I have contemplated writing about my son, his complicated medical journey, and my family’s experiences for many months. What I have come to realize, however, is that the story I need to share first, is my own. And I don’t know if it will be a popular one.
When I read other parental descriptions of raising a special needs child, I am struck by the parent’s ability to move past the hurt and anger they once felt, to embrace and nurture a child which once struck fear into their souls. There seems to be an acceptance, a peace of mind, that I just cannot, in honesty, admit to. I love my son. Fiercely. Every advancement he makes: a smile, a wiggly-type crawl, boosts my morale like a love letter to a soldier in the trenches.
But as I bang musically on a table to elicit his own dancing, and as I mimic chewing in the cowliest fashion to encourage him to eat, there is desperation. Desperation for him to copy and advance. To exceed all expectations. The truth? I still wish for him to be “normal.” And that sentiment, that wish for him, I am told, is meant to be overcome. It isn’t meant to linger for so long. My son is not yet 2, so perhaps I am creating an unreasonable pressure, internalizing the progress and reassurance of more senior members of this exclusive parenting club.
At some point, though, I know the message is clear: you will come to accept. You will come to celebrate in his achievements (which I do) but without heartache. The reality is that I sit here still, almost two years in, wishing for his situation to be otherwise. Wishing for my child to be someone other than who he is.
And so, in my loneliness, not wanting to drag my family and other children into my torment, confusion, and bewilderment, I turn to research. Research into his rare genetic condition. From dizzyingly technical texts and information that barely matches my son’s clinical presentation, I try to glean a prediction for his future development. My husband and I aren’t sure we have a full diagnosis, but we know something is wrong. We know he is behind in too many facets of development.
In my defense (if I need one), my story does include the attribute of gratitude. I am deeply thankful that my baby is, in fact, developing at all. That he is learning to do new and wonderful things. That his vision, which was once evaluated as visually impaired, has almost magically developed to near-normal. I am also grateful that I am able to distinguish between the warm, cuddly child I hold and the clinical descriptions of his situation. I am mostly grateful, however, that I have no trouble loving him. Even if that seems incongruous with wishing we could change him. It is not that my story is without hope. It is just, perhaps, not blessed with acceptance yet, or peace of mind.
In the last two years I feel like I have earned honorary degrees in physical and occupational therapy, medical research, advocacy, and cheerleading. I will fight for my son. I will not lose perspective or appreciation for what I do have (a devoted, awesome husband; another son; and a daughter who love their baby brother to no end).
And no matter what, even if I always wish he didn’t have this condition and feel pain in his delays, I will love him.