the mighty max update: beautiful poem

A dear friend of mine from years ago sends me poems occasionally about my journey with Maxwell. These beautiful words were written for Max's recent birthday. Thank you Anara for sharing your amazing gift with us.

Heavenly Father made a special pair
And oh, what a love these two would share.
The one he gave a spirit strong as steel
To hold up against all she would feel.
The awe and wonder of her beautiful child
Knowing his life would be anything but mild.
The other he gave a spirit full of trust
To help him bear what he knew he must.
A life that is different from all of the rest
And pureness of heart to help him pass the test.
Together they are the perfect halves to a whole
And oh, what a wondrous sight to behold.

- Anara McCarthy

charge syndrome

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. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. 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. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

For more information, visit http://www.chargesyndrome.org

Friday, July 2, 2010

beautiful poem

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