Just living

Hello from the home of a no-drama mama. It feels too quiet. It's a good thing the littlest child has taken to screaming blood curdling screams over things like running low on food in his high chair tray and the fact that sometimes he has to be placed on the floor and not held. Without such constant, nerve shattering, ear splitting shrieking, our lives might be completely calm and under control. The horror. 

It feels weird, the lack of appointments and drama. The oral chemo thing is slowly becoming routine. I wait until Daniel has nursed just enough to get drowsy, leave him to practice going to sleep by himself with the promise that I will return to check on him, then set my alarm for two hours. Sometimes I go downstairs, clean the kitchen or fold laundry, sometimes I lie next to him and doze off, my alarm jerking me awake two hours later. I lift his limp, sleeping body onto my lap and coax him awake, asking him with kisses and whispers to please open his mouth and take his medicine, which he generally does without too much fuss, then I tuck him back in, cover his forehead with kisses and tell him how loved he is, to which he agrees with a sleepy "mmmhmmm", and he usually goes back to sleep without too much fuss. If I have managed to get a high protein meal in his tummy just before bed he will sleep most of the night, although if he doesn't, we do still have a meltdown when I tell him the boobs are sleeping and he can have them again when it is day. And thus I have begun to wean him. It sucks as much as I thought. No more rolling over semi-asleep and nursing him back to sleep when he wakes from a bad dream. Now I have to wake up enough to comfort him from both the effects of the dream and the betrayal of refusing to nurse him.

He has had a few episodes of midnight mystery pain, but considering how hard he has been playing some of these days, there probably is no mystery. 

His hair legitimately covers his head. 

When I look at him, I don't see cancer anymore. I just see a little boy. A solemn, thoughtful one who has no idea how loved he is. 

Today, while going through photos, I found this one. Almost everything about it seems symbolic. I probably would not have seen the symbolism in it a few months ago when it was taken. Maybe it is just because it illustrates how I felt so much of the last year. Small, impotent, so close to the sunshine but not in it, my forehead pressed against Happy, willing it to absorb. 

I thought I would be more nostalgic about Daniel's toddlerhood ending and his little-boy-hood beginning, but the truth is, I am absolutely loving it. Every new day sees him emerging more from under the fog of pain and nausea that was the last one-third of his life, and blooming into a real person. He is now stringing together two-word sentences (they should be complete sentences by now if he were up with the "normal" kids his age, but hey. You won't hear me complain. He is taking life at his own pace, and I'm cool with that.) He doesn't miss a lick. He can count to ten, minus seven and eight, and his days are spent classifying, naming, and counting things in his surroundings. He is an absolute sponge for concepts. I don't know how he knows some of the things he knows. He surprises me in a hundred ways a day, from recognizing favorite classical musical scores to knowing the name of every steam engine in Sodor (if this makes no sense to you, you are missing out on the somewhat condescending moral lessons and adventures of Thomas and his Friends, and clearly do not read multiple books about them aloud on a daily basis while holding a little boy who is holding small wooden replicas of them in each hand, because if a book about the unimportant troubles of Very Useful Engines is not read directly to those same engines, did the reading of it ever really happen?)

We have been just...living. I've decided to bring more order into our lives, so now I make the pushed-together beds we all sleep in every morning and keep the house a more manageable level of clean, and am on top of things much more in the homemaking department. All things one can do when one is no longer spending all of one's time putting out fires and driving to Denver.

 I finally decided enough was enough with the not being able to see out of my eyeballs situation (my eyesight changed drastically while pregnant and hasn't gone back yet, making driving problematic), so I used some of the cash given to my parents by some of their village to help us out with whatever needs might arise, and I got myself bespectacled. To my surprise, driving isn't nearly as scary as it was. When you can decipher at a glance what you are looking at in terms of oncoming traffic and traffic signs instead of having to squint at it for several seconds, this leaves time to notice, and therefore not crash into the things you did not have time to notice before. Not running over pedestrians or bicyclists is exactly what our current laid back lifestyle needs, so I am wearing glasses in public for the first time since seventh grade. I'm not hating the fashion statement, either. They hide my emerging crows feet. I feel like my face is starting to embrace honesty as much as my brain is these days. As in, no lying about the fact that I am fast approaching my mid thirties. Stress, dry Colorado air, and lots of mountain bike sunburns, squinting in the wind and harsh rays in simpler times has me feeling like I'm turning leathery. None of that rangy Colorado sinew, though. My skin is starting to suggest I've turned native over the course of the last ten years. But almost eleven months after having hauled an extra fifty pounds into the hospital to give birth to eight and a half pounds of it, my body still shouts "breeder!" Hips don't lie. And apparently neither do they shrink back to prebirth size as quickly after the second kid. Or maybe it's all the stress eating I've done in the last year. 'S'alright, though. I'm okay with getting older, and even with showing it. The more of my homies that don't make it to middle age, the more okay with it I become.

