In fact, I am told that a lotNow I know all the wrong turnsThe stumbles and falls brought me here
And where was I before the dayThat I first saw your lovely face?Now I see it everydayAnd I know that I amI am, I am the luckiest
What if I'd been born fifty years before youIn a house on the street where you live?Maybe I'd be outside as you passed on your bikeWould I know?
And in a wide sea of eyesI see one pair that I recognizeAnd I know that I amI am, I am the luckiest
I love you more than I haveEver found a way to say to you
Next door, there's an old man who lived to his 90'sAnd one day, passed away in his sleepAnd his wife, she stayed for a couple of daysAnd passed away
I'm sorry, I know that's a strange wayTo tell you that I know we belongThat I know that I amI am, I am the luckiest (Ben Folds)
Yes, I truly am the luckiest. As luck would have it, a little boy came in to my life, by phone actually, about 20 years ago. A local agency, whose main function is to direct people to resources, phoned me and asked if I might consider taking a little boy with special needs in to my home daycare. They had a mother in there asking about daycare and didn’t want her to have to traipse through numerous places explaining her son’s needs to find a good place. Of course I said yes and eagerly awaited their arrival. In walked a confident, pretty woman in her mid twenties with the most beautiful little boy I had ever seen. She pushed him in a blue netting stroller that had a bright red insert (called a feeder seat) nestled in to it. His little legs barely cleared the edges of the stroller, and his tiny white running shoes had Velcro strips on the bottom of them! His eyes were wide and curious. He wasn’t sure that this new noisy and strange environment was his first choice. Thus started the most epic journey of my life, and ‘lucky’, ‘blessed’, ‘amazed’, don’t begin to encapsulate it.
I settled on a title including the word “Time” because that’s what we had. And that’s what is now gone since Malcolm flew away from this earthly existence in the early dark hours of Valentine’s Day. Of course, the irony is that too much time is now what I have. In abundance. Time to remember. Time to grieve. Time to speculate how much time is going to tick by before I hope to hold him in my arms again. However, (blow my nose, wipe my eyes and try to refocus) the time we had was so full and rich and shared by so many that I am determined to set some of it down.
When Malcolm was twelve he had a cluster of seizures that wouldn’t stop even with anti convulsant meds, so our local hospital air-lifted him to Seattle Children’s. I frantically drove the hour and a half route from Bellingham to Seattle wondering if I would see him again. When I arrived I dashed in to the ER and they directed me to his partitioned area. No one was around. I could tell he was still having small seizures. I dimmed the lights and drew the sliding door shut to muffle the noise and Malcolm slept. About 45 minutes later I had my first information about how he was doing. A neurologist came in with an intern whose main function was to act as an easel. He held up ‘normal’ CT brain scans in the air like a child presenting a class project while the chief neuro held up Malcolm’s. The astute doctor asked me if I noticed a difference. My reaction? Well, I suppose dumbfounded might be the best description. Normal scan: Brain hemispheres. Malcolm’s scan: absence thereof. But there was nothing new that my untrained eye could spot in the films from previous CT scans we’d had. I was waiting for an explanation of why the sudden change in neurological function manifesting in the long seizure activity, but it didn’t come. He seemed mystified that I was expecting Malcolm to be doing better than he was. He asked for a bit of medical history and I produced the label I’d always given. “Hydrocephalus”. He responded that Malcolm didn’t have enough brain for the term ‘hydrocephaly’. “HyDRANencephaly would be more accurate.” I smiled inside. I knew that word. A long time e-mail friend, Barb, adopted a daughter who had hydranencephaly and I had read her amazing website and Kayda’s story. But I’d never been ‘in the club’ because we didn’t have the label. Who knew? The doctor also asked me if I had known about Malcolm’s limitations when I adopted him and if so why did I choose to keep him. Hmmm. I can’t even remember what answer I stammered out. Malcolm recovered from that episode. It turned out that administering Ativan for a seizure didn’t sit well with his system. He had what’s known as a ‘paradoxical reaction’ to the medicine and it caused his heart to race and body to seize dramatically. He lived and I learned. We got a diagnosis… and more time.
