In this day of easy access to the Internet, Special Needs parents can drive themselves crazy just a little bit faster. The day that the doctors explained Ayce’s initial diagnosis (Hypoxic Ischemic Encephalopathy, level 3) , I was on my smartphone every minute that I was not by his side in the ICU googling outcomes and trying to figure out how we were going to deal with the likely death of our beloved baby.
The second diagnosis- Cerebral Palsy- was a little bit easier for me as I had previous experience working as a nurse in a group home for people with developmental disabilities, but for my husband, this was what brought reality home. Searching web articles for a description that might show us what Ayce would be capable of in the future became a frequent pastime of ours while we sat in the NICU or as I spent endless hours attached to a breast pump (more on that later). Eventually though, a resident calmed me by telling me this: Ayce will let you know what he is capable of. As Ayce, his Papa, and I move through his early life, that has become more and more of a mantra for me. I refuse to get worked up about timing of things and instead rejoice in the little victories that Ayce is showing me: He can track brightly coloured objects with his eyes! He is attentive when presented with light! He allows us to guide his hands to different objects so he can experience textures! He gets the sweetest smile on his face when we cheer for him and make him clap hands!
I have purged my house of books telling me “What to Expect” as far as developmental stages go, I have no charts from Public Health, and I have removed myself as much as possible from the temptation of asking the Oracle about what “comes next”.
I’ll tell you something, though; it gets mighty lonely out here without that “Community of Moms” I was expecting to find once I gave birth. I am so grateful that a health nurse in my home town has put together a little playgroup of children with various disabilities. We have recently made a new friend! A mom whose four-year-old daughter also suffered from a brain injury. Today we had a play date and I felt more connected to another mother than I ever have. It is a liberating feeling to be able to discuss physio and OT, to openly admit the developmental tasks that my son has achieved without worrying that she will look at me with pity, mentally comparing him to her child.
Today has really emphasized to me the need for community. If anyone gets what that resident meant those early days in the hospital, it is another Special Needs mom. If you have stumbled across my blog because of a bout of Googleitis, please allow me to be your first step to a cure! Get in touch with me or leave me a comment. I am happy to celebrate what your little one is capable of!