Though this blog is generally about the nature of Nature, today I write about the nature of Raina, a remarkable young woman I’m delighted to call my niece. Raina graduated, with honors, from Edmonds High School last Friday evening. On Saturday there was a grand party celebrating her graduation, attended by family, friends, aids, interpreters – all friends who help her navigate through life’s challenges and accomplishments. Raina is deaf and has Athetoid Cerebral Palsy – it truly ‘takes a village’ of amazing people to assist her. But it is her strong spirit and will that ultimately results in her many successes, which culminated Friday when she got out of her wheelchair and walked (with a little help!) on stage to receive her diploma.
Many of my friends know a bit about Raina, but I thought I’d tell more of her story, because it is truly a remarkable and a magical one.
Raina was born 21 years ago in Cambodia where my brother Kendall, sister-in-law Ginny, and their daughter Kira, went to adopt her. They didn’t know they were going specifically to adopt Raina, the ups and downs of their trip to Cambodia is a whole other story, but when they saw Raina she was a few days old and they decided they wanted her for their daughter. They did not know at the time she had a body with a mind of its own! It took several years full of frustrations and concerns until a very special doctor accurately diagnosed what Raina was challenged with.
Athetoid Cerebral Palsy causes uncontrollable motions; sometimes flailing, sometimes jerky. It causes Raina to move almost constantly with involuntary movements of her hands, feet, arms, legs and head. It makes it difficult for her to smile when she wants to smile, or maintain any position or facial expression for very long. These involuntary movements can become exaggerated when Raina gets excited and can disappear during sleep. When Raina gets excited, her whole body expresses it! One of the positives of all this movement is that Raina can eat what she likes (and she really likes ice cream!) and not gain weight, she is in constant exercise mode!
It is estimated about 10%-20% cases of Cerebral Palsy are Athetoid Cerebral Palsy.
Because of her body movements, Raina’s signing has her own unique ‘dialect’, but those fluent in sign can understand her. Raina has a computerized augmentative communication device called a Vanguard with large keys which she types on, and, if she wants it to, it will ‘speak’ for her. Raina loves to write, keeps a journal, and enjoys updating folks on facebook of her life events and thoughts. There were many research papers, essays and tests to write for graduation.
Reading is also a challenge, and Raina loves to read. She does so in large print on the computer, exploring the world through both non-ficiton and fiction, from classics to contemporary books. Her interests extend to dance, theater and music – she is on first name basis with many of the well-known entertainment signers in Seattle!
Raina’s story is indeed many people’s story, for her life profoundly touches and changes all those
who know and help her. Her dedicated and loving parents balance professional jobs and responsibilities around the activities and needs of Raina’s life. Her big sister became fluent in sign language at a very early age, Kira is a caring sister and great role model….like all sister’s they chat about many things.
At the celebration there were teachers, aids, interpreters – like Karol and Bernadine, remarkable women who worked with Raina through her school years, and Jessica who has accompanied Raina to summer camps. There were family friends and neighbors and the parents of the Whidbey Island support group for parents of special needs kids. A recent aid to Raina, her physical therapist Hunter, guides her through learning to control her body, enabling her to stand and even walk after a life time in a wheelchair.
Raina’s walk up the ramp to receive her diploma was an acknowledgement and celebration of all she has accomplished, and the beginning of all she will continue to accomplish. What’s next for Raina? Like all graduates, the possibilities are endless, the dreams many……but the first step is travel in Europe this summer with her family, the second step is to attend Edmonds Community College in the fall.
To see and hear a video of Raina signing a song with her sister and many others at her party, you can go to Raina & Kira Sign-singing and use the password Brightday.
For a picture of her on stage receiving her diploma: Everett Herald