It struck me again as we were snuggling after his morning shower, the overwhelming sense of joy because I get to be his mom. It doesn’t happen very often anymore, maybe because I’m lulled into complacency after six years or perhaps the challenges outweigh the joy, at times.
I realized that those who aren’t walking this road can never really know the contented feeling of snuggling a nine-year-old boy who acts very much like a young toddler. The thought of similar things when I was beginning this journey caused fear to well up. I could feel my throat constrict and my stomach feel queasy with panic over the very things that are now daily life.
I couldn’t have imagined being okay with a pre-teen who prefers musical infant toys to video games, or changing diapers on a child too big to pick up. I would’ve been appalled to think of fixing sippy cups for a third-grader.
Most of us spend our whole lives trying to mitigate disaster, to avoid pain, and to dodge unpleasantness. I still do, yet this boy of mine continues to teach me that embracing the hard has its own rewards.
When we’ve spent literally years trying to teach him how to live in a family, and he seeks us out to sit with us while he’s playing on his tablet, I am so grateful. He came to us without knowing how to show affection and not having any desire to learn, so I don’t take it lightly when he leans in for a kiss. Because he spent so long ignoring every question as his little non-verbal self didn’t know how to respond, I am delighted when he answers his brother’s query about how school was with a loud, “Good,” even though he’s likely just parroting what he was taught to say.
Things that seem so simple and trivial to most, are monumental in our world.
Please know the good does not make up for or in anyway overshadow the ugly. There is an inordinate amount of hard in parenting this child. Late night ER visits, physical pain from playful bites or aggressive throws, shitastrophes of epic proportions, constant neediness, broken furniture and electronics, and so many questions and self doubt.
Are we doing this right? Is there a right way to do this? How do we calm him down? What happens if we can’t? Will there be a day we cannot control him? What will puberty be like? Are we doing enough? …a never-ending sea of questions.
He wasn’t what I was expecting those six years ago when we flew across the world to add him to our family. I expected, no I wanted, a stereotypical child with Down syndrome. I wanted it to be just challenging enough to make us look good, but not so hard as to effect our daily lives. Laughable, I know.
This kid that I wanted to seamlessly fit into our family wrecked us. We are forever changed, indelibly altered but, though life will never again be easy, I am beyond grateful.
Perhaps, just maybe, without the pain, the joy wouldn’t be so powerful; without the difficulty, there would be less delight.
One thing I’m absolutely sure of though, there is grace for that.