Hope everyone had an awesome holiday and good times with loved ones! We had a blast at the lake. We are blessed to have incredible friends and family surrounding us. Pierce and myself are having what seems a summer cold! We feel horrible, so we r home in bed resting up trying to recover. Blake is well and working hard for the family.
I realized out on the boat this weekend whilst watching the water and sky...that i am finally coming out from behind the clouds! The fear and anguish is starting to subside, i am responding better with myself and others naturally now instead of faking it to save face! Little pieces of my soul are starting to reform an take notice of my surroundings. My eyes are starting to look up for help from God and his grace instead of my fist being raised in anger and doubt. Dare i say this next line....I am finally hearing songs again, as i sit at the piano or quietly still i have been letting the songs come to me and it is vulnerable whats happening! Instead of letting this whole experience take me and our family over, i am taking it over within and bringing my life, my emotions, my belief and thoughts upward..So we are treading softly and with great respect on this new road, stopping often to take it all in again, smell the roses, taste the bitter, grief our losses and walk on!! I love the song "Walk on" by U2!! This song talks about fighting for freedom after being caged up like a bird, then fighting to survive once you fly..So the lesson for today that i have learned is there is mending taking place, no matter how fragile and loose the ends are, my streams are beginning to move again, and i am not as thirsty as yesterday!! love mk
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:
So happy to hear the clouds are moving away! It sounds like you had a wonderful and refreshing weekend! I hope you and Pierce feel better very soon...summer colds are such a bummer.
good words... not as thirsty as yesterday. everyday is different than the one before. what a blessing we have to start each day new! glad to hear that hope in your voice :)
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