Dad in a ratty sport coat

I have read on multiple occasions that there’s nothing more boring than having someone tell you their dreams. That, and retelling something funny that happened and you just had to be there, never pan out for the listener. So, eh, sorry.

I wanted to record this one because A. I want to start recording all of the special dream-visit dreams and B. This one was about my father, who transitioned after a Glioblastoma brain tumor back when I was pregnant with Rockinrolla, in October of 1996. I haven’t dreamed about him much.

A bit of background: My father was the exact opposite of a fashion plate. He couldn’t have cared less about the clothes he put on his body. Suits from decades past, thick polyester ties, no iron shirts, elastic waist khakis and shorts, white socks with loafers. He just didn’t care. His nod to style was the meticulous maintenance of his comb-over (my mom cut his hair, because he was afraid a barber would whack off that eight inch curtain of ginger brown hair) and thorough shellacking with Aqua-net. And the daily grooming of his bushy, full beard. He’d just as soon pine for a cashmere sweater or fancy sport coat as, say, a Precious Moments collectible thimble. A new welder or jigsaw for his shop, though, or the hydraulic lifts for the boat and Sea Doo, now that would get his juices going.

Priorities that were hard for my painfully clothes-conscious teenage self to swallow: You’re going out in public? Wearing THAT? with ME?? But now, of course, I think it’s pretty awesome that he had his passions and didn’t give two hoots for spending money on his clothes.

On to the dream. Short and very sweet:

We (my dad and mother and, I think, my mother-in-law)* were in Nashville for an overnight festive family event** on Christmas eve. We were going to stay in a nice hotel and go to a sculpture garden or art museum or something, and out to a nice dinner, and then to a Christmas morning church service.

My mother and Grandma L. walked ahead of my dad and me. He was wearing a faded black cotton sport coat over a v-neck sweater. The coat was way too tight and short, and the shoulder seams were ripping open.***

I thought how like him it was to not even notice what he had on, and then thought that maybe he would like something nicer to wear, he just didn’t want to spend money on himself and would rather buy stuff for our family that he thought was more important. I decided to buy him a fancy new sport coat; I’d sneak in while he was sleeping and measure him from shoulder to shoulder and his sleeve length so I’d get the perfect fit. A subtle, woodsy plaid, I thought, would be nice. I was really excited about giving him that.

We walked with our arms around each other on the cold sidewalk, and it felt so good to squeeze his ribs and feel his arm around me. He was laughing and smiling and incredibly, perfectly happy. He looked so great, comb-over and all. I started crying in my dream, just weeping, as I was feeling how much we loved each other and looking at his happy face. Why am I crying? I kept asking myself. This is wonderful. This is perfect. Why am I crying?

* My brother is absent. Where is my brother?

** Zero basis in reality for this trip. Stay in a nice hotel an hour from home, just because it’s festive? Surely you jest. Also, we didn’t go to church with any regularity after I was in late elementary school.

*** He never wore anything THAT bad.

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Last Wishes

It was Daddy J’s grandmother’s send-away this weekend. She was a huge part of our lives and I’m sad that she’s no longer around at the other end of our street, waiting with cookies for the boys and stories about dragons. It was a really wonderful gathering this weekend, including a party at a good family-friend’s home for a visiting family from long ago. Lots of cousin playing and visiting.

It was a sickness ridden weekend, too, unfortunately. Part of the Knoxville contingent couldn’t make it, or went home early and sick. Part had already had the Dread Stomach Bug, and some of our family got it over the weekend. Daddy J has a touch of it, but it’s either a milder version or just in the beginning stages or a different bug entirely. I think Rainbow woke up slightly sick yesterday, but rallied after tylenol and advil and felt good last night, and had no intestinal issues at all. I’m kind of on the fence, like Daddy J was yesterday, so I took Rainbow to Grandma L’s for an overnight in case both grown-ups had to take turns in the bathroom tonight.

