Saturday, May 21, 2011

Timelines

We all live by them....

We hurry to get our dishes done.  We hurry to pay our bills on time.  We hurry to put our laundry away.

We scurry from one place in time to another each and every day.

Time flies whether you are having fun or not.

When you are the parent to a special needs child you still live by a time line though the scurry is often different. 

We hurry from one appointment to another.  We hurry learning one diagnosis and then another.  We hurry stretching one muscle and then stretching another.

But still, we hurry.

This week, our hurrying around stopped.

Under the worst of circumstances, a conversation brought me to my knees, and all of the world fell on my shoulders.  The dishes could wait.  The laundry didn't matter.  The appointments weren't important at that moment. 

As most of you know, the seizure monster has made his existence very known in our Matthew's life.  He doesn't seem to want to go anywhere anytime soon.  In fact, over the past week we have had two seizures that caused Matthew to turn blue. 

Matthew is not a prime candidate for a lot of cutting edge treatments currently available.  The ever popular brain surgery is not an option for us.  Matthew's seizure monster takes up residency all over his brain.  Removing the part of his brain responsible for seizures would leave nothing.  The VNS is a possibly, however, it is a scary surgery.  Matthew doesn't do well with sedation.  A day surgery can often turn into quite a big deal for us.  We are not sure a doctor would consider us for this.  We are not sure we would consider this for Matthew.  There are just too many risks.

Currently, there are only a few of medications left we haven't tried.  We are just a month shy from seeing a new neurologist who hopefully will bring a new plan to our sweet boy.  

But on to the wretched conversation....we have one doctor we trust.  ONE!  He is our pediatrician.  He listens.  He cares.  He does more than what he gets paid for.  He answers every silly question I ask (and believe me I ask a lot.)  He is simply amazing!  I had to call for referrals.  Per the usual he asked about Matthew's seizures.  I filled him in on the progression since we had last seen him.  I explained how Matthew had stopped breathing twice in one day.

He politely asked me about my CPR and First Aid.  Luckily, it is just now outdated and in the process of getting redone.  We discussed increasing one medication to see if we could decrease some seizures. 

Then......the sky fell.

He said Matthew's prognosis was not good.  The seizures were increasing too quickly, and he was not a good candidate for other treatments (see above.)  We talked about what this meant.  He told me we should be prepared and should remain guarded regarding Matthew and his seizures.

Take a moment and let that sink in.

How do you stay guarded regarding you child?

You simply don't.  You cry.  A LOT!

You lean on friends.  You hold you children and pray for wisdom.  You cry some more.  You lose sleep.  You look awful.  You think awful things.


And then you pick yourself up by your boot straps and you go on.

Because around here....no one gets to put a timeline on our child. 

Thank goodness, we have someone much bigger in our corner.  Our God is bigger than doctors and diagnoses.  He knows what is going to happen.  I have faith in His plan.

I am terrified of every single day now.  Matthew slept all night long the night after I spoke with the doctor.  He hadn't slept all night in weeks.  At 6:30 in the morning, my eyes popped open recognizing there was not a cuddly little boy in my bed and my heart started to pound.  I couldn't breathe.

Believe me, you don't want to be my friend or know me right now.  But we will get through this.

We putting a positive spin on this.  We are creating a "Matthew's Most Awesomest Things To Do" list.  Anything and everything we feel he needs to experience will go on this list, and one by one we will start crossing them off.  We are not doing this because we feel the doctors may be right.

We are doing this because in light of what they said we have come to realize that no day is to be taken for granted.  Experiences are too important to be put off because of dishes or laundry.


Our children are too important for timelines. 

So I ask you, dear blogger friends, tonight hold you children a little closer, stay up a little later, sing an extra song, and don't take another day for granted.

Believe me, we will not!

Wednesday, May 11, 2011

Radish and Rump Roast

Spread the word....


To end the word...


The R word.


Retarded.

We are hearing this word more often from television, music, sports telecasters, politicians, and friends.  Walking down the aisle in Wal Mart or sitting on your front porch, the r word is used as slang in everyday language.

Spread the Word to End the Word in a campaign to encourage the community to end hate speech.  Retarded was originally introduced as a medical term used to describe mental disabilities.  In everyday language today "retard" and "retarded" are used as slang for "stupid" in regards to people without disabilities. 

It hurts my heart.  It makes me sad. 

If you are one of the many people who use to r word in everyday language and feel it is not harmful or offensive then lets play a game. 

