As Black History month closes, we were asked at work (PSCU) to write about which one of the featured influential individuals made an impact on us. I chose Maya Angelou for my inspiration. Her poetry reaches out and grabs you and holds you enthralled.
"I know why the caged bird sings"…..” speaks to me on the most personal level. As a woman who has lived with great misfortune and endured the repression of many generations, Ms. Angelou’s words are a song of survival and grit. Ms. Angelou has captured the intensity of living a life with challenges and rising above the hurt and anguish to proudly proclaim her spirit is free. She has captured the essence of the lowest of lows in her verse and has vibrantly shown the resilience of the human spirit. I can never claim to have her experiences, however, her words are meaningful and beautiful to me. At one point of my life, I felt like a caged bird, railing against the bars of self-imposed imprisonment. Bound to a newborn child I had yet learned to love, unable to cope with the shattered dreams of a life with healthy active children. It is often said that the birth of a handicapped child is like preparing for nine months for a trip to Italy, researching, planning excursions, learning the language and realizing when you get off your long plane trip that you are in Norway, a colder harsher reality than what you planned on, still a beautiful country but not what you expected. When Tyler was born, we were handed a child with exceptional needs and told, “He could experience some weakness on his left side, or it could be worse.” We did not anticipate how hard “worse” could be. Our family grew by the dozens in a few short months, there were therapists, physicians, caregivers, nurses and one special child. Tyler did not have an easy infancy, everything caused him duress, bright lights, noise, temperature, texture….all of them made him cry. Eighteen months straight of non-stop crying. I sat in a rocking chair with him in my arms rocking and holding him close and begging for an answer to ease his pain. It took me time beating my wings against the cage of disability before I accepted the honor given to me. I was truly blessed to be his mother and the lessons that he taught me are with me today. Life is not always what you plan and you can find the joy and the song in what you are given. Tyler was the catalyst to propel his family into fighting the injustices and prejudices that plague our special needs population. We were isolated, shunned, treated poorly in restaurants by patrons and our Tyler was abused by many in a system that was meant to care for him. They simply chose not to see the child trapped in a body that did not work, but dismissed his existence to be of less value because of perceived intelligence. Those that mistreated him were the ignorant ones who lost the opportunity to meet a truly unique special being capable of love, friendship and laughter.
Ms. Angelou’s poetry about the ignorance of the uninformed and those that chose to sling rocks and demean a human to be less than valuable because of color of their skin, or a perceived level of intellect will always speak for me. Still I Rise ....Repeatedly we had to argue and fight for those who are unable to speak for themselves, unable to communicate or walk. Our advocacy began at home and since his death at 15 we have continued to find an avenue to fund his memorial at Camp Redbird. Tyler’s greatest joy was to belong, to be part of an active vibrant life, to transcend the broken body, to communicate his special sense of humor. Camp Redbird remains our favorite way to honor his life. He loved his Camp Redbird and the joy he had in making friends was palpable. Every year at the memorial picnic, it breaks my heart to hear his friends say that they miss Tyler's smile and laugh. Ten years later and his friends still talk about him and they hug us so tightly. It is bittersweet to attend the picnic, but the money we raise helps other children and young adults have extra outings and treats during summer and that helps assuage the pain in my heart.
Yes, I heard the caged bird sing……I remember the laughter bubbling up from his heart and his joyful song, my darling son. Trapped in a compromised body but with the heart, soul and mind of any human. I see him in Heaven as the free bird, soaring and dipping through the clouds, whole at last. And still I rise….from grief so profound that I found life was not worth living…..I rise, I rise, I rise in remembrance of what was and what will be.
I didn't think it was possible to be this tired and then I remember yes, it is possible to be this tired. My tears are just falling from exhaustion and yet, I can't fall asleep. Molly and Charlie are snoring in tandem...silly dogs won't give any me room to stretch. It's nights like these that make miss my Tyler the most...I could sit in his room and play scrabble and just listen to him breathe.To listen to his steady breathing was such a comfort, after all the early years and medical struggles. Those hard fought surgeries to give him a clearer breathing and as much functionality as we could were worth every bit of pain, to see his body twisted into a hairpin, heels touching the back of head, wracked in agonizing pain was horrific. I can recall the recovery nurses running to get me to hold him and comfort him after the surgery. There was such pain in those beautiful eyes, "Momma what have you done to me?" Oh, my dearest son, I want you to live...I want you to breathe, we had to do this to help you. Those nurses begged me to talk to him and let him know momma was near. I did..and with every surgery, I begged Ty's forgiveness for subjecting his body to such pain. His body was so broken. His early years were never a comfort, it was such a battle. I can remember when we first brought him home...on Christmas Eve. So tiny and so needy. He was barely 4 lbs. The monitor, the beeping, the strangeness of our home....I can remember sitting in that rocker can holding him to my chest for hours and hours on end. Everything startled him, everything made him cry.....his senses were constantly assaulted by light, by sound, by touch. He never stopped crying for hours and hours. I can remember Dr. Cordes giving me some drops to give Tyler just so I could get four hours of sleep. The crying never seemed to stop, 18 hours a day, never ending. WE rocked and rocked. I felt it was necessary to hold him close to my heart and let him hear my heartbeat, to try and comfort the constant sensory overload. Low lights, quiet, and momma's heart beat. I was so unprepared to be his mother and this blessed child changed my heart forever. He taught me so much and I long for his smile and laughter. He was so cruelly ripped from our lives and so suddenly gone. I still can't grasp the grief sometimes. There are those moments when memories consume you and the loss is all you can hold on to. There is no timetable on grief and loss. There are times when living is unbearable and the tears won't stop.