Last Christmas I bought a book for Jillian and Mark titled, “Leo the Late Bloomer”, a story about a little tiger that wasn’t developing as he should, no talking, no drawing, and namely no blooming. Eventually Leo blooms, emerging as a talking, coloring, playful tiger. I think to some degree when we hear words like “developmentally delayed” we think that the development will come and our child will bloom, it will just be late. And as time marches on, I begin to understand what a friend said about the cruelty of that term. We hold our breath for the firsts that we think are coming but never do.
I think about the baby calendar I had for both kids that required stickers to be placed on the specific dates that “firsts” happened. I still think about the large quantity of stickers left in the back of Mark’s calendar, unmatched to dates. I think about the child development books I have shoved into a box in the basement and the emails I unsubscribed from that reminded me of what my child “should” be doing. And I try really hard not to pay attention to what other children are doing, but as Mark gets older the difference becomes ever more pronounced. When he was two, it was acceptable for him to be nonverbal as many children are late talkers, and even at three, this didn’t seem totally out of the realm of possibility, but we are now rounding the corner to four and Mark is almost the same size as Jillian and the difference is becoming increasingly more obvious.
Oddly enough it has become the most difficult to be around infants and small toddlers, not the children that are Mark’s age. I see young babies point, show joint attention, engage and even speak soft words, and I take a shaky breath realizing that as Mark grows his voice will change and mature, and I won’t be able to hear the tiny, so small voice of a precious little one. I was out with Ike and the kids for dinner at Panera and over Mark’s shoulder, I spotted a mother and father with a toddler that looked to be about 18 months old. As the mother smoothed out the protective plastic covering in front of him and carefully laid out a container of cheerios and his sippy cup, I could see the toddler drinking and eating independently while chattering away to his mom. And as I focus in on the foreground I see Mark primitively grasping his cereal out of my hand, only drinking when I offer him his cup, staring past us and avoiding our gazes. It’s moments like that when make my eyes well up and I am overwhelmed with the sadness of what I wish I had.
Though the initial shock of the diagnoses has faded, the continual mourning of our original hopes and dreams is heavy and burdensome, acceptance of our new reality is sobering, and envisioning the future fills me with trepidation.
Just when I think I’ve arrived at a place of peace and acceptance, something completely small and out of the blue will knock me backward and I feel the intensity of those feelings that I try so hard to push away.
To drag myself away from the dark corners, I attempt to focus and capture the small positive changes that I am cognizant enough to recognize. And yet even more powerful are the observations that Jillian makes because despite the sometimes hardening of my exterior, she is still pure, filled with enthusiasm and open to new things without the burden of a fortress built around her. Over the weekend I surprised her with decorating her room in Christmas lights complete with her own decorated tree. I’ve never seen her smile so big than when she walked into her room that night. And even more, she wanted her brother to be in there with her. So she came downstairs, gathered paper, crayons, and some books and headed to her room where Mark waited. A few minutes later she came running down the stairs, “Mom! Mom! Mark is coloring all by himself! I didn’t have to hold the crayon or make him do it, he’s doing it!” I ran upstairs, peaked around the door and saw him sitting next to a piece of paper with several scribbles as he played with a toy house seated next to her little tree. Jilli looked at me and excitedly said, “he’s like Leo!”
Often my vision is clouded by the need to protect myself from continual disappointment, but thankfully God gave us Jillian, who can still see very clearly real greatness before her, and celebrate without pessimism, the milestones that are so obviously being reached. So this next year, I will resolve to see Mark in the same light as Jillian, with a hopeful, open heart, willing to embrace where he is and celebrate the developments no matter how small, because we have seen that God is incredibly mighty in those moments.