Coping With Your Child"s Disability
The moment I first saw my daughter Elizabeth, I knew we were in trouble.
"Her head looks so small," I thought, "so deformed.
" After viewing a CAT scan, the neonatologist said, "Your daughter has profound microcephaly-her brain is extremely damaged and has calcium deposits throughout.
If she lives, she will never roll over, sit up, or feed herself.
" As the weeks turned into months, the doctor was proven right.
"My life is over," I thought after hearing his initial pronouncement.
But as the months turned into years, I was proven wrong.
Recovering from the shock and horror over your child's prognosis takes determination--but mainly, it takes love, forgiveness and humbly accepting help from friends and strangers.
Despite wrestling with God the first year with "Why me?" (I had caught cytomegalovirus--CMV--when I was pregnant with her), I was often comforted by an act of kindness from a stranger (I always attributed God with sending me that person) or from a particular Scripture that seemed meant just for me and my particular anguish at the moment.
The first several months after Elizabeth's birth and diagnosis, I wallowed in the bitterness and suffering of others, especially in the Bible where I found Scriptures like, "My days have passed, my plans are shattered, and so are the desires of my heart.
" Job 17:11 My first prayers for Elizabeth, other than that God would heal her immediately, were that I'd love her.
What a horrible thing for a mother to have to admit--that she needed God's help to love her own child.
My husband Jim, on the other hand, loved her at first sight.
"She needs me," he said.
Elizabeth's nurses were to first to spark feelings of love in me toward Elizabeth.
"Look, she loves to have her head rubbed," one said as she held her in the crook of her arm and rubbed the top of her head with her free hand.
"Take her home and enjoy her-try not to worry about what her future holds.
Just take it one day at a time.
" But once home, I was so depressed I could barely function.
All I could do was rock Elizabeth and listen to sad music about others who endured indescribable suffering.
I immersed myself in the Book of Psalms.
Before Elizabeth was born, I really couldn't relate to the Psalmists.
I thought, "Wow, those people are really depressed!" Now, I found comfort in their bitter questions, such as, "How long must I bear pain in my soul, and have sorrow all the day?" If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head like, "Why would God let me catch CMV?"; "Why didn't my OB/GYN warn me about this?" and "Who did I catch it from?" (Congenital CMV, which causes more disabilities than Down syndrome, can be avoided if women of child-bearing age wash their hands often when caring for children under six and if they refrain from kissing them around the mouth.
) It took Elizabeth a couple of months to figure out where my face was, but then one day she looked directly into my eyes and smiled-we had finally connected! I gradually began to think, "If she doesn't care that she's severely mentally retarded, and, apart from a miracle, will never walk or talk, why should I be so upset?" Maybe it was my prescription sedative talking, but that thought stuck with me, even when I no longer needed "mother's little helpers" to get me out of bed and into the shower.
I decided to follow the nurse's advice and just think about Elizabeth's care one day at a time.
There was no use in letting myself get overwhelmed with despair over what Elizabeth might not be able to do in the future.
Today's tasks were what I needed to tackle.
I was told Elizabeth could die unexpectedly at any moment.
I could die at any moment for that matter.
What was the point of losing my sanity fretting about tomorrow? The Scripture that helped me stay focused was "Perfect love casts out fear" (1 John 4:18).
Although I prayed for a miracle all the time, I began thinking that I needed to concentrate on loving and caring for her at that moment and not dwell on what tomorrow could bring.
Writing also gave me the courage to handle the realities of my life.
My career as a writer began with a series of form letters to my family and friends to update them on how Jim, my older daughter, Jackie, and I were doing after Elizabeth's birth.
It was much easier to write about our circumstances than to wait for loved ones to ask me terribly painful questions like, "How are you doing emotionally?" or "What is Elizabeth's prognosis?" or "Is she sitting up yet?" I could not bear reflecting on those topics over and over again.
