Sometimes we are blessed with a Forever Baby. This may occur with a genetic defect, illness or trauma. The child may be a Forever Baby literally because that is how their brain will remain developmentally. Sometimes, their brain development proceeds normally, but their body is dependent on the care of parents – forever. Sometimes, as with autism spectrum, it is suspected that there is complex thinking going on, but there is a thick, opaque curtain that does not allow speech to escape and filters actions and responses.
No matter the cause, there are times when we find ourselves with Forever Babies. Realization of a different future than the one anticipated is like the diverted vacation.
You purchase tickets for Hawaii. You read the brochures, shop for the right sandals, bathing suit and then you pack lots of sun screen. You take ukulele lessons. Images of islanders singing and dancing to a backdrop of waves crashing onto the shore at sunset fill your mind. You are definitely going to Hawaii and you are prepared. Then, just as you are about to land, the pilot comes on with an announcement: Sorry folks, but we will now be taking you to Alaska where you will spend your vacation days. “Trust me,” he says. You will still have the experience of your life. You are shocked, disappointed and loudly protest (in your mind only because you don’t want to get handcuffed by the Air Marshal). Beads of sweat form, heart races, tears well. Fear.
I am prepared for Hawaii – not Alaska.
Most parents, anticipating the birth of a baby, prepare for a certain destination. Their minds picture certain physical forms, eyes and ears that function, bodies that can dance and play sports, minds that can progress in thinking capabilities. They see T-ball games, birthday parties, graduations, weddings and grand babies. Then the Great Pilot of the Universe announces that the plane will be flying elsewhere.
So now you have reached the destination not planned for. Sure, with any baby acquisition, one never knows the outcome. One thinks a little about the “what ifs” but those horrors are usually pushed down into those places reserved for the unthinkable. Then reality presents itself and adjustments begin.
And that is when the hidden blessings begin to appear. That is when the heart-stealing begins. The wild and fantastic beauty of Alaska begin to rise. Who is this unique individual that does not conform to the thought processes or physical actions of Other Babies?” Can it be that I and this Forever Baby will be happy?
Research by Children’s Hospital in Boston suggests that parents of children with Down syndrome (Trisomy 21) live with a positive view of life and 79 percent reported that their outlook on life was more positive since having a child with Down syndrome. In surveying people with Down syndrome, 96 percent responded that they were happy with their lives, who they are and how they look (1).
Other research indicates that IQ does not equal happiness. Seeing and hearing do not equal happiness. A gentleman who was a competitive skier and had become blind spoke at a gathering I attended. He said he was often asked if he could turn back the clock, would he choose to have his sight back. In answer to that, he wove a story of a game, where each one of us are required to place three of our troubles in a big pile in the middle of the room. Now, we had to take three back out of that big pile. He contended that we all would take back the three troubles we had put in – as would he. By the way, he had developed a system where blind folks could still ski by listening to electronic clicks from the skier ahead of them.
No Fault Zone
Each disability is different and presents a unique set of challenges to a family. Among the most challenging are those that involve communication and behavior disorders. Science formerly placed blame on the mother. I remember sitting in a class with an instructor of psychiatric nursing and hearing how certain types of mothering caused schizophrenia. I am happy to report that I have lived long enough to see those scientific-based facts taught to me in 1985 disproved – as scientific facts often are if we wait long enough.
Currently, the womb is often seen as a bastion of safety only if the mother does the right things. Landsman (2009) points out that public health messages reinforce the concept that Mother has much control of whether the baby is perfect. Centers for Disease Control and Prevention (CDC) presents messages about preventing birth defects, but then reports that at least 70% of birth defects are from unknown causes. And then, there are birth injuries. And then there are accidents, infections – the list is endless of what can deliver us a Forever Baby.
There is nothing to gain by engaging in the blame game. Or the “if I only had” game. Speculation of cause is of no help to the family living with Forever Baby. Forward movement is key. Support systems are required to avoid parent and sibling fatigue. Deeds and words count.
And love. Lots and Lots of Love.
- Skotko, B., Levine, S., & Goldstein, R. (2011). Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A. Vol 155 Issue 10.
- Landsman (2009). Reconstructing motherhood in the age of “perfect” babies: Mothers of infants and toddlers with disabilities. New York: Routledge
- Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/birthdefects/prevention.html