Bobby has finished one small painting project and starts soon on another. Unfortunately, the next one is on the other side of the Rocky Mountains, the spec home his cousin Wendell is building in Cedaredge, Colorado. If we still had our camper, we could probably accompany him, although it is still a little cold for that. But we don't, so we may take this daddyless time as an opportunity to take the babies to Kansas to see their grandparents, maybe leave them with grandpa and grandma after they come home from work in the evenings while I go out to the farm and begin the tedious task of separating our belongings from everyone else's belongings out there. The fact that we have lived without said belongings for a year and five months indicates that we probably don't need any of it, but we still have to find a way to get rid of it all. 

We are still working on which direction our next career steps should be. A painting business is daunting in an area so overrun with painters. The local consensus seems to be that painting can be done if one is willing to travel to do it. I would actually be fine with this if we could replace the above-mentioned camper we sold last year to finance medical bills and a down payment on a mortgage, because then we could travel together and not have to spent more time apart, since the whole idea of non-transit-related employment was that B could be home every night. Not to mention, the best times in our recent memories were of the summer before last, rambling about in the camper, waking up to new scenery every couple of days, making do with minimal stuff.

Since we are basically starting over from scratch, with none of our old, comfortable streams of income an option anymore, we are putting a lot of thought into intentionally building the life we want instead of just rolling where the wind blows us to, as we've always done in the past. We've always been too preoccupied keeping the wolf away from our door to really put a lot of planning into long term security, doing something we will still be happy doing five or ten years from now. We have talked, hypothesized, pontificated, and bounced a hundred ideas off each other in the last week, since B had to officially quit his trucking job. So far, we've only agreed that we are pretty much forced into self employment by the insurance situation. Everything else is up for debate. 

Two heads are better than one, and I know we will arrive at a solution that meets our requirements. Or we will shift our requirements. At any rate, we will get it figured out. I married someone with very little ego, who does not think any job is too menial for him if it provides for those he loves. I have watched him get eaten alive, give all the best parts of himself to a job he hates, but we have never once not been able to pay a bill on time. The ability to do so has been carved directly out of his soul at times, but he has always, somehow, managed to provide it when we needed it. Sometimes we have robbed Peter to pay Paul, but when it comes down to it, he would sell a kidney on the black market to keep his family afloat. I keep casting about for ways I can help, but it is difficult to come up with something that would work with my current life, Velcrobaby on my back and Big Brother tugging me around everywhere he goes, because there are so many wonderful things he needs to show me. Instead, we tell ourselves that right now it is time for Daddy to make an income to support four people while I make sure other sorts of bank accounts get filled- those of our children's emotional well being, physical touch, presence in our kids' lives. We can make bank later. We hope. 

In the meantime, we're taking the sixtieth look at our budget, trying to find more fat to trim. I've started inventorying our house, looking for anything we can sell. We don't need to store things we can do without. Last summer in the camper taught us minimalism is freeing. Neither of us wants a lot of belongings. We want experiences, feelings, and memories. In the past, I have struggled with missing a solid sense of belonging in a place with all of our bouncing around, but now I am beginning to think I misidentified the object of my desire. I now suspect place is just a hook to hang my hat between gathering the real things I desire- awe, beauty, wonder, love, joy, excitement, purpose. And no physical place, no longitude and latitude, regardless of the possessions I have stored there, can give me those things. Only friendships, relationships, the skies we wander beneath can pour such things into a heart, and only if it is open to receive them. 

And with those sage bits of what might be utter nonsense... Moving on.

It's warm and sunny today, curing all that ails. Hopefully. Little Brother woke up last night with no preamble at 2 am with alarmingly loud stridor, freaking out, wheezing and barking, croupy and gasping for breath. But an hour and a half of me holding him wrapped a blanket, sitting in an Adirondack chair on the back patio in the crisp night air had his airways soothed enough to breathe mostly quietly again, and spending the rest of the night under a heavy vapor from the cool mist humidifier fixed him right up. He woke this morning breathing with no effort. I wonder what that was about. I was sure he was coming down with another virus, but today he seems perfectly fine. 

