This week I have started writing at least half a dozen posts and none of them were right. I haven’t been quite in the zone for going into the details of the NICU. Then, this weekend, I had the opportunity to spend a lot of time with just Miles, and I realized that HE is what I want to write about. I want you to know Miles, who he is now, not just the sum of his history and what we as parents have gone through. So here we go: all that I can think of to tell you about this wonderful, sweet, amazing little guy. I will include some of the medical stuff, but will avoid going deep into it because although it’s all a part of his life, it is not all of who he is.
Miles is funny. Laughter is all it takes to get him to laugh. He wants to be in on the joke. The laughter you prompt him with might be fake, aimed at the singular goal of getting him going, but once he starts going you will find yourself in the most fantastic feedback loop. He responds amazingly well to his bedtime ticklefest and sometimes will laugh when we have no idea why. He particularly enjoys spotting Elmo and Cookie Monster in unexpected places and delights in the picture of Louis Armstrong at Uncle Bill’s house.
Miles is sweet. Apropos of nothing he will climb up on me, stick his thumb in his mouth, and snuggle up. He will find something the dog likes to chew on (whether an approved chew toy or not) and follow the dog (“Sprocket”), arm outstretched, trying to give the object to him. Sprocket is quite patient with him, sometimes taking it and chewing, sometimes taking it and putting it down, and sometimes just turning his head and walking away. Miles, determined to share, will follow Sprocket to his next destination and keep trying. He has also taken to feeding me his snacks, which is just delightful. He gets a look of concentration on his face, aims for the mouth (my mouth) and goes for it.
Miles is determined. Whether he’s trying to feed the dog or reach an object, he will find a way. We often say he has Go-Go-Gadget Arms. For example, at the dinner table, we may wonder where our forks have disappeared to. Miles will be sitting there grinning, trying to use all the forks his little hand can hold to pick up his food. He has discovered a way to move his high chair so he can get to whatever he is lacking.
Miles is able. He may not use words to communicate, but he can tell you with clarity what he wants, whether he likes something or not, and where he wants to go. If it is too far to walk on foot, he will use his knees to walk or if he’s in his wheelchair, will propel his wheels by himself. When I take him out of the bathtub, he reeeeeeeaches his leg back, trying to hook the side of the tub with his foot. When we went to a birthday party at a play gym, he made it absolutely clear that under no circumstances was he to play anywhere but the ball pit.
Miles is curious. He will take the thing. He will lift it, turn it, mouth it, try to open it, bang it on the other thing, pull it out, push it in, or stack it on top. He loves connecting duplos and figuring out how the train tracks go together. He enjoys the sounds that dumping out the bin makes and may even put some of the things back in, until something else piques his interest. Much to Duncan’s chagrin, he wants to see exactly what is going on with whatever Duncan is doing. This often results in a crash of some sort, and two incredibly different sets of emotions.
Miles is happy. He will hum as he plays. Even when he has an atonic (“drop”) seizure he will go right back to playing and vocalizing as soon as he recovers, which is usually rather quick. Sometimes it seems he gets more upset when we comfort him after a particularly nasty bonk because he wants to get back to playing.
Miles is amicable. He will go on several errands, in and out of the car, his wheelchair, a cart, whatever, and – as long as he’s well-fed – be happy just being. In the car, he doesn’t complain when I want to listen to NPR and he likes all the same music as I do. He loves music. In his rare times of distress, a little bouncing and singing goes an awful long way.
Miles EATS. His celiac disease may restrict him to a gluten-free diet, but otherwise, this kid will basically eat anything.
Miles is ambitious. He will crawl up the IKEA shelves if they don’t have toys on top. (Frankly, he may try even if they do…) We had to get a special safety bed because he climbs on everything without fear. One night, fearing he would fall out of his crib, we tried a toddler bed. We watched on the monitor as he climbed out, got up on Duncan’s bed, and climbed across Duncan’s head in an effort to get to the curtains so he could play with them.
Miles is a miracle. Three separate times in my life – while pregnant, when he was a neonate, and when he was 1 year old, I thought I would lose him. Right before he turned two we got a diagnosis that made us believe that his time with us would be short. He keeps defying odds and expectations. As his epileptologist put it “Miles didn’t read the book. He doesn’t follow the rules.” As my sister-in-law Carin put it “Miles doesn’t know what his diagnosis is or what it’s supposed to mean. He’s just being Miles and doing Miles things.”
Miles is a life saver. I mean this in the most literal way it is possible to mean anything. Because of Miles’ major status seizure when he was one, he acquired many of the specialists he has now. One of them was a geneticist. Because of Dr. Zhang I learned that he has a rare genetic mutation in the BRCA1 gene, which increases the chance of developing breast and ovarian cancer in women. I was able to take steps via preventative surgeries to reduce those risks so they are now practically non-existent. Additionally, this past summer in a search to find out why he wasn’t gaining weight or height, and prompted by Auntie Llama’s vigilant suggestions, Miles was tested for and diagnosed with Celiac Disease, which is, it turns out, also genetic. A few months later I brought it up with my doctor and found out I was also afflicted. Duncan and Verity also have been tested and carry the genetic marker, but are not diagnosed. They may never develop it, but now we know to watch for both that and its best pal, Type 1 diabetes.
Miles is a natural educator. He has taught me so much about what it is to be a mother, a person, a patient. Like many young people, I put far too much stock in what other people thought of me. This past year I was surprised to learn that I just didn’t care any more. I am doing everything I can and yes, sometimes I may fall short, but I have learned much of what is truly important, what just looks important, and what I can control.
Finally, Miles is challenging. He has had four surgeries and is scheduled for one more. He has epilepsy that we can’t seem to get completely under control. (To be fair though, he went from having hundreds each day to just a few dozen or so…) Though he’s getting physically stronger, he doesn’t generally walk more than 50 steps at a time. (Although 50 steps at a time is amazing!) He needs a wheelchair when we go out. He has a dozen medical specialists, and that’s not hyperbole. He needs weekly PT, OT, and speech therapy. He generally does not respond to his name and he does not say any real words. He doesn’t seem to understand safety concerns or changes in tone of voice when we try to alert him to danger. When Duncan gets frustrated that Miles will probably knock down his tower/building/whatnot, he’s probably right, and when he gets upset about it, Miles thinks it’s a hoot and laughs. It’s hard to explain to Duncan why that’s okay. And it’s currently impossible to explain to Miles why it’s not okay.
His challenges add to our life-as-a-family-challenges. We need room in the van for his wheelchair at all times. When we go to his appointments there is rarely enough handicap parking to maneuver his wheelchair so I have to park like a jerk in the compact-car sized parking spots in the rest of the lot. I have never been good at asking for things but I have learned and continue to learn to be an advocate. It’s a work in progress. We have all had to learn to balance and prioritize—sacrificing some things that meant so much before, but that now seem trivial.
Despite the challenges inherent in being Miles’ mother, I find that being Miles’ mother is the easiest part of the job. He fills me with so much joy, and each gain feels like we’ve conquered a new mountain. He has long since decided that he wasn’t going to follow anyone else’s instruction manual, but instead that he’s writing his own story. I am so blessed to be able to read along.