Dad

It is his identity as a marine officer that he seems to most want the people around him to know, to remember about him. I think this is because he feels those qualities that made him such an excellent soldier are seeping out of him like blood. The strength, leadership, independence and competence he brought to everything he ever did is trapped inside of a body that is diminishing in front of us every week.

After his heart attack last May, he made a very slow recovery. He was moving more slowly. A natural and comfortable public speaker, his talks in church became more halting, embarrassing to him. He seemed to say less to us, too. Even though I live less than a mile from my parents, I kept up my old long-distance habit of talking to my dad every day on the phone as I drove. The last conversation was in August. I didn't know it then, of course, and I am glad of that. It was marked by many long pauses, which I attributed to thoughtfulness or hesitancy to give a quick answer. He told us at the beach in August that he was feeling tongue-tied. We began to suspect the medication he was taking was having side effects.

He continued to decline. His speech became slurred, stroke-like, but stroke victims' speech impairments plateau, even possibly improve, while his steadily grew worse. There was no stroke. Still, life kept happening. Will and I were at Hopkins every day for 8 weeks, we went on a trip to Las Vegas, there was Thanksgiving to plan, then Christmas. It was right after Christmas that he got the diagnosis: PSP. Progressive Supranuclear Palsy, a degenerative brain disease that robs people of speech and mobility. Most sufferers die from choking, pneumonia or the trauma of a fall. It is extremely rare and not much is known, aside from that there is currently no treatment and no cure. When he and my little sister who had accompanied him to his neurological appointment came by my house that night to gather for a dinner out and told us the news, none of us knew how to react. I didn't really understand what PSP meant. My dad, in his typical organized fashion had printed out copies of a description of the disease off a medical website to distribute to each of us. I read it, but the words somehow did not register through my disbelief that anything truly horribly could happen to us.

Up to that point, I had seen my dad cry possibly 5 times, which meant that I had seen him become teary. That night he sobbed. I can barely stand to remember. We all froze, paralyzed by some perverse combination of not wanting to acknowledge his sobbing so as not to embarrass him, not wanting to accept the diagnosis, and old fashioned lack of practice. My sweet boys, however, did not hesitate. They each ran to him, even Porter, and threw their arms around him and stayed there. "I'm never going to get better," was all he said. I wish writing this down could take it out of my brain.

He can no longer speak at all. He swallows with great difficulty, too, and has lost significant weight. He communicates with a thumbs up or down, and uses a writing pad, but this last form of communication is not easy. His thoughts are in his mind, but it is like he has to translate them to a foreign language to get them out. I miss his smile the most.

His service as a marine was probably the most defining experience of his life. He often thought about it--or, more accurately, re-hashed every detail of his experience, on a regular basis. Maybe 5 or ten years ago he felt he hit upon an answer to a question he had wondered about since 1966: What was it that the Corps had been looking for in a man? Why had the training been so brutal? For decades he had thought that the insults they had hurled had been sincere, that some of the hopeless training assignments mysterious.

"I think I know now," he said. "They were not looking for the smartest man or the strongest or even the bravest. They just wanted men who wouldn't give up. They gave us tasks that were simply not possible to complete, and it was to see if we would continue to try despite its incontrovertible impossibility."

My dad is someone who does not give up. I do not mean by this that he thinks he can fight PSP and win. He is unflinchingly realistic about everything in life. He thinks he is a pessimist because he does not Pollyanize anything. But he is possibly the most optimistic person I know, because he accepts reality and forges ahead with a careful, thoughtful plan to achieve the best possible outcome, even when the best possible is awful. People who mistake romanticizing and pretending for optimism don't know what it is. And while he accepted before any of us did that he had a terrible and irreversible condition, he has done all he can to hold on to himself. Despite his extreme limitation and sufferings, he still does everything he can to be a part of life. He does not miss our boys' sporting events. He sits through every cartoon movie night with the kids. He even gets out on the trampoline to play. He cannot jump, but he pretends to be that same water buffalo that wore out the knees of the green cords I picked out for his father's day gift when I was three.

One of the most remarkable aspects of human nature is our ability to adapt to new situations. Often I am able to go into auto pilot mode about this. My dad is sick. He can't talk or easily control his facial muscles. He is feeble. He is living his absolute worst nightmare. It will only get worse. Okay. But sometimes I let myself think of him as he was just months ago. Could it really be? Just months. And I am floored.

