To honor Rare Disease Day, 2017

Initially, the OB said he was bruised from the birthing process which I found odd because he was pulled out along with his twin, via emergency C-section.

The next day, however, we met our pediatrician who proceeded to clarify for us that our son, Judah, was not bruised but born with a permanent birthmark called a Port Wine Stain (PWS) covering 40% of his body, most of his face and skull, and carried with it the possibility of an accompanying rare syndrome known as Sturge-Weber Syndrome (SWS).

Five days after Judah was born, we drove to Johns Hopkins where skin, eye, and neurological evaluations confirmed Judah had two of the three markers for SWS: skin and eye. Neurological involvement was then unknown and since has been ruled out as much as medical knowledge can provide that assurance.

It is still essentially unknown if Judah will remain free of neurological involvement, but to date we are grateful God has not asked us to walk through those particular hardships.

Nevertheless, the challenges we have faced these past twelve and a half years have all drawn us closer to God, to each other, to our community of friends and fellow Christians who have more than done their part in shouldering this burden with us.

And by burden, I mean the surgeries, the procedures, the endless quest for a cure, the countless crossroads we have come to where decisions have had to be made on Judah's behalf--something that has at times evoked significant anxiety, self doubt and near paralysis as a mother.

But, never, never do I or have I seen or felt Judah a burden. He is such a delight to our family and all who know him.

He is a joyful, outgoing, intelligent, creative, opinionated, strong, compassionate little man who feels deeply, loves sincerely, sings sweetly, perseveres, has so many dreams for his future, is ambitious, and a conqueror.

I love this kid whose rarity exceeds his diagnosis of SWS and extends into his person-hood, his infectious smile and warm hugs.

I look at his red face everyday, left side more full with hypertrophy from the genetically mutated proliferation of blood vessels, and see nothing but a handsome gift from God.