Rob

Laughing, April 2012

It was a busy week. I scheduled alternative “intensive” therapy for Jasper, in addition to his usual grind. This added one appointment each day to our schedule, which meant that on a few days last week, we had three appointments. It may not sound like much but it consumes your entire day and nearly all of your energy. On Tuesday, one of our appointments included neurology at Children’s Hospital, our last appointment that day. Jasper and I have a friend who has been at Children's for over two months now. So after neurology, we paid our six year old friend and her momma a visit.

Before Jasper was born, my only association with Children’s Hospital was riding by on my bike about a thousand times - on my way around Lake Washington, or to the hills of Kirkland, or en route for a long rural ride in Snohomish County, what would be a century ride by the time I got back home to ballard (I often did “century,” or 100+ mile rides then). I would pass by the hospital, contemplate it for a moment - pay my respects - then move on as my legs propelled me to the crest of the gentle hill on Sand Point Way. My first time at Children’s was when Jasper was transferred to the NICU as a newborn. I wasn’t yet comfortable with the role of parent, mother... let alone primary caregiver. My mind was spinning with so much information, so many decisions, emotions - so much out of my control. Jasper spent most of his week there in the NICU. Children’s provides limited (and spare) accommodations for parents whose children are in intensive care. Nursing mothers get first priority. So I moved in for what felt much longer than one week. The closet sized rooms are on the fifth floor, above the NICU. There is a common room and a corridor leading to it that affords a distant view of downtown Seattle, and the Space Needle. I remember being there that Saturday night, walking along the corridor to my room and catching a glimpse of the Space Needle. I’m still in Seattle?? I thought. My emotions had been on high since Jasper's birth, and had taken me away. At that point, my life felt utterly unfamiliar. The Space Needle grounded me, brought me back to earth. I had been transported to a new level of adulthood... but I was still in Seattle. After all.

Jasper was at Children’s for a week, though it felt like weeks. One week is nothing compared to stories I have heard from my special mom friends. I remember when I got to the hospital and was given my plastic caregiver identification badge. It was good for one week, from February 17th to February 24th. We will be out of here by then, was my only thought. That was my goal. It happened to work out that way. Jasper spent the first five days in the NICU. His neurologists were trying to control the subclinical seizures that resulted from his stroke. Progress was sketchy - good one day, lousy the next (his seizures were categorized “difficult to control”). After a holiday weekend long AEEG - a continuous EEG, with fewer probes that attach to the scalp with small pins instead of adhesive, meaning I could not hold my newborn for three days - Jasper graduated to the medical floor. Until then, I hadn’t met any other parents and it was there that I met Rob. Rob had noticed Jasper - there weren’t many other babies on the medical floor. I don’t remember the exact details of our meeting, but Rob must have introduced himself and asked about Jasper. He was there with his 15 year old daughter, a few rooms down from ours (at that point, Jasper and I shared a room). Rob had this bright smile and was super positive, he breathed hope. He had been at Children’s with his daughter many times. At one point, feeling sorry for myself, I said, “I never thought I’d be spending our first weeks here...” Rob replied simply, “No one wants to be here.” All at once, I was humbled.

I did not see Rob again after Jasper was discharged. I friended him on facebook and we occasionally said a virtual Hi. Last Tuesday, Jasper and I left our friend’s hospital room at Children’s and walked down the hall to leave. Jasper was laughing especially loud - he has the best laugh, I never hear other kids his age laugh like that - as I pushed his stroller down the hallway. A man was walking toward us and I could see he was smiling at Jasper’s laugh. As soon as we passed, I knew, and turned and said, “Rob??” We both smiled and laughed at meeting each other again so spontaneously. Rob asked about Jasper and that was when it hit me. At first, a lump in my throat that I immediately knew I couldn’t control. “He’s fine...” I said, shaking my head, my throat closing. A few embarrassing tears, attempts to wipe them away. And then overwhelming emotion - sobbing, body shaking. Rob hugged me while I cried. It all came back. My only association with Rob was Jasper’s traumatic beginning. I thought I had healed. Or mostly healed. Seeing Rob again made me realize it is still there. I am still healing.

"Ok"

Caring friends who know Jasper’s history sometimes ask, So, Jasper's Ok now? Usually these are friends who have grown used to seeing photos on facebook of a happy, laughing, smiling Jasper, beautiful boy. Their query is difficult to answer. When a child has issues - in Jasper’s case, brain damage from infant stroke - there is no magic recovery date. Or if there is one, it is unknown. Kids with issues have different milestones, and make their own schedules, which they keep to themselves. Will Jasper draw pictures for his mommy, will Jasper be able to run without falling, will Jasper ride a bike... I want to respond, Yes.