** Warning~~~your normal peaches and cream blog post will resume tomorrow~~

Please take a moment to scroll to the bottom of the screen.  Look into the eyes of my beautiful children.  Both of them have been labeled as developmentally delayed.  Now say the r word.  Seriously.  Continue to say it.  Say it until you can't take it any longer.

Is your heart breaking yet?  Is it fair? 

I didn't think so.

So next time you feel the need to embellish your speech with any r word try radish or rump roast.


When used as slang we are teaching our children to speak hate.  We are allowing nastiness a place in our lives where inclusion and love should reside.  It is simply not fair.



For more information on the Stop the Word campaign please check it out and make a pledge! 

Take a stand and stop the word!!!



Tuesday, May 10, 2011

Bliss

Bliss is......





Saving the world....one sidewalk at a time!

Monday, May 9, 2011

Mother's Day

Only a Mommy can wipe a dirty bottom while wrangling a squirming child and carry on a conversation

Only a Mommy can automatically know when quiet is "too quiet" and the children are officially up to something

Only a Mommy can distinguish what cry means hungry versus tired...and the always fun over stimulated cry

Only a Mommy can lose all sense of embarrassment in order to keep the sanity of a two-year old while grocery shopping by singing and acting out "I'm A Little Tea Pot."

   We shop on Fridays folks, in case you wanted to see the show

Only a Mommy can function on little sleep with little sanity and still function with a pot of coffee and a lot of sweet drooly kisses from two delightfully delicious babies!!

He blessed me by marrying me.







He made me a mother.






She completed our family.



We had a magical Mother's Day!!!

Thursday, May 5, 2011

Seizure Monsters and Magic Swords

As children our parents taught us to not fear the monsters that lurked beneath our beds.
They taught us the scary things in our closets were figments of our imaginations.
Our parents made certain we understood that in the darkness was only the darkness and nothing more.

As parents ourselves we have come to know better.
Sadly in our home the monsters do not hide.

The seizure monster is here.

All.  Day.  Long.

He sits at our dinner table.

When I look into my rear view mirror I see two beautiful babies and him.

In the middle of the night he is there.  
He follows Matthew everywhere Matthew goes.

We hate the seizure monster.

We fight him daily.  We yell at him to leave.  We slam the door in his face only to spin around and see he has somehow returned.  We hide beneath our blankets and wait for the sun to come out.  For goodness sakes, this is what worked when we were kids.

As adults, this solution is not so easy.  He still lurks in the night.  He lurks in the daytime. 

And now the seizure monster is threatening to lurk into our daughter's life as well.

Soon we will be undergoing a sleep study and video EEG to rule out night time seizures.  Autumn's night terrors have continued, and her doctors want to make sure we are not seeing seizure activity.

How did this happen?

How is this fair?

He already invades our sweet boy.  He already attacks Matthew hundreds of times a day. 
Why does he have to attack Autumn as well? 

I could throw a pity party and ask all of you to send me your very best pity gifts, or I could pull up my big girl panties and deal with this. 

I guess I have indulged enough feeling sorry for my family. 

Today, we will pick up our swords.  We will fight the beast in our closets.  We will fight him from underneath our beds.  We will never stop fighting. 


Please say a prayer for us.  And if you happen to see a magical seizure monster slaying sword laying around somewhere.....well you know we are taking stock!

We will NOT lose another moment to seizures!!

Tuesday, May 3, 2011

Bliss

Bliss is....





Your first dance with your daddy!!!

Monday, May 2, 2011

Pediatric Stroke Awareness

May is Pediatric Stroke Awareness Month.

Pediatric strokes impact the lives of six in 100,000 children.  It is one of the top ten causes of death in children and causes many neurological problems.

Pediatric strokes do not discriminate against race or age and even affects while a baby is still in the womb. 

This is what happened to our sweet Autumn.  She suffered a stroke to her spinal cord while still in the warmth of the womb and as a result is paraplegic.

The causes of stroke for children are far different than those in adults. 

The Ischemic stroke occurs due to blockage of an artery.  This is usually because of a blood clot. 

The other type of stroke affecting children is known as the hemorrhagic stroke.  This occurs when a blood vessel in the brain breaks open or develops a hole.

The results of strokes in children are many of the same results we see in adults.  The intensity of the stroke and area affected determine the long term effects.  The difference seen in children, however, is that children's brain are still developing.  This allows for other areas of the brain to "take over" and "make new connections" in relation to development.

In honor of Pediatric Stoke Awareness Month, lets spread the word!  Pediatric stoke has probably effected someone you know.  Read the literature.  Brush up on the research.  Share your knowledge and get the word out.

Share the blue and purple this month!

For more information on Pediatric Stroke check here or here.