Whewwwwwww…

That’s the sound of my relief that Daddy J is home from his four night business/personal trip to Washington state.

Whewwwwwww…

Not that the kids have been trying or that anything has gone awry. The kids have been perfect and everyone is well. I just got weighed down with some grief that I haven’t felt for awhile. It was like a net was thrown on me and I suddenly found myself having to operate under the weight and entanglement of the whole thing. I don’t know if it was the end of the year, marking another year gone, or feeling the deep grief that cousin K and her family are going through.

Bad Feelings got reawakened and the old longings and regrets kicked in.

I miss him.

It happens.

The kids, really, are very helpful in bringing my mood up. They are funny and smart and generally extremely helpful. On one of the worst mornings, I dragged my rear end out of bed and announced that we were all going to the mall. Rainbow’s naps have been a little sporadic, so I decided to just figure on him skipping entirely and spend the entire afternoon there. It was a rainy, cold day.

But it was cheerful and bright at Chuck E. Cheese’s.

(Or, as Daddy J calls it, Yucky Sneezes.)

Rainbow’s first trip to the land of the Mouse, not to be confused with the one who lives in the Land of the Monorail and Twelve Dollar Turkey Legs.

It was awesome, A. because Rainbow loved it, and B. because he didn’t even want to play any of the games, he just wanted to run around and climb on stuff (read: cheap thrills) and C. it’s kind of impossible to be depressed when you’re chasing a laughing, thoroughly enchanted toddler around an arcade and catching glimpses of your teenager engrossed in the basketball game.

Checking out Mama on the Chuck E.T.V.

Afterward, we went to the play zone at the mall. Also awesome.

Then ate in the food court. I’d give this experience a C. Rainbow was tired by this point and kind of a nut. The falafel sandwich I got was pretty gross, and Rainbow made a mess with his food. He’s not a fan of sitting in a high chair in general, really. He’s kind of an action mealtime guy.

Then TJ Maxx, where Rainbow got a new tractor play set. I’m learning that retail therapy doesn’t have to be about self-gifting, although that sure works sometimes. It’s also about buying stuff for your kids and getting them all excited. That works, too. And No, I am definitely not above that.

Yesterday was another good one. I took Rainbow to his class at the children’s museum and he did GREAT. He’s doing better at paying attention every week. We played in the museum after with the big boys, then took Rainbow to Grandma L’s. The big boys and I had a gold star day: Lunch at a fancy little restaurant (including dessert!) then shoe and music shopping and a trip to Kroger. We met Daddy J for dinner last night at Bonefish Grill and welcomed him home.

And now it’s back to school time.

Whewwwwwww.

I need to remember that, when I can, the powering through and making myself get out to do stuff is helpful when I’m sad. Sometimes it’s impossible, when the grief attacks. Sometimes taking to bed is all one can do, especially when the grief is raw and new. That’s a powering through all its own.

But now that I’m in this ripened state of grief, with some callouses built up, the worst case scenario (like, crying in public) isn’t all that bad. I mean, I’ve done it before, and I’m sure I’ll do it again. But in general, distraction and activity work great for these minor visits to the Place of Sadness.

I think I’m back now.

ghosses

I walked with Rainbow down to Daddy J’s grandma’s house. It’s mostly emptied out and is pretty messy inside. It makes me very sad to be in it.

In the last months of Great-Grandma’s life, Rainbow was very uncomfortable in it. Grandma was unwell and the atmosphere was, at best, subdued and, at worst, pretty bleak. The last few times he saw her, he was took a long time to warm up to her aged and shrunken appearance, and, a couple of times, he flat-out refused to go in. Halloween was kind of a bad scene; he wouldn’t stop crying and making for the door when I took him in to see her.

Anyway, that made me all the more surprised when he wanted to hang out in her house today. Cousin R was over from Knoxville to pick up some items, but by the time we got down there he was about ready to go. Rainbow, on the other hand, wanted to go upstairs and explore. He wanted to build with the bin of Mega Blocks that she kept behind the sofa for toddlers. He did not want to leave.

We visited outside for a while with Grandma’s neighbor, M, whom we’ve known since the big boys were babies. (Back in the day, we used to live right across the street from Great-Grandma. And before, that, we knew M because she has worked at our alma mater in town for I-don’t-know-how-long.) She had her dog with her, a black Pomeranian named Charlie who was literally almost as wide as he was long, due to excessive fluff and fat. Rainbow was totally smitten with Charlie and buried his face in that black fluffy stuff, giggling.

I had already been feeling reflective and sad about Ward in the last couple of days. Nothing earth-shattering or new, just sad and missing him. I was thinking about how my memories of him are fading; they are moving away from me like little boats on the ocean. Sometimes it seems that all I have left is the feel of his silky blond curls around my fingers, and the amazement I felt that someone so beautiful had come from my body.

Just sad.

I remember how he loved the Haunted Mansion at Disney World. I had been afraid that it might scare him, but he loved it. Afterward, for weeks he’d ask, “Do ya member those green ghosses? They would say ooo-ooo-ooo!” and just crack himself up.

I want to not feel sad about the ghosts. The messy house, soon to be sold, the lives that seem far too short. I want to see the ghosts for what they are: just memories of people who have moved on and are right where they need to be. I want to laugh at the idea of sad or scary ghosts – oooo-ooo-ooo! – and know that the people we love are laughing with us.

***The part Ward loved best was around 6:00, when the ghosts are in the graveyard.

first little soldier

So, I have a piece published on Babble, and I’m sort of nervous about the whole thing. It’s very personal, and it’s all just out there. So far there has been one friendly comment, which was nice, but will the trolls come out of the woodwork and smell fresh meat? Will people pull quotes out of context and use them to prove what a dumbass/callous bitch I am? Will people say cruel/judgey things about my life and choices? Will I be able to shrug it off?

(uhhhhhh)

That said, I am super, duper excited about it. I have sent off a bazillion (well, maybe eight) pieces to Babble, Adoptive Families, and Parenting, and am all hopeful to get something else published very soon. Also am working on the racy romance novel (up to about 17,000 words of 55-50,000) and that’s fun.

The writing is a big dream of mine, and it feels so great to take this first step of getting paid to write something and put it out there. My job-job (writing passages for and editing/revising English standardized tests) is something I really love, and it has the added bonus of getting my writing muscles all limbered up.

Daddy J fully supported me in converting our attic into my office, and it’s perfect place to work. It’s a beigey soft and coral pink, totally feminine and comfortable, with shaggy tan carpet. The perfect little nest to hatch dreams.

So, go check it out if you get a chance.

(holds fluttering stomach)

I hope you like it.

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.

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