Wednesday, September 29, 2010

Happy Birthday Pierce!!


Happy birthday to my first born young man now 5 years old today! So proud of this boy, he is a rare jewel to our family..we have given him gifts throughout the day, at school we threw a little party, it was memorable! But i think that tonight when we were winding down for bed, getting to our usual routine...of pierce brushing teeth, potty before bed, reading a story and tucking him in to pray..tonight i stayed by his bed just laying over him and rubbing his face; he turns over and says, "moma, i need you to rock me". So we are wrapped up with his music on, he ask me to sing "rock a by baby", i got through it twice and he was out in my arms..his body became limp you know and very heavy, at that moment it allowed me to remember how it felt to hold our lucas afterward when he passed, we had given him a precious bath, i wrapped him up and held him and just wept, i remember how heavy his body started getting..so tonight as i looked at pierce and the similarities b/t the both of them..i just thanked God for this level of PUrE Joy Pierce brings our lives, the healing he carries with him..i felt so covered by love and blessed to be his mother..
As this weekend unfolds, we will live and learn and bleed and break for our loss in just 2 short years! But the Grace is poured out in abundance over us and for that i am thankful for this journey..
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2 comments:

Laura said...

MK, I can't believe Pierce is 5. That means Logan is right behind him! I will always think of you as October comes in. I pray for you and your family that the Lord will bring you peace and love. We miss you all, and love you very much! God Bless, Laura

September 30, 2010 at 7:18 AM
Unknown said...

Always thinking of you in October and the moment I first laid eyes on your loving family. You know I love you more than words, more than words.

XoXo,

Jamie

September 30, 2010 at 9:00 AM

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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