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We all have hard things. Maybe it’s a diagnosis, like type 1 diabetes, or celiac, or cancer. Maybe it’s a difficult family situation. Maybe you’re in a season of financial stress. Maybe you’ve lost someone and you don’t know how to keep going without them. Maybe you’re lonely, sad, exhausted, frustrated. Maybe, right in this particular moment, your hard thing is the milk spilled all over the floor, or the mountain of laundry you can’t find time to get to, or the children that don’t seem to ever stop fussing. We all have hard things.
In fact, the Bible is very clear about this. “In this world you will have trouble.” (John 16:33) You WILL. It doesn’t say that you MIGHT have trouble. You will.
So what do we do with that trouble? I’ll tell you what I tend to do. My first reaction to trouble/hardship/stress/suffering is this: complain, worry, allow my situation to overwhelm me. But for nearly four and a half years now, I have watched my young daughter do hard things, really hard things, all day every day. She doesn’t have a choice. Her hard thing is type 1 diabetes, and she has to do it; it’s a life and death situation if she doesn’t. But while she never had a choice in whether or not she wanted to live with a chronic illness, she does have a choice in how she reacts to this very hard thing. She can choose to be sad and overwhelmed and angry all the time. Or she can choose to rise above the hard thing and choose joy instead.
Choosing joy does NOT mean that we are ignoring the fact that things are hard. No. Loss is hard. Financial stress is hard. Broken family relationships are hard. Type 1 diabetes is hard. But choosing joy DOES mean that we will choose to rise above, choose to find the good, choose have faith in a bigger story.
Mackenna is strong, brave, resilient. I watch her poke her fingers all throughout every day. I see her body tense up in anticipation of the pain right before we insert a new pump or sensor site. I see the frustration when she knows she needs to stop playing to check her blood sugar. These are hard things for a kiddo to deal with day in and day out. It’s a lot of responsibility, too much responsibility. And I have to say that almost all the time she does these things without complaining or grumbling. Almost. There are times when it’s too much for her and it just isn’t fair and she doesn’t want to do it anymore. Sometimes she feels the hard more. Sometimes the hard breaks her a little bit and she gets angry. Sometimes she cries. But once she’s done feeling the weight of it in that moment, I can see her choosing joy instead. She’ll take a deep breath. She’ll calm her voice. And she’ll do what she needs to do. It’s incredibly inspiring to do life with someone who’s been handed more hard things in her 9 years than I have been handed in all of my 37, and to see her choose joy day in and day out when it would be so easy not to.
“Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)
Every year we participate in the JDRF One Walk, and raise money to help fund a cure for type 1 diabetes. Over the past four years our team, Mackenna’s Joy, has raised over $30,000! This year we are trying a new fundraiser. We designed a t-shirt with a message that Mackenna lives out on a daily basis: choose joy! All (100%) of the proceeds from these shirts will go to our fundraising effort for the 2018 JDRF One Walk. We’d be so honored if you would join us in choosing joy…wear it to inspire others, wear it on your hardest days, gift it to someone who embodies its message. Click on the link for ordering information (deadline is December 4th)!
www.etsy.com/shop/thejoybeforeme
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Yesterday, I read a question posted online by a mother of a newly diagnosed child. This was their family’s first Halloween with type 1 diabetes and she was looking for suggestions on how to manage the holiday. I remember our first Halloween, and our first Thanksgiving and Christmas and Valentines Day and birthday party…all those firsts, after diagnosis. I remember them all. I remember wondering, just like this mother, how do we even do this? Food is such a big part of our holidays and celebrations. And we are now required to count, measure, assess every morsel our kiddos want to eat….and then consider how much activity they’re doing, because while food and sugar bring blood sugar up, activity and excitement bring it down.
How do we manage Halloween, as parents of children with type 1 diabetes? Simply put, we manage Halloween like we manage every other day of the year. We check blood sugar often. We read labels and count carbs. We dose insulin as accurately as we can. We monitor activity and make adjustments. No different on October 31st than on November 1st.