I am trying to find anything positive I can out of this horribleness. I am blessed to have had such a wonderful father, and to have had him for as long as I have. Most people with PSP are hit at 60; my dad got an extra ten years. He got to meet and develop the most wonderful relationship with my children. And lastly, while it is an awful way to be reminded, it is essential to remember that life is short and in the end, there is only love.

they will see us waving from such great heights

"Come down now," they'll say
But everything looks perfect from far away
"Come down now," but we'll stay.

I am often overwhelmed by the significance of pretty mundane and obvious thoughts. My most recent one is this: my children are separate people from me. They have their own lives, marked by private thoughts and feelings and relationships that are real and not fully accessible to me. My first drift of this was when Andrew was 3 and returned home from a playdate, unwilling to divulge what he and his friend had done because it was "a secret." "A secret because he told you it had to be, or because you just want it to be?" "I just want it to be." And a little smile.

I am feeling it again now in similar, otherwise banal moments, like when I drop Porter off at his little preschool and watch him walk hand in hand with a teacher who knows him and loves him, away from me to a separate activity I won't totally know about with people who know him on his own terms and not through me. He talks about Miss Jess and Miss Willa and Misbah in a casual way that underscores that these people populate his life in a way they do not mine.

Maybe these obvious reflections are meaningful to me especially now as I take care of a new baby, whose every moment is totally known to me, who has no life or identity that I am not part of or do not witness. It won't be long before this is no longer true.

I have been thinking about my kids' relationships with each other, and how those are at least as important right now as is theirs with me, and how over time those ties will become more important. That one day they will only have each other. As strange and sad as it is to watch the natural and appropriate development of separateness slowly progress, I do love the idea of the boys doing it together. When I was looking at these photos of them climbing trees, the lyrics to the song above came to mind and I liked the idea of them up there together, without me. Even if I am on the outside, part of the "they" urging them to come down now, I am gratified that they are resisting me, experiencing a minor adventurous rebellion, together.

I have my daughter

If I am not blessed to have another baby, I think I will have to take up some extreme sport to substitute for the adrenaline rush of giving birth. Not that I think giving birth is fun, exactly, and I have been accused of forgoing the birth experience altogether by getting an epidural (as if that were tantamount to being unconscious), but of all the life experiences I anticipated would be surreal, giving birth is the only one that really was. And it was surreal all four times.



Claire was a later arriver (over a week overdue) than Porter and Will, but she maintained the tradition of coming the day before a scheduled induction. As much as I had tried to be photo ready at any moment to head off to the hospital, I managed to go into labor on my day 2 of unwashed hair at 2 in the morning. I had been having contractions all evening, but that was par for the last several days. Still, the contractions combined with my television addiction to prevent me from going to sleep that evening, opting instead to finish out the final season of Justified. Lying in bed watching tv on my laptop, I felt a sudden sharp snap that actually worried me--it was so hard that I thought the baby could have hurt herself in there. Then I felt another one, harder, and suddenly I was gushing water. When my water broke with Porter, it was like a little pinprick to a water balloon. Enough to wake me up (at 6 or 7 am), enough to substantiate with certainty that I was in labor, but nothing drastic or alarming. This time, however, our bedroom looked like a crime scene. I had to bind myself with towels, and even that couldn't do much. I was nervous that my labor would go super fast with this kind of gush and on baby #4, so it seemed like it took my poor mom forever to come to the house (it was probably 10 minutes).



Brigham predicted that Claire would be born at around 6 that morning, an hour before my dr went off-duty and a male dr would take over. He was correct--she was born at about 6:15. I was completely unable to sleep after arriving at the hospital. I was excited and the epidural was not very potent, so sleep was not possible.



When they weighed her and announced that she was 8 pounds, 2 ounces, I didn't believe it for a second. Brigham and I both laughed and denied it could be true. The nurse agreed that there must be a mistake and weighed her again. Nope, this baby girl was a full pound heavier than her next biggest brother. She had lots of dark hair, long fingers and toes, tan skin (I wondered if she could be jaundiced she was so brown) and dark blue eyes. Her face looked like Porter, and later I felt she resembled Will, too.

Of course, after she was born I could not sleep for all the excitement of meeting my baby. I basically couldn't calm down enough to sleep for two days. I still have trouble sleeping at night because I love looking at her and also because I nap during the day and it throws my insomniac-prone sleep schedule off.

