We made it to UIHC and back again. The girls both have perfect vision (as much as you can tell on a three year old, in Melia’s case) and have a clean bill of health. So far, so good.
They were troopers too. The appointment was for early afternoon and it lasted until 5. So, for no naps and no snack we did well. I got some questions answered. I had to tell our story again to a room full of doctors. I get the feeling that what happened to Stephen is really an anomaly. I mean, the condition is fairly common, one of the more common genetic disorders. But what happened with him really is rare.
Rare. It’s rare that you know someone who has won the lottery or was on Wheel of Fortune. But you don’t want to be the guy with the rare disease. You don’t want to have your MRIs plastered all over the tumor convention (true story). And you really don’t want pictures of your personal battle with hammer toe or psoriasis or face presentation birth to appear in a book somewhere. I just don’t want to be rare.
Unless…maybe my girls can be the other end of the spectrum rare. Yes, they are short. Yes, they have huge heads. Yes, they have the birthmarks. But what if they are the rare case that never goes beyond that. Dare I say it? Dare I even think it?
Other things that are rare: clean counters, low calorie cheese bread, a cash surplus, two kids sleeping at once, a never married thirty something man who doesn’t live with his mother but who does shave and vacuum once in a while. Vacuum tracks in the carpet are sexy. As are tight forearms. Like I said, rare.
Off topic, I have exactly a month until I pack a truck. Yikes. By the condition of this place, you’d think that we are settling in for another winter.
Filed under: Medical/Mental
I know that I am overly focused on moving. I think about it, plan for it and look forward to it. I am also fixated on Ella starting Kindergarten. School is a big deal to me. School supplies are already out in the stores (somewhere, my sister, the teacher, is appalled). I want my girls to do well in school; I could care less if they play club soccer or ever dance in a recital.
I see all of these events as milestones. Time markers. The little guy in Pitfall (remember Atari?) jumping on the alligators’ heads.
I remember Stephen walking Ella into her first day of preschool. And wishing that he would be alive to walk her down the aisle as well. I remember, realistically, hoping for kindergarten. We all know how that ended.
Tomorrow is another, overlooked, milestone.
I am taking the girls to University hospital to see the first of a string of specialists who are watching their NF-1 closely. Stephen had NF. It is a dominant genetic condition but his was a spontaneous mutation. Nobody in his family has it. Both of our girls do. Ironically, Will didn’t. Most of the time statistically, a complication like Stephen’s is rare. Relatively. Which is why, in part, that his cancer was incurable. It is so rare that almost nobody knows what to do with it. I am convinced that if our insurance would have covered doctors at Mayo, he might have had more time. Or not. I am not convinced of much at all.
I should have taken them a year ago. It’s been a while since they’ve been assessed. Well, Amelia never has been officially diagnosed but she has all the markers. I couldn’t do it. I couldn’t make the call. I didn’t want to talk to the medical community that had already failed my family.
I get angry when I see pharmaceutical commercials for something as dumb as a drug to make you have thicker eyelashes. Really? Is this what we’re spending our money on?
Another overlooked milestone is realizing, just today I think, that I am not alone. I have found in the span of a few weeks at least 10 other families affected by the death of a spouse. Other mamas that are getting up every day just like I do. Daddies who are doing remarkably well considering that society casts most fathers as bumbling at best and completely absent and incompetent at worst. It is the daddy of the little girl that touches my heart the most.
I am not alone. That’s big. For me.
I could have looked sooner. I knew they were out there. I have always known that there is no way that I’m alone in this.
It’s like the moving thing. And the hospital thing for the girls. The time was right and I didn’t know it. I just did it. I am doing it.
And I’m not alone. My girls…they aren’t alone either.
Filed under: The "Me" generation
Well, I’m officially full of the angry. Which is hard to do these days courtesy of CVS pharmacy. But I am absolutely seeing red.
I told FIL back in early May that I was planning a trip in late July to work on a one day gig. They have friends, coincidentally, who run a campground in that very. same. town. I asked if the girls could camp with them that weekend and we’d meet up again after my (one day) gig was over. Not too much to ask. I mean, it’s a win-win for all considered. They get quality time. The girls get to camp and be with the grandparents that they have only seen once since October. I get a day or so to hang with my friends and network a little and work.
