Have you ever spent time counting the little tiny blips that fly on your radar? I hadn’t until my son Amos made an appearance in the world. Children that “don’t land perfectly” on this earth may not fit the mold for expected progress and so, a parent grasps for some bit of accomplishment to report. My older three children were fairly typical and you can review their half finished baby books and take note of first words, sentences, punishment, scooter riding, those type of things. My son Amos has made great strides but they are difficult to articulate to the average listener and so, I find myself hesitant to share his tribulations.

Just a year ago, I longed for him to walk. I was hoping he would do so before his second birthday and so we worked all summer, dutifully attending physical therapy twice per week and spending countless hours working his muscles in the water or traversing the sand. He walked. At 22 months he took his first steps and we cheered. The summer before that, right before his first birthday, he was not crawling, babbling or even able to sit up and he gagged if you fed him solids. That baby has grown into a brilliant toddler and those examples are ones where progress is noted and boxes are checked.

Counting mosquito wings is what I have been doing as of late. Teeny tiny glimpses of improvement that leave me uneasy in wondering if they are worth sharing. Of course they are, everyone would say, but still they are such small steps towards big goals and sometimes when I think of them or offer them aloud, I sound almost apologetic and feel annoyed with myself. I don’t want to pause and bluster my way through the conversation though I like you asking questions. It’s just that the truth hurts and talking about the minutiae of progress leaves me feeling somewhat defeated. As much as I advocate asking and sharing, this subject feels very close to my heart and I guard his progress yet I am counting. Counting and collecting each snippet of my darling son’s progression, particularly since his posterior tongue release surgery nearly three weeks ago.

The progress goes something like this. Amos has only gagged once since the surgery. He has eaten oatmeal and Mac and cheese, mushy foods which he steered clear of before due to the gagging. When he eats now, the food is moved to the side of his mouth a bit, not just dead center at the front as before. He is making lots of vocalizations, not babbling of consonants but I definitely hear his voice more often. He is mimicking more correctly and when he says “more”, I can hear the r a bit better and his rendition of “oh no” sounds accurate. He blew a toy horn today and he has never been able to get enough air out to make a sound. Do you see how those things may sound inconsequential in casual conversation? I wish I could say he had ten new words or that he called me when he needed me or told me “wa-wa” when thirsty, but he doesn’t yet.

I share to offer an example of what it feels like to be the one that must answer questions in the way she wishes she did not. I read your kind eyes and your bravery in speaking is to be lauded. I commend you for taking the bit of heart I have offered and I read the genuine love in your eyes. I just can’t meet your kindness head on or go deep enough yet. It’s too hard and so, I may hide a few weeks more from the friends that know me and long to greet me and want the best for my Amos. I’m just not quite ready to venture down the road that will be coming in a few short weeks. I need the last moments of freedom as a reprieve from the world and a chance to think to myself and be strengthened by the peace I shall seek.