I preferred to let everyone know what was going on through my letters, so that when we spoke by phone or face-to-face, we could speak of more pleasant matters.
My soul needed to see cheerful faces around me, not ones filled with awkwardness and pity for our plight.
I sat Elizabeth on my lap while I pursued my newfound passion.
As time went by, and I began to appreciate Elizabeth just the way she was, I no longer focused on her doctor appointments and what the doctors had to say, but on "normal" family events.
Within a year after her birth, I began writing stories about the lighter side of our lives.
Elizabeth nestled on my lap for hours watching my words fill the computer screen in our laundry room, which also served as my office.
She loved the gentle movements my arms made while I typed.
Since writing soothed my soul, perhaps getting my stories published would soothe it even more! I bought "The Writer's Market," a fat book full of publishers and "How To's" and began my life as a freelance writer, getting stories published about Elizabeth and congenital CMV, as well as lighthearted "slice of life" stories about our family.
Little did I know that Elizabeth too would benefit from my need to share my thoughts.
When my story about her, "Elizabeth: A Christmas Blessing," appeared in magazines and newsletters, she began receiving fan mail! One young man, an inmate who was handed a copy of Celebrate Life magazine in his jail cell, began writing to Elizabeth regularly.
I had no idea if she understood the words I read to her from her pen pal, but she loved to watch me rip the envelop open and unfold the papers in front of her.
The prisoner's words to Elizabeth were full of hope.
He repeatedly told her that God loved her, and like him, she would be set free one day.
Sharing my feelings with the public made me feel less alone in my world of raising a severely handicapped child.
C.
S.
Lewis, author of "The Lion, the Witch and the Wardrobe," said, "We read to know we are not alone.
" Perhaps that was why I found writing so therapeutic-not only did it force me to put words to my feelings, making order out of the chaos, but when I threw my thoughts out to the public and got a response, then I knew that I wasn't alone.
And more importantly, that Elizabeth, who could not reach out to others through words or touch because her cerebral palsy was so severe, was not alone either.
"Her head looks so small," I thought, "so deformed.
" After viewing a CAT scan, the neonatologist said, "Your daughter has profound microcephaly-her brain is extremely damaged and has calcium deposits throughout.
If she lives, she will never roll over, sit up, or feed herself.
" As the weeks turned into months, the doctor was proven right.
"My life is over," I thought after hearing his initial pronouncement.
But as the months turned into years, I was proven wrong.
Recovering from the shock and horror over your child's prognosis takes determination--but mainly, it takes love, forgiveness and humbly accepting help from friends and strangers.
Despite wrestling with God the first year with "Why me?" (I had caught cytomegalovirus--CMV--when I was pregnant with her), I was often comforted by an act of kindness from a stranger (I always attributed God with sending me that person) or from a particular Scripture that seemed meant just for me and my particular anguish at the moment.
The first several months after Elizabeth's birth and diagnosis, I wallowed in the bitterness and suffering of others, especially in the Bible where I found Scriptures like, "My days have passed, my plans are shattered, and so are the desires of my heart.
" Job 17:11 My first prayers for Elizabeth, other than that God would heal her immediately, were that I'd love her.
What a horrible thing for a mother to have to admit--that she needed God's help to love her own child.
My husband Jim, on the other hand, loved her at first sight.
"She needs me," he said.
Elizabeth's nurses were to first to spark feelings of love in me toward Elizabeth.
"Look, she loves to have her head rubbed," one said as she held her in the crook of her arm and rubbed the top of her head with her free hand.
"Take her home and enjoy her-try not to worry about what her future holds.
Just take it one day at a time.
" But once home, I was so depressed I could barely function.
All I could do was rock Elizabeth and listen to sad music about others who endured indescribable suffering.
I immersed myself in the Book of Psalms.
Before Elizabeth was born, I really couldn't relate to the Psalmists.
