It really is the little things

I took it all for granted with our 8 year old, our first son. Every skill. Every single milestone. Even the tiny, minuscule things. All of it. Even the skills that I had no idea were a big deal. Transferring an object from one hand to the other. Clapping. Tall kneeling. The pincer grasp. Took all of those for granted too. Even the seemingly insignificant things. Sitting in the grocery cart. Holding a spoon. I assumed those were just a “given.” I know this sounds crazy but I took the messy parts for granted too. Potty training. Pulling the toilet paper off of the roll. The artwork on the walls. Every. Single. Thing.

You know why? Because I assumed it all was a given. Every single day babies grow and change and learn about the world around them. Every day they get stronger and are smarter than the day before. All of a sudden they are mastering one skill after another as you clap and cheer.

But what if they don’t? What if they never do?

Many of you know Christopher, our amazing middle child. But for those of you who don’t, he’s 5 years old with a genetic condition, congenital disorder of glycosylation, which causes him to be severely developmentally delayed. He has never clapped. He cannot sit on his own without toppling over after a few seconds. He gets tired very easily and has a hard time holding his head up for long periods of time. He has never said a meaningful word. An insignificant virus can land him in the hospital for days. He has cerebellar atrophy, hearing loss, vision impairment, is fed via gj tube nearly 24 hours a day, and so much more. Developmentally he is doing less than a typical 9 month old, and I know this first hand because his little brother, T, is just that age. I can’t tell you how badly I wish I could go back 8 years and appreciate the small things so much more.

This third time around I am doing just that. I am not taking one thing for granted. Nothing. I am marveling at typical development and how quickly our T is learning about the world around him. I love his defiance. I love his curiosity. I adore the mimicking. I am in awe at how quickly he will master a skill and move on to the next. I can’t get enough of the self feeding with his chubby little thumb and forefinger grasping a mandarin orange piece. I can’t handle the adorable dancing in his car seat. I love the way he looks when I challenge him by saying “no.” And putting every single thing into his mouth. Yep, even loving that.

Because this time around I know that not all babies just “do it.” I know that nothing is a given. I know what it feels like when your child takes a year to hold their head up. I know the ache you feel when every child around them is passing them up. I know the agony when you learn your child may never walk or talk. I know the heartbreak when you realize your child’s list of nevers is longer than the maybes. I know what it feels like to spend night after night in the hospital praying for your child to recover. I have cried myself to sleep many nights from worry, fear, or guilt. I know the feeling of terror and grief when you are told your son has a life threatening and completely life altering disorder. Absolutely nothing is presumed. And every thing is worked for. Not one thing is a given.

I put T in a grocery cart this week for the first time. So many emotions flooded over me. I was beaming with pride but deep inside there was a sad ache. Something so small, yet something so huge. Something so insignificant that could bring me so much joy but heartache at the exact same time. Because I know. I know it’s the little things.

And this time I am not making the same mistake. I will celebrate. Every. Little. Thing.