Previous in series Parenting a child with special needs
My daughter, Chloe, is amazingly verbal, emotionally sensitive and quite a beauty. She knows what she wants, which is, of course, to be a princess ballerina pony rider who is a doctor for babies and animals. She is the quintessential 4, and I am overjoyed.
Chloe was born with a clubfoot and other complications. In these first four years, she has already had six operations and has worn casts, braces and special shoes attached to a bar worn at night. She has been in and out of hospitals, had multiple blood draws, echocardiograms, a barium enema and is in ongoing physical therapy. She has also experienced severe pain.
My husband, Dane, and I wanted a baby. We were excited to welcome into our lives another person to love. During pregnancy, I imagined the birth and life of our child. She would play soccer like her dad and dance like me. She would be perfect.
I still remember those quiet moments before the worry and the tears, that dream state of perfect fingers, coos and smiles and, of course, perfect toes. Just ten perfect fingers and ten perfect toes.
But what happens when things don’t turn out perfectly? Hope fades, expectations are dashed; the future quickly becomes cloudy as fear sets in, and we ask, Where is God?
We were told at my 5 month ultrasound that Chloe would most likely be born with a clubfoot, a heart defect and a chromosomal abnormality. "Down syndrome," my doctor said, "or most likely Trisomy 13 syndrome, in which case most babies are born dead." The doctor shuttled us to the genetic counsellor who stated, "You can interrupt this pregnancy today, and no one would blame you."
Where are You, God? I pleaded.
Chloe arrived in April with beautiful fingers, expressive blue eyes and a clubfoot. So neatly were our daughter’s feet curled up together, one wrapped around the other — so beautiful and so tiny. One foot perfectly like mine, the other scarcely resembling a foot at all. Seven toenails were missing, the remaining three mere pinheads on deformed toes.
At first as I thought of her future, I hurt for Chloe — for being 8 and not running as fast as the other children, for being 12 and feeling ashamed of her feet, for being 16 and never wearing sandals, for being 25 and coming to terms with her body. I hurt for my daughter.
Then I began to see that through the whole ordeal — the ultrasounds, the amniocentesis, the possible heart defect, the chromosomal abnormalities — this baby, this beautiful daughter, was indeed made for me. God gave me the strength to tell the genetic counsellor that I would not end her life. God granted me the wisdom to continue to research and ask tough questions. God gave me the courage to view her future in a positive light. God gave Chloe to Dane and me because He knew she would change our hearts, just by being born. God was with us the entire time, waiting for us to see that He is in control.
Even now, as Chloe twirls through ballet class, one foot trying so hard to tiptoe, I hear God saying, I am here. And I am blessed.
© 2005 Lori Howard. All rights reserved. Used with permission. Published at focusonthefamily.com.
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