Monday, June 8, 2009
hello to family and friends everywhere keeping up with us and our journey! We have been off line for awhile as you well know but you all were never far from our minds and hearts. We have prayed and waited to see how things would begin unfolding for blake and me...pierce as to whether we keep writing or close things down alltogether. We know now that with a few changes, 9 months passing that we are making strides, stumbling around here and there, conversations so difficult, marriage strain, and raising pierce with a new view and purpose. But that is just it. new purpose, beginning to see daylight so to speak. Still feeling guilty when we are remotely enjoying life, forgetting, trying NOT TO remember or not wanting to go there...memories so great that they take our breath away and not so great that we wanna fade away in the wind, just to be caught up to the heavens. I stopped by at the cemetary a few weeks ago just me, as i bent down to clean things off i realized i was holding my breath so tight that i got dizzy and sat down in front of this stone emblom with my sons name on it, and a rush of silence came over my heart..silence was all around, even in the wind, the ground. I was ok, just ....quiet. So as God allows and as our hearts stand erect, we will press forward and begin sharing NEW THINGS..of love, life, and family as we now are and know it to be. I hope to have you all join us again so we can heal and love again, and always let you know how much we appreciate the prayers, and support you've given. we hope to hear from you soon. signing off...mk
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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
6 comments:
Am truly touched to read this post today and glad I arrived on the day it was written. You write with a new purpose and vision to life. I hope we can talk again soon. It just feels too long.. with love
Thinking of your family and always checking on things on the blog. I hope you all find some kind of peace in your heart and know that Lucas is never forgotten. May God Bless you all.
Tracy K.
I am so glad to see that you are back. I have looked to your blog for strength and hope for my family and myself. We lost our son Joshua to CHARGE March 14, and have been dealing with many of the emotions it seems you too have experienced. Thank you for sharing a part of you with me.
Hugs, Sandy
So beautifully and honestly written, MK.
We think of you all often, wondering how you are... and this is such a poignant glimpse into exactly that. Thank you for your willingness to share with us... your vulnerability...
your outlook.
Keeping you close in thought.
I am glad to hear an update from you all and I think about you all A LOT!! I will always be here to read how you are all doing and showing us the love you all have for each other.
Have a great weekend away.
Hugs,
Crystal and Eva
So glad to see you back in this space - sharing, thinking, experiencing life and its many curves. We think of you all often, remembering Lucas - your beautiful bringer of light.
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