i get by with a little help

After more than a decade of avoiding cow dairy, I started eating ice cream again when I was pregnant. Not any ice cream. Only one kind: Straus Family Creamery Organic Coffee Ice Cream. It’s expensive but I’d pay twice as much, if it came to that. It is the best. Throughout last fall, I said I’d stop eating it after the baby was born. For the week before his birth and a number of weeks afterward, I could barely make myself eat anything. But once “the baby” (I really do call him that. good morning, The Baby! I say every day) was settled into his position in our family and I became more comfortable with everything about him, my taste for my favorite ice cream came back. I don’t eat it every night, no. But I sure look forward to the nights that I do. It helps.

It’s been a rough adjustment. I am so glad we have his heart surgery behind us. I wish I could have some kind of eternal sunshine of this mother’s mind performed on the part of my brain that keeps remembering him being tubed and cut. Of course, I didn’t actually *see* that stuff happening, but after I handed him over to the anesthesiologist and they walked into the operating room, it was all I could think about. I don’t even have to imagine that hard. I know what the surgery entailed, I know what he looked like directly afterward, I can fill in the blanks. And those images wake me up in the middle of the night, still.

So what I’m saying is that I appreciate small pleasures. I am glad for little distractions that make a difference.

And I am incredibly grateful for all the people who are the coffee ice creams in my life.

Local folks have brought numerous meals. Far away pals have sent thoughtful things in the mail. Many of you have emailed encouraging words. A dear friend of mine flew out from Phoenix not only during that difficult week surrounding Uly’s birth, but last week, as well. I honestly do not know what I would have done without that friend, who put her own life on hold to help out with mine.

For a lot of reasons, I really ought to wean myself off of my ice cream vice, but I confess I will likely remain dependent on the goodness of others for some while yet. Before the end of this year, he’ll have more surgeries. In the meantime, we have worries about whether or not he has other issues, are we missing anything? Some days I have barely been able to keep it together, but I would have fallen apart completely if not for the help we’ve received.

(yes, another cheater phone picture, previously posted on instagram! i can barely string a few coherent words together lately, so careful picture taking with an actual camera is probably some way off. but the baby! he is so sweet, you don’t even know.)

we did it!

This is just to say that we’re on the other side. The dreaded thing is done. Soon I will go to sleep on fresh clean sheets in my own bed with my baby tucked up next to me. As it should be.

I am so exhausted. It was a very rough five days, but that’s better than a rough whole week, which is what we were planning for. Ulysses had the best case scenario every step of the way. His recovery could not have happened more swiftly.

It was wrenching to see him so out of himself. He was completely machinated, reliant on technology and constant management to live for the better part of two days. I’m glad I prepared myself for what he’d look like post-op. I was not surprised by the large angry incision down his chest. However, the drainage tubes did catch me off guard. I knew there would be tubes, but I guess I thought they’d be out of the same cut. I wasn’t expecting sizable tubing out of three separate entry spots. That’s four cuts, three small and one large, right there. He also had his central line in his jugular (straight into his superior vena cava), a line in his femoral artery, and an iv lock in his left foot. And then there was the ng tube in his nose pulling out stomach bile, the breathing tube down his throat, and a foley catheter. He had temporary pacer wires exiting the main incision which were attached to an external pacemaker. He was extremely connected to things. We couldn’t pick him up at all for over a day. And then when we could it was tricky to manipulate around all the stuff and he seemed uncomfortable.

After several days of seeing my boy glassy eyed from sleep and morphine, his face puffy and blank, I can’t tell you how good it has been seeing his smiles again. He has been so smiley since we got home.

We hope we won’t ever have to do that again.

(maybe after some catch-up sleep I’ll write a things I learned/observed while hospital living entry)

hospital food is gross (and ain’t you ever seen a two fingered baby before?)

Ulysses is out of intensive care and onto the regular pediatric floor! He’s doing as well as any baby ever does after cardiac surgery. We couldn’t have expected a better recovery, so far. Yay!

