Category Archives: For the Record

FIVE.

Five is one of those landmark birthdays where you really feel the transition between life stages happening. Where we used to have a pre-schooler, we now have a rising Kindergartener. Where we used to have a baby, now we have a kid. The last several months have been full of physical and developmental growth, and it’s been amazing to see Cooper changing and maturing right before our eyes. He is super proud to be five years old and so excited about starting school. This summer has easily been one of our most fun yet, and we’re looking forward to all that this next year holds for us!

Cooper at FIVE:

Likes: Swimming using “armies,” Legos (especially mini-figures), Disney Infinity, American Ninja Warrior, “normal” doughnuts (aka plain glazed!), Minecraft, YouTube videos, superheroes (we’re generally Team Marvel, but Batman and Superman have a strong pull for little boys!), snuggles, pillow forts, Paw Patrol, and knowing how words are spelled.

Dislikes: Being corrected in any way, holding hands in a parking lot, trying new foods.

Cooper planned his entire birthday party this year! He requested an "outside water party" with a cake he helped make for his friends. The weather was perfect and we had a blast!

Cooper planned his entire birthday party this year! He requested an “outside water party” with a cake he helped make for his friends. The weather was perfect and we had a blast!

Watching a few Lego Ninjago episodes before bed with his favorite little friends - Pi'chu, Doggie, and Hot Dog.

Watching a few Lego Ninjago episodes before bed with his favorite little friends – Pi’chu, Doggie, and Hot Dog.

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My favorite photo so far from the summer! Cooper chose to spend his actual birthday with his best friend, Hudson. The joy on their faces is so beautiful!

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Snuggled up in a pillow fort watching American Ninja Warrior!

Meeting a new "friend"! This is a relatively new expression and it's my favorite!

Meeting a new “friend”! This is a relatively new expression and it’s my favorite!

I love this photo of Cooper napping after a full day of swimming with friends. He almost never naps anymore, but he fell asleep in the car and slept for another 90 minutes after we got home! He looks so big here, but also still like my little baby snuggling his blankie!

I love this photo of Cooper napping after a full day of swimming with friends. He almost never naps anymore, but he fell asleep in the car and slept for another 90 minutes after we got home! He looks so big here, but also still like my little baby snuggling his blankie!

Brand new Skechers for Kindergarten!

Brand new Skechers for Kindergarten!

The morning of his fifth birthday. This big boy melts my heart and makes me laugh hysterically every day!

The morning of his fifth birthday. This big boy melts my heart and makes me laugh hysterically every day!

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Oh, hey there, stranger…

Bet you thought I’d given up blogging, huh? To be honest, I wasn’t sure about it myself. This year I’ve been as active as ever on social media, but, more often than not, blogging felt like more of an obligation than a true desire. If you enjoy following along on our journey, I’m sorry to have left you out in the cold for a bit. But the creative fires have been stoked again, and the urge to process and share through writing has once again bubbled up. I’m back!

You’ll notice a new name for the blog, and some rebranding is just around the corner. “The New Normal” was a great way to describe our transition into living with Type 1 Diabetes, but now that things actually do feel fairly normal, I felt like it was time for a change. HIGHS&LOWS feels right for now. And it’s a play on words, get it? Because of the blood sugar thing? You get it.

I’m planning a flashback series to document the first seven months of 2013 for posterity’s sake, but here’s the bullet point list of what’s up with the Wheelers:

* In January, we moved out of our apartment and back into the house we own in Fort Mill, SC. It has definitely felt like a homecoming and we’ve enjoyed getting settled back in. We love the space and have big plans for making it our dream house (at least for now!).

* Cooper completed his year of preschool at Ivybrook Academy, and we could not have received better care from our team of educators. They welcomed and loved us, and we just had the best experience with all of them. Cooper will not be returning this year, however, because….

* I have taken a full-time job! It’s my first one since 2007, and my first traditional office job since 2003, so it’s a pretty big deal. 🙂 I am so thankful for the time I had at home with Cooper while he was young, but a job came along that is something like a dream for me. After much prayer and discussion, Paul and I agreed it was the right time to just go for it. It is and will continue to be a big transition for all of us, but it feels right. We decided to hire a full-time nanny to be with Cooper this year before he starts Kindergarten next fall (oh my goodness! so close!!). Our friend Kelly has been babysitting for us for a while, and she and Cooper already know and love each other well. I’m now producing short films for INSP that air on the network and online.

