BigGuy turns 12 this week. Eleven years ago–just shy of turning one year old–he looked into my eyes for the first time. That’s right: one year old. We were already 4 months into “global developmental delay” hell. He had been flagged with possible mild cerebral palsy and deafness–the latter quickly (presumably) ruled out with a test that showed his eardrum to be working, but couldn’t tell us if the messages between the eardrum and the brain were being relayed and interpreted properly if at all.
Eleven years ago we were roughly two weeks into removing the trace amounts of dairy that existed in our diet (I was still nursing) and rushing back to the immunologist that diagnosed his immune deficiency just a month before. I wanted him to see my son–to see if I was just hoping to see something that didn’t exist or if an objective eye could say that there was change. In fact, there was change; and the immunologist confirmed that the dairy could be the culprit.
BigGuy has presented us with challenges since conception and we spent a lot of years swamped in various developmental therapies, research, interventions–not being a family, but being a therapeutic unit for this small child who has come so far. IT. WAS. HARD.
It was overwhelming.
It was exhausting.
At times, it was very, very scary–because we weren’t sure if he’d ever live independently (which actually didn’t occur to us until a round of tests at age 3).
“So often we parents of special needs children come to live a life that inadvertently becomes defined by our children’s problems. Life becomes a series of therapies and nights of research or online support groups. It’s not intentional or malicious–it’s just how it happens. We never know the delight of the moment because we are plotting the future… what else can we do? Who can we see? What can we give them to help? Who on EARTH can care for them if and when something happens to me (and my spouse)? Will they ever live independently? It’s an organic process for sure. But it’s not a positive one.
“Let me tell you what my son’s challenges have done for me…”
That is an excerpt from the guest post I did called “Let Me Tell You About My Son” over at my friend’s blog, “Unveiled and Revealed“. She has dedicated the month to “Parenthood Perspectives” with each week dedicated to a very different parent experience. I hope you will find beauty in the journey. ❤