So late tonight (after the littles are in bed), FIL calls. With a crappy cell connection to boot. He wants to know about my house. So I tell him what I know. I ask if he’s ready to camp with the littles.
“Yeah, I don’t think that’s going to work.”
Uh, okay. (beat. beat.) Are you going to Colorado?
Sidenote: I knew this was coming and I baited him. If you Twitter, I see it. If you Facebook, I see that too. If you don’t want me to know, don’t post it.
“Yeah, we really need to get out of town.”
Okay. Well my folks are coming next week for Ella’s birthday. (this is a hint)
“We are leaving middle of next week. [MIL] will put a card in the mail for Ella. We got her a gift card so you can do up her new room after you move in.”
I am quiet. Don’t know what to say. The steaming rage hasn’t set in yet. Okay well…
“I’ll call you later this week or this weekend when I can get a better connection.”
I hung up the phone. And cried.
I gave him plenty of notice. I am trying not to ask for much (and certainly not money, I have learned). It is not often that I need help and I find a way that they can. Like I said, I thought it was a win-win. I guess I was wrong.
I was wrong to think that they might want to be a bigger part of the girls’ lives. You know, since it was their son.
I was wrong to think that the road goes both ways. I was wrong to think that it is more difficult for us to go to them rather than vice versa.
I was wrong to think that gas money is a bigger percentage of my budget than his.
It is bad enough that I am plagued with mommy guilt every time I get a babysitter and, oh I don’t know, go get a haircut or spend a night out with friend? Now I have daughter-in-law guilt to go with it. Am I asking too much? Not enough? Should I demand more? Less? Should I quietly slip away and let them make the effort when they feel like it? Chase them to Colorado and demand some quality time?
No matter what I choose, I guess I am wrong.
Wrong to even ask.
Why is it that the 4thof July seems like more a holiday to me than, say, Valentine’s day? Is it the food: steaks, potato salad, popcicles? Is it the dirty children playing in the sand, in the bubbles, with the sparklers at dusk? Or maybe it’s the memory of holidays past. Fireworks over the ocean in Maine. Random tupperware bowls of summer food scattered across the island in my aunt’s kitchen; Uncle Bob and his never ending boxes of ice cream sandwiches. Stephen and I in the bed of my pickup truck watching for falling stars and avoiding the crowds. My grandpa in his black socks and sandals, watching us in the pool. My brother on the floor of his room, counting his money so he can ride his bike to the closing day of fireworks sales. The scar on my inner thigh where I burned myself with a smouldering punk that was stabbed into the lawn for safekeeping. Being hugely pregnant with Ella and Stephen checking us into a hotel so that I could float in a giant bathtub.
It might be my second favorite holiday. Thanksgiving is the all time favorite. I like the days that are all about food and gatherings of people who know each other really well. No pressure of gifts. Everybody contributes to the meal. It’s also less commercial than other holidays. But you can still decorate and work with a theme.
The days of summer are clicking along. Ella will have her fifth birthday next week. Amelia will be three next month (on moving day…she will get hosed, again). I started packing the first of the totes this afternoon following an epic battle with Ella to clean her room. Fail. I lost. After three hours, plenty of yelling and some tears, I lost. I couldn’t take it anymore and I sent her down stairs and cleaned her room for her. I packed half of it but she won’t really figure that out until later.
I think I’m an okay parent. Not a good parent. I don’t have it all together. I’m not all that consistent. I indulge them a bit even though I feel like I’m saying “No” more than “Yes” all day. I feel like I did really well through the infant, toddler and preschool years but what do I do with this kid who is growing up around me?
She is smart. She hears and understands everything said to her or around her. She internalizes all that she reads, hears and sees. She can play with anything and turn it into an intricate fantasy world. But what is it about “I need you to help me (blank).” that turns her into a child that is mouthy, belligerent, unkind and bratty? It’s not just the picking up. It’s also helping with kitchen chores, going to her room to rest or anything else that isn’t her idea. She knows she is bringing out the worst in me. I am incapable of a temper tantrum (see: Lexapro). I can raise my voice but there isn’t any fire behind it anymore.