I thought, "Wow, those people are really depressed!" Now, I found comfort in their bitter questions, such as, "How long must I bear pain in my soul, and have sorrow all the day?" If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head like, "Why would God let me catch CMV?"; "Why didn't my OB/GYN warn me about this?" and "Who did I catch it from?" (Congenital CMV, which causes more disabilities than Down syndrome, can be avoided if women of child-bearing age wash their hands often when caring for children under six and if they refrain from kissing them around the mouth.
) It took Elizabeth a couple of months to figure out where my face was, but then one day she looked directly into my eyes and smiled-we had finally connected! I gradually began to think, "If she doesn't care that she's severely mentally retarded, and, apart from a miracle, will never walk or talk, why should I be so upset?" Maybe it was my prescription sedative talking, but that thought stuck with me, even when I no longer needed "mother's little helpers" to get me out of bed and into the shower.
I decided to follow the nurse's advice and just think about Elizabeth's care one day at a time.
There was no use in letting myself get overwhelmed with despair over what Elizabeth might not be able to do in the future.
Today's tasks were what I needed to tackle.
I was told Elizabeth could die unexpectedly at any moment.
I could die at any moment for that matter.
What was the point of losing my sanity fretting about tomorrow? The Scripture that helped me stay focused was "Perfect love casts out fear" (1 John 4:18).
Although I prayed for a miracle all the time, I began thinking that I needed to concentrate on loving and caring for her at that moment and not dwell on what tomorrow could bring.
Writing also gave me the courage to handle the realities of my life.
My career as a writer began with a series of form letters to my family and friends to update them on how Jim, my older daughter, Jackie, and I were doing after Elizabeth's birth.
It was much easier to write about our circumstances than to wait for loved ones to ask me terribly painful questions like, "How are you doing emotionally?" or "What is Elizabeth's prognosis?" or "Is she sitting up yet?" I could not bear reflecting on those topics over and over again.
I preferred to let everyone know what was going on through my letters, so that when we spoke by phone or face-to-face, we could speak of more pleasant matters.
My soul needed to see cheerful faces around me, not ones filled with awkwardness and pity for our plight.
I sat Elizabeth on my lap while I pursued my newfound passion.
As time went by, and I began to appreciate Elizabeth just the way she was, I no longer focused on her doctor appointments and what the doctors had to say, but on "normal" family events.
Within a year after her birth, I began writing stories about the lighter side of our lives.
Elizabeth nestled on my lap for hours watching my words fill the computer screen in our laundry room, which also served as my office.
She loved the gentle movements my arms made while I typed.
Since writing soothed my soul, perhaps getting my stories published would soothe it even more! I bought "The Writer's Market," a fat book full of publishers and "How To's" and began my life as a freelance writer, getting stories published about Elizabeth and congenital CMV, as well as lighthearted "slice of life" stories about our family.
Little did I know that Elizabeth too would benefit from my need to share my thoughts.
When my story about her, "Elizabeth: A Christmas Blessing," appeared in magazines and newsletters, she began receiving fan mail! One young man, an inmate who was handed a copy of Celebrate Life magazine in his jail cell, began writing to Elizabeth regularly.
I had no idea if she understood the words I read to her from her pen pal, but she loved to watch me rip the envelop open and unfold the papers in front of her.
The prisoner's words to Elizabeth were full of hope.
He repeatedly told her that God loved her, and like him, she would be set free one day.
Sharing my feelings with the public made me feel less alone in my world of raising a severely handicapped child.
C.
S.
Lewis, author of "The Lion, the Witch and the Wardrobe," said, "We read to know we are not alone.
" Perhaps that was why I found writing so therapeutic-not only did it force me to put words to my feelings, making order out of the chaos, but when I threw my thoughts out to the public and got a response, then I knew that I wasn't alone.
And more importantly, that Elizabeth, who could not reach out to others through words or touch because her cerebral palsy was so severe, was not alone either.
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