Sometimes life plans can change in ways we never thought possible. Out of grief and loss comes opportunity for redirection and joy we never could have imagined. This is our story.
If anyone had told me I would be the mother of a special needs child. One who needed me to turn screws in her head every day in order to expand her skull so her brain wouldn't be squished. I would have said they were crazy.
Never did I think I would mourn the loss of the hands my daughter was born with. Hands so different than yours and mine. Hands that brought stares of horror from other children and sadly, sometimes their parents. The night before the first of two surgeries that would eventually give her ten fingers, I took pictures through a lens of tears. I never wanted to forget her sweet little hands. They were part of her, and I had grown to love them.
As a newly married young woman, I always dreamed of having children and assumed they would come the usual way. After a devastating birth experience with my firstborn daughter, which almost claimed both our lives, my reality changed. It was then I knew that my desire to give my daughter a sibling would not come through me but through another woman's loss. Holding my beautiful and perfect daughter in my arms, I could not imagine the pain a mother would go through to relinquish her baby to a stranger. My husband and I began the adoption process and later entered the foster care system. Little did we realize that our desire for another child would come true 10 times. Or that we would care for over 100 sick and medically fragile babies. Babies of all races but sharing the same familiar threads in their history. Drug and alcohol exposure, physical abuse, neglect, starvation, domestic violence, poverty and mental illness.
Through the years, my husband and I have learned skills we never dreamed we would need. Insertion of feeding tubes, catheters and post-surgery wound care quickly became common, everyday activities even though they sort of made us cringe at first. Actually, that's not true. They made us miserable in the beginning. Therapies, doctor appointments and hospitalizations were sandwiched in between parks, school, social outings, holidays and living life. Oxygen tanks the size of missiles decorated our living room. We were so thankful for the smallest things, for instance, 100-foot tubing so that we could use the oxygen anywhere in the house. We encountered learning disabilities and developmental delays times 1000. We had to learn how to get our daughter with Down syndrome to do what we wanted her to do. We are still working on that one. Just recently she just told us she was getting "boobs."
My life has been full of humbling and wonderful moments. I have witnessed heroic feats by children who were written off by others. Children who weren't supposed to have normal intelligence or communicate or walk but did all those things and so much more. I tell you the joy is sweeter when the goal is not easy to attain. Our daughter wrote a poem about her sister born with Down syndrome and drug exposure. The last verse beautifully describes our feelings about being a sister and parent of a child with special needs.
Chilly, crisp air kisses her cheeks
as she glides on silver skates each week.
Who would think a child so frail
would travel briskly on the ice, or ride a bike or write her name,
or swim or dance or love so deep.
Grateful for difficult times that are long since past where the sting of trauma is over and the joy of 11 beautiful children surrounds me. Grateful for people who taught me skills I did not possess. Grateful for those that stood by my side and helped me when I was overwhelmed and scared, feeling absolutely incompetent for the job placed at my feet. Grateful to be able to start a charity, Straight From The Heart, and have it become my life's work. Straight From The Heart is a place that makes a difference in a flawed and confused system that often does not put the child first. Grateful to help foster children and those that care for them travel more easily down a similar road. Grateful for a faith and belief system that tells me every child is a gift and should be treated so.
Please consider making a place in your lives for these children. They need you so desperately for a little while in foster care, or for a lifetime through adoption. If you want to appreciate life like you never have before or find inspiration in great things and be loved deeper than you have ever known, Google the number for your local adoption and foster care office. The children wait for you. The process is not easy. The system is heinous. But there are children longing for you to step up and pull them into your arms. The payoff for parenting a child with special needs is unimaginable joy. You will not be alone. We will help you with everything we have, Straight From The Heart.
This post is part of a series co-produced by The Huffington Post and L'Oréal Paris to celebrate the Women of Worth program, honoring women making a beautiful difference in the world. The ten 2013 Women of Worth honorees are pursuing their passions to accomplish the extraordinary through philanthropic efforts in their communities. Bound by a deep sense of purpose and appetite for change, these women were chosen from thousands of applicants, and each received $10,000 for her charitable cause from L'Oréal Paris. To learn more about Women of Worth or to submit a nomination beginning Spring 2014, please visit womenofworth.com.
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