Because baby Uly doesn’t eat any food that I don’t make for him in my own in-house milk machine, I can order up meals while I’m here for myself. I’ve been mostly avoiding this nursing mom “perk” and relying on the cashews and tangelos in my bag, but I started feeling shaky last night and needed something more. The husband was gone for the night and I didn’t want to leave my boy’s bedside, so hospital food it was!

Thanks a lot, hospital, for perpetuating the myth that vegetarians like to eat plain cold tofu! It’s not that I LIKE plain tofu, oh no! It’s that I don’t eat flesh (13 years and counting, though I keep threatening to eat meat, a post for another time!) and I need protein. Granted, I didn’t know it would be cold and plain when I selected tofu as my salad add-in. I assumed it would be at least marinated. Anyway, I ate it all because I was hungry, which is probably why anybody with tastebuds would eat that bland, squeaky stuff. Sure we eat tofu at home now and again. But plain? No. Just because I ate it, doesn’t mean I like it!

Just because I’m handling this all reasonably well sure as heck doesn’t mean I like it!

I am glad for the mostly unflappable demeanor of hospital staff. It’s a comfort feeling like they’ve seen it all before. Even if they haven’t. I know my son has an unusual body. But I don’t want to see that surprise flash across your face when you see him for the first time. (I know this will always be part of his experience, and mine through him.) Thankfully, there been very few of those confused flinches here in the hospital. Hospitals should be very safe places, especially where things like differences and special needs are concerned.

It figures that one of the only double-takes came from the same nurse who administered meds like it was a squawking cat on the other end of the syringe and not a baby. Slow and steady, dude, your aim-and-fire-and-see-what-sticks technique could use some compassionate improvement. But this was in the middle of the night and I was punchy and exhausted so I met his vague insensitivity head on, “clearly it’s not every day you get to see such an awesome baby who looks like this!” Nurse dude caught himself and his expression immediately shifted from perplexed to neutral, “well, he’s a handsome guy, he’s got that going for him.” And I answered, “he’s got a lot going for him. Ulysses is amazing.” That’s what I said, but my voice was all Eff you. Eff you for letting your judgment seep out where I can see. Eff you for over-correcting with an insincere compliment (but not untrue! Super Uly is a beautiful baby). Eff you because it’s past 1 a.m. and I’m so tired and I know you want me to leave and sleep in the quiet room (because he kept saying, “why don’t you leave? I’ve got it under control here?”) but I don’t want to leave because I don’t like you and I don’t trust you, so there. (that’s a lot for a tone of voice to convey!)

For the record, I did go to the quiet room because I was just that tired and I did intend to stay but just a couple hours but I overslept and got myself locked out of the picu until after shift change.

I beat myself up about that gaffe all morning, but as Ma* says, “all’s well that ends well” and I’m typing this with my left thumb because my right arm is full of sleeping baby. It’s good to be able to hold him again, even if I can’t pick him up out of his bed by myself. He’s still attached to lots of stuff (but not as attached as yesterday!) and maneuvering him is tricky.

We might go home as soon as Saturday! In my limited experience, hospital discharge can take longer than expected, so I’m not holding my breath or anything. But it’s good to see homeward progress. Ulysses is weaning off of oxygen and still has two chest cavity drain tubes in place, which might be removed tomorrow. His post-extubation raw throated cry (sad baby dinosaur!) is sounding better already and he’s starting to wake up and open his eyes now and again. It’s torture, what we’ve put him through, really. But there was no other way.

And the thing about Ulysses is that it’s not heart surgery and then we’re home free. But one thing at a time. We’ll climb the next hurdle when we reach it.

*Ingalls

i am other people and so are you

This is what you want to know: The surgery was text book, no surprises, and Ulysses is doing beautifully!

I’m sitting at his bedside in the picu, lulled into pensive sleepiness by the aquarium sounds of all those liquids dripping in and out of him. I have a bed reserved in the intensive care parents’ quiet room, and I should get over there soon.

