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Change in Plans Mayafly.... Continuing to Fly One Day at a Time! Life is about LIVING!
I GET UP. I WALK. I FALL DOWN. MEANWHILE, I KEEP DANCING. -millel
Life is not measured by the number of breaths we take, but by the moments that take our breath away. Unknown
I was placed in my Mama's heart in August 2000 and placed in her arms March 2001. I LIVE with Mitochondrial Disease-a disease affecting the mitochondria necessary for the function of all organ systems and for providing energy to the cells. When you see me you might see tubes and IV lines... you might see my wheelchair or the extra care I need, but I hope instead you see my smile and my love for life! None of this technology makes me who I am, it just helps me LIVE. I am Maya....I love to play, I love to laugh, and I LOVE TO FLY!!!
Thanks Hugs and Hope Members for continuing to brighten Maya's Days!
A Special Needs Trust has been set up to help with extra expenses involved in Maya's care. If you are interested, contributions can be made to: Maya M. Owens Special Needs Trust, 137 Deerfield Circle, Bryan, OH 43506. *All donations go directly to Maya's needs has as they arise.*
Journal
Monday, April 30, 2012 8:02 AM CDT Holy cow! A month already?!?
www.caringbridge.org/visit/mayafly
I'm not sure I've gone this long before. I suppose as the months and years pass this venue becomes a piece of how it "was". The weekly or often more frequent updates are part of a time when this life seemed somewhere outside of the norm. When things seemed unique. I've learned over the past couple years we are far from unique and what makes us unique is more intimate than this forum. I use to think you could never get use to what this life hands you, but I've learned you can if you let yourself. I've learned to embrace what our lives are including the ups and downs of illness, surgery, and all the rest of what goes with it. That isn't to say we don't still crave the support and friendship of the people who have been in our lives for years or those who have recently entered, it's just times change and people change. Most simply the speed and convenience of life has changed for many and this site does not provide the convenient e-mail notices of of updates the newer Caringbridge sites provide and I've heard many times from people that is what they dislike about following our site.
I've decided to switch over to the newer (post 2005) style of page where you can subscribe to updates, easily add pictures, and leave this as a history of where we have been. I still plan updates and hopefully more often than monthly, but at times there may be distance, but with updates avail age by signing up with email you'll know when the site is updated. Most of our life is quite boring :) so I'll keep it to medical and fun updates and not the same old daily routine. I hope this helps and happy reading!
Holly
Read Journal History
Hospital Information: Patient Room: W501 Children's Hospital of Wisconsin PO Box 1997 Milwaukee, WI 53201-1997
Links: http://www.mdausa.org/publications/Quest/q64mito.html MDA quest article on Mitochondrial Disease http://quiltsoflove.com/quilt/maya/maya.html Maya's quilt of love http://www.oleyfoundation.org Oley-information on tube feeding and TPN
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