A Personal Love letter to Parenthood; Parenthood and PAIN

No parent is prepared to lose their child. You are blessed with the supreme gift of parenting, to guide, to love and to raise a child.  It is unfathomable to love a being so much and have their life taken before it begins to blossom.  Your heart grows fully at their birth to encompass the future of another precious life  It is filled with the miracle of the unique being in your arms, full of promise and dreams.  A part of your soul shrivels and dies...it shrinks to a hard bitter foul pit impossible to swallow when your child is taken from your arms.  There is only faith in the word of your Higher Being that can save you from the bowels of overwhelming despair, it is impossible to defeat the fog of sadness without the hope and promise of a reunion of spirit and heart in another plane. 

Just today, I questioned my own reasons for parenthood...why would I project my own unmet dreams on my child? For Olivia to do and be better than I ever accomplished, how unrealistic and unfair are my projected expectations for her life, it can result in an unhealthy unhappy relationship. Why should my success be based on how I raised my girl; to be the very thing that I could not be?  One should never expect their child to be what the parent failed to be.  Parenting is a responsibility that is daunting and is often fraught with a history of familial pain that can color the joy of THIS precious child in your life. I wasted years without a purpose in my own life.  Really, a wasted life until our Tyler was born. Our Tyler was a lesson from God that was life-changing. A gift to share and not be forgotten.  

Dearest Olivia, no matter how much I say I don't want you to "be me" I can't prevent you from making the same mistakes that i made.  At some point, I have to let my expectations go and know that your life is what you choose and not what I expected it to be.  You can't make someone be successful or accomplished as a substitute for your own inadequacies, your child must have that drive on their own. Parenting, empathy, compassion, classes, summper camps can be shown as an example of a full life, but that does not mean that your child will echo your values or exceed your failures.  My own life disappointments should not be a pattern for another life based on the expectations of others. My mother felt this pain all her youth and she could not keep the insecurities in her life keep me from repeating them. Momma and I went to couples therapy at one point in our life because our relationship was so fractured and dysfunctional .  I'll never forget the counselor asking me "Did I want to repeat the anguish and pain of generations of women before me?  Did I have the guts to break free from this cycle of poor self esteem and being a doormat to life's curveballs?"  And I fear that my insecurities from my young adulthood have created the same lack of self-esteem in you, my precious Olivia. Parenthood is not easy. 

Our children are not a vessel to fulfill our own unmet expectations. They are God's gift to be their own unique beings with His plan for their life. The Greatest Love of All.....

My childhood friend has lost her daughter...my adult friend lost her adult son....we lost our son. Parents are not meant to see their children die before them. It is Hell on earth. There are no words to ease the pain. I was questioning the value of parenting today and then I get a big FACE slap reminder that there is no greater love than a parent to a child. And sometimes that is all there is, the love of child, pure and simple.  It makes you human and connects you to life in its fullest.  We are linked by our love of family. The love of your child is an unconditional love that encompasses all hurts and disappointments.  You love with all your being, you forgive the unforgivable, you hope to instill your values, your dreams and hopes.  Then,.at times, you realize most harshly that life with children is not what you planned but a lesson in how you deal with the challenges.  This hyper-impatient perfectionist waited 9 1/2 years to hear an "I love you" from a boy with a heart of pure gold.  I had to learn to cherish this child that was not whole.  How unfair of me to apply a greater standard of perfection to his sister and expect her to be all that I was not, or to compensate for what was lost when Tyler passed away.   

Our Children are our future let them lead the way.  

I was most unhappy with myself for not funding the Camp Redbird Reunion Picnic this year, held in honor of Tyler.  Fred's heart attack was the priority and it consumed my days and funds.  It doesn't mean that we have forgotten to memorialize the life we lost.  Ty's connection to Camp Redbird was his summer salvation.  Once he gained a comrade in his nurse, Gordon, he loved the autonomy of a day without therapy and school.  Supporting his causes has always been a comfort in spite of our loss.

I urge those parents to find and support the causes that meant something to their lost child.  Lemonade for Cancer, Therapeutic Recreation for the Handicapped, Zap for Cerebral Palsy

Work asked for it...I wrote it.

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.    

Too tired to live, or just too sad to be free

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.

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