Once Uly was stable this late afternoon, the husband and I snuck away to a restaurant a couple blocks away. We really needed to eat. Anyway, the server teased us, “are you texting sweet nothings to each other?” as we both were buried into our respective iphones. I looked around and realized we were surrounded by couples, dressed nicely and looking relaxed, happy. Valentine’s dates! She left before we could explain, but as soon as she was back to our table I blurted out, “we have a baby in intensive care at the hospital! he just had heart surgery! we’re messaging friends and family with updates!”

I always thought heart defects (if I thought about them at all, which I doubt) happened to other people. I’d been in an ignorant fog. Other people have babies with serious health issues. Other people have babies with limb differences. Other people go to pediatric specialists and worry about insurance lifetime maximum payouts. Other people.

But now I realize that I am the other people. Some other ignorant lucky bastard out there is me, before I had the life experience to learn that we are ALL other people.

It only takes a little time spent in a hospital to see that all types are represented. Every kind of family is here. And we’re all as out of place as we all do belong.

I could’ve passed tonight at the restaurant, I could have allowed the server to assume we were just employing poor date etiquette, with our technology all up in our faces and hardly any words spoken between us. But I wanted her to know because this is such a huge thing and because I want to represent what families with children with birth defects look like. Which is the same thing as saying what families look like. Like us. Like you. Like anyone. The more we talk about it the less anyone can dismiss the possibility as something that happens to other people. We are all other people. We are all just people.

And people!! You all blew me away today with your constant and true stream of kindness. Every comment, every text or message, would cause my phone to chime and even before I read your words (and I read them all, I did.) I would breathe deeply and smile. Love. I depended on that stream of love so much.

Ulysses will remain sedated and on the ventilator until tomorrow. I rub his head, stroke his fingers, fat from retained fluid, and tell him I’m here. That’s all I can do for now.

(will try to post more tomorrow)

please and thank you

When we finished up with all the pre-surgical tasks (ekg, chest x-ray, blood draws) and concluded our tour of the pediatric intensive care, she asked if we had any questions. I shook my head No. I am pretty sure this woman, the cardiac care liaison, meant questions about the procedure or related logistics. I’m clear on all of that. I wish I could have said Yes! Tell me how it is that I’m standing here now. Tell me how to breathe tomorrow. Please tell me that when he’s grown he will look back on his babyhood with vague memories of goodness and security and love, not fear and pain. Will he grow up? Will he be ok?

Please know that I’m expecting a great lifting surge of kind thoughts and intentions from you (whoever you are) tomorrow.

My tiny boy, just barely three months old, is having his chest cut open and his broken heart repaired tomorrow. My baby is going to have his heart stitched up on Valentine’s Day and nothing else matters. If you know my boy or know his story, I have to believe you will be thinking of him. How could you not? Every heart shape you see will be etched with his name. Ulysses is loved.

I have been so caught-up in the newness of everything, so focused on learning about my son’s issues, that these past three months have happened in a snap. This is my honest excuse for having such a backlog of thank you notes and letters. So much kindness has come into our home, through the mail and from in-person friends alike and I am so appreciative. Consider this a placeholder of a proper thank you, a sincere acknowledgment until the worries fade some and I can send an actual written response.

Please think of us tomorrow, with all of your love and hearts and sweets. It’s going to be a very hard day.

Thank you.

(if this first post from my phone is successful, i might be able to blog during the coming week at the hospital)

happy birthday, babe lincoln!

How can you not be charmed by a little girl whose first crush was on President Lincoln? The little girl’s a teenager now (whoa.) and is out of town for a couple of nights, so we didn’t bake our traditional cake. Her crush has long been downgraded, anyhow, to some kind of history lover’s fondness. But old number sixteen is still her favorite and we try to observe his birthday.

Remember when we lived in the desert and I was freezer paper stenciling everything five years ago? (just nod your head, I’m reminiscing here.) And when I asked my girl what image she’d like on a shirt, she had only one answer:

We should locate that shirt in the too-little bins (I’ve saved everything, you know.) and cut out Abe and sew him onto something else. I’m not sure that she’d want to wear a dead president on a shirt anymore but I can see him looking just right on a throw pillow perhaps.