Brigham has stayed home these last two weeks, a luxury I had never before experienced. It has been wonderful. Claire has been my easiest baby so far. I know a lot of that is just that I am more experienced plus my husband is around to help with the other kids, but part of it also is Claire's temperment and fatness. She nurses well and is growing beautifully--she exceeded her birth weight within 4 days of her birth. She is so round and chunky, and I haven't driven myself frantic with weighing her before and after each nursing session, as I did with Porter. I feel like a regular mom whose baby magically just grows and sleeps.



My whole life I was sure I would have daughters. I chose Claire's name before I had even met Brigham. I don't even have a runner up name to consider. I tried to add some flair by giving her two middle names: Claire Elizabeth Grace Cannon, but Brigham nixed that. Two middle names is apparently "weird," and if people give me support on doing it, they are only being polite. I love the religious concept of grace, and I wanted to provide a reminder to her to strive to recognize and exemplify His grace. But I guess I will have to go to more effort than just sticking it in her name.



I sit in bed with her lying next to me and gaze at her and wonder what she will be like. It has been different than with the boys. I was fully in love with each one of them, too, of course, but I don't think I looked at them and wondered what kind of men and fathers they would be. I look at Claire and feel this huge sense of responsibility: I am raising somebody's mom. What a blessing.

the little things

I have been meaning to write about Porter since he turned two, almost exactly a year ago. Then I was going to do it at 2 1/2, because I wasn't going to let perfect be the enemy of good enough. Now he is almost three and I have so much to say about him, but I just wanted to record one little thing that sums up so much of his little self.

Porter has been attending a tiny preschool class at a local public elementary school. He was invited to participate as a "peer model" in a class designed for children with various special needs. Porter loves it and has gotten so much out of it. He talks about his classmates as his best friends. He loves and is very loyal to his teachers, too. When Will remarked that Miss Misbah had a funny name, Porter didn't miss a beat to defend mildly: "No, Misbah a nice name." One of the children is in a wheelchair and is nonverbal, and Porter loves her and talks about her all the time. When I was dropping him off last week I watched him suddenly jump of from the activity table, run and grab a napkin and then gently dab up some drool on his little friend's face. It might have been the sweetest thing I have ever seen.

Porter is wild and happy and you can't take your eyes off him for a minute because he will run away. He chatters constantly and sings little songs and can operate an iphone with adult ease and basically never feels pain somehow and does not tolerate being called little or a baby, even when you mean it in an affectionate way. In many ways living with him is like living with a chimpanzee, right down to the poop flinging (if I had written when he turned 2 I would have bragged about how he had already potty trained himself, but now I have to admit that we have gone backwards recently). When he does something wrong he tries to weasel out of trouble by claiming his action was "an accident!" He loves Greek yogurt with honey and almonds and blueberries. He can make his own sandwiches, ride a scooter with terrifying confidence and speed, has ruined many of my clothes giving me kisses on my belly with a nutella-ed mouth. He has taken offense to sleeping in a crib and has been awakening in the night to disturb our sleep and make demands, but mostly to cuddle. He loves to give fives to everyone, and is saddened when complete strangers fail to reciprocate his high five advances or notice his waves. If he hears a story of misfortune, he is always ready with commentary on what he would do in that situation, and it invariably involves preparing himself with a helmet, shield, parachute and some sort of weapon. He is affectionate and joyful and just a bright shiny light in our home. And most of all, he loves everyone.

I know he will move on from many of these little quirks and traits, which is why I record them so he can always know and I can always remember. But I hope, and I sense, that the story of his love for his little classmate will always sound just like him.

Snowy days

Today Porter and Will's preschools were closed for the second day. Andrew was grumpy about being the only one with a full day ahead. We had a nice time taking advantage of the last bits of snow in the yard by sledding in the sunshine after dropping Andrew. Now the boys are doing dishes.




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2013 is going to be our best year yet

I am terrible about organizing our photos. I take many shots and videos, but I am bad about uploading them to our costco website and even worse about printing and storing them. I think I have 3 photos of Will printed. None of Porter. I was inspired by this presentation at TED and have been taking daily video footage of the kids, just for a minute or so or less. You would be surprised at how rich and informative a second a day of video for a year is. I feel like 2012 was the best year yet, and 2013 will only be better. It will be awesome to have the year encapsulated into a few minutes of footage. Also it will be proof to the kids later that we really do fun stuff all the time, though I fully intend to include footage of them just walking down the hall into their classrooms or watching our movie per our Friday Night Movie Night tradition, or people throwing tantrums, because that is all our life and I want to remember every bit.

