I remember hearing Hillary Clinton on many occasions say that it takes a village to raise a child, an ancient African proverb. It was not until our second child, Cameron, was born that I truly grasped the meaning. Adding a child with special needs into our family taught me how important of a role a village can play and does play in the raising of our children, Abby and Cameron.
Our daughter, Abby, was only 19 months old when she became the proud big sister to Cameron. She was fascinated by him from the moment she first laid her eyes on him. This would be one of those rare typical two-children moments for my husband Tim and me because our world would forever change when Cameron was just 6 days old. We would become a very different family of four than any of our friends and family members.
Despite concerns over Cameron’s lethargy, absent cry and disinterest in feeding, Cameron and I were discharged from the hospital two days after he was born. He slept through the night the first night home and never woke for any of his feedings. We had still not heard him cry. I called the pediatrician concerned, but was told to be thankful to be getting a full night’s sleep since most new parents are so sleep deprived.
At 6 days old, Cameron developed a high fever. After multiple spinal taps, being placed on a ventilator and numerous medical complications, Cameron was diagnosed with suspected meningitis. He received the antibiotic regimen for meningitis and at 1 month old was discharged home as a normal, healthy newborn. We would soon learn he was not a healthy newborn.
At 7 weeks old, Cameron displayed seizure-like activity and was admitted to another hospital for testing. That day our lives would forever change. An MRI showed that Cameron had suffered extensive brain damage and brain atrophy, consistent with a cerebral palsy diagnosis. The diagnosis would later be confirmed when he turned 1.
Unbeknownst to us, our village expanded the day of the MRI to include Dr. Nishant Shah, the director of pediatric neurology at Advocate Lutheran General Hospital in Park Ridge. He spent more than two hours with us that evening, allowing us to cry, to ask the same questions over and over and to trust that he would provide all of the support we would need to help Cameron. That night Dr. Shah defined the "rules" of our village. As we questioned him about whether Cameron would ever walk, talk or play with toys, Dr. Shah told us: "The day you say Cameron will never do something, he never will."
We did not share the results of the MRI with anyone. We thought we did not need a village to raise our children, we could do it alone. And we believed that if we did not tell anyone about Cameron’s brain damage, then maybe it really would not be true. But within three weeks we learned how much we needed support. One day I broke down crying to my mom. She became the second member of our village.
People often ask how I survived that first year. I honestly tell them that I am not sure if I would say I survived, but rather I would say I existed. I cried every single day, especially at night after Tim, Abby and Cameron went to bed. I cried thinking about all of the painful procedures Cam had to endure. I cried thinking about the many times I had to leave Abby with my mom so I could care for Cameron in the hospital. I cried because I believed and still do believe that if our first pediatrician listened to my concerns after Cam was born he would not have suffered extensive brain damage. And I cried because, more than anything, I loved my son with all of my heart and the uncertainty of his future felt unbearable.
I found support from Cameron’s therapists. It was safe to be open and honest with them and I welcomed the opportunity to not have to put on a smile and pretend to be OK when some days I was not. And I had the good fortune to meet Angela, the parent liaison for our early intervention office who provided support as a fellow parent of a child with special needs. Angela was there to listen and let me cry when Cameron would plateau in therapy and she was there to celebrate each of his achievement regardless of its magnitude. And so entered many more members of our village.
Throughout that first year, Cameron had many other medical complications and by the end of the first year he was also seeing a pediatric pulmonologist, pediatric ear, nose and throat specialist, pediatric orthopedist and pediatric allergist. Our village expanded to include these many different medical professionals.
Did we allow anyone to enter our village? Yes, we did. However, some memberships were revoked. On a few occasions we encountered medical professionals who wanted to place limitations on Cameron and we could not allow that. During those times, the philosophy Dr. Shah shared with us became key to our ability to get up each day and face the day with a positive attitude and a sense of hope.
Three women I had considered friends for life also were removed. We had a playgroup with our children and at first they appeared supportive of Cameron’s special needs. But then one day one of these women told me that she would never have wanted to have a Cameron and went on to say some very hurtful things about parenting a child with special needs. I stepped away from our social circle, the last part of what remained from the "normal life" we had previously lived. These women collectively left everything I had ever given them or their children piled high on my porch. When I arrived home, I cried harder than I had ever cried. I cried because I realized then that there will be people who will not see the joy Cameron adds to our lives. His arrival was a gift. Yes, when we opened the package it was not what we expected it, it was even better!
When we started our journey into special needs parenting and I began to realize that it would take a village to help raise not only our children but our family, I had a preconceived idea about who would be members of our village. I automatically assumed that it would include each family member, our friends and medical professionals. Yes, our village does include family members, but not every family member. We soon realized our friends would be very diverse, some would have a child with special needs and some would not. And finally, I never would have imagined the level of support and involvement the members of Cameron’s medical team would play in our lives.
And so yes, I have concluded that it does take a village to raise a child, particularly a child with special needs. I am so thankful to each and every member of our village, because of each of them not only is Cameron going to become everything that he can be, but so are we, his mom, his dad and his very loved big sister Abby.
Becki Enck is a Crystal Lake mom. Follow her family’s journey at www.cameronsjourney.com.