Knocking

It is amazing the strategies that you will formulate, the inventive ways you will find to do things, the drive that pushes you when your adrenaline kicks in. We've all been pushed up against the wall, pushed to our limits, thought there was no way out.  From time outs to grounding, to losing a job.   Whatever your wall is, we've all been there, from children to adults. When it seemed hopeless that there was no way out of the situation, you found your way.  The first breakup, when you felt like life would not, could not go on... do you remember?  You found your way out of the situation, life went on and still does.

At first with Jack's health we didn't really say much to anyone.  As crisis' arose and we started to realized that nobody really had answers we started to talk. A friend who has stood by our side from day one, who actually brought Jack home from the hospital...story for another day... reached out and asked her pediatrician what would she do if this was her patient?

Her answer was the NIH.  The National Institute of Health is a government agency directly responsive to Congress who is responsible for the medical research of the United States of America.  Um, ok... so how does this fit into our picture?  The NIH houses a division, rare and undiagnosed disease.  They accept about 50-100 patients a year, gathering information for the advancement of medicine in the US.  They have access to information and potential cures and treatments before they are released to the public medical system.  We felt pushed up against a wall where Jack was concerned, we were ready to try anything.

So, we knocked on that door, and they answered.  Their answer was yes.  Yes, they will accept Jack as a patient with the belief that they can help him and advance medicine to help other children in the future through him.   Again we find hope.  It took a year of back and forth sending records, even hair samples to reach this point. 

In the fall, we will travel to the NIH with guarded anticipation and hope.  We will not give up, we will not let our boy go without answers.  A flood of mixed emotions fills our family.  We are scared, yet hopeful.  Doors are opening and we are walking though, lead by hope and love for our boy.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you"

 Matthew 7.7