Today and tomorrow Andrew is the only kid not to have school. We spent our alone time together mostly at Porter's school this morning, but tomorrow I want to do something more special just for Andrew. These two mornings are the only days alone we have had since Will was born, really, unless you count when Will napped, which would make it 3 years ago. Andrew has had a tough couple of months--the feeding program routine was hardest on him, surprisingly, but it has been amazing and wonderful to watch him bloom back into his happy, agreeable, hilarious little self under the steady glow of lots of positive attention and praise (thank you, applied behavioral analysis theory). I know I don't know zillions of 7 year old boys, but I think Andrew has an unusually hilarious and sophisticated sense of humor and that it is going to be a lot of fun living with him as he grows up.

Porter, at school today, loaded up his baby doll into the baby seat of the grocery cart, donned his safety goggles, and set about shopping in his classroom. He would periodically pick up his doll to kiss her or pat her back. He told us her name was Claire. I allowed myself some moments of pride that Porter was demonstrating a sweetness and affection he learned from me, from how I treat him. At a later point that day he also smeared bubble potion on his face, informed me that he was putting on makeup, and asked me whether he looked pretty. So I model that, too. It has only been a few weeks of Brigham spending more time at home, but perhaps later his influence will be observable soon, too.

I feel like I have approached each new year the last few years with a sense of sadness that the year closing had been difficult and stressful, and that I wished (not hoped) the year to come would bring improvement. This year is so different. Will is still not easy to feed, but he is feed-able. Andrew's difficult behaviors have disappeared, and when things flare up in any of the kids I feel confident that it perfectly handleable, not some dire red flag. Brigham has done as well professionally as he possibly could, and he has now kept his commitment to be home by 7pm most nights (see also Andrew's improved behavior). I have some personal and family goals that I am excited about, and which we are taking a day at a time to slowly check off the to-do list. I finally feel like I am turning into the mom and person I want to be. (Sorry older kids!)

healthy eating 2013

Our time at Kennedy Kreiger did a lot for us aside from getting Will on track for tube weaning. One of those things was to change the way I think about food from primarily thinking about it as a way to get full and feel satisfied to the way most people probably think about it: fueling our bodies to function best. My new mindset makes it easier to eat better, since I now believe that the food we eat affects our health (aside from weight issues).

Here is one recipe for Salmon Fajitas that I loved that was simple to make and everyone liked. I just buy salmon and chicken frozen in bulk from Costco and defrost piece by piece in water when I want to use them. I used to not buy much fresh fruit since it often went bad before anyone ate it, but now that I am including fruit at every meal, after explaining why it is important and that everyone must try one bite of everything on their plates, it is getting eaten. I used plain greek yogurt instead of sour cream as a topper and it was so so delicious. I actually preferred the taste; I would choose it over sour cream even if it were not way more nutritious.

We have also been eating orange pancakes, which I make with white whole wheat flour and plain greek yogurt instead of heavy cream. I experimented with making orange syrup instead of using maple and I liked that, too (just reduce orange juice with sugar in a pot until it turns to syrup).

I started making chicken quesadillas by sauteing costco mickey mouse nuggets, slicing them and stuffing them in the tortilla with the melted cheese and sprinkling in some taco seasoning. Not brain surgery, but I had always contemplated much more complicated recipes and was happy to see that the kids loved it.

I have been trying to find easy, simple, nutritious recipes that are kid-friendly through internet searches but I would love to hear some tried and true.

Boxing day

Wherein no boxing or cleaning took place at all. We spent the day sledding on slush, playing with new toys / games and generally enjoying be together with no place to have to go. We went to bull run to see the light show and hit the cracker barrel on the way home. There was something there for each of the boys to enjoy as we waited for our food.


Porter




Will



And Andrew.

Sometimes I am struck with alarm at hold old Andrew seems to be and how quickly he has moved on from being a very little boy, but tonight as he exclaimed over the lights display and played with toys in the general store and listened intently to The Secret Garden recording that he really is quite young and sweet and innocent. Will just impresses me with his recall of the lyrics to any Christmas song (he knew the 12 Days of Christmas for goodness sakes), and Porter with how affectionate and loving he is, and the degree to which he still insists on being naked at home.

It was a late night tonight but we loved it.


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