Race for the Cure

Every year, we run in the Race for the Cure. When we started this tradition as newlyweds, the only members of our family that had been diagnosed with breast cancer were my grandma and Chris' grandma. Since then, Chris' mom and sister in law have both battled (and won) against breast cancer, so the race has taken on new meaning for us.

I have to say I am kicking myself for not bringing the camera to the race, but it's entirely my fault that we were rushing out the door that morning. So I went on the RFTC website to get a generic picture of the race. They don't yet have pictures up for this year, but I found one from last year that was priceless.

That's Chris pushing Jane and Emily beating out dozens of hardcore runners. I can't remember his time last year, but this year he pushed the girls again and finished in 25 minutes even, pushing 61 pounds of kid. The best thing I can say about my run is that I finished less than 10 minutes later. It wasn't much less, but it was undisputedly less. 

The kids love running with daddy and Chris loves passing people with the double wide stroller. I love not running with the kids. Everybody wins. 

My parents came up for the race this year, which was a treat. My dad cheered us on and my mom ran in memory of her dear friend, Kathy, who lost her battle with breast cancer last year. 

I hope to see a cure in my lifetime, but for now, it gives me a great feeling to know that we are doing our small part in the fight against breast cancer. 

Sisters

This past week we have been an incomplete family. We have been missing the most vocal member of our cast. Emily has been to visit her grandparents this week and I have never seen a kid as lonely as Jane. While it makes me sad to see Jane missing her sister so much, I am glad they are such good friends.

When Jane was born, everyone told me to get ready for the backlash from Emily. I heard horrific tales of regression, sibling rivalry, fighting, fighting and more fighting. I was surprised when the kids started interacting so differently from what I had expected. Thus far, they have been the best of friends. Of course, we have the occasional argument over a toy, but for the most part Emily and Jane have been the finest partners in crime our generation has seen.

(Here they are trying to fax something. They actually got a sheet saying the number was busy. Don't worry, it's not hooked up to a phone line)

This week I have been missing the sound of them laughing as they fall over each other. I have missed Emily sneaking food from the fridge not just for her own gain, but for Jane's as well. I have missed them yelling "hide, hide, hide!" when they have done something wrong and they know I am about to find out. I have missed them dressing up as princesses and twirling in the living room to the Clavinova's demo songs. I have missed Emily giving lectures on every topic while Jane does her best to ignore her.

Chris and I are looking forward to Emily's return tomorrow, but I think the most joy will come from a little blond girl who will finally be reunited with her partner in crime.

The Not So Triumphant Return

Last week we finally made our return to the Children's Garden. The plants and flowers that had been seedlings in June were big and beautiful and bursting with color. It was the same wonderful place. But it wasn't as much fun. While we were there, I was my children's warden rather than their mother. Wherever Jane went, Emily had to go. I kept both kids within arm's reach the entire time we were there. It wasn't fun.

We did the same old things - made sand butterflies, played on the wobbly raft and had a puppet show. It didn't feel the same. Neither do any of the places we love. Having two kids on the extreme end of the activity and mischief spectrum and only one of me has been frustrating to say the least. Everywhere I go, I notice moms sitting, chatting and watching their kids play. I long to sit. I long to chat. If only for a moment. I almost never do. It would increase my reaction time to unacceptable levels. I feel like when we go out, it's one long round of crisis prevention with the occasional crisis recovery. By the end of a day out with the kids I feel beat up.

The worst part is that no matter how hard I work to keep my kids happy and safe, they sometimes get away from me. And when they do, the criticism starts. Criticism from other moms, from people without kids who think they have any clue what they're talking about, and criticism from people whose children are grown.

Worst of all is the criticism from myself. Every time my kids get out of my sight, I beat myself up for days. When they don't get out of my sight, I am constantly criticizing myself for being too overbearing and for yelling too much. All I know is that I am one cranky mom.

I wish we could go to the Children's Garden and once again have an enjoyable day. But for now, that's something that will have to wait. Perhaps until I am a grandma.

