know it all"
            We are programmed to believe that the people in the white coats know everything.  We trust them.  We depend on them.  We are wrong.  You will become the most knowledgeable person regarding your own child.  You will teach the teachers.  You will have to explain it over and over and over again.  You will learn that the feeling in the pit of your stomach is so much more important than what ends up being scribbled on a prescription pad.  You will doctor shop.  You will search for the best of the best.  And when you find them, you will see them so often that they will become a permanent address on your Christmas card list.

5. The little things matter
             The day my son held a yellow plush ball in his hands for ten seconds was celebrated.  The day he screamed and screamed because he was bearing weight on his legs and standing should have been announced on the nightly news.  The little things, the inchstones in a world of milestones, become all you strive for.  Your heart will soar when your child first does something no one thought they could. You appreciate the department store that has aisles big enough for your wheelchair.  You make friends with the waitress at your favorite restaurant because they don't flinch when your child has a melt down.  You cry at the thoughtfulness of a friend who simply texts you and says "You are doing better than you think."

6.  Somehow it all works out
                In this special life, the world is unfair.  Our children suffer.  They cry.  They take numerous medications everyday simply to keep the seizures at bay.  And even then the medications don't work.  Yet somehow at the end of the day when our lovelies are snuggled in their beds, the world seems better.  We made it through another day.  Our children smile at us, and the ugly from the day fades. When we find ourselves in the valley, when we can't find a way out, there is always a helping hand.  Someone pulls us up and helps us out.

I know that the lessons from our journey are endless.  I know that some days its so much harder to see the forest through the trees.

Yet, as I look back at this week I am blessed to have learned these lessons. 

Thursday, April 12, 2012


There are few moments that when traveling this "special" journey that make my heart hurt.

Generally they are tiny things.  Situations other parents some times take for granted.

They are daily activities that are almost guaranteed in a different life.

My first heart break came when Matthew wasn't able to swing at the playground.

It was at the beginning of our journey, and I didn't understand why the world was not accommodating.

Luckily, we were blessed by our ECI team with a "hammock" swing.

And Matthew played in his swing in our living room for hours.

Then, last summer, we were blessed again with an opportunity to go to Morgan's Wonderland.

Matthew was able to swing again.  Twice even!

And my heart was full.

Recently, Autumn learned about bicycles.  She has asked repeatedly for one when we are out shopping.

She begs.  She pleads.

I can do nothing.

Our average shopping centers don't accommodate for Autumn's needs when it comes to most leisure activities.

Again, my heart broke.

And once again we were blessed.

We are currently the "loaner" owners of a very stylish tricycle.

Last week Autumn received it, and within that first day she already had it mastered.

We even had to unlock it so she could turn it herself.

After the first day, we bought a helmet.

Hello Kitty, of course, in honor of our sweet friend Emily.

Once again my heart was full.  I was overjoyed and overwhelmed by the love we receive from those around us.

I am so proud to watch my daughter enjoy her very own bike ride.

Wednesday, April 11, 2012

School Days

Matthew's first day of school went wonderfully.

He started celebrating his birthday around 2:00 AM, so I was unsure how the day would go.

To my surprise, after a tiny morning nap, he was all smiles for the big day!

I had sat his things out the night before.

Cute outfit~~Done
Feeding bag~~Done

Mommy's nerves~~Sky high!

At lunch we traveled the few blocks to the school.

We took our time getting him in his chair.  We strolled up to the door.

This mommy was not in a hurry for her little guy to get so big.

But we were greeted with all smiles.

I was instantly put at ease.

I felt as if I was leaving my SuperHero in super hands.

Of course, Josie was there with him.  I know she has only the best in mind for Matthew.

As Autumn and I were getting in the car to head home, Autumn started crying.

Her lips pouted.  She whined.

And her response to my questioning her was "Bubba, Josie, bye-bye."

She cried all the way home.

I wasn't aware the impact Matthew going to school was going to have on her.

The three hours we waited to pick him up from school flew by.

We showed up to check on him a few minutes early and found him playing.

 He came home with a birthday card from a classmate and lots of stories about all the fun things he did today.

Then he slept for two hours!

School must have really wiped him out!

All in all, I think Matthew is going to rule the school!

Tuesday, April 10, 2012

Matthew Turns Three

Three years ago today, in a hospital room not far from here, our son was being born.

Three years ago today, Matthew's birthmother was making the hardest decision she would ever have to make.

Three years ago today, we had no idea our son was born.

Yet today, this day brings celebration.  
Our big rockstar is three today!


And while he was a mere dream to us, the day he was born, we are forever grateful for his dear birthmother's couragious choice.

At three years old, Matthew is anything but typical.  He is also anything but ordinary.  

At three years old, Matthew loves to chew on his hands.

He enjoys rocking out to music.

He still laughs when his sister cries.

He may not sit, or stand, or walk, but he is truly our miracle.

He is determined and strong.

He has opinions and a seriously cute personality.

Special needs do not define him.  He encompasses the word "SPECIAL."

On this day we celebrate three beautiful years of his beautiful life.  

And it just so happens this is also his first day of school!

Happy 3rd Birthday Baby Boy!

Thank you for blessing us each and every day!

Monday, April 9, 2012


Happy Monday blogger buddies.

I am hoping that you all had a fantastic Easter weekend.

He is Risen!

Pepaw & SueEllen came to church with us!

Checking out their loot!

 NanaNana helping Autumn gets eggs!

My family!
We enjoyed the beautiful weather, the company of family, and time with our little bunnies!