Anyway, I’m feeling… not horrible, but sort of afraid to eat. I had a decadent loungey afternoon and finished my book, Spooner. Loved, loved, loved it. I have a sort of dry-eye hangover from reading all day, but I’m sipping on a cold martini and will not have a little bun waking me at 5:30, so it’s okay. Early bedtime, and hopefully no tummy troubles.

The family has had to talk about Grandma’s estate and her bodily remains, of course, and I wanted to seize the moment to think about and record what I envision happening after I die. Daddy J and I have talked about it, and we’ve talked a little bit to the big boys about it, but I think writing it out is a great idea, just so everyone is on the same page.

All righty then:

1. I think it would be great if any or all of my body parts could be used for organ donation, but ONLY IF Daddy J and the boys are okay with that. We did donate several of Ward’s organs, and I am very glad that we did, although I could not bring myself to donate his skin or eyes. It was just more than I could do. So, I understand that it may be too much, and that’s okay, too. You don’t have to donate any or all of my organs that can be used, but it’s completely great with me if you do. I don’t want my body donated to science, though. Organ donation = yes. Medical school study = no.

2. I don’t want to be embalmed or have a visitation. If cremation is impossible for some reason, then bury me in a plain wood box where the roots and water and dirt can get in. I do NOT want my body to be preserved in any way, and I very much want my body to be cremated.

3. I would lean toward having ashes scattered over the mountains near Monteagle, at some accessible cliff with a nice view, because that’s where we were married and it’s pretty there. But there’s no rush. Hang on to my ashes as long as you want to. It would be nice to combine them with Daddy J’s and Wardie’s, too, and the other boys’, for that matter, if you want to keep track of them that long, but really, they’re just ashes.

Side note: I was dusting the mantel a couple of months ago and shining up the cookie jar where Ward’s ashes are. I imagined/heard him laughing at me for treating them so reverently: They’re just ashes! Would you keep my fingernail clippings in a special place if you still had them? And maybe I would, I answered, feeling sort of silly. They’re just ashes and fingernail clippings, but they’re yours.

4. Instead of store-bought flowers, I’d be pro people spending money on donating either to the Bell Buckle Park or to the charity/foundation of their choice, and then letting the surviving family members know about it. If somebody wants to set up a memorial foundation or a scholarship in my honor, that would be very nice, I just don’t know what it would be for at this point. I like the whole random act of kindness movement, as family members and friends did to honor cousin Henry’s young transition from life. I like the idea of people choosing what to do to in honor of someone, but it’s also nice to work together to do something big that wouldn’t happen otherwise, like Henry’s fund So, yeah, that part’s up to the survivors, I guess, and what they feel like doing.
(As Daddy J’s Grandma would say: Whatever’s right.)

And… that’s all I can think of for now, what with my fuzzy eyes and empty martini glass and questionable tummy. But, good info to have, I think: donation, cremation, park donation or acts of kindness or… whatever’s right.

Comfortable

It’s been a gold star kind of day. The Commodore turned fifteen (fifteen!!) today and we had a small birthday breakfast for him with the closeby family. We also went out to dinner at a Japanese restaurant (Samurai) last night with just our little family, and that was lovely. The Commodore is a big sushi fan, so this was his pick. The best part was hearing the Commodore and Rockinrolla laughing and chatting about teenagery stuff in the backseat on the way there. It’s so tooth-achingly sweet when they talk like that, like they are best friends, like we hope they will be for the rest of their lives.

Daddy J and I strolled with Rainbow to Ward’s playground this afternooon. We do that a lot. Rainbow, in fact, pitches a frothing fit if we’re out on a walk and we don’t go to the playground. Generally, it’s easier for everyone involved if we just give in and take him there, even if we just intended to walk around the block.

Walking around Ward’s statue was a Mexican woman holding up a girl by her armpits and helping her walk. The girl looked off into the distance and held her twisted wrists and hands up to her chest. A man was sitting on a bench around the statue, laughing and chatting with the woman. The thought crossed my mind that the woman and the man were the girl’s more distant relatives, like her aunt and uncle, or babysitters, maybe, rather than her mom and dad, because they were so relaxed and happy. Maybe that sounds stupid; I had this idea that parents of a severely disabled preteen would be stressed out and weary. These people talked with the girl, who responded with an off-center smile (but no speech) and they all seemed very… comfortable. Not exhausted or bitter, just enjoying the nice weather and letting the girl get some practice walking. They just walked around and around Ward’s statue.