Because she’s not here and I can’t ask her permission, I won’t take a picture of the small Lincoln statue on her desk. But I will show you some (we have others but I was too lazy to search) of our related books. I wouldn’t bet for sure on this, but we might have more Abraham Lincoln books for children in our house than in our local library (ditto Ancient Egypt and various other subjects). I pulled this handful off the shelf to have on the table today for mister six to look through and read.

Presidential birthdays aside, I like the gather and strew approach to presenting other topics, too. We have a lot of books. It’s amazing how many can get lost or forgotten unless I gather up small groups and put them in noticeable places, like the dining room table. You know that whole No Reading At The Table traditional rule? Yeah, we don’t do that here. When Ms. Thirteen has her nose in a novel (per usual), I ask her to put it down, but I often read aloud during meals, little bits or small factoids, interesting things, so we can all talk about it together.

And that’s it. I have a longer book post to write but it will have to wait. I’m less than forty-eight hours away from my baby’s open heart surgery and it is, understandably, affecting me.

(photo quality caveat: the 1st two are from the point and shoot I used from 2003-2007. at the time, i thought it produced a decent capture. ha!)

chop an onion, see what happens.

When I don’t know what to make for dinner, I just start making dinner. You know how everywhere you turn, popular advice outlines how to be a better meal planner? Yeah, well, I’m the opposite of that. And not only am I NOT a meal planner, I’m kind of an anti-planner. I don’t make out menus weeks in advance. In fact, I rarely think about dinner at all until dinner making time. Granted, I’ve had a lot of housewifing years to cultivate both basic cook skills and a certain level of kitchen flippancy, and I depend on having pantry staples on hand, plus fresh produce. But the key, for me, is to just start. If I stand around thinking about it too long, it’ll never get done and we’ll be doomed to takeout (a rare cop-out, especially due to the limited number of takeout food options in our small town. I’d trade a lot of valuable somethings to be near Indian food again).

I chop an onion, and see what happens next. While I’m chopping, I mentally run through my kitchen inventory. What do I have that I need to use up? What have I not made in a while? What am I in the mood for? By the time my eyes are watering, I usually have an idea. Last night, I remembered that near-empty quart of blackstrap molasses in the cupboard. It had gotten so thick and unpourable, the last inch or so was stuck in the container. It would need hot water added to liquify and pour out. And do you know what I could use watery molasses for? Barbecue sauce. So I made up a big pot of barbecue red lentils, which starts, as most things do, with an onion.

Dinner was ready just as the husband arrived home, which wasn’t until 7. I hate eating dinner that late, but not as much as he hates coming home that late, especially after a twelve hour workday and over two hours of commuting time. We had the lentils over polenta with green beans on the side. With the advent of digital photography and blogging came this idea, I think, that dinner is always beautiful and interesting and served on eccentrically mismatched china atop a vintage tablecloth. At my house, it’s often as boring as plain steamed green beans on, yes, vintage but chipped up dishes and no tablecloth. Another thing to wash? No thanks.

And it wasn’t like a brilliant revelation or anything, but we were all sitting there eating dinner, and I thought This Is It. Full bellies and simple, wholesome food and all five (FIVE!) of us and the husband singing I’ve Been Working On The Railroad between bites because the baby loves it so and me randomly wondering out loud what I could spray on sidewalk chalk drawings to make them last a little longer, and then the husband singing his answer, so as to keep the baby happy, and me laughing because I didn’t really expect an answer (which was hairspray, by the way, that fella has an answer for everything), and the boy dancing like he does and the teenager telling me, “for the record, mom, I wholeheartedly approve of your choice of husbands”. And it hit me: This is it.

