Thursday, March 5, 2015

Every Child is Uniquely Different Despite a Text Book Diagnosis

It is common knowledge that every child is different.  It is something that parents embrace and use as a tool to calm ourselves when our child may walk later than others, like when one of my children didn't take her first step until she was 15 months old, she didn't even like standing or try to stand until 14 months old.  But she was not my first or even my second and so I reminded myself that each child is different and I knew that she would stand and walk when she wanted too.  Besides she was doing other things, like climbing lol.

When we have a child with a rare diagnosis we tend to forget that each child is different and we instead go by what the doctors say is going to happen and by what the text books say is going to happen.  We even will go by what the internet will say is going to happen or if there are other children that we know with the same diagnosis (or even similar diagnosis)-we go by what they say is going to happen.  What we fail to remember is that every child is different.  And while you and I may have children with the same diagnosis or very very different diagnoses, we do face similar situations.

"A Doctors Predictions or Text Book Diagnosis, Does NOT a Stone Course In Life Make."  

When our doctor told us in January 2014 that Avagrace had a year to live, I tucked it away in my mind.  I listened and I knew that this was something that I needed to deal with and accept.  However, I also knew that GOD is the only one who ever knows what the future holds and how many breaths we will take while we are here on earth.  Fortunately, I can say that while she is still the same girl with the same diagnosis, she is also stronger than she was a year ago!  I don't mean in the "she's healed" sense, but rather in the determination and mind-set sense.  Although, getting the VNS out did bring some healing, it also was no longer on board to stop some of her most regular seizures.  (good and not so good in everything right!)  So, Avargrace is stronger in many ways.  Her heart is handling the seizures better and she is more determined to power through her set backs.  The text books would say that when the regression happens, the child will likely continue to regress and not regain what is lost.  In our case, Avargrace will regress and she continues to regress but she also regains what is lost even if it is only for a short time before she looses some of it again.  The amazing thing is that certain memories are stronger than others and her adaptive skills have always marveled us.  While she may not tie her shoes the way others do, she CAN STILL TIE HER SHOES :-) in a way that she created because she saw the end result and was determined to get to the end result even when the way we taught her didn't make sense.  

Avagrace is still developmentally between the ages of 4-6 (she is going to be 11 this summer).  But when talking to her you wouldn't be able to tell right away.  And while our days change literally from one moment to the next...she can be in the wheelchair unable to move half of her body or talk and then later that day or week she is able to skip...there is one thing that doesn't ever change.  

And that is that she is a unique individual who was fearfully and WONDERFULLY made, by our creator.  She was given her amazing personality and she is in HIS plan.  Each and every single person on this planet is in HIS plan.  Your child is a PRECIOUS GIFT FROM GOD.  He did not make a mistake creating them and they were not flippantly or coincidentally given to you.  God chose you for this very special child.  He made you and your child a perfect match to show the world what He is made of.  

He is made of JOY.  Joy is something that we all have the ability to have, if only we change our perspective and hold on to the choice that we are given to experience HIS plan!  He didn't promise that we would always be happy about it or that we would ever be happy about it.  But He does want us to see the Joy that comes new each morning.

He is made of LOVE.  To love another with no expectations.  To not look at your child and think, you should be doing this.  Or I wish I had this from you.  But to instead see how amazing it is to have the connection that you do.  To be able to meet their needs and show them what LOVE is and what LOVE feels like regardless of the number of breaths that they are given.  

He is made of POWER.  God's power is beyond anything that we can imagine or fathom.  He is able to create and it is able to heal.  He is able to chip away at a bitter and hardened heart and make it soft and pliable.  He is able to use your child's unique life to change the lives of one nurse, one doctor, one friend, one person walking down the street.  He is also able to use your child to change the hearts of millions.  Your child has a purpose.  Even if your child never uttered a single cry or sound.  God does not need us to do anything to accomplish His plans.  But when we open ourselves up to be used by HIM and we realize that our children are actually HIS children on loan to us, well that is where the real power lies!

As for our children, who are each different and unique and not defined by a diagnosis or a doctors prediction.  Our children are the utmost example of what it is to LIVE for HIM and HIM ALONE.  Let that sink in.  Many of our special children do not have "free will."  They are limited by their bodies, their minds, etc.  And while everyone is born with free will spiritually.  It is especially hard for someone to act on free will that does not have the ability to act on sheer determination.  They are living in HIM, for HIM, and by HIS WILL.  

It is not the doctors nor the diagnosis, not the science nor the averages of case studies that determine how their bodies will live with their diagnosis.  Each and every child, each DNA, each environmental factor, each treatment plan, each and every factor that plays a part in this child's life plays a part in that life.  But ultimately GOD is the one in control and HE is the master physician who will give life and bring life back to Him.  So seek Him with all of your heart and I guarantee that if you do, you will find HIM, and His peace that surpasses all understanding.  

I know that Avargrace and all of my children are here on loan from the ONE who created them.  I know that according to the science she will not have as long of a life as her siblings may have.  But I also know that I will not know when any of our "times" will come.  And so I snuggle them all a little more and remind myself to be grateful for each moment, even when I am separating an argument for what feels like the 50th time today or trying to follow along with my long-winded child's story that started over 30minutes ago (I have no idea where they get THAT ANNOYING HABIT FROM). ;-)  

So please, do not be discouraged in the comparison game.  It is easy to teach that to daughters and sons in who may be self conscious.  But trust me when I say that it is even more difficult to heal from the comparison game casualties when you are thinking about a special needs child and your expectations or dreams, than it is to change your perspective on your own self-image/worth comparison game scars.

*Peace and Joy do not mean that their is no grief or sadness.  Peace and Joy are the constants (the anchors) that uphold us when our emotions of grief and sadness try to pull us under.

No comments:

Post a Comment

All comments must be submitted in a kind and respectful manor, this is family-friendly blog and all comments must be rated G! Thanks and happy posting!