Sunday, June 21, 2009
A great father's day
A great day being father's day. Of coarse we all know blake is pretty incredible. We went to lake ouachita with 30 of our friends, so fun! Doug and Shelly have a houseboat they take out. the last time we were on it, was last year with lucas..the second i stepped on the boat yesterday i could just smell and feel him everywhere. it knocked the breath out of me, then i cried behind my smile and glasses, shook it off and continued on. Little did i know that my close friends remembered it as well and were grieving without saying anything untill later. This never gets easier. We are going to start reading the book "the shack" this week. i tried to a few months ago and couldnt do it, just wasnt in the mindset i needed to be..it is difficult reading..but blake and i know too well what the "great sadness" means. Today we are going to the movies with pierce to see night at the museum. Then on to my parents house for fathers day dinner with family. As i sign off i just want to take a sec to honor all the dad's we know and follow through the last 2 year journey. Our family loves and thanks you all!! To all the blessed moms, lets all stay strong girls!! Give all you kiddos hugs and kisses. talk soon
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Lucas was born to us 5/10/07 and was soon diagnosed with CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Lucas's anomalies included with his case of CHARGE include minor heart defects of ASD and PDA, bilateral choanal atresia repaired at four days old, undescended testes repaired at seven months old, and ear abnormalities; also he has reflux and aspirated while feeding shortly after being born and thus had a G-tube and Nissen Fundoplication at five weeks old. Additionally he has PE tubes, very low muscle tone and facial palsy on his right side. Lucas was diagnosed with Primary Pulmonary Hypertension at 12 months old. He showed us how to shine through the rain as he lost his bravely fought battle and entered into Heaven on 10/02/08. He was our miracle on earth the 507 days we spent with him. For more information, visit chargesyndrome.org
3 comments:
Read "The Shack".... very powerful. Hope you guys are well. Sounds like you are.
I will give my kiddos some extra hugs today! Thanks for the reminder to hold them close while I can...
MK, I'm back to let you know that I gave you an award on my blog today! Stop by to pick it up when you have a chance!
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