There are lots of adventures and stories to share in the coming days. Thanks for coming along for the ride!

#T1D4aDay

One of my very best friends is Bird. She was the first person I met on Emmanuel College’s campus, and we quickly bonded over our love of Gone With the Wind and musical theater. Bird is brilliant, caring, hilarious, and has been a solid for me through thick and thin. She lives in Baltimore now, but we make it a priority to be together a few times a year (like in February for the Oscars!). 

Last week, I found out about JDRF’s “Be Type 1 For a Day” program and shared it on my Twitter and Facebook. Bird immediately volunteered to participate. Here are her thoughts after walking in Cooper’s shoes for a day. 

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I was so excited to be a part of the Type 1 for a Day experience, but I was nervous about what type of text messages I might receive and what might be happening to me throughout the day. Through my conversations with Michelle and time spent with Cooper, I’ve learned a little bit about Type 1 Diabetes. However, I spent the night before the experience researching Type 1 and browsing the resources of the JDRF. I wanted to know more about high blood sugar, low blood sugar, signs and symptoms of both, and other common things I might face throughout the day.

On the actual day, I expected that I might begin receiving text messages very early. One of the first reminded me to take my supplies with me, since preparation is a key part of managing Type 1. I had a small bag in my purse to represent my supplies.

One of the next messages I received stated that my blood sugar was higher than it should be after breakfast, and sometimes there is not an explanation. I was frustrated and couldn’t imagine trying to understand and manage my or my child’s blood sugar while sometimes having an unexplained high or low reading.

The next text message said I was hungry and wanted to eat an apple. I knew I would have to know the amount of carbs in an apple, so I used two iPhone apps to help determine that. I was overwhelmed at the options, and realized I would need to know what type of apple and what size apple. I know very little about portion control and food measurements. I couldn’t believe how much research I had to do before I could eat an apple. I also realized that I seldom think about food in terms of fuel for my body and focus more on what I want to eat.

My next text said I needed to check my blood sugar but all my fingertips are sore. It said I could use the tip of my thumb as a backup. This message broke my heart. I have seen Michelle prick Cooper’s finger many times, and each time, I have admired how quickly she does this, how little it interrupts what he is doing, and how she lets him know what she is doing but does not talk about what is happening in a way that causes him fear. I thought about the first times she and Paul had to prick his fingers, and I was overwhelmed with how hard that must have been. I also thought about the practicality of remembering which finger had been pricked last and the many details people with T1D must keep track of in a normal day.

Throughout the day, I received a few more messages – that my blood sugar was low and I should drink orange juice as a quick fix,  that I was feeling emotional because my blood sugar had been uneven throughout the day, and (finally!) that my blood sugar was exactly where it should be, but I shouldn’t celebrate by eating carbs.

Living in Baltimore, my husband and I recently prepared for Hurricane Sandy by buying non-perishable foods and making sure we had enough water. We do not own a generator, however, and when I got a text reminding me to check my insulin supply in the fridge, I thought about the people who lost power throughout the northeast. I had never really considered the challenge of needing medicine that has to be refrigerated and what a loss of power could mean for that medicine.

Today was very emotional for me, because I not only thought of the many people living with Type 1 Diabetes, with each text message, I also thought specifically about Cooper, Michelle, and Paul. I have seen firsthand how they are living with Type 1 Diabetes. I’ve seen how much they have learned over the past year and how hard Michelle and Paul have worked to help Cooper learn about diabetes in a way that is age appropriate and empowering. I’ve watched them check his blood sugar and make it look easy. I’ve watched them give him insulin with syringes and insulin with his pump. I’ve even given him insulin with his pump (after following their very specific directions!). I’ve seen Michelle try to figure out the amount of carbs in 5 and half bites of a chicken quesadilla. I’ve seen them track down how many goldfish he ate in children’s church. I’ve seen them staying up for late night blood sugar checks.

But most of all, I’ve seen them walking daily in God’s grace and teaching Cooper that diabetes may be a part of his life (until he is healed or cured), but it isn’t the only part of his life. He is full of laughter, questions, imagination, creativity, amazing dance moves, and unlimited potential. He loves cars (the toys) and Cars (the movie) and of course, Hugh Jackman. He is an excellent Facetime partner and Angry Birds champion. He is one of the many amazing people living with Type 1 Diabetes. It was an absolute privilege to have the chance to experience, even on such a small scale, a little bit of his daily life and the lives of his parents.