I know everyone thinks their own baby is the most beautiful that ever there was, but in my case it was actually true. I missed out on Malcolm’s first couple years and two surgeries to implant a shunt to drain cerebral spinal fluid from his brain to his abdomen. In most of us that fluid is produced and circulates around our brain and drains naturally down the spine. People who have a blockage need an artificial drain, or tube, slightly under the skin that provides a route for drainage. Nowadays children get programmable shunts that have their benefits but are notorious for malfunctioning. Malcolm had one placed about a week after he was born and had to have it replaced (in a different spot) when he was just shy of one year old. Amazingly it continued to function for at least another 12-14 years and then (apparently) he outgrew the need for it. If fluid continues to build up without being able to drain then the head of the baby will expand and the intracranial pressure causes pain, seizures, lack of brain growth, and eventually death.
When Malcolm came in that wonderful day, a kicking, bright eyed two year old, I started to get to know him, but I was far from a natural or an expert. I learned a lot from his mother about tricks and techniques that ‘worked’ for his fussy periods, or to get him to eat or to sleep. I discovered that he would lie calmly and happily if it was light, but would start to whimper or cry when it was dark, so if I left a light on at night he would be as happy as that proverbial clam. She taught me that tapping his hand over and over would ease his fussiness so I often ran activities in my daycare for 45 minutes at a time while dragging Malcolm with me and patting his hand until his fussy period was over. He would remind me if the patting lagged by scrunching up his face with the ‘I’m going to cry and you’re going to be sorry’ look. Many children with hydranencephaly seem to have fussy early years and grow out of it by the toddler or preschool years. Malcolm definitely grew out of that stage early on. When he was in preschool at Fairhaven College while I was trying to finish up my education degree (still not finished 20 years later) his routine was to lie on the carpet by the teacher’s feet and wiggle around every day at story time after lunch. His classmates sat clustered nearby or lay on the floor resting and listening to the story. One day in the middle of the story Malcolm wiggled so much he bumped his head on the wooden leg of the teacher’s chair and he began to cry. She scooped him up and cuddled him and he soon stopped and was fine, but when she told me about it later she said she was so surprised because she had never heard him cry. He was a very happy and easy going little guy, more wont to burst into giggles at a funny sound than to protest.
Dressing Malcolm has always been one of my favourite pursuits and expenses. One of his special education preschool teachers told me that how a child is dressed is irrelevant, but I always knew that she was wrong. Those who knew Malcolm knew how determined I was that he be dressed as adorably as could be whenever possible. I’m not sure how much I poured in to the coffers of Hanna Andersson and Lands’ End over the years, but it was worth it. I definitely kept them out of the poor house. I had friends who would try to convince me that I should be concerned about dressing Malcolm in age appropriate attire as he got older, but I firmly resisted. I was still buying children’s size 10/12 when Malcolm died at age 22, so there was no reason why I couldn’t indulge in the cutest 100 percent cotton jammies with monsters on them, or bugs and tents, or even flowers. When he passed away I put him in a fresh diaper (habit), cotton jammies, and a 2 piece fleece footed sleeper which was brilliant blue with white jumping deer all over it. He had owned it for several years and worn it on the coldest days, and even for Christmas and to church. He also wore one of his many beautiful warm hats. For Malcolm’s 22nd birthday I bought him a really lovely glass fronted wardrobe and now, 5 ½ months after he left, it still has all his clothes neatly folded inside and his stuffed animals and strings of lights from his funeral on top. It is probably the only neat and organized place in my entire house. Dressing Malcolm was more than just picking out a cute outfit to satisfy my maternal urge. It was contact. Terror at not being able to remember that crops up now from time to time, as it did when I knew he was going to leave me and every touch of his smooth face or soft feet might be my last ever. Dressing Malcolm was second nature and honestly, dressing my less than compliant, able bodied five year old is a whole lot harder. I learned early on to ‘centre’ the peeing device or face a certain complete outfit change shortly thereafter. Then time for pants and warm socks after a foot massage. Malcolm’s skin was so fragile in places