Packing and putting away two totes of toys from their room is a start. I have a plan…when she doesn’t help…one more tote gets packed and labeled. It could be worse. I could just fill garbage bags and take them to the trash can. But that’s really not nice and I’d probably regret it later.
Part of me thinks that this is just her and not necessarily my parenting. Amelia is a good helper and always has been. Ella? Almost never. I encourage them both. I reward them with praise or outings or whatever for a job well done. I will not resort to bribery because that’s a slippery slope. But I need something that will work for her.
This? Right here? Is one of the reasons that two parents are better than one. This is really freaking hard.
Filed under: Moving beyond yesterday
Remember that part, about three weeks ago, where I was suffocating in my own stress? Where I felt like I can’t breathe? The cause of which was do I move or don’t I?
The final word is in. I am moving. I found a house, I can afford it and it’s in a great school district. The town is small-ish and next to a big-ish city. Sidenote: Road shows often come into Omaha and pat it on its ickle head and say “Oh, Omaha…aren’t you cute? Trying to be big! Adorable!” I am, however, pleased with how things have come together so far.
What I am daunted by is the amount of foolishness I have to pack in the next, what, five weeks. I don’t think I have enough for a garage sale and that is, in itself, an assload of work.
I? Could use some help. And some more totes, it would seem. And tape. I’m going to need tape.
What have I gotten myself into?
Now comes the hard part. The part that I hate with the white hot heat of a thousand suns. I believe I’ve mentioned it before. Moving my belongings.
Two summers ago, in between chemo treatments, Stephen and I (and Amelia since she was only 10 months old and, thusly, still nursing) went to Des Moines, two hours away. He was even feeling good enough to drive some. We got a hotel room. Wandered the mall. Ate. And ate. And ate some more.
It was our fifth anniversary. Today? Is our seventh.
Last year I was reeling. The tears came in fits and starts. Somebody, anonymously, sent me flowers. The kids were a wreck. My house was wreck. At one point in the morning I locked myself in my room and cried. And then cried some more. I sent the girls off to Robyn’s house for the day. I cleaned and took a nap. I cried alone. I blogged and told our story.
I look at that wedding photo all the time. I remember his fingertips on my chin, lifting it to meet his lips. I’d have that moment all over again, a million times over.
And then this thought creeps in: knowing what I know now, if I could go back, would I do it all over again? Really? Would I?
It’s no use trying to answer that question. It’s like asking if you should have taken a coffee break instead of cutting off your finger at the band saw. Why in the world would a person subject themselves to that kind of pain? Would anyone, knowing the outcome?
I know, I know. I have these two beautiful, funny, smart and creative little girls. They make me laugh every day. You know, when I let go from the thought that I just have so much to do. And that there’s no end. It’s like a really bad movie and you think it’s over and then it just keeps freaking going. Story. Over. Roll the credits.
There have been moments, right before I fall asleep, where I imagine what it felt like being held by him. Like leaned up against the kitchen sink, moment of sanity in the domestic chaos kind of holding. What his neck smelled like after a day at work. How he would shower at night and then come to bed, still practically dripping with his boxers sticking to his ass. And then had the nerve to try and touch! me!
So that’s what I miss. That’s what I am missing this week. The upping of the meds (a Godsend, let me just put that out there) has left any residual, um, scratch? That needed itching? Yeah, that’s gone. God bless Lexapro. Took care of that nuisance. I’m sure that next week it will be something else.
Oh, and I also miss having someone appreciate my meals. These kids are killing me. I try something truly delicious tonight and they picked at it. I suppose if I could have found a way to either bread it and fry it or turn it into a sandwich they would have gobbled it up. Or not. Whatever. It was still good. And I’ll be eating the leftovers for a week. (hint: It’s good cold too)
No tears today. No poorly handled moments. Just our usual Monday: playing, chores, Library, visiting friends. Any other day.
But I do miss him. Ella is a negotiator by nature (not sure where she got that) and I think she’s been negotiating with God. She’s been asking for just one day. One hour. Trading possessions for her dad.
I know how she feels.
