Monday, August 13, 2012

Hope

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.  

Why?

Because the education begins now!

Wednesday, April 25, 2012

Trailblazers

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, okay...so 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?