But I think I understand what might be behind that sweet mother’s question. For me, Halloween is a reminder of the hand that’s been dealt to my little girl. A reminder that her life is more complicated than most of her friends’. A reminder that while most of my friends casually headed out to trick-or-treat in their neighborhoods last night, I cannot casually head out anywhere. I have to think ahead, prepare for any type of blood sugar scenario and bring what we need to take care of whatever situation may come up. And while other moms strolled the streets with their little characters last night, glancing at their phones to check the time, I had my eyes on my phone watching my little character’s glucose levels. Is the walking making her blood sugar drop? Should I have given her one more tootsie roll? Maybe I should have covered that last piece of candy with insulin. You see, we can do Halloween just like we used to, it’s just more complicated. On these special kinds of days, I seem to be just a little more aware of the impact T1D has on our family. If you saw us trick-or-treating last night, you weren’t aware of all the things that were going on in our minds concerning our little warrior. And my hope is that our little warrior was able to enjoy her Halloween with not much thought about her blood sugar; that she was able to escape into the fun and allow me to monitor things for her. But I’m always aware. Always. So while that mother asked the question, “How do we do Halloween?” I think maybe underneath her question, she might have been really aware (again) of how the type 1 diabetes diagnosis has complicated life for her kiddo.
So to all the moms and dads who took type 1 diabetes trick-or-treating for the first time last night, you did it! It might have been smooth sailing and it might have been a bit rocky. But you did it. You said “yes” to normal life and a fun experience, despite T1D. You helped your child enjoy a fun tradition, and maybe even let them forget about the complicated T1D life for a while. Yes, it’s a reminder of how T1D has complicated your life, but let it also be a reminder of your perseverance and strength. OH, and you probably have a sweet stash of candy to treat low blood sugars for a while! You can do this. You are doing it. Well done.
Four years ago today, the bottom fell out from beneath my feet.
“I have good news and bad news,” the doctor said. “The good news is that Mackenna is going to be just fine. The bad news is that she has type 1 diabetes.”
In some ways, I knew what that diagnosis meant. But four years later, I know that in most ways, I had no clue.
I didn’t know that I’d never sleep through the night again. Ever.
I didn’t know that we’d be making medical decisions for our daughter on nearly an hourly basis every single day.
I didn’t know that we’d have to understand so much about carb absorption and basal rates and infusion sets.
I didn’t understand then that the insulin I was responsible for dosing to keep her alive, also had the power to kill her if I misjudged the amount.
I didn’t know how to count the carbs, calculate the dose and inject the insulin while juggling the normal things that moms do. Pregnant moms with preschoolers and toddlers at their feet.
I didn’t know how I would ever manage this big scary thing for my happy little girl.
But there are other kinds of things I didn’t know.
I did not know that my daughter would be the one to teach me the real meanings of joy and perseverance.
I had no clue how strong she was.
I had no idea how brave a child can be when she needed to be.
I did not yet understand that faith really does overcome fear.
I did not yet know how it feels to be wrapped up in peace that passes understanding.
I did not fully understand that the Author writes the story. That He pens the twists and turns. He writes the parts when the bottoms fall out from unsuspecting characters. That I am one of His characters and He holds the pen, not me.
And I had no clue how loved and cared for and protected we would feel while the floor was falling and our hearts were breaking. No clue how safe we would feel relying on nothing but the Author’s promises. That He is good. And He loves us so.
Strength for today and bright hope for tomorrow.
That’s how we get through the day-to-day with type 1 diabetes. Sometimes we are so tired of it. She and I both. So tired of pressing pause to check blood sugar. So tired of weighing and measuring and counting carbs. So tired of site changes. It’s a lot and there’s no end to it. Sometimes it’s best for us to be a little nearsighted. Strength for today. The next meal, the next sporting event, the next site change. One thing at a time. Strength for today.
