Wednesday, April 15, 2009
parent's grief
The link here is the best explanation of a parent's grief that has lost a young child that I have seen and really explains all that we continue to go through since the lose of Lucas.One of the most relevant quotes to me is "When a parent dies, you lose your past; when a child dies, you lose your future."The article is long but worth reading to help anyone better understand parents who have lost a child.
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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
1 comment:
I don't recall seeing that photo of you both before from that amazing family set of portraits from the Fall of 2007 but it is utterly beautiful and I am full of tears for you right now as I type this message, not having anything to say other than the feelings of grief for you today feel as raw as ever they were. Does time really heal?
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