Discovering you are pregnant brings a sense of euphoria and a hope for the future. You imagine your child’s first day of school, first bike ride, attending high school and college, graduating and getting married. You rub your belly and smile.
Arriving at your twentieth week sonogram the excitement of discovering the baby’s gender keeps you grinning from ear to ear. You secretly wish for a girl but will be delighted whatever the outcome. After the sonogram, you meet with the doctor to receive the good news.
He greets you but is not smiling. You are told the baby is a boy but there is a problem. Your heart pounds. What could be wrong? Can it be fixed? Should I get a second opinion? Joy turns to disbelief.
I experienced this drama in my own life. My son was born with a rare and considered lethal form of dwarfism called Thanatophoric Dysplasia. He is now ten years old. Looking back, I wished I would have fully understood something our doctor said.
About a year after my son’s birth, one of his neonatal doctors told us that all children are different. That is so true. Children with autism have a range of symptoms varying in severity based on where they fall on the autism spectrum. I believe Downs Syndrome children also can have a spectrum of symptoms and that each case does not necessarily display all aspects of Downs Syndrome. One mom shares her own experience of this in the following article. www.themighty.com/2015/04/my-daughters-are-on-opposite-ends-of-the-down-syndrome-spectrum/
Of the 53.9 million school-aged children (age 5 – 17) in the U.S…about 2.8 million (5.2 percent) were reported to have a disability in 2010. www.census.gov/prod/2011pubs/acsbr10-12.pdf
And so it is with Thanatophoric Dysplasia (TD). One child requires life-long ventilation while another does not. One child may have progressive hydrocephalus while another does not. One child may have seizures while another may not display any seizure activity.
So the doctor was right, our child is different. Though he required a ventilator, he has been off the ventilator for over two years now. Oh, what I would have given to know this information in 2005/2006. He does not have progressive hydrocephalus or seizures. (There are other TD traits my son has which I’ll share in another blog.)
One thing is constant though: a mother’s love. Whether a child is on one end of the spectrum, in the middle or on the other side, love runs deep. My love, steadfast and strong, sees past my son’s diagnosis to the sweet boy I have been given. Many of my relatives, co-workers, and friends met Samuel in the hospital. There were many probes and wires attached to him. However, when you looked at him in the crib, the wires simply melted away into the background.
His smile captivated everyone, especially his mother’s heart.
So if you find yourself newly diagnosed with a special needs child, be encouraged. You will surprised by the strength, courage and most of all the intense amount of love you will have for your child.
Does your child have special needs? How does your love overcome their diagnosis? Please share, I’d love to hear your story.
By Evelyn Mann
Author, A Miracle In My Living Room