Would I do it again? Knowing what I know now?
Is it bad if I can’t answer that? Definitively? With any kind of conviction? Without any what ifs?
Because I can’t. Answer.
Filed under: parenting
So, this is what it’s like to have only one kid. A five year old, at that.
Nikki took Melia for the night. Since I bagged out of going to my sister’s party, Amelia’s sleepover was canceled, much to the dismay of the little girls. Not yet three and they are already attached to each other. Or, they like to have an excuse to be naughty together. Nikki offered to take her for the night. I took that offer. Wholeheartedly.
Ella and I ate supper. With conversation. We cleaned up and went to the store. I had to get dog food and sunblock. We ended up in the board game aisle. Ella chose Connect Four. How did she know that I love that game? My brother and I used to play it on the floor of my grandma’s living room. (Green shag carpet, vacuumed every day I’m sure) Ella played with me for almost an hour. By the end, she was actually using some strategy. Very cool to see that happening.
We read books, had a snack and she went to bed. She got herself up this morning, got a juice box and turned on Noggin. If I’ve said it once, I’ve said it a million times: God bless Noggin.
So, this is what life is like with one kid. One kid who is good at taking care of her own entertainment. It is much quieter. No screeching. No pee on the bathroom floor. No uncapped markers. I kind of like it.
I kind of miss my little girl. I miss the baby dolls everywhere. Kind of.
It’s a weird feeling, only having one kid. Kind of nice feeling. And kind of “OMG, I left the baby at the store” feeling.
Filed under: Friends and Family
Well, I feel like a heel. Officially.
My baby sister has done a wonderful thing. She has gotten her master’s degree in education while teaching full time, raising my three year old nephew, running a household and driving to a town 30 miles away for class.
Oh, and she graduated with a 4.0
She is proud of herself. I am proud of her. I don’t know how she did it. She is throwing herself a party. Today. A big party with relatives and friends coming from all over. When asked what she wanted for a graduation gift she answered, “Just be there.”
I had a plan that involved leaving the littles here and hitting town by myself. That way, I could drink and cavort to my hearts content and not have to be anyone’s mother. I would not have to concern myself with naps, snacks or bedtimes. I would not have to referee the 4 foot and under set.
Well, it fell through in a grand way. I would have to take both littles (and the dog because I was just lazy enough not to call the kennel until it was too late). And it is surface of the sun hot out added with jungle like humdity. Ask me what I don’t want to do. Go ahead.
So I’m not going to do it. Make the 5 hour drive. Drink beer in the heat. Chase cranky, mosquito bitten children. Boob sweat. Not to mention the numbers of people who I don’t know who may or may not know me. But they all know *about* me. Nice.
And all she wanted was for me to be there. And I couldn’t even manage to do it.
Thusly, I feel like a heel. A cracked heel. On an unpedicured foot with unpolished toenails.
I hate this.
When I was in college, my roommate Janice and I (mostly Janice though) nannied for a family with a home close to campus. Mom was a stay at home mom and owned a pack of Bernese Mountain dogs as a hobby. Dad was an anesthesiologist (often on call) and had not a clue about what happened in his house…at least until much later. There were three kids, one in elementary, one preschooler and a toddler.
Mom was a nutcase. Dad was wishy-washy. The kids all had anxiety related problems from self hair pulling to bedwetting to slow language development.
Needless to say, Janice was the best thing that happened to that family. I didn’t nanny all that often, but it paid well when I did. I call it being a nanny because, on the weekends, it was often a 24 hour gig due to dad’s on call schedule.
I could never understand why a person would choose to have a pack of kids and then neglect them. And these kids were truly neglected while in their mother’s care. Wet diapers went unchanged. Haircuts were few. Laundry piled up everywhere. Junk food. I had always thought that when a child was neglected that it was because of an alcoholic parent or a parent who worked too much. Nope. The rich and the beautiful can neglect their children as well. Mom was often present in the house while we were on the clock. She just didn’t want to parent.
Or she was just batshit crazy. Whatever.
Why have kids if you don’t want to take care of them?
