Tonight’s guest post is from Virginia Cunningham, a freelance writer in Los Angeles who specializes in special needs, alternative medicine and other health issues. She also works with Northwest Pharmacy. After learning how to appreciate everything she’s learned through this journey with HPE, she also educates parents with special needs children about special educations laws and inclusion.
When I was 35 weeks pregnant with my first child, Nathan, I was told I needed to visit a specialist, without being informed why. I knew right away from that doctor’s tone that the news was not going to be good. In fact, it was worse than I expected. Little Nathan had holoprosencephaly, a rare disease in which prevents the brain fails from developing into two hemispheres.
The prognosis was grim. Our specialist had seen this before, and he was shocked that Nathan had survived this long. Most babies with this condition die in utero and rarely last for more than a few months if they manage to make it past labor. In no uncertain terms, I was told that it would be a miracle to even see his first birthday.
That was over six years ago. This August, my son will celebrate his seventh birthday, against all odds. To me, his very existence is a testament to some kind of benevolent force in the universe— an unqualified blessing. But, the funny thing was that his survival—something that the experts said was all but impossible—was only the beginning of the magic.
Nathan’s health has been stable all along, but his brain has some major limitations, needless to say. With all the damage his holoprosencephaly has caused, controlling his muscles is nearly impossible. Walking, talking and holding his head up are all tall orders, and we need to help Nathan with just about every simple action we take for granted, but then we learned (after some testing) that his eyes functioned perfectly. The small motor skills needed to focus should have been out of the question, but Nathan has perfect vision. Although he can’t move around in the world very well, now we know he can at least soak in all of its beauty.
This perfect vision has given him another miracle: a voice. Through his eyes, he is able to control a computer that has speech output. His eyes are the mouse, enabling him to make choices, tell us about his likes, dislikes and feelings. The little boy who wasn’t supposed to live, see, talk or understand the world around him, gained a voice and a way to share his thoughts. Despite the malformation of his brain, Nathan is actually very intelligent.
Any one of these miraculous events make me feel thankful enough to fill ten lifetimes. But as truly amazing as all of these blessings are, I think the gift of living with this miracle child is the greatest one of all. Through him, my husband and I have learned profound lessons in faith and in gratitude. I can definitely say I’ve learned to be less controlling.
When he was born, I thought that my whole existence was to help Nathan; to fix him and make him better. But, as he continues to teach me and fill me with joy, I realize how he’s the one who helps me. The true miracle has been learning from him. A little boy who cannot speak has been my greatest teacher.