A very common thing happens to parents after having a baby. A very strong bond builds between the parents and their baby. Without thinking about it, the parents know they will do anything, including sacrificing their own lives, if it means that their child will have a better life. For most parents, this bond continues throughout the life of their children. However, as their child grows up and becomes more and more independent, their life no longer relies on their parents causing the bond to change. It is not necessary for the parent to be there 24/7 for them and the bond starts to become one of love and friendship instead of love and survival.
For the parents of a Rett Syndrome child, the bond does not change. The same protective, nurturing, and self-sacrificing feelings remain for many of us. As our child grows up, she doesn’t become more independent. She doesn’t have a future where she can leave the family home to start an independent life of her own. A Rett Syndrome child continues to need 24/7 attention for her parents. For some parents, fear of the future is added to the bond. If we are lucky, our child grows up to become and adult…and we become older. She becomes bigger. We become physically weaker. This eventuality makes parents have thoughts that most won’t speak about. How can I live with the grief of losing my child too early? But who can I trust to love her like I do if I pass away first?
The strength of the bond with a Rett Syndrome child is impenetrable which is such a source of joy but also comes with the curse of fear.