Poor kid, I fear he has inherited his easily constricted airways from me. I spent an insane amount of my childhood in a foggy makeshift croup tent, lathered up with Vicks VapoRub, on a steady diet of sudafedrine and guaifenecin, which my parents swore by to keep the mucus out of my throat and chest and my airways open. I remember giving them a few nights just like Alex gave me- the loud barking of my own inhales and exhales waking me up, the panic as I ran down the hallway to announce to them, in honking gasps, that I couldn't breathe again. The bustle of activity in the middle of the night as they got up and tried to make me comfortable, soothe my bronchial tubes, reduce the inflammation so I could breathe. The difference was, they lived twenty nine miles from the nearest emergency room and as far as I know, never took me in, and we live about three miles from help if Little should start to turn blue. 

Now that I have my own kids, I think a lot about how they raised me. They let me wander out of their sight in my bare feet in rattlesnake infested grassland, in spite of the fact that I was their only kid and, because I apparently had a scorched earth policy regarding my mom's uterus, they could never have another one. 

This also blows my mind, now that I am a parent. I can't imagine going through what my mom went through. At twenty one years old, with plans of having a whole gaggle of kids, she went into labor with me, her first. She says it was basically painless. Upon being moved from the delivery room to her room (since this was 1983 and having babies happened in delivery rooms, not lovely private birthing suites), she began to feel a little dizzy, wondered if this was normal, asked the nurse who happened to be in her room at the moment for her opinion, and then tried to die. A lot of pitocin and twelve units of blood did nothing to help her hemorrhaging. In the ensuing chaos, she was asked to sign a consent for an operation, and upon trying, realized her fingers would not grip a pen, and that bleeding to death was not such a bad way to go. Then they cut her open and removed her uterus to stop the bleeding. She spent the next two weeks in the ICU, unable to see or hold her newborn. She says this was a minor detail to her at the time, considering that she was alive and I was apparently a magnificent marvel of cherubic perfection. I was bottle fed pumped breastmilk by other family members until she was discharged, and when she finally held me again, I took to breastfeeding as if we had been doing it all along. She escaped what could have been a whole other tragedy with the blood of twelve strangers pumping through her at the height of the 80's AIDS panic. At some point in the following years, she had to process the fact that her dreams of a big family were gone, her body was scarred, that childbirth had very nearly killed her. 

And yet, after all that, they let me be a free range kid. They let me fall off horses, slide down barn roofs, pull rusty nails out of my feet and then, still refusing to wear shoes, run through mucky feedlot pens hand-feeding the cattle, ride motorcycles. They stuck me in a croup tent to wheeze my way through childhood without rushing me to the emergency every time I had an episode. Now that I am faced with the same decisions, now that my own tiny miracle is reaching an age that demands budding independence, asking to play with his peers without my hovering while disconcertingly oblivious to his own mortality, I now realize how hard that must have been for her. I now realize how vulnerable her heart was, wrapped around me and all out in the open, and how every dangerous thing she let me do must have ripped it out a little further. I feel a little weak thinking about it. I have to outlive them, because if something happens to me, they lose all of their children in one fell swoop. It's one of those burdens an only kid carries alone. It isn't that a parent of multiple kids care about an individual child less, but an only child carries not some, but all of their parent's hopes, dreams, and future. It's no wonder we onlies are a little socially awkward. As much as the adults in our lives tried to give us childhoods, we have been on center stage our whole lives. Sure, this meant not having to share the doting or the Christmas presents, but this also meant that we have never truly been able to just be kids, always filling a role that is held solely by us. 

But if anyone wonders where her grandson gets his fighting spirit, they need only to look as far as his grandma. She is still kicking, but has already been preceded in death by her appendix, her uterus, and both breasts. She lost a brother in a car accident and was the one to find both of her parents dead as they passed away five weeks apart twelve years ago. She has had to turn loose of more dreams than most of us have even entertained. 

And with that, over and out. Perhaps it's time to go attempt to be a good mom myself. 

Speaking of mom things, this hangs on a bulletin board in the oncology clinic. I gave it to the creative art therapist there, not sure if she would have a use for it or not, but it was too big to display in my own house. I thought maybe some kid needing some artistic inspiration might find it in a drawing of a giggling kid and his Chemoduck. Wasn't really looking for notoriety, but the whole place now recognizes Daniel as that kid on the wall in the waiting room.