Welcome Friends!
Owen B.
Birthdate - February 12, 2007
Main Diagnosis - Mitochondrial disease, polymicrogyria, lennox gastaut
"THANK YOU"
Owen received his AMAZING Love Quilt today! It brought tears of joy to my eyes, and will bring him much comfort for the road ahead. It is so very beautiful, am I am not truly sure how we thank all of the participants for their time and efforts other than to use the quilt daily as suggested! Thank you so very very much for this truly wonderful gift of love and comfort.
Biography
Owen has been on this earth just three short years but his journey has been
filled with many peaks and valleys. Owen was born "perfect" or so we
thought...ten fingers ten toes. Months and months later after a long series of
tests for global delays, poor muscle tone, and seizures...our perfect baby was
diagnosed with a brain malformation and mitochondrial mutation.
These challenging things are a part of Owen, but they are not who he is! He is
the love of his mommy and daddy's lives, the most pure form of joy we have ever
experienced, and the strongest person we will ever know. His milestones (we
fondly call "inchstones") although small and rare - are the most triumphant
moments of our lives. We love Owen for who he is...not for the things he does -
a lesson most parents NEVER learn (how blessed we are!)
Owen has beautiful untameable blond hair, deep blue eyes, perfect pink cheeks,
and he is a happy little guy in spite of all of his many challenges. He is known
for his signature deep sighs, his incredible strength and resilience, his wild
hairstyles, his love of music, and great sense of fashion!
He loves to read books, watch his favorite shows on tv, and play on his belly
with all of his toys. He has many therapies, doctor appointments, lab tests,
fittings for medical equipment, etc. and he never complains...it has become the
only life he knows...and it has become the only life that we now know. We like
to call it our "new normal". We are trying to integrate our new normal into
everyone elses normal - and that continues to be a big challenge for us - as we
really no longer belong in the "typical" world. We are changing as our
circumstances change, but this does not come without exhaustive effort, tons of
pre-planning, and always having a "Plan B".
We do not know how long we will have Owen with us on this earth, but we know we
have been given a very special gift from God, and we try to honor that gift by
filling his life with love, security, smiles, and courage. Let's face it, none
of us were born with a lifetime warranty...so while we all have uncertain
futures, we plan Owen's life as if we would plan for the life of any child we
would have.
Owen's story isn't finished being written...and I am proud to be the author of
his life, his biggest cheerleader, and his mommy. Follow Owen's journey here on
CaringBridge and don't forget to sign our guestbook. Messages of hope and
encouragement keep us going, and we thank our family, friends, and prayer
partners for the hope and strength that you so generously lend to us!
When you sign up to stitch for Love Quilts you will get a confirmation of your sign up. If your pattern is a duplicate you will be asked to pick another pattern.
We encourage you to join the LoveQuiltsUSA Yahoo group to check the pattern listing for duplications yourself before you sign up.
The lists of patterns already being stitched are posted on the database. LoveQuiltsUSA is an open group so you can sign up easily and view the patterns right away. Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
