Raising a child with “special needs” isn’t always about what their “special needs” are, sometimes, it’s about your “special needs” as the mother of that “special needs” child.
When our daughter, Shantel, was diagnosed with cancer at the age of two, our world came crashing down around us. We were not sure if our precious Shantel would live or not. Then, as we worked through her treatment plans, we found out she would live, but her best chance of survival depended on having both of her eyes removed, leaving her blind for life.
All that mattered then was that our precious baby girl was going to survive, and that we learn how to help Shantel adjust, and live, in the world without sight. My husband, Bill, and I decided right then and there that we would do whatever it takes to help Shantel not only live in the world without sight, but that she would be a happily independent, contributing member of society.
As we set out to meet each challenge of learning what Shantel’s “special needs” would be, and what the best approach was for meeting those needs on a daily basis, there were many times when the challenges overwhelmed us to say the least.
After we got through the initial shock of what needed to be done, and got through all the surgeries and treatment plans…,the first challenge was to help ensure Shantel learned how to move about safely in her environment.
This is a picture of our precious Shantel when she was in preschool at the Foundation for Blind Children (FBC). Shantel is the child in the back of the line with the cane.
Not all the children at the FBC were totally blind, some had low vision or vision that was failing but not gone yet. At the time, Shantel was the youngest child ever to learn to use a cane at the FBC.
As time went on, we became more and more educated on how to meet Shantel’s “special needs”. We learned when we needed to push her and when we needed to back off and redirect her… But what we struggled with the most was learning how to cope with our emotions, frustrations, and the heartache of accepting what we could not change.
Along with my strong faith, my husband, Bill, family and friends, I found strength in a poem. It was given to me when Shantel was still in the hospital just after her surgery that removed her eyes. It’s an Erma Bombeck poem titled “The Special Mother” I want to share it here so Shantel will always have it, and for anyone who cares to read it.
The Special Mother by Erma Bombeck:
“Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”
“Forrest, Marjorie; daughter. Patron saint, Cecelia.”
“Rutledge, Carrie; twins. Patron saint, Matthew.”
Finally He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a handicapped child to a mother who doesn’t know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”
“And what about her Patron saint?” asks the angel, his pen poised in mid-air.
God smiles, “A mirror will suffice.”
I can’t tell you how many times I’ve read that poem over the years. Every time I became overwhelmed, frustrated, or felt my heart breaking as I’ve watched my beautiful, Shantel, meet her daily challenges through the years, as she makes her way through life…I would read this poem and have MY “special needs” met…
Stay Tuned!
Like this:
Like Loading...
