In a Good Place
When the sun shines in January, my home is flooded with light. Designed by a carpenter in the 1950's our house has wide overhangs that protect the rooms from direct sunlight in the summer, yet allow the warming rays in through out winter. The two feet of extra roof saves us in heating and cooling costs all year. There is cozy spot on the couch in the living room where the sun shines in almost hot in the early afternoon. It is a good place to spend Nathaniel's nap time. Reading. Writing. Editing photos. Drinking the last of the morning coffee. It is a good place.
We are in a good place with Nathaniel. He has been doing well for a couple months. His last illness was early December. Issues we had with feeding and weight loss in the fall have resolved with the change in his formula. He has gained. Weight and skills. He has finally outgrown his 12 month infant size jeans. He is using his talker more and picking up new signs weekly. He merges between the two like a teen driver looking for the fastest lane on the highway. His play skills have lengthened. He enjoys sensory experiences he previously resisted. He is sleeping better. It is hard to pinpoint a single catalyst for the positive changes. But the good place is welcomed.
Last Saturday was warm and we were outside most of the afternoon. Rich taught Nathaniel how to go down hill on his Radio Flyer bike. He went over the handlebars multiple times; his face muddy by dusk.
Today he painted. Red and blue streaks replaced the mud. Seeing Nathaniel experience life in such normal ways brings assurance that the non-normal ways we live will continue to slowly fade. Nathaniel was discharged from Newborn Medicine clinic and two other specialities feel comfortable waiting a year before his next appointment. A good place.
Sometimes, I wish there was a how-to manual on raising this kid. I read blogs written by other trach moms, but their ways of living do not fit perfectly here. What works for them, does not always work for us. Options must be evaluated. Decisions must be made. What works for us today probably would not have worked for us had Nathaniel come into our lives twenty years ago. Watching Rich raise seven other children lets me stand to the side with a camera when he puts Nathaniel on a bike at the top of a steep hill. Would a mud smeared sweater and paint stained face be in the manual? It is in living life, in the challenges of the daily, that we are finding the good place.
Nathaniel wants the waffles on Saturday morning. He holds out his hands at mealtime prayers and yearns to be included in the family eating rituals. Released to go play, he returns to the men on the stools. Climbs, reaches, settles on a lap, dabs fingers in syrup. He ate play dough last week and we suctioned red out of his trach tube. Our own aspiration dye study. Despite being in a good place, there are still struggles. This is life. So he is wrangled to the top for waffles. To a good place.