The Idiot Plot

The idiot plot is a storyline in a move where the audience is saying, "C'mon, you  idiot, the bomb is in the car", or, "she is just marrying him because she thinks you don't love her", or, "if you pick up the phone, the car warranty salesman will know you're home". Last week, I had my own idiot plot.

Lest the haze should fall over my days as a young mother leading me to think I was perfect, I have to record this incident. When my girls are mothers and they make a mistake, maybe they won't feel as bad.

Last week I started to get a sore throat. I thought it was just allergies. Then it got worse. I thought I'd take a peek in the mirror and I noticed two large bumps at the very very back of my mouth where one of my tonsils would be if I had tonsils. I dismissed them as super bad canker sores and went about with my life. After all, I don't have tonsils. And I didn't have time to be sick. Chris was super busy at work and we were getting ready to leave town and we had promised the girls we would participate in a few CFD events.

Fast forward several days. After much misery and crankiness on my part, my "canker sores" have finally healed and I can once again swallow without pain. But now Jane starts to get cranky. Three days later, I know something has to be wrong. This is as bad as colic (and I know colic like nobody's business). She's screaming all day. So last night, as the screaming hit its peak, Chris volunteered to take Jane to Healthreach. By now, anyone reading is thinking, "C'mon, you idiot, Jane has strep throat and you gave it to her!"

Tomorrow she'll be better, noncontagious and ready to conquer the world again. But I gave this sweet innocent kid four days of misery because I was too busy to be sick.

Jane, I owe you one.

No Such Thing as a Free Lunch

We are blessed with very good neighbors. To our right we have a wonderful lady who doesn't mind it when my kids chase (but never catch) her cats. To our left we have a family that has two girls, the youngest of which is four years older than Emily. They are kind enough to give us first pick of the toys and books that their girls have outgrown. A couple weeks ago, they were in spring cleaning mode and we were the recipients of a huge stack of books, a leap pad, and a Tinkerbell chair. Emily loved the chair. She sat in it every free moment for three days. Jane loved the chair. She and Emily fought nonstop over it during playtime.

But during this time, Emily's allergies started acting up. When people ask me what Emily is allergic to, I think of the show "Fraser" when Niles is asked the same question. He says something like, "It may be easier if we started with a list of things I'm not allergic to". So it is with Emily. When her eyes are red and teary, her nose is running and her skin looks like a burn victim's, it sometimes takes us a few days to figure out what the exact culprit is. If only I would have remembered the neighbor's dogs, I would have figured it out sooner. Instead she suffered for days, her allergy medicines hardly putting a dent in her reaction. It took me three days to realize it was the chair. The chair was thrown out in the middle of the night so the neighbors didn't know we had rejected their thoughtful gift.

We've already established that I'm a lousy parent, but I think in this case I was justified in ordering two new Tinkerbell chairs - one for Emily and another for Jane. I have had to tell Emily no so many times because of her allergies. It was nice to be able to make it up to her if only a little.

The chairs arrived today. We've already had several fights over which chair belongs to whom, we've had fits over the chairs tipping and an enormous fight over who has rights to the box the chairs came in. But there have been no allergic reactions. Hallelujah!

I don't think I'll be accepting any free hand-me-downs in the near future. I'm not sure we can afford it.

Where Everbody Knows My Name

Remember the show Cheers? It was a memorable show with an even more memorable theme song: "Sometimes you wanna go where everybody knows your name". Up until 19 months ago, I thought it would be great to go where everybody knows my name. But now that everybody knows me, or more specifically my family everywhere I go, it's not as fun as I thought it would be. Maybe it's because very few of the people who know us by sight actually know our names. Sometimes I think about how nice it would be to go back to anonymity and have an uneventful outing with my kids. I know isn't possible.

For the rest of her life Jane will be the girl (and later the woman) with one hand. Most of the people who recognize her will refer to her only as that. No matter how much I try to change it. But I still try. And so one of my attempts will be to help my family and friends know how to react when they see someone with a disability.

