My oldest child is neurotypical and I can't look at his baby pictures without feeling incredibly sad.
I don't know why. Those were the happiest years of my life. I long for those days again. I've struggled to put into words why I feel great sadness over old pictures and videos of him, until recently.
I went out to dinner with a fellow special-needs mama who lives about a mile down the street from me. Her daughter has the same syndrome as my younger son. She's a little bit further along on this journey and very wise. She said, "When you posted a memory on Facebook of you and your oldest son when he was a baby I felt really sad. You had an innocence that you don't have now." She paused and then through tears said, "You had absolutely no idea what was coming."
That's the sadness I've been struggling to identify.
Those first few years of Mac's life were like the long, lazy days of summer. We watched Sesame Street and went for walks in the morning. Ate peanut butter and Pirates Booty for lunch. Crashed hard during afternoon naps. Read through stacks of story books from the library. Met friends at the park for play dates and played Duplo Legos on the floor until Daddy came home from work. It was the same at-home schedule every single day. It was so routine. So boring. So...normal. So not like my life now.
All that once was, is now tinged with guilt over what it has become, through no fault of my own. But a lack of innocence insinuates there is guilt. That's what I feel. It's this subtle weight of guilt over how Mac's life and my life, have changed since Nathan was born. Goldfish crackers have been replaced by feeding tube equipment. Pretend play is now countless hours of therapy. I don't even want to think about how much would-be downtime is now specialist appointments.
And so it goes for most of us in one way or another. The slow or sudden loss of innocence from something painful or hard in our lives. We live from one moment to another not knowing what's around the corner. We can't live in fear of it and we can't live expecting it, but can only stay present with the weight of all this moment holds—good and bad.
I'm learning there is much to be gained from a loss of my innocence as a "normal mother:"
Greater appreciation for milestones I would have taken for granted before.
Deeper understanding of God's unconditional love for me and how I'm to love my son.
Higher highs and lower lows.
More acceptance that I won't—I will not—make it without supernatural strength from above.
Steadfast and unwavering belief that there is a perfect Kingdom beyond this life.
Perhaps the most beautiful gain, is that though my innocence was lost when my son was born with multiple disabilities. His will never be. Nathan will likely maintain the innocence of a child for all his days, giving others a perspective many of us lose way too soon.
So live freely my little one. Teach us how to love deeply. Be fully you. Show us the way back to innocence. Lead us to the way things were meant to be and will one day be restored to again.
Kathy McClelland is the author of Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent. Her second son was born with a rare (1 in 50,000 births) chromosomal disorder which catapulted her into the world of special needs parenting. A former marketing manager, she now blogs at kathymcclelland.com about finding beauty and hope in the midst of broken dreams. She is also a regular contributor to PreemieBabies101.com and has published on TheMighty.com, EllenStumbo.com and Sparkhouse.org. She lives with her husband and sons in Austin, Texas.