Grateful Glory

I have a three year old. A roly poly, running, shrieking, hitting, biting, messy, laughing, climbing, mischievous glorious boy of three. I don’t write enough about gratefulness, or joy.

But first—my summer was kind of shit. Such lofty plans. For academics, summers are golden and full of anxious potential. You set many goals, checklist all of those things you should have done through the year and will not accomplish because, after all, aren’t you the one person in your family that has the summer “off?” For the first time since my son was born, I had regular child care over the summer. I would write and submit another article, because I must get a tenure-track job this year or let it go. I would prepare my job market materials. I would prep all my classes and write all my lectures in advance. I would throw my son the Sesame Street-themed birthday party I have been planning and abandoning for the last couple of years due to money issues and health crises. Then, end of June, health crisis. Tummyache turned to vomiting and writhing in pain turned to emergency room turned to dumbass Kaiser sent us home from the emergency room turned to frantic mother demands readmission and further testing turns to discovery of active Cdiff infection in his diverted colon turns to several days of almost-three year old writhing in what looks like labor pains before emergency colectomy turns to long recovery turns to almost a month in isolation in the hospital with daily blood draws, catheters, and enemas (and canceled birthday party, of course) turns to going home with a central line and me administering IV fluids—I really should go get my nursing license at this point—turns to weak, barely eating toddler and weary, nervous, PTSD-affected mother who won’t let him out of her sight until he’s healthy, wrestling roly-poly again therefore no work gets done. Turns to semester of regularly staying up until 3 am prepping for four classes and catching up on the course planning and lecture writing. And then waking up several times between 3am and 6am because traumatized toddler rarely sleeps through the night. I actually want to talk about the joy.

My son is three. He is healthy. He has gained several pounds since coming home from the hospital. The doctors keep remarking in awe at how great he looks at our follow-ups, how different from the fragile, sullen child they saw every day through the month of July. They umph in effort when they lift him. He pats their faces and smiles and blows kisses as if he never trembled and shrieked in fear at the sight of a white coat. He sleeps better and better through the night. When he does wake up in wee hours, I take him into my bed because we both need him close. He wakes me with sweet smiles that precede his open eyes and tickle-monster fingers poised for an early morning wrestling tumble of limbs and growls and giggles. He makes incredible messes when he eats and holds his little plate out to me when he’s done. He holds out his arms and legs to be dressed and fetches his shoes when asked. He goes to preschool now, a real, big boy school, proudly wearing his new backpack on his back, trotting to class on chubby-again little legs, dropping my hand and running to the toys as soon as we walk through the door, tossing an air kiss and wave over his shoulder. He is popular at school. Everyone knows his name and everyone gets fierce, dimple-armed hugs and little hands rubbing or patting their backs in perfect comfort and concern. He runs to me when I pick him up, in different clothes than he went in, grubby and flushed with joy, with dirt under his fingernails and paint from the day’s art project staining his hands. We go to the park, and I get out of breath keeping up, because he insists on climbing the big-kid apparatus and trying to rush into adult soccer and basketball games.

I think sometimes, at points in our joyful, frustrating, sometimes lonely, sometimes far too long days—I’m a mom. I’m a mom of an amazing little kid. Sometimes, as a Warrior Mama, I can forget that. I get so busy being an advocate, a nurse, and the motor of the clanky and delicate machinery that is co-parenting a medically complex child, that I forget to just be a mom. To be in the moment of being a mom. To just enjoy him. To luxuriate in the moments of fun, joy, wonder, incredulity, absolute hilarity. To laugh even when, especially when his learning and growing increases my labor.

I have been reading Down Syndrome parenting memoirs and getting more deeply involved with Down Syndrome support organizations. This genre, and these spaces are overwhelmingly white, middle to upper class, and nuclear-familied. It can be difficult, reading and hearing people talk about addressing the challenges through things like: electing to have one parent stay at home, hiring lawyers and paraprofessionals to ensure their children are accommodated at school, getting night nurses and nannies, homeschooling and going up to school every day to advocate for various things because their work situation, or having a full-time parent allows. While recognizing and detesting the way in which privilege to do such things is shaped by historical and contemporary operations of race and class, I actually do not hate on any individual family that has the resources to do the best for their kids—I would do the same for my child if I could, and I have my own set of privileges that I often take for granted. I just usually take it with a whole handful of salt, personally, when such people then want to reframe Down Syndrome as a blessing or a fun insider club. While I don’t disagree with the need, for our children and for a world that fully includes people with disabilities, to do reframing around the diagnosis, the blessing or insider club frameworks have been hard to swallow because I know the ways in which my son’s medical and developmental challenges intersect with other systems of oppression to limit his access to care, resources, and life itself. Life expectancy of Black people with Down Syndrome—still half of the average.

However…would I know to feel such deep, heart-bursting joy when my son scuttles across the grass at the park if I had not wondered, at some point, if he would ever walk or run? Practically swoon at the sound of his high-pitched laughter and smile even in the heat of a full-blown tantrum if there had not been a time if I wondered if my uber-chill baby would ever show the full range of human emotions? Be in such wonder at his grubby, strong, wiggling body and his hand snatching from mine in sudden independence if there had not been a time where he shuddered, weak, and clinging in my arms? Be so excited at seeing a mashed piece of enchilada going into his mouth and never coming out if transitioning to solid foods wasn’t such a struggle? Probably not. I do sometimes look at parents of typically-developing children, who have every expectation of their kid walking, running, eating, toileting, on a typical schedule, and think, you have no idea. There are parents of children with other disabilities where doing the things I have described will never happen who may be looking at me right now, thinking, you have no idea.

I don’t know if I necessarily feel lucky, all the time. But I am grateful. There are blessings here.


Jalondra DavisComment