Tag Archives: Emmy

A Research Opportunity

A couple of weeks ago, Lily and Emmy were able to volunteer for a research project. This research, through Rush University Medical Center, is to help fight a rare neurological disease called Niemann-Pick Type C. Lily and Emmy were part of a control group of normal, healthy children. The researchers attached sensors to several places on the girls’ bodies to measure their gait and movements. By measuring how a typical child moves, they hope to see how an experimental drug for Nieman-Pick disease is working with children who have this rare disease. The researcher that worked with us told me that there is a lot of information about how a typical adult moves, but there is not as much information about the movements of children.

Emmy research
Emmy has sensors around her feet, wrists, waist and shoulders.

By measuring how much typical children sway as they walk, how fast they walk, how much they move when standing still and other information, will help researchers to know what is normal movement for children of different ages. This information will be compared to the movements of children with Niemann-Pick C disease.

Specifically, we hope this research will help Hayley, a young girl who lives in our area. She was diagnosed with Niemann-Pick when she was 11. We don’t know Hayley personally, but we learned more about her condition in an article featuring her in the Chicago Tribune.

Hayley has a rare genetic disorder called Niemann-Pick Disease Type C, often dubbed childhood Alzheimer’s because its symptoms are similar to those of adult dementia, though it’s not the same disease. Memory, speech and mobility fade. It gets harder to eat and drink unaided. There is no treatment approved by the Food and Drug Administration, and young children with the disorder typically don’t live past their teens. Chicago Tribune, February 8, 2016 Read more here.

Lily research
Lily standing still, with the sensors measuring how much she sways while she stands.

During the weekend of research (which was hosted by our church), information was collected from 40 children! It was such an easy thing for these kids to give up some of their time to help others. Not only that, but I think the kids had fun participating in scientific research. It was a great experience, and I hope it will be beneficial to Hayley and other children with Niemann-Pick Type C.

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Rollerblading

When I was a kid, rollerblading didn’t even exist. There was roller skating, and ice skating. If it hadn’t been for birthday parties at the roller rink in Paxton, Illinois, maybe I  never would have learned to roller skate. My first couples skate was holding hands with a boy named Quentin when we were literally 12 years old. Then we moved to the ‘burbs, and I went roller skating with my youth group. We skated to Michael Jackson’s “Thriller” and Axel F. from Beverly Hills Cop back in the 80’s.

Then in the 1990s, the rollerblading craze hit, and I jumped right in. I bought my own pair of rollerblades. Skating on rollerblades was deceptively harder than roller skating, this balancing on a row of wheels, but I was soon rollerblading along the blacktop paths of DeKalb, Illinois. As long as there weren’t any hills, I was okay.

roller blades

As with most athletic activities, such as biking and skiing, rollerblading went by the wayside when I became pregnant for the first time. It wasn’t until Lily was in Kindergarten when the rollerblades came out of retirement. Every year, her school has a rollerskating party, and we love to go when we can. Sometimes I see some of my students skating with their older siblings, and they get a kick out of seeing their preschool teacher on skates!

This past year, the girls enjoyed the rollerskating party so much that I took them to the roller rink for open skate on President’s Day. Lily has her own pair of roller blades, and I rented a pair for Emmy. The rink was less crowded than it is when the school goes, and we had a lot of fun skating together. I loved seeing the moms who were encouraging their kids to skate. Some watched from the sidelines, some were learning to skate themselves, and some were obviously pros. I’m definitely wobblier than I used to be, but I feel pretty good getting out there and skating even though I’m definitely a middle-aged mom. Lily and Emmy loved skating to Taylor Swift’s “Shake It Off” and of course, “Uptown Funk.”

roller blading

Since our weather seems to be very fickle this year, I think we’ll have to go skating again soon!

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Motherhood After Breast Cancer: Pregnancy

Tonight as we were chowing down on burgers and shakes at the Choo Choo (our favorite birthday restaurant), Lily asked me to tell the story about the day that she was born.

My due date was November 20th, although when I first had gotten pregnant, I calculated my due date to be Nov. 10th. When I woke up on Nov. 5 (I always say my due date was more accurate than the one my doctor gave me) I started to feel cramps. I called my mom, Ed at work, and my doctor’s office in that order. Since I already had a doctor’s appointment at 11:00, the nurse told me I could wait until then to come in. I had told Ed to come home from work so he could drive me to the doctor’s office. It was a beautiful fall morning, and Ed spent the time waiting to rake the leaves into the street for the leaf truck. I usually went to doctor’s appointments by myself, but this time, I didn’t go home after my appointment. The doctor told me I was going to have a baby that day!

