Thursday, June 25, 2009
A grip of reality!
talking with mom today. They lost my sister stephanie michelle when she was 3 days old. she is 4 years older. We were rolling over our lives, sort of a from then till now history..we suddenly found ourselves speechless. My family has served and lead in churches, love God with every fiber of our being, and yet I am at a place in life and my soul where i can't get passed the grief. Lately reading Gods word, worshipping, or daily thoughts..i relate God with loss, grief, sadness. So i dont want to have anything to do with that realm. I know his sovereignty, i have embraced his mercy in my life, and walked in his grace, yet this pain is so real, tangible that even the very RAW word of God sends me into the abyss! I know, unbelievable but i am being so honest. Blake and i know that God knew this would happen before the foundations of the earth, but grieving is a part of healing. So i am soaking and asking Him for a solstace!!!! This is nothing we could ever conjure up, i just can not explain...all i can do is speak of what is truly happening. I have read today everyones comments and wept, because of the love and advice you all have given. This is a way for blake and myself to find relief even if it is just for the moment..We LIVE in the moment these days. love you all and hope today has been great for you.
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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
2 comments:
I know what it's like to be at a place when God and His Word are painful...I've been there myself for several years because of a different kind of pain in my life. Press on, my dear friend. That's all I know to say... Praying for you guys.
An amazing display of honesty from you MK which is much honoured, respected and admired. With love
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