To celebrate Bounce Back Day and our yearly ritual of renewal, we took a trip to Longwood Gardens. Under the oppressive February sky, our van drove past fallow fields. Starlings lifted as one like the blackened ghosts of leaves from ice gray grass, puddles like mercury briefly capturing their reflections. Muted yellow spikes of witch hazel and freckles of lime colored moss seemed the only natural color for miles and miles. Then we entered the conservatory, humid as a winter barn, a riot of color. A thick sensation assailed me like a midsummer scent of decay for a moment, and my hand went to my nose, confused, until my eyes fell on the ruddy lilies crowding beside me by the thousands. Instantly, the perception of the scent changed into something pleasant. No, Meg, not danger. Lilies. Remember?
The boys hurried to the children’s garden, run-walking so as to follow the letter of parental law with occasional backward glances, and I followed. I wondered at the strangeness of it- that I can take this glass house of wonders, carved out of soggy, threatening February for granted. I considered aloud what it takes to keep a place like this going. The boys, however, were in its thrall and all that they saw glittered with the slick light of newness. Water vapor that they can blow aside or fluff with their hands in intricate, strange patterns above the hidden pool beneath the children’s garden stairs. The way that slate tiles turn dark when painted with water begs for a full investigation. The flowers come in their favorite colors, as if made just for them. We parents stand with them in paradise, and yet also outside of it- and we try to convince them of its stability, despite the other reality just outside its glass walls. Despite the web of complex social contracts and systems, trusts and man-made innovations that chug and grind beneath the pretty walkways, all of it required to make this paradise thrive.
Medically, Jack’s past year can be characterized as a lengthy plateau. We haven’t seen any really traumatic setbacks this year- no hospitalizations, no major illnesses. Jack has experienced plenty of concerning rashes, fevers, some respiratory viruses and lengthy stomach bugs that have left us poised for action, racing around to rule out serious problems (is that rash a normal kid thing, or MRSA? Is this week-long stomach problem just a virus or a sign of shunt failure?) While the woods we dwell in have been warm and calm this year, we are jumpy within them. Perhaps we’ll always have the feeling that the shape we see out of the corner of our eyes is some rare and hulking danger. We no longer trust that which we cannot see and instantly classify.
Jack continues to wear his speaking valve or HME during the day, but has not fully weaned off of the ventilator, despite our efforts. He still requires oxygen and the vent frequently at night though he continues to use the AirVo many nights a week with success. Jack had his fourth swallow study this September. Because we observed that he was making a gulping sound when we asked him to swallow, and because he has increasingly demanded food and water at mealtimes over the past year, we had some hope that he was figuring out how to get food down, yet the study again showed no improvement. While there is some hope that Jack may be able to have his trach removed despite a continued inability to swallow, this is a complicated mix of factors, and we remain uncertain of the path ahead. Jack also had a new hearing test, which showed normal hearing in his left ear, and no discernible hearing in his right. He was such a trooper at the test- which has now been repeated many times. He was an expert at it.
If Jack is our hothouse flower, his teachers and nurses are the gardeners. Nursing remains imperative to our family, and yet is a constant source of managerial stress. We continue to rely extensively on home nursing to facilitate Jack’s ability to attend school, and to allow us to work during his frequent fevers and illnesses. Delaware Medicaid is the vehicle which provides access to nursing, and so we have watched the national political landscape with regard to Medicaid with increasing concern over the past year. We have a great team of nurses, many of whom are like family, though we did recently have to remove a nurse who worked with us for over a year from the case due to some flatly negligent behavior. Jack has become aware of the relationship between his medical needs and this great staff of people. He frets sometimes about what it will mean if his trach is removed one day. Will all of these people suddenly vanish from his life?
Jack now attends a hybrid school program- heading to Christiana Early Childhood Center in the morning, where he enjoys a diverse and boisterous classroom of peers in a traditional preschool program, and Delaware School for the Deaf in the afternoons, where he gets speech and physical therapies and one-on-one attention from his teachers. It’s the perfect environment for him right now, and his development is astonishing. I have been especially amazed by his growing ability to count and recognize patterns, to write and sight-read simple words, and his verbal skills continue develop above grade level, and he loves word play. Despite the effort that it takes to sustain this environment, our fragile boy is thriving in every way possible. He even started gymnastics this year, and we couldn’t be prouder of him for working hard to strengthen his body and push his limits. And, I think he’s proud of himself, too.
Sam doesn’t enjoy all of the benefits of this greenhouse- and he has not been able to attend preschool and reap its benefits as I would have wished. I do find myself worrying about his kindergarten preparedness at times when I see the ease with which Jack can identify letter sounds and puzzle through simple mathematics concepts. Yet, Sam is and has always been less a hothouse flower, and more like the forsythia. Plant it anywhere and it grows, a little wildly and in unexpected directions, but no less dazzling and full of sunshine when its time is right. And, being “out there in the world”, Sam has a much more sophisticated sense of managing interactions with peers than Jack- his shyness vanishes when others the same age are present. Sam remains intensely interested in science topics- where things are in the world, how rocks are made, how weather happens, what makes a car go? And he is creative! He loves to play the “What if” game. A recent back and forth looked like this:
Sam: “What if our house was made of paper?”
Me: “Hmm… Then I guess it would fall apart as soon as it rained”
Sam: “Not if the rain was also made of paper!”
Sam’s art is one of his great loves and his skill has continued to evolve to the point that the “machines” he creates have become so fascinating that we decided to commission him to create the art for our newly-painted hallway. I believe Sam has all of the ingredients to take off in Kindergarten, and in life, just as his brother does.
And for our family, I think we are proud of what we have built to keep Jack thriving, though it seems scarcely sustainable at times. We will never stop living outside of the woods, outside of fear, but maybe that is just the human condition.
All this was new,
No longer could
They sleep beneath
The trees, trusting
Branches not to break.
It was a habitation
They had to make:
Four walls and a roof-
A place to live,
A world inside the world.
–Excerpted from “To Build” by Gregory Orr