Daddy J had brought the GSD, so he sat down (after throwing the frisbee for Wolf a few times) and chatted, in his broken Spanish, with the family while I played with Rainbow on the playground.

Yes, he told me later, they are her parents. She’s eleven. At the age of seven, she choked in a restaurant and they thought she was dying. She didn’t die, but their bright, healthy girl was forever changed after being deprived of oxygen for awhile.

It was so hard to see. I’ve thought so often about how our lives would be different after Ward’s accident if he had lived. It seems a particularly cruel twist of fate to have a child born healthy who, through an accident, is changed into a child who needs round the clock attention and who will never live the adult life you’d dreamed of for him or her. It seems too much to bear.

It makes me feel humble.

What was incredible, though, was how non-bitter these people were. They were chatty, outgoing, and seemed thrilled to have a nice playground to take their kids to. (They had other kids playing on the equipment.)

They were comfortable.

It reminded me of a phrase I hear on our infrequent visits to church: Comfortable Words. Words that are intended to comfort, like, God will not leave you alone when you’re hurting, and Even if it sucks now, it will be tons better at some point soon, just wait.

And also of a prayer that I love. The Prayer of St. Francis made an impression on me when I was newly bereaved, and I still love it. I’m glad I read it again today:

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love.
Where there is injury, pardon.
Where there is doubt, faith.
Where there is despair, hope.
Where there is darkness, light.
Where there is sadness, joy.

O Divine Master,
grant that I may not so much seek to be consoled, as to console;
to be understood, as to understand;
to be loved, as to love.
For it is in giving that we receive.
It is in pardoning that we are pardoned,
and it is in dying that we are born to Eternal Life.
Amen.

It’s the “Let me seek to give comfort rather than receive it” that is so stunning to me. It’s an enormous goal, but it makes so much sense. The seeking to give comfort was a big factor in pulling myself out of my deepest grief. I received tons of comfort (tons!) and it helped me tremendously. But I found that on some of the grimmest, most horrible days, I could get a fix by walking down the street to visit an old lady who lived alone, or by sending a card to someone I met through Chemo Angels, or by trying to give support to another grieving parent.

I’m pretty self- and family-centered now, and I do cut myself some slack. Rainbow is not in preschool or daycare, and it’s just logistically hard to reach out to the community as much as I’d like to. I do feel “comfortable” for the most part (within our family, anyway) and look forward to being “comfortable” within a larger sphere before too long.

It’s a hard goal for grieving parents, being able to comfort others when your life has been ripped apart, but it was a terrifically healing one, for me, anyway. It gave me something to reach toward, and without fail, trying to give comfort actually did give me comfort. It was almost embarrassing: I’d want to tell people that really, REALLY, this act or gift or whatever was more for me than for them, because it actually lightened my leaden, grieving heart. That the act of trying to help someone else was a salve that soothed when nothing else would. That I was so grateful to have the time and ability to do whatever small thing it was.

Understand that I am a selfish and vain person, prone to all kinds of character flaws. I am not nearly as charitable as many, many people I know, including some ladies who volunteer with me for Habitat for Humanity and who recycle their ball gowns instead of buying new ones because that way they can “give more to charity.” Or my friend down the street with three kids at home who dazzles me on Facebook with her frequent fundraising activities. Or my friend who visits a nursing home every week to comfort the residents there. Or a relative who volunteers weekly at a charitable donation service. I’m not there yet.

But I want to be.

God, please just let me be comfortable.

hand-me-downs

I’ve found myself reaching for some of Ward’s old clothes to put on Rainbow and then pulling my hand away and choosing something new. It’s not the pants or jackets so much as the shirts; specifically, I can’t bring myself to put Ward’s favorite shirts on Rainbow. And the ones that Ward wore for cherished pictures we have – well, forget it. I just can’t do it.

