Christmas is in the air!!!!
This time of year it is so much easier to have the warm fuzzes all over...the chilly weather, breaking out the warm coats, hats and gloves; snuggle up by a fire and just listen to the crackle and pop sounds with family and friends we love so much..True it is one of the busiest times of the year for us all, but finding the time to maybe reach out to family we haven't been close to in years, even neighbors or coworkers~we all crave a little kindness this time of year.
For the Weindorf household, we are so excited for our newest son Bryce to have his first Christmas!!! He is 9 months old now and is so smart and strong. Pierce is an amazing big brother and ready to teach Bryce the ropes...
I really don't know where to begin with this year and changes God has brought us. I am so thankful that God only allows us to see parts of the tapestry of life b/c there is no way we could take it all in at once...I am home with Bryce and working part-time here as well, pierce now in kindergarten and doing so well, Blake engineering still and we feel the turning of the tide in our family has been taking place all year long!
We hope with all our heart that all of you have a magical and peaceful Christmas this year!!! Know that as i am writing to update everyone, you are in our thoughts and prayers and send you love and kindness your way!
As i am ending this post for the evening i would like to speak to our CHARGE families around the world that are still keeping in touch. Just this Monday Blake and I started to feel the loss in our heart for Lucas, it is so strange that it sneaks up on you when you least expect it..something as simple as a silly hallmark movie, a song on the radio driving to work, a simple look that Bryce will give you and it reopens those pieces of our heart that we keep hidden and protected..i took a long calming cry as well as calling Blake and realizing that he did to on the same day at different time, but God knew we needed that release it seems..it never gets easier to me, and i am not even sure that time heals all wounds....i believe the wound becomes a part of you..and changes you forever; it is a reservoir within to keep you going on those dry days, i can reach down and find strength to move myself from that lonely place and get to a peace again...
Lucas, my song and heartbeat live on because of you..you were and are the living testimony of unconditional love and determination to conquer everything impossible in this life! I love that i can close my eyes when there is a need for a reality check, i find you in that place and instead of not breathing like before, you actually give me breath and purpose for living and moving on!!! You are remembered and held this Christmas my darling.....see you soon
Love,
Mommy,Daddy,Pierce and Bryce
December~2011
Wednesday, December 14, 2011
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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