Alyssa Terrell is a 25-year-old young lady from Mico, Texas who has a unique way of bringing people together, touching their hearts and making someone a better person. Though technically non-verbal, her soul speaks directly to yours. Alyssa uses a wheelchair for most mobility efforts and requires total care for all activities of daily living. She loves to watch her iPad, Barney, Peppa Pig, Disney musicals, and other young-at-heart movies that bring out the child in all of us. She is her own Fountain of Youth. The days are filled with singing, dancing, giggling, and putting on lip gloss. What more could a girl dream of?
What an incredible journey loving this little girl has been. She has given everyone challenges throughout the years and has always amazed us with her strength and determination. Alyssa was born with Tuberous Sclerosis, a neurological disorder which forms tubers/tumors in every organ throughout the body. At 6 months old, she had a SEGA brain tumor removed from the right frontal lobe of her brain which attributed to the extent of her extraordinary abilities. Her second SEGA brain tumor was ablated in October 2013 through a "never before performed procedure" which has been successful thus far at keeping the tumor at bay. She requires a tracheostomy, ventilator and G-tube for medical support and optimal health. Through the years, we have been advised several times to spend as much time with her as possible because her time is near but, well, she has other plans. At 25 years of age, she has outlived her expectancy through the eyes of many but, with the amazing care and support she continues to receive from everyone involved in her care, we look forward to many more birthdays, Christmas's, New Years and many years of everyday living.
Alyssa has fun throughout her day due to the numerous efforts made by her caregivers/nurses and family. However, the daily routine of treatments, suctioning, medications, feedings, personal care, and activities of daily living make for a lot of repetition. She is a good sport about it all and to her this is as second nature as our morning routine of coffee, pack lunches, shower, and dress for work. I see her watch others and know that in her heart she wishes she could be like them and experience life without limitations but, she always smiles of joy for them. She knows nothing but love and gives nothing but love in return.
There are so many challenges as a parent of an exceptional child that we could go on forever. However, to narrow it down, the challenges of change are always an ongoing struggle. The one thing about this lifestyle is that it will never stay the same and, things can and will change at the drop of a dime. Changes from medication doses to nursing schedules, to doctors moving locations, to needing to find a new supply company (this is how we got to Apple HMS) come usually without warning and can consume your time, your mind and your physical exertion. On the other hand of this, the hardest thing for us, as parents, is when we see our daughter attempt to engage with others: she is non-verbal so she attempts to hold hands or touch for communication, and they shun her or shy away. She feels rejected and sad. In all her innocence of the world, she should always be accepted.
The most amazing thing in the world is her ability to love, accept, endure, and still manage a smile on her face. We all have days when we want to break and I can imagine she does too however, she continues on and makes it through so much. All the while with a smile, touching hearts and lives of others and making medical history. My true reflection of being the parent of an Exceptional Child is what I always say: "No greater heartache can be had and no greater JOY will ever be gifted to you than the unconditional love of an Exceptional Child."
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