May the odds be ever in your favor?!?

"May the odds be EVER in your favor."

-The Hunger Games

When it comes to having a child with BRBNS, the odds truly are in your favor. So what are the odds anyways?You have heard me say how rare Jacob's condition is. How rare is rare? What does that mean exactly? We have been told there have only been about 200 cases ever reported in literature of BRBNS since the condition was identified. There are currently about 150 people with BRBNS...in the world. So, this brings us to the odds.

                                                                     1 in 50 million

That is the odds of our child having this disease.  We joke that we should have let him pick lottery numbers, but in truth, these odds have brought me many a "Why?" Why my child? Why our Jake? There is no answer to that, nor do I presume to even be right asking the question.  We know our boy is special, and hold onto hope that God has something very special in mind for our son's life.  I think every parent hopes for their child to be exceptional in some way, but this is not what we had in mind.  As stated in the previous post, we pray for a miracle for our boy, but understand that that may not be God's will.  If this is the cross he will bear, I refuse to let that define him. He will be exceptional, as all my children are. Because he is Jacob. The uniqueness of him, aside from this one in a million condition, makes him special.

The way he says, "I hold you, Mama."

How music has a way of calming him.

How he loves the moon, going over bridges, and playing with cars and balls.

How he loves, (and even yells at) his big brother and sister.

How proud he is of being a big brother, and how he loves his "Lukey"

 How he gets his great grandmother's treats off the dessert table at Nana's.  And how he has everyone in that house wrapped around his finger.

How he looks when he's mad.

How the light hits his blond hair, and the impossible length of his lashes.

How much he looks like his father.

The single dimple in his right cheek (my one and only contribution to his looks).

Those things, and more are what make up the beauty and uniqueness of my Jacob.  Not his blue spots. I pray everyone he meets will see those things that make up who he is, and not define him by the condition he carries. I pray I will always see him, and not my fear of what could happen to him.  I pray his spirit will always rise above his condition, and never be broken by it.  I believe that he will be given reserves of strength that I don't understand, to face any physical difficulties.  I pray I will as well. I hope we will be the parents Jacob needs, and might be used in the greater plan for his life.