I got a piece of that this week. I’ve had a ton going on at church. It’s Bible school week again. And, in the middle of Bible school, we hosted a concert by Go Fish. It was a sweet concert and the kids had a ton of fun. Not my kids. Everyone else’s kids. I was working the show. And, my kids were wrecked by showtime so they had to go to bed. The point is that I have had no less than 20 hours of babysitting time logged this week. 20. Hours. Alone.
This afternoon, my babysitter stuck around after I got home. I made lunch for us all and she took them to the park while I did laundry, caught up on emails and generally did what I wanted to. I layed down with Amelia at nap time and took a guilt free nap knowing that Ella was entertained. And then she kept them occupied in the basement while I cleaned my filthy bathroom and started supper.
Weird, right? If I had a nanny, I’d be a different mom. So, how’s this different from a mom working outside the home and dropping her kids off at daycare and seeing them only at the end of the day? I don’t know that it is. Except that I could pretty much do whatever I wanted today with wild abandon.
So maybe, in my memory, I was awfully hard on wacko mom. I mean, she did end up abandoning her family, divorcing her husband and leaving town. Oh, and filing for custody of her kids which she was not granted. But that’s neither her nor there. I remember thinking that she was fairly worthless as a mom if she was going to be home and not be with her kids.
Maybe she just needed out. Maybe she got tired of reading “Mama, Mama Red Pajama” and “No David” for the billionth time. Maybe she didn’t want to admit that playing Candy Land bored her to tears. And maybe if she had to watch “Monster’s Inc.” one. more. time. she would lose her mind. Maybe she wanted to fold towels without having a little person come and knock them down. Or go to the grocery store and not have to get a cart shaped like a firetruck.
Who am I to judge?
Filed under: Moving beyond yesterday
Have I mentioned lately how much I love Pandora? Because I do. I get in these moods, see, and Pandora knows just what I want to listen to. Tonight, it’s Allison Krauss. Mmmm….liquid soft voice, acoustic guitar…if she came with a penis, she’d totally be my new boyfriend. Kidding. Kind of.
And then I think that she’s singing about me:
She tried to drink the pain away a little at a time/but she never could get drunk enough to get him off her mind.
She’s right…steps forward have been tiny. The drinking probably doesn’t help. Not that the vanilla vodka/Dr. Pepper cocktail cooling next to me will be anywhere but my bloodstream in the next 15 minutes. Maybe I would be further without all the beers or cocktails or whatever. We’re not talking problem drinking here…we’re talking littles in bed, blogging, Pandora/Facebook/Twitter. We’re talking Discovery Health and local news. The drinks might not help the long run but, since I am Instant Gratification Girl, they help for tonight.
Wanting what I want, when I want it, might actually be my fatal flaw. (It might be the fatal flaw of the human population but that’s pretty deep.) It is the reason that Will was born only four months after the wedding. It is the reason why I have never learned to properly balance a checkbook. It is the reason why, when I get something in my head, it is only a matter of time before it is in my hot little hands.
Things I have recently gotten into my head and, thusly, into my hands:
cupcakes, mini corn dogs (thank you Schwan’s man), a microzester thing, “The Book of Joe” by Jonathan Tropper, a brand new four bedroom house in the country.
I’m still waiting on the last piece of paperwork for the house but it will soon be mine, I can feel it.
No really, I can. I’ve been obsessed about moving home since I came back from my Opera gig in April. I found a way to do it (or, I jumped on a opportunity to make it possible) and it is almost done. You know, other than the packing and the actual moving of children and possessions.
I can’t stop thinking about what more living space will feel like. What a real yard and a finished basement are like. I will have one room dedicated to my sewing and crafting or whatever. I can put in a swingset and a clothesline. I can have a garden and a compost bin. In my new town, they weigh what you recycle and take actual dollars off your garbage bill. How cool is that? I wonder if my life will change. The underlying issues are still there for sure but I have an aunt and a cousin in the very same town. My sister and her family will be 10 short minutes away. My parents, a mere 35.
It (kind of) makes me want the summer to fly by. The first hot and humid days have hit this week and I find myself dreaming of fall and all that comes with it. But then, the girls will have had their birthdays and camping season will be over and the cold air will force us inside.