I told myself at one time that it would be cute when I could dress Rainbow up in the little white sailor suit Ward wore for his christening, or in the dressy little oxfords and sweater vests he had. And… no.

I was feeling sort of crummy about it and giving myself a hard time: They’re just CLOTHES for Pete’s sake! Wardie certainly doesn’t care if you dress Rainbow up in them.

And I wondered if I was being weirdly clingy to these material things and wanting to keep them special and untouched in Ward’s memory. And I know, I know, that would be fine and all to do, but really, they’re just clothes and I don’t want to be that way.

Then I realized that it wasn’t even about Wardie when it came to those special memory/photo clothes. I want Rainbow to be his own guy at all times. I don’t want him hearing “Oh, you look like your brother Wardie! I remember when he wore that little shirt,” and then seeing somebody wipe a tear away. That’s not what I want for this little man. So, it’s good, I think, to reserve the most Ward-specific items and let them stay in storage. Not because Wardie is any more special than Rainbow, but because they both deserve to be individuals.

*****

(Yes, we got a new puppy a few months ago. Her name is Scarlett. Daddy J saw an advertisement for dappled miniature dachshunds, which I have coveted for years, and told me to go pick one out for my anniversary gift. I love her. She is totally ridiculous and somewhat naughty at this point, but she is everything I want in a little lap dog: tiny-ness, negligible shedding, and physical beauty. Honestly, if she were shrunken down to, like, 1/100th size, she would make a stunning brooch. She has BLUE EYES, PEOPLE.)

(And yes, you may have noticed that I like them long and lean. Daddy J loves his GSD (as do I) but my favorite doggy body style is stumpy and stretched out, as demonstrated by Oscar (wiener dog #1), by Dana (the Corgi), and by Ruby (the basset hound.)

(Yes, it’s silly of us to get a goofy little puppy when we have a toddler at home. Yeah. Whatever. I still love her. Plus, her crate is really small. And she won’t be a puppy forever.)

(Interesting side note: I named her Scarlett because I wanted to name her after the most beautiful and feisty Southern woman I could think of and I thought the little girl cousins might be impressed. Also, it amuses me that we have two hound dogs named Ruby and Scarlett. BUT! Daddy J pointed out that the breeder from whom I bought her (who is totally NOT a puppy mill breeder) is named TARA. So I got Scarlett from Tara and how great is that.)

it’s just all out of order around here

I just scrolled down to check, and sure enough, I didn’t post anything about the anniversary of Ward’s transition this year. It was in late July.

(I still don’t want to know exactly when things happened, with regards to the initial plunge into the water and the days in PICU, although we mark July 28 as the day we lost him.)

Once again, our friends and family brought flowers and cards to our porch to show us that they remember him and know we still hurt and miss him.

I still can’t really believe it happened sometimes, but it did, without a doubt.

It’s stranger, really, than anything I could have imagined. It beats, Honey, we’re moving to Uruguay! and Holy cow, there’s a flying saucer in the backyard! any day of the week. It’s this unexpected and life-shattering thing that happened to us.

There it is.

Yup.

It’s okay, though, in a way that probably only other seasoned grieving parents can get. It clenches my heart in an iron fist sometimes, but whatever. There’s still laundry to do and dinner to cook, homework and basketball practice and diapers.

I thought about it today on my walk with Rainbow, the grief thing. I like to think in metaphors, because, well, I just do. I like to unpuzzle things that happen verbally and symbolically in an effort to make sense of them.

I thought about grief as a ball and chain that gets plunked in your lap. One day, you’re traipsing around, unencumbered, and the next, you have a fifty pound ball attached to your ankle.

You sit there for awhile, holding this heavy lump of iron in your lap, and don’t even know what to do. Standing is hard, walking is impossible, and forget dancing. You’re jealous of the old you and of people who don’t have this thing attached to them. It’s not fair.

And you eventually get off the couch and do what you have to do, lugging this ball around with you.