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Happy Halloween!

Welp. I certainly did not intend for writing on this blog to be, like, a once a month thing, but you know….life happens. And I’m thankful for that!

For the past few months, I’ve been so excited about Halloween. “Finally!” I thought. “Cooper will looks SO CUTE in a costume saying ‘trick or treat!'” When we started talking about it a few weeks ago, however, Cooper said, “I not wanna wear a costume. I just wanna wear cwose. A costume make me cwy.” I have no idea where this idea of a costume making him cry came from, but it stuck. Every single time we discussed it, he’d put his head down, and with a very serious tone of voice, respond with “a costume make me cwy.”

I had pretty much accepted that I wasn’t going to get my cute trick or treat experience, but we found ourselves in Target’s costume section last weekend, and I thought I’d give it one more go. “Do you want to be a cowboy? A race car? Buzz Lightyear? Spiderman? A monkey?” No, no, no, no, no. Cooper finally got so frustrated he said, “Mama! I NOT want to wear a costume! I wear cwose. I just be Cooper da boy!!”

Okay, message received.

So, Halloween night came and we were invited to walk around with my sister and nephew while he trick or treated. I told Cooper that since he wasn’t in costume, he couldn’t trick or treat, but it could be his job to wish everyone Happy Halloween at the end of the interaction. He was perfectly satisfied with this and took his job seriously.

As we walked from door to door, I noticed a really disturbing trend. Cooper and Gabe would knock, Gabe would say trick or treat, open his bag, and receive candy, then the adult would say, “What about the little one?” From the sidewalk or driveway, I’d say, “No thanks, we’re just getting candy for the older one. Thank you, though!” And the adult would say, “Are you sure?” Me, “Yes, we’re fine, thank you!” The adult, TO COOPER: “Don’t you want some too?”

Well, obviously. Yes, he does.

What was I supposed to do? Yell out, “PLEASE STOP BEING SO DISRESPECTFUL I’M HIS MOM HE HAS DIABETES AND IS NOT WEARING A COSTUME SO NO THANKS HAPPY HALLOWEEN!” I mean. I wasn’t trying to ruin their Halloween or anything, but even more than the diabetes, Cooper chose not to wear a costume, which was totally fine, but, to me, excluded him from trick or treating. I could not believe these parents who would just completely disregard what another parent said. And it happened at almost every house. So. Frustrating.

All in all, though, we had a great time. The weather was perfect – crisp and clear. Chilly, but not too cold. We saw some cute costumes and had a fun time just taking a walk as a family. Below, see Hawkeye and Cooper da Boy. 🙂

It’s been a year…

In a few minutes, Cooper will wake from his afternoon nap, I’ll go in and turn on the light, and we’ll chat for a few minutes before he says “I want to get out, mama.” Maybe we’ll play a game or sing a song. Maybe he’ll jump up and down and crash into the oversized Angry Birds in his crib. Either way, he’ll be happy to see me and raring to go after a nice long sleep.

Exactly one year ago today, I walked into his room after his nap and he was too weak to push himself into a sitting position to greet me. I burst into tears, we loaded into the van, were instructed by our doctor to go straight to the hospital, and at around 5:30 p.m. on September 10, 2011, we were told “with 98% certainty” that Cooper had Type 1 Diabetes.

It’s been a year.

We have a new vocabulary. I didn’t know the words islet cells or cannula or bolus a year ago.

We live an endless cycle of check blood sugar, eat, give insulin. It is so ingrained that sometimes when I finish eating alone, a few minutes pass, and I think, “oh! I haven’t bolused yet.” Then I remember I don’t have to bolus myself. It’s funny, but not in a funny-haha way, you know?

We have weathered a storm. I feel like a house that’s gone through a hurricane and been beaten with 100 mph winds for a few hours. The wind eventually subsides, the storm passes, but it takes a while for the house to return to “normal.” The storm has passed. We are as adjusted as we’ll ever be, but we still aren’t quite what we were before. In many ways, we’re stronger. Now we know storms don’t knock us down. But we’re still fragile. Still not quite on firm footing. We’re getting there. A friend recently asked us what our best and worst years of marriage have been. When answering about the best year, we made some jokes about them all being pretty mediocre (har har har), but answered almost in unison which had been the worst. “This last one.” Not that our marriage has suffered, though it ebbs and flows as we do, but this year has been hard. Harder than anything we’ve ever done before.