that he wasn’t able to wear shoes in the later years so one of my quests was for warm (and cute) slippers which didn’t rub his skin. Putting on ‘top half clothing’ was the biggest challenge and Malcolm would get that, “I’m tolerating this but can it please end?” look when I pulled a shirt over his head. Slipping my hand down the sleeve and grasping his little fisted hand I would then draw the sleeve of the shirt down his arm instead of the arm going up the sleeve. Left arm first. Then right. No ‘formula’. Just what worked best for Malcolm. His back was very rounded (I love love loved to rub his back) so leaning him forward and adjusting the shirt downward, giving a tug around the shoulders of the shirt or sweater to adjust its placement worked best. My longsuffering kiddo certainly put up with a lot for the sake of fashion! Oh, and not being naked! Not many people are privileged to have the hands on soul to soul relationship with someone that is your gift (you might not even know that’s what it is until its gone) when your lives are connected by physical care. Yes, my entire being aches to pick out his clothes, chatter away in his ear while he endures my ministrations, and feel the textures of his skin and his hair, but I’m so thankful for every time I got to experience it.
Those preschool years have some wonderful memories for me. I was young, Malcolm was young enough that he fit easily in to the world of his peers. No one had told me that he wasn’t supposed to have lived beyond about the age of two, so the notion that his existence was precarious wasn’t hanging over my head every day. Everything I did and the decisions I made were based loosely on the question of whether Malcolm would enjoy it. After I closed my daycare to go back to school we became a foster family. Other foster children came and went. Malcolm’s forever best friend and little brother, Dana, arrived one Thanksgiving. Health problems were thankfully limited. The biggest struggle Malcolm had was with his digestive system. Most days he was pretty comfortable and happy, but sometimes the upset tummy and the reflux would leave him exhausted and sore. If I had known then what I know now about treatment and diet changes for him…… Well, I didn’t, so no point going there. In living our life I was on a quest to find out what made Malcolm’s life the happiest and the richest. My friends know from my rants that I am not a big fan of segregating children (or adults) in to groups based on their level of function. Therefore, Malcolm’s activities were rarely based on what our community offered for people with disabilities. He went to a segregated class the year that should have been his kindergarten year and was there for one month until I opted to keep him home instead of having him bussed across town. Honestly, what were the similarities between Malcolm and a class of small children who also happened to have an array of disabling conditions compared to the similarities between him and ‘able bodied’ children? They were all as different from one another as could be, so why opt for the adult heavy, interaction limited choice 1 when the alternative was being immersed in an environment with children who chattered and learned and created? The list of things Malcolm could not do was MUCH MUCH longer than the list of his accomplishments or skills. He was fairly unique in that he was just so easy going. He loved to be held, to be played with, to be talked to, or even talked ABOUT (he loved hearing his name and would perk up at familiar words), but he rarely demanded any of those things. He just waited expectantly for something good to happen. Wow. What an honour to live life with someone as unique as Malcolm. God put him with me, someone who naturally is discontent, impatient, insecure, and prone to feeling hurt or left out. What an opportunity for me to grow and learn to be more like Malcolm! You know when you go for a walk with a toddler and you suddenly see the world through her eyes? You see bugs and blades of grass and piles of bird poop you wouldn’t even have noticed if you weren’t in her company? It was kind of like that for me. I got to see that it is possible to choose to be contented, to truly appreciate the ways others go out of their way to do something nice for me, and to expect the best out of everyone I meet. During Malcolm’s time here on earth he met a lot of people. He drew so many different sorts of people to him. Some of those people, quite frankly, I was less than thrilled about, but sometimes Malcolm would attend to their voice and get excited hearing them talk. It conflicted with my notion that a person had to demonstrate her kindness to you (i.e. benefit to you) in order to be a friend.
Time with Malcolm was time well spent. With each adventure, Malcolm made special connections with people which had nothing to do with me.
“Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...”Isak Dinesen