Our trip to Disney World was not my favorite part about last months vacation, these photos are! Aside from having consultations with doctors, lectures from specialist and workshops with other SWS families the 2011 Sturge-Weber Conference collaborated with a former NYC fashion photographer Rick Guidotti and his program Positive Exposure! In a nut shell, Positive Exposure "support and promote human dignity through Positive Exposure's Spirit of Difference photographic image data bank and video interviews of persons, particularly children, living with genetic conditions." Brie having Sturge-Weber was asked to take part, Rick's energy and enthusiasm was infectious,he truly has a passion for showing the world the beauty in people's physical differences! We were thrilled to join in his cause, and even more thrilled to have these precious pictures of our sweet BrietoEveryday I thank God for this little girl, Psalm 139:14 says "I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works"! Indeed I praise Him, because Brie is marvelous! Her outer beauty is apparent, but her inner beauty is still blossoming. Which is why it is a daily journey of faith for Robert and I to train this sweet girl in the way's of the Lord. It is our prayer that Brie would grow to love the Lord with all her heart and use this tool He has given her called Sturge-Weber to glorify God.
Which makes it even more difficult for Robert and I to decided whether or not to have surgery on Brie's cheek to lesson the appearance of her Port Wine Stain. Making decisions like this for my child, is the hardest part about being a parent. Thankfully, scripture is there to remind me in Jame 1, "(2)Consider it pure joy, my brother, whenever you face trials of many kinds...(5)If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him", so please join with me in praying for that wisdom. Our next few months are filled with doctor's appointments, surgeries and lots and lots of choices, without my relationship with Christ this mother would have gone crazy a long time ago. Thank you Lord for your beauty, wisdom and love!