It’s been a year.

The first year is the hardest. It’s what they say about marriage, about babies. And I’m hoping about diabetes. Tomorrow we move out of being newcomers to this disease. We will have had it for “more than a year.” Things have steadily gotten easier. And our capacity to deal emotionally and logistically with the disease has increased so that the things that AREN’T actually easier seem that way. The past twelve months have been a blur, but we made it. We made it.

It’s been a year.

Thankful…

Tonight I did something I have never done before. I got paid to share my opinion. Normally, I do that for free! (*rimshot*)

I participated in a focus group for parents of kids with Type 1 Diabetes. Having never been part of research completed in this way, I was excited, but had no real expectations. Based on what I’ve seen on TV, I assumed I’d be in a room with five to ten other people, we’d be sitting around a large table with a moderator holding court, and there’d be a two-sided mirror along one wall. I was almost right. The table, the moderator, and the mirror were all there, but it was just me and one other person in the “group.”

We shared about our experiences with diagnosis, day-to-day management, and then opined on some products that are either currently on the market or in development for diabetics. Obviously, Cooper is one of my favorite topics of conversation and diabetes is a HUGE part of lives now, so participating in the conversation was easy and enjoyable.

Except for one thing…

The other parent was a mom with three children. Her middle child, a boy, is six years old, and was diagnosed when he was four. They were on injections for about six months before switching to a pump (the same one we’ll be using for Cooper). She spoke very intelligently about the disease and the management of it (as I presume any parent of a diabetic child would), but there was such a strong undercurrent of anger and bitterness to her words. Everything she said – whether she was talking about inserting pump sites or difficulties in enrolling her child in her church’s VBS – was laced with such deep hurt that it absolutely broke my heart. Our session lasted for an hour, and I was fine the whole time and truly did enjoy participating. But when I got in my car, I fell apart.

I completely understand the anger and confusion and hurt that goes along with this diagnosis. I feel those emotions to varying degrees every day. Every two or three nights, I still mutter under my breath, “I just can’t believe we have to do this,” when I’m preparing the glucometer for Cooper’s 11 p.m. blood sugar check. There are times when I stick the syringe in the wrong spot on his arm and a pinprick of blood rises to the surface of his skin, and I think, “I just made my child bleed. That freakin’ sucks and I hate that I have to do this.” There was a night a few months ago when I had to give Cooper a shot in the middle of the night and he totally freaked out (I mean…who wouldn’t?), and I was overwhelmed with sadness that this is our life, but more importantly, this is HIS life, and it’s something he will deal with forever (until he’s healed or there’s a cure).

But in the big picture, overall, we manage our emotions very well. And it’s not just a show. Cooper having diabetes is upsetting, but we don’t live upset. It is challenging, it is frustrating, it is consuming, but we rise to the challenge, we overcome the frustration, and we have truly taken it on as our new normal. Of course, we want Cooper to grow up educated about his disease with a sense of responsibility about the differences between him and non-diabetics. But the MOST important thing to me is his attitude about it. I don’t want him to be angry or bitter about diabetes. FEEL those things, sure, that’s normal, but don’t BE those things.

If I had to boil my theology and philosophy on life down to its bare bones, it would be these two things. Love wins, both in the moment and in the end, and rain falls on the just and the unjust. In other words, good stuff happens to bad people, bad stuff happens to good people, but love is always the answer.

I have not asked God “why” Cooper has diabetes. I ask Him almost daily to show us what we can do for the kingdom now that it’s here.

I don’t believe God “gave” Cooper diabetes. I ask Him to give Cooper a purpose and a destiny so that it can be used for God’s glory.

These are the core beliefs that help us manage our emotions and keep us sane. As I was driving home from the focus group tonight, I prayed so intensely for this mother who feels alone and angry, that she would release that anger and find a place of peace in the midst of some really crappy circumstances. I prayed for her son, that he would not grow up with that bitterness towards his situation, but accept it as his normal life and find a way to use it for good.