I’ve always thought of both of my daughters as little miracles from God. I wasn’t sure I’d be able to get pregnant and have children after undergoing chemotherapy and taking Tamoxifen at such a young age. Many young women are pushed into menopause or become infertile due to cancer treatments. Before Ed and I got married, we talked about the possibility of adoption if we weren’t able to have children.

So it was unbelievable to me when it took only about three or four months for me to become pregnant with both Lily and Emmy. I was also quite fortunate to have healthy and happy pregnancies. Being pregnant was a wonderful experience for me, and the morning sickness I felt was nothing compared to the sickness of chemotherapy. My hair grew thicker instead of falling out and I was gaining weight due to a healthy baby growing inside of me. Ed and I felt truly blessed.

As we watch both our girls growing before our eyes, and celebrated Lily’s 11th birthday today, we still feel extremely blessed to be the parents of our miracle babies. Because as you know, our girls will always be our babies even as we celebrate birthdays and watch our little girls grow up.

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Discovered in a Drawer

wig

I really don’t know why I keep this thing; this mop of hair that insurance paid for and that I hated from the moment I put it on my head. I wanted a fun blond wig, but the hairdresser thought I should match my natural, mousy color. I thought it would be fun to have a shoulder length bob, but my mom thought I should match my current short hairstyle. So I ended up with a wig that wasn’t really my choice. When I started running my fingers through my hair and it drifted through my fingers, falling to the ground, I began to wear hats. My favorite was a baseball cap I bought at Princeton when I visited my sister there.

Princeton hat
After my first chemo treatment, summer of ’96

While I was teaching, I wore dressier hats. But I never wore my wig, and I never took my hat off while I was teaching second grade. My students knew why I was wearing hats, and as 7 and 8 year olds, they accepted it easily and without many questions. To them, my hat was a part of me. I, however, dreamed of a time when hair would once again brush my cheeks as I leaned forward; to a time when I could run my fingers through my hair again.

breast cancer hat
A picture drawn by a student

The chemo nurses told me about wig burning parties some of their patients had had when their hair started to grow again. I really didn’t feel like burning a wig I never wore. It would have been a useless gesture. (I was also never going to burn my beloved Princeton cap!) And so the wig was thrown up on a closet shelf, moved around a few times, and came with me to a couple of apartments before my husband and I bought a house. In the back of my mind, I kept the wig in case I needed it again. But if I hadn’t worn it the first time, would I really wear it a second time? My wig finally ended up in my top dresser drawer among spare shoelaces and fuzzy sock-slippers, buried away and forgotten.

straw hat
On a field trip with my students

Forgotten, that is, until Emmy rediscovered my wig. As any eight year old would do, Emmy tried it on for size and then kept it on. She began walking around the house saying in a deep voice, “I’m Mommy!” She even wore it outside when she was playing with the neighbors.

My expensive wig, reduced to a plaything. Am I okay with that? Yes, I am. After 19 years, I’m pretty sure I won’t need it again. If I ever do lose my hair to chemo, I’m getting a wig that I choose. Maybe it’ll even be pink.

Maybe it'll even be pink.
Maybe it’ll even be pink.

I started this post last week for the prompt “discovery,” but I didn’t finish it in time. Since October is also Breast Cancer Awareness Month, I’m using this as my fall post. Link up your Fall post below, and be sure to visit our other Spinners!



Spin Cycle at Second Blooming
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Parks and Recreation {Spin Cycle}

We never call a park by its real name. We use the equipment on the playground for identification. For example, we go to the “boat park,” the “flying saucer park,” or the “roller slide park.” The playground down the street from us is “our park” and the playground at the school is “the red park” because all of the monkey bars, slides and swings are the color red.

When I became a stay-at-home mom with Lily, I couldn’t wait to take her to the park. I needed activities to fill my days, besides the normal routines of changing diapers and endless laundry. I started reading to Lily when she was only three months old, and as soon as the weather started to warm up, I took my November baby to the park. I placed Lily into the baby swing and gently pushed her back and forth. Lily would look up at the sky, point, and say “Appy!” which of course meant “airplane.”

Traveling with kids takes on a whole different perspective. We could be at the most interesting tourist spot ever, but if the kids spot a playground, they’re begging us to go play!

playground car
Lily and Ed at a playground in Iowa
playground swing
Emmy on a moose swing in Fairbanks, AK

The weather doesn’t matter at all. We go to our park when it’s hot, when it’s cold, and even when it’s snowy. At the playground, my daughters magically get along.

playground swing
At our park on a mild November day

And so far, it hasn’t mattered how old my daughters are. At the ages of six and nine, they still want to go to the park to play! Now they prefer the monkey bars to the swings, however.

Do you ever visit a park in your neighborhood? Join Gretchen and me for the Spin Cycle this week and link up your Parks and Recreation blog post!


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