Clink, clink, clink.

It pretty much sucks, but there are hidden benefits. Like, you get a lot stronger, for one. Lugging it around makes you use muscles that never got exercised before. You’re tougher. Plus, you develop an eye for seeing the balls and chains that other people have to drag around. It’s a bummer of a club to be in, sure, but it’s sometimes nice to compare notes with other people in your boat.

(What do you do about ankle chafing?)
(Where do you put it in your bed so you can sleep?)


And that maybe you can even get to a point where you can do stuff with it. Swing it in a circle like a flail and release it up into the air. It goes like a comet, dragging you after it to a place you’d never have gone otherwise.

(i.e. meditation, deep prayer, for-real discussions with the kids about the meaning of life)

And, yeah, I don’t know. Grief isn’t fun, no matter how you try to pretty it up with metaphors. I miss him so much.

I’m just committed, as I have been since it happened, to having his existence make a positive imprint on our family. He was/is too pure, too sweet, too beautiful, too adored to have anything ugly attached to him. I will acknowledge the horrors, but I will celebrate the gifts. The gifts are much more important.




Balloon update

It’s always so fun to track where the balloons we release in honor of Ward’s birthday go. So far, three have been found.

The first was found on Oct. 30 in Rock Island, TN by a lady in her driveway. It was sort of strange when I got her email because her name is really similar to the photographer who took some pictures of Ward years ago, but it’s not the same person.

The second was found in Decatur TN (Meigs County) by a man who was deer hunting in the woods. His sister emailed me about it. She has two small children, ages 7 and 4.

The third was found in a pasture in Evensville, TN by an older couple. Their grandson emailed me and said that they have his card in their house.

I like it that his picture is getting out there on his birthday, and it’s good, I think, that people get that pang of loss and give their loved ones an extra hug when they find his card.

unblocked

So, I have some personal goals that are pretty exciting. Not new goals, really, but they have circulated back to the top of my mental pot and are bobbing up on the surface.

I have been writing pretty prolifically and submitting articles to various online and print magazines.

And… got one accepted by Babble.com! To be published next month! Signed the contract and everything!

I’ve also been submitting to Parenting and Adoptive Parenting magazines, so we’ll see.

But the big news is something I’ve wanted to do for years: have a romance novel published. Yes. I do love me a good romance novel. I wrote the first chapter today and have the plot in my head. Spoiler: there are wildly racy bits that I don’t think I’ll want my mom to read, and they end up together.

My husband, who is super-supportive of my goals, was in favor of my desire to modify our attic into my own office space. That’s where I’m typing right now. O, how do I love my office. Yes, I do.

And I love my husband, who is superlative in every way I can imagine.

The kick-in-the-pants for my novel was meeting someone last night who works in publishing for one of the big romance novel companies. She had some great advice for me and told me to call her with any questions. Sweet! I’m taking this as a sign that NOW is the time for me to finish a novel and get it out there.

(Yes, I did have about 3/4 of a romance novel completed, The Gardener’s Son, and it got eaten when the computer died. Apparently, for $1500 we can have a computer sleuth go through our files and see if a shred of it still exists. It was very heartbreaking. But – they WERE going to end up together. At least I know how it turned out.)

I have a very soft spot in my heart for romance novels, by the way, because they were a life raft for me after Ward’s accident. I didn’t want to watch TV (too much risk of disturbing imagery) and I often couldn’t sleep, and I always needed to shut up my raging, swirling thoughts. Enter the romance novel: you know that good will triumph and you know that the people in love will end up together. I must have read a hundred romance novels during the months after his transition. I meditated, too, of course, and talked with friends and online grief groups, but there were plenty of times when I just wanted to lose myself in a happy-in-love story. There still are. I love romance novels, and well-written ones are real treasures.

So, wish me luck and perseverance. I’m sharing, by the way, so that I’ll also be accountable in a public way for my ongoing progress. My plan is to try to write daily, either working on the novel OR writing articles for publication in magazines. I will for sure put the link here for the Babble piece and any others I get published.

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