And bright hope for tomorrow. Some times the big picture of life with t1d seems overwhelming and scary. She’s 8 now, which means she’s got a lot of living left to do…a lot more years to deal with type 1 diabetes. But we really do have great hopes for tomorrow. The advancements in technology even in the past four years have been incredible. We have huge hopes for better tools and ultimately for a cure. And of course our greatest Hope is in Jesus Christ. That one day, we’ll walk on streets of gold and praise His name for ending all heartache and all diseases for all of eternity.
“I’ve got good news and bad news for you,” the Author says. “The bad news is that in this world you will have pain, heartache and trouble. And the good news is that I am prepared to equip you with the strength you need for each and every day. And I AM the Bright Hope of tomorrow.”
To my Mackenna Joy,
You blow me away. Your life is such a gift to me. Thank you for teaching me about courage and joy and strength and passion. You’re kicking t1d butt on a daily basis and Daddy and I are so so so proud of you! Happy 4th Diaversary, Sugar Booger!
(To read more details about Mackenna’s diagnosis story, click here. And for information on the warning signs of type 1 diabetes, click here.)
The 12 months leading up to the JDRF One Walk in 2016 were full of highs and lows for our family. Every year has those kinds of peaks and valleys, right? But there are two valleys from that year that really left impressions on my heart.
The first was the unexpected loss of Justin’s job. His company did some restructuring and suddenly one Friday evening we suddenly found ourselves without income or health insurance. Living with a disease that requires more than $1,000 in medical expenses every month means we really rely on our health insurance. We went without a salary or insurance for 15 weeks (you can read more about that in this blog post over here.) Those weeks were hard and scary for both Justin and I.
The other valley was one that I journeyed through with Mackenna. She’d been living with type 1 diabetes for two years and for the first time, she opened up about her frustration with it. We’d always praised her so highly for her courage and joyfulness, but I’m afraid we failed to acknowledge with her that this life would not be easy. And we failed to let her know that she wouldn’t always feel brave and joyful; that there would be times when she’d feel frustrated and angry and sad. And we failed to let her know that it’s ok for her to have those feelings. So she kept them in for two years, but couldn’t keep them in any longer. There was a stretch of time when tears came easily for her. She resisted pump site changes like she had at the beginning. She was feeling the huge weight of living with type 1 diabetes, and she was just done with it. She sobbed about how much she hated diabetes and she didn’t want to “do diabetes” any longer. I’ll tell you what, when you hear your child cry like that, your heart is shattered into a million pieces. I hated it too. And I didn’t want to “do” it any longer either! But there’s no choice. I held her a lot. We cried together a lot. And we persevered.
Can I tell you how we climbed up from those valleys? It’s pretty simple actually. We overcame fear with truth. We overcame sadness with truth. We overcame frustration with truth. We overcame with Truth!
The truth is this: Our God is for us, not against us. He loves us. He wants good things for us. He has a future for us.
When Justin had a particularly rough day during his job search, I realized we needed to be surrounded by the truth. We needed to be bombarded by truth at every turn, rather than discouragement. So I wrote Bible verses on index cards and plastered them all over our house. Every mirror. Every kitchen cabinet. Above light switches and on doors. We couldn’t look anywhere without one of God’s promises staring us in the face.
And then I did the same thing for Mackenna. We taped verses to the headboard of her bed. We read them during difficult times and when she went to sleep at night. And unbeknownst to me, she often climbed up on her bed alone and read each card herself.
And it helped! We were able to shift our focus off of our fear and sadness and on to what’s true about ourselves and what’s true about our God.
Truth wins.
And so when it came time to design our walk shirts for 2016, I looked back at the previous 12 months and saw the valleys. But only for a moment. Because what stands higher than the valleys are the mountain tops. And for us, the mountain tops were covered in God’s goodness. His provision and protection. His love. His mercy. And the Bible verse for our shirts just had to be Psalm 126:3:
“The Lord has done great things for us, and we are filled with joy.”