We didn’t know how to be married, how to have the kind of family we wanted to have, the husband and I. But we just did it. And we’ve had a number of what you could call Big Life Stressors over the years and not only is our little family still intact, but we laugh a lot and like each other. I’m sure I have something to do with it, team effort, you know. But I give a lot of credit to that husband of mine. My kids don’t know how lucky they are to have a good dad. Good isn’t even the word. Present, engaged, completely involved. He didn’t have an example of that sort of father but he became one anyway. He wanted to be a good dad and so he is one. Like that. And sometimes the simplest snapshots of our life remind me that we’re doing it right.

And that’s what we’ll keep doing. I’ll keep chopping onions and he’ll keep working a million hours a week and still find time for his family, too. We’ll do what we need to do no matter if we’ve never done it before, if we haven’t a clue. I feel dreadful about next week, about the baby’s surgery. It’s a necessary but dreadful thing. I don’t know how to do it. I don’t know how to be with him for a week in the hospital, how to make sure my other kids are fine, how to keep myself fed and rested and healthy. I don’t have any idea at all.

So I’m not going to think about it. I’m just going to do it.

genetics for dummies

We don’t have a name for what affects my son.  We have a collection of abnormalities, both extremely rare (tibial hemimelia), less rare (ectrodactyly), and not all that rare at all (ventricular septal defect).  He has several other very unusual peripheral issues. Being able to rattle off a particular syndrome would not change who he IS. But I think it would be a slight relief. It would fill the awkward silent space that overwhelms new introductions. I could meet questions with a solid answer. But I hate myself for admitting that, for being weak against the perception of judgment. The truth is: anyone who needs to know what he “has” in order to gauge their response and acceptance is not someone who deserves to know any details, anyway.

Initial microarray testing has been, so far, inconclusive. I read the best analogy for genetic testing the other day (I can’t remember where I came across this, my eyes cross from all the casual research I do these days) comparing the process of locating an uncommon genetic abnormality to reading a huge book, like War and Peace, and trying to find one typographical error.

After my warranted freak-out with regard to the who? where? when? of his upcoming open heart surgery, we did explore other options, met with another pediatric cardiology practice. We considered everything, and we’re sticking with the original plan, with the same team, after all. But it feels like we’re making an informed choice now instead of being bossed into some arbitrary default. I really needed to feel like I was choosing something.

Lately most of my choices involve choosing to cloister myself and the baby away from everything as much as possible. And I know it’s not the most sustainable -nor healthy- choice, but it’s honest. We stay home a lot. I zip mister Six to his three day a week school, I run pertinent errands, I avoid almost everything else. Being around people is still incredibly difficult for me. I have this constant, panicky dread, like riding through a carnival haunted house, and that level of spook is hard to tamp down in public. Some of it’s my own crazy, some is the pragmatism of expecting inevitable unkindness or ignorance.

Having a specific diagnosis, a certain named syndrome, wouldn’t necessarily help others to understand and it wouldn’t change who he is, but it might clue us in on any additional concerns. Maybe there are no other problems. We don’t know. It’s hard to enjoy the regular stuff of his babyhood (and most of it is as sweet and dull as the life of most any three month old) when I’ve got this wormy nagging scrutiny always on the lookout for previously missed dysmorphic features. When is the last time you felt compelled to measure your baby’s philtrum?

Like any parent, I hope for “the best” for my children, some indeterminate soup of happiness and ease. But knowing that the playing field isn’t even, that my little babe is starting out with a lot of knocks against him already, muddles up the regular way of things. I have this internal battle, my ferocity and determination at odds with a consuming misplaced guilt. To anyone who dares put up any extra obstacles for my boy, harshness or assumptions or anything negative at all, I want to kick them in the shinbones. But then I feel guilty, so unbelievably filthy with guilt, for having shinbones myself. I have a baby born without shinbones. Can you imagine your life without lower legs? Your children’s lives? And I have read the triumphant stories, I have seen accounts of amazing amputees. I know Ulysses will learn how to use his body and I know he will amaze us. Yes. But it’s not “the best”.

You know how I said that my life feels like a movie now? How the days surrounding his birth felt so surreal as to have been scripted? How it’s all been so over-the-top? Guess which day he’s having heart surgery. Go on, guess. Out of all the days in the year, only a movie would expect anyone to believe that the open heart surgery of such a wonder of a boy would happen on Valentine’s Day. And yet. . .

