What can I say about Joy other then she was her name? She gave the best hugs and had the best laughs. I loved being her mother. She had a way about her that was beyond the average person. People who would have only met her once would remember her and note her upon another visit. She made people feel special and important. She truly was the most wonderful gift I could have ever received from God.
When she was born with her problems, my husband and I were devastated. We thought that our whole world had ended. To be told that you have a child with brain damage and later that you have a child that is blind and has serious metabolic problems is not what you expect. Especially when you look upon your beautifully baby. And Joy was very beautiful.
As time progressed
and I began to know her, her conditions became secondary in a sense. I
mean, there were a lot of ER visits, doctor appointments, there was the
medication every night and PT every day - but that did not define Joy.
She was not my "special needs" child. She was my "JOY!"
She made my heart sing and my spirit soar. I have so many wonderful memories
of her. We would sing songs together every day and clap our hands and
then would dance around the living room with her in my arms and she would
squeal with delight. I would also push her in her stroller and she would
just love to feel the breeze on her face. About a month before she died
my husband and I took her to the park and she swung in the swing and had
the very best time. I can still see the sweet smile on her face. These
are just a very few
There is something that I say everyday to bring me closer to Joy that I would like to share: "O SON OF SPIRIT! With the joyful tidings of light I hail thee: rejoice! To the court of holiness I summon thee; abide therein that thou mayest live in peace forevermore. - by Bahá'u'lláh
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designed to help empower parents of children with ONH/SOD. All the information
herein is subject to opinion. If you suspect your child may have ONH/SOD
it is recommended that you seek professional advice from a certified pediatric
ophthalmologist. No one individual or company connected with this website
assumes any liability or responsibility