So on February 20th, 2016 at 8 in the morning, we arrived at the Mall of America. We walked down the same hallways and met up with our favorite people. We walked in support of Mackenna and her Uncle Josh who make living with type 1 diabetes look easy. We walked knowing that it isn’t easy at all. They are our heroes.
We walked full of joy that our loved ones raised over $7,000, every dollar of which is being used to make diabetes easier and non-existent. We walked full of joy knowing that the people on either side of us are supporting us every day of the year, not just on walk day. God has given us an army of support and we are truly so thankful for each person on our team! And we walked, hearts full of joy, because God HAS done great things for us! And we are so grateful for the Truth that held us up in the valleys.
Just the 5 of us before the mall got all crowded. Thrilled to do all of life’s valleys and mountains with these people!
Those boys love their big sister!
Mackenna and her Uncle Josh…why we walk.
The complete 2016 Mackenna’s JOY team!
These sweet kiddos have loved and supported Mackenna since diagnosis, and I am sure 20 y ears from now when they are young adults, they will continue to be a source of encouragement for Mackenna!
I can’t even look at this picture without getting choked up. Look how confident she is, how strong! A picture like this after the valleys she’s been through…it’s so powerful! I will forever feel so honored to be her mama.
J O Y !
In just two days, we will walk again. For the same people and for the same purpose. And we will keep walking, until there’s nothing left to walk for.
If you’d like to help our team reach a HUGE fundraising goal, click HERE and you’ll be directed to our team’s fundraising page.
This morning I stopped at the pharmacy to pick up Mackenna’s insulin. I gave the pharmacist her name and birth date and when he came back from the refrigerator with the box of insulin, he paused. He glanced at me and then back at the paper stapled to Mackenna’s box of insulin. Then he said, “Are you aware that this is expensive?”
What I wanted to say was: Are you aware that without it, my daughter dies? Are you aware that it’s not an optional medication? Are you aware that there really isn’t a choice here? Are you aware that once January hits and we have a brand new deductible to meet, that expensive box will become five times more expensive than it is today? Are you aware that this is just one of the very expensive things we have to buy to keep our child alive? Are you aware of the fact that if I had to choose between paying our electricity bill or paying for this box of insulin, I’d pick the insulin? Are you aware of the fact that no matter what price that box rings up at, I will buy it? Are you aware that this medicine keeps my child alive? That without it, she does not live?
But instead, I just said, “Yes, I am aware.”
I don’t usually let diabetes get the best of my emotions any more. I am stronger, more resilient, tougher-skinned than I was at first. But sometimes, it catches me off guard and tears just come. I swiped my credit card. $95.35. And I walked away with tears in my eyes.
I live under the same roof as type 1 diabetes. I am aware of it when I sleep, when I wake up, when she is with me and when she is at school. I am aware of it every time she eats, swims, plays basketball. When she runs the mile at school, when she is invited to a birthday party or a playdate. I am fully aware, all of the time. But today, that question, “are you aware?” It got to me. I am painfully aware of this disease all of the time, but I do not typically let myself think about how consuming (and expensive) it is.
I let myself cry a little today. I think it’s healthy. It’s ok to be sad. It’s ok to hate the disease. It’s ok to wish that I could wish it away. But I’m not going to stay in this place for too long. Instead, I will focus on the joy before me. I will choose to be grateful that type 1 diabetes can be treated and that my kiddo can live a normal life. I will choose to be grateful for the resources to pay for that box of insulin every month. I will choose to be grateful for a timely and correct diagnosis three and a half years ago. I will choose to be grateful for the people in my life who support me and pray for me and let me cry. I will choose to be grateful for the people in Mackenna’s life who support her and pray for her and love her and appreciate her courage and joy. I will choose to be grateful for the hope of a future without type 1 diabetes.
Today I’m fully aware that I have a lot to be grateful for.
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