• Don't stare. At first it may be tempting to try to figure out what is going on, but no matter how covertly people try to be about staring, I still see them. 

• Don't open a conversation with a stranger by asking about their disability. You'd be surprised at how many people come up to me and, without introducing themselves or getting an introduction from me, make free to ask about Jane's medical history. In children this is understandable. In adults it is unacceptable. I admit that if I were to see someone with a condition similar to Jane's I would want to talk to them. It's a rare condition and I would love to meet someone else who lives with it. But I would begin the conversation by introducing myself, not by asking about their arm. When your child does ask, don't be embarrassed. It will teach them to be embarrassed. Here are some questions that children have asked me (after reading these I hope you will realize a well asked question is not reason for embarrassment):

1.  What's wrong with her arm? (this one is very common)
2. Where's her hand?
3. Does it hurt?
4. Why does she have a plastic hand?
5. When she grows up will she have a real hand?
6. The reactions from children that aren't questions: staring, flinching, running away in horror (you may spank them for this with my blessing), grabbing her little arm and feeling it (In very small children this is okay. A ten year old should know better). 

• If your children point and stare (which they often do) don't give them a lecture in public. It embarrasses the person with a disability (and their mom) more than if you were to go up, introduce yourself, let the child ask a question and get to know someone who is different from them. Lecturing them and trying to hush them up only teaches them that a disability is a bad thing, or something to be embarrassed of. 
• Never make an assumption about what a person with a disability can't do. I admit the basis for this post was an incident in which we were at the library and one of the librarians overreacted to Jane being near the stairs because she assumed Jane couldn't negotiate the stairs with her disability. She was wrong. I have all but stopped carrying Jane up and down stairs. When in doubt, follow the lead of the person with the disability or (in Jane's case) their parent. You may be pleasantly surprised. So far, I haven't discovered anything that Jane isn't able to do in the realm of normal toddlerhood. That includes climbing EVERYTHING.
• Educate your child in advance about people that are different from them. We have found Nemo to be a wonderful teaching tool. I tell small children that Jane has a lucky arm just like Nemo has a lucky fin. Sesame Street often has guests that look or sound different. When they come on, use the opportunity to discuss the differences and similarities with your children. They will find that the similarities a disabled person shares with them far outweigh the differences.
• Most importantly: Never, never, never assume that a person with a physical disability also has a mental disability. With Jane, as with most people with disabilities, what you see is what you get. She is a perfectly normal toddler with one hand. 

 

Thanks for reading this self indulgent post. I promise next time I'll have another great story about Emily's criminal acts or something embarrassing I have said or done. But in the meantime, I hope this helps someone to see past a disability and to see a person.

A Summery Summary

Around here, summer is short. So we have to make use of every second. Emily has been around for a few summers and by now she realizes that it won't stick around forever. To her, a warm day not spent running through the sprinklers, playing at the park or sneaking off to the wading pool at the Children's Garden is a wasted day. I'm glad I have her to remind me to seize the summer.

Jane doesn't yet realize that the summer's a-wastin' and thus is more cautious.

 

To Emily, the pinnacle of the summer is the 4th of July. A holiday made for setting stuff on fire.

If you listen carefully you can hear Jane crying in the background. She had to be removed from the area after the snappers scared her nearly to death.

As the evening wore on, Jane plucked up her courage and was able, with the aid of her trusty blanket, to approach Emily as she brandished a sparkler.

(Don't worry, mom, I washed the blanket already and it's as good as new). By the time we were on to snakes, Jane realized the fourth of July wasn't so bad.

Both girls enjoyed the city fireworks to excess. It's a lot of excitement for one day, but we still have a whole lot of summer left to enjoy. Plenty of days for Emily to get wet and find bugs and scrape up her knees and ride her trike on the sidewalk. And plenty of days for Jane to enjoy her favorite part of summer:

Even if I had the heart to tell her corn on the cob is a seasonal treat, she wouldn't understand. All she knows is that for now, life is just about as good as it gets.