We’ve had diabetes for 10 months now. And I never thought “thankful” would be one of the emotions I associated with our diagnosis. But I am SO thankful…

…for a husband who has learned everything I’ve learned and can do everything I can do.

…for a community of family and friends who have supported us in physical and emotional ways.

…for a church community that has not looked down on Cooper or turned him away from any activities because of diabetes.

…for a diagnosis early in Cooper’s life so he won’t fight memories of a pre-diabetic lifestyle.

…for my sweet boy who has taken all of this in stride and just today said “I want to wear the insulin pump RIGHT NOW.”

Diabetes sucks. There’s no way around it. It is rain that falls on us every day, sometimes in a light shower and sometimes in a downpour. But it’s just rain. We won’t melt.

I am more thankful than I could ever say that we have the protection of those things listed above, and pray that this precious mother I met tonight finds an umbrella of her own to make it through this storm.

“I remember…”

It’s been seven months since we received our Type 1 Diabetes diagnosis. Those first few days were such a blur, but there are moments that we will never forget. Once we were released from the hospital, our first stop was the pharmacy to pick up the supplies and medicine we would need at home. I had been crying off and on for three days (mostly in conversations with our doctor…embarrassing, much?!) and gave myself a stern talking-to before I went in the store. “You can keep it together. You can talk about this as if it’s normal. It’s a part of life now, just go in and answer their questions.” This would be the first conversation I had with someone about Cooper’s diagnosis outside of the hospital. I took a deep breath and walked in.

I handed the pharmacy assistant our prescription. She asked me to confirm the name and date of birth. When she heard 2009, her head popped up and she said, “He’s so young!” She was very innocently expressing surprise and making an observation, but that was it for me. My eyes filled and spilled over and I started apologizing, then SHE started apologizing. It was actually a funny moment, both of us apologizing all over each other. “I’m sorry, I’m sorry, let’s move on, I didn’t mean to upset you, I shouldn’t have said anything!” “No, I’m sorry, I’m fine, it’s just new, he’s fine, I’m fine, you’re fine.” Ridiculous.

The pharmacist came over to ask if everything was okay, and I could tell the assistant thought she had done something wrong. I tried to explain the situation and assure the pharmacist that the assistant had not crossed any boundaries. It was comforting in some way that someone else found it as shocking as we did. We got back to business and got the prescription set up. They wished us well and I walked out, wondering if I’d ever make it through this conversation without dissolving into tears.

About every six weeks we order new supplies from the pharmacy. Every time I speak to the pharmacist, he says what’s the patient’s name and date of birth. I say Wheeler and the DOB and he says, “Oh yeah, Cooper, I remember.” Every. Single. Time.

I always order over the phone and pick up in the drive-thru, so I hadn’t physically been back in the pharmacy since that fateful day. Our health benefits changed recently and I needed to take our new prescription cards in to add to our file. So when I ordered supplies this time, I felt like it would be easier to go in and set up all the new stuff rather than trying to do it from the van. I took Cooper in with me.

While I was talking to a different assistant, getting everything in order, the pharmacist overheard our name and came out to say hello. Cooper was playing in the waiting area with some cars (of course). The pharmacist said “Is this him? Is this Cooper?” I said yes, and he came out from behind the desk to greet Cooper properly. Coops gave him a high five and they talked about his cars for a few minutes. The pharmacist stood up and said to me, “He looks like a healthy, happy boy. I will never forget the day you came in. I’ll never forget it.  It’s good to see him this way.”

What are these people trying to do to me?! It was one of the sweetest things anyone has ever said. Here is a person I have not seen in seven months, whom I’ve spoken to maybe four or five times in that span, but who remembers us and our story. And not only that, he’s happy for us – people he doesn’t even know! – that we are healthy and prospering. It was a really beautiful moment.

The next Sunday, I heard Pastor Nick Park speak about being a storyteller. He talked about how Jesus was a storyteller, always using parables to teach people about the kingdom. Pastor Park said everyone has been given a story and what a disappointment it would be if those stories were never shared.

We know that Cooper’s diagnosis is now a huge part of our story. Who knows what the future holds? Will it be a story of miraculous healing? A story of encouragement to those living with less-than-perfect circumstances? We don’t know yet. But we know that we have not been given this story by accident.

It means so much that someone as random as our pharmacist remembers our story and that someone like you, dear reader, chooses to follow it. Thank you for sticking with us. Thank you for remembering us.