I promise I won’t ever break down in your presence. It’s in my DNA to keep it together with a smile and a joke. And if I don’t have something funny to say I will at least be even-keeled. You might not think that this is hard for me at all. But you’d be wrong.

(maybe you already saw that picture up there on instagram. he’s 12 weeks old and i’m just now taking a deep breath and showing his hands. these are HIS HANDS i’m talking about. one of the most obvious parts of a person, certainly not a secret part. when i tuck his hands into his sleeves, it’s not because i’m ashamed. it’s because i want him to receive the same neutral kindness that any baby would receive. but he’s so squirmy now. waving his little arms around. there’s a special place in hell for anyone who is less than kind to this boy.)

for the love of books

I interrupt a post I was writing about books to share this wonderful little film about books I just came across and watched. This is the most beautiful thing you’ll see all day.

same as it ever was

I do my best feeling in the car. Something about sitting there, focused and stationary, for all the feelings I ignore so well all the rest of the time to inflate conspicuously. Throw in some old song on the radio, and I’m done for: sick pit in my stomach, lump in my throat, all the sad sap cliches. This morning I was on my way, a little late, to take my boy to his school and, I swear, like somebody planned it, I clicked on the radio and heard the beginning of Once In A Lifetime. And it’s funny how a song like that can hit me two ways: first, the obvious, hey! I haven’t heard this one in a while. dang, I’m getting old. but then, oh! how did I even sing along to this when I was younger? I didn’t understand it at all.  You may ask yourself, well, how did I get here? How did I get here, indeed.

Right about there, mid-song, with me all full of nameless gnawing feelings, mister six asked from the backseat, “Mom, how old are you again?” If dogs smell fear can my kid sense the unseen outpouring of so much internal ooze from his mother? Even as he appeared to have been stuck in his own quiet thoughtfulness and/or possibly picking his nose? “Thirty-six.” You may ask yourself, where does that highway lead to? You may ask yourself, am I right, am I wrong? “And how old is dad?” “Thirty-eight.” Letting the days go by, into silent water. My boy went back to his quietness and I resumed my situational existential crisis.

My daughter turned thirteen yesterday. As in, the baby who made me a mama is now a TEENAGER.  Of course I think she’s terrific, it’s in my job description to spew effusive praise. But she’s more than that. She’s kind of magical. She could suddenly be spirited away on the scaly back of some otherwordly beast and I wouldn’t be the least bit surprised. It’s not just her cleverness or independence, it’s not her wit or her stamina, it’s not the way she was speaking in paragraphs when she was just 1 or how she’s now forty thousand words into her current novel-in-progress. I could tell you all these details and it wouldn’t be enough and you might not believe me anyway. She is a wonder. I am lucky (times a billion) to know her. But thirteen!

We dyed her hair pink, her long wild mermaid hair. We gave her a bass guitar. (something new on the side, though fiddle remains her steady.) I asked her to learn the tabs to Seven Nation Army for me and she promised she’d try. She still plays sincerely with her little brother and makes up the best, most riveting stories for him. She’s complex and awesome and a little lonely. She hopes that by the time her next birthday rolls around, we can be back in the city. And I hope so, too, with plenty of time to spare, even.

After I dropped my boy off and he ran inside, I drove the twenty minutes home and without having to keep my game face on for child passengers (the baby napped in his seat), I cried like a mother. I cried like a mother whose baby will have a very serious surgery soon and still have a difficult life ahead. I cried like a mother who lives in a town that is the wrong fit for our family, for so many reasons, and I don’t know how to fix that. I cried like a mother who has been hurt by the changing nature of friendship; things you once believed to be true and constant can veer sideways. I was overcome by the exquisite mortality of living, of the perfect ugliness of this great big beautiful world.

You may ask yourself, how do I work this?

I came home. Drank tea. Switched laundry.

(that cute five year old girl up there really is thirteen now, holy smokes!)