So, Jasper is Ok now... Except that we won’t know the impact of stroke on his vision for years to come. Meanwhile I guess at what he can see. When your child is delayed, you no longer casually observe his behavior. How does he hold toys? Does he rotate the toy in his hands? Can he use both hands? Does he have color preferences or difficulties? Will he respond to objects to his left?  I don’t even know when casual observation ended, or if it ever existed. I watch Jasper play with toys, reach for them, push ‘em around, stack them. His crawl is efficacious - he speeds toward his toys and avoids ramming into walls, doors, cabinets etc. I give him visual tests (and try to understand when he does not “pass.” Instead I mark him, “needs improvement”). Sitting in his rear facing car seat, can he see me when I open the back of the station wagon? Or when I silently, carefully make funny faces at him? Or can I simply get him to look me in the eye for any length of time?

Jasper is delayed. Officially, he is “significantly” delayed in his cognitive and motor skills. He needs to be more focused. He doesn’t always play with toys “functionally,” preferring to make up his own games. He is active and mobile but prefers crawling, standing up, cruising along anything he can, and exploring, to sitting and playing with toys for long periods of time. He crawls, but when standing, he is often tippy toed. Jasper is not walking yet (at a recent 15 month check up, his pediatrician gently informed me this is still ok). These are the things that concern his therapists. My fear is that the behaviors I find most precious, endearing, sweet will be labelled “concerning”.

Jasper began working with his first therapist, a vision educator, at three months old. At a recent therapy session, she reminded me, “You still don’t know what you’re dealing with,” when I made reference to Jasper’s development a year ago. It was this kind of blunt honesty that I appreciated most about her and will miss. As Jasper lags behind his typically developing peers, we move on to something new - new therapists, new structure, re-newed hope.

Jasper will be Ok.

Typical father

Last week, I took Jasper to the zoo. It was a fairly nice day - sunny, if a little chilly for my comfort. Lately our zoo trips conclude with a stop at the playground, and the swings. We finished our swinging ritual and I sat Jasper down in the grass, before putting him back in his stroller. A little girl walked over to Jasper and checked him out, standing behind him. I said Hi to her. Her dad was nearby and said Hello. He asked how old Jasper was. Jasper remained seated in the grass, pulling at it but not eating it. Fifteen months, I replied. To reciprocate, I asked how old his daughter was. Thirteen months. Almost. Started walking when she was eight months old, his tone giving the impression that he was her primary care giver. The proud father. And by the look of him, an avid sports fan. Fan. Not participant. Although I hadn’t asked, he proceeded to tell me how he’d made his infant daughter “exercise” prior to walking. Of course, he couldn’t have known that he was boasting about his precocious daughter to a mom whose son had a stroke and is delayed. He couldn’t have known how I am holding my breath, waiting for Jasper to walk. And not on tippy toes. In my mind is the number eighteen, as in walking by eighteen months, I hope. But really I would love him to walk right now. Or by summer, so that I can hold Jasper’s hand and walk along the beach with him.

The dad did not get to finish telling me about his young daughter’s exercise routine. She interrupted him when she saw a bird flying overhead, pointed at it, and said, “buuurd??” Without saying a word, I put Jasper back in his stroller and we went home.

Jasper

Two weeks old

I regret it’s taken over a year to get around to this. When Jasper was in the Children’s NICU as a newborn, I remember telling a friend, “I’m going to start a blog...” A stupid thing to say, when Jasper was but a week old and his neurologists were trying to find the formula that would stop his seizures, and I was trying to absorb all that had happened in the short time since his birth. I stayed at the hospital right there with him, mostly by myself, keeping vigil at his bedside, praying for someone to please heal him, please heal my baby’s brain. When I would’ve had the time to begin a blog then, or since, I do not know.

Two days old

Jasper was born February 13, 2011. Jasper experienced an infant stroke at birth. The stroke primarily affected the occipital lobe - or vision center - of his brain. At nine days old, he was diagnosed with acute cortical blindness. In addition, “flashes” of stroke had affected other areas of his brain. The attending physician told me it was unknown how this might play out in Jasper’s development. He gave an analogy. The stroke was like dark clouds lurking on the horizon. Those clouds could either develop into a vicious storm, or they could pass by, leaving instead a beautiful sunny day. He asked me what I do when told there’s a 50-50 chance of rain. I responded, I don’t take those percentages seriously until they’re well over 50.

I brought Jasper home when he was just shy of two weeks old. Prior to Jasper, I had about 5 minutes’ worth of experience with babies in the course of my lifetime. I was already nervous at the thought of bringing home my newborn, let alone one who’d had a stroke and was having seizures (these details were not part of my birth plan). In addition to the usual newborn duties of a rigorous feeding schedule, diaper changes, baths, I was busy administering three different anti-seizure meds in the morning and evening (a task that brought tears to my eyes in those early weeks), learning to use the nasogastric tube feeder, and still processing the phrase, infant stroke. 

It wasn’t until a few weeks after Jasper and I were home that the words of my prenatal yoga instructor came back to me. I had done a lot of yoga during pregnancy - the only time in my life I’d been able to stay off my bike long enough to commit to it. I loved how yoga underscored the connection, intimacy, and sense of oneness of my pregnancy. And at the end of every class, our instructor would say, “...You are the exact right parent for this child.” 

It took a while to figure it out, but in time I realized, she was right.