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  Luckily, it is just now outdated and in the process of getting redone.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!

2 comments:

  1. Oh my dear - how your heart must have stopped when you had this discussion. I pray for you, for strength and courage, and for the ability to give Matthew the very best life possible, for as long as he lives - and no one can predict that. I have a child (9 this year) and I was told when she was six months old that she had weeks, possibly months, to live. But the fear that it puts into your heart is not easy to escape, and so I have to leave her life expectancy in God's hands, and try to made her days happy ones. I will be praying for you all. God bless.

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  2. Wow is all I can say. I cannot imagine living with this fear and pain for your sweet boy every day. You are a hero. Praying for you and your family...

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