I'm Stacey. I'm a wife, mother, photographer, type 1 diabetes advocate, and daughter of the One True King. Welcome to The Joy Before Me, where we can be real about life, and real about focusing on the joy within it!
Song week continues! If you are just joining me today, be sure to hop over here and see what song I wrote about first this week.
So the second song I wanted to share with you is “Lord, I Need You” by Matt Maher. Take a listen to it and then I’ll let you know why I chose it.
The date of Mackenna’s diagnosis and the days following were absolutely my most desperate days of motherhood so far. I was desperate for rest. Desperate for peace. Desperate for joy. Desperate for things to go back to the way they were. Desperate for strength. I felt helpless, weary and weak. This song, “Lord, I need you” became a constant prayer.
When my mind started to wander toward thoughts like, “Why her?” or “I can’t believe this is our life now.” “I can’t do this. I’m not strong enough to parent a child with a chronic illness.” The weight of those thoughts was crushing. And they’d come out of nowhere. I’d be making dinner. Or folding laundry. Or seeing other kids at the store, kids without type 1 diabetes. And I’d fall apart. To be super honest with you, those thoughts seem to still come back out of nowhere, and I still fall apart a little.
Lyrics like this, remind me of the truth that I’m kind of right. I actually can’t do this, not on my own. Lord, I need you. Every hour, I need You. And when I cannot stand, I’ll fall on You.
In 2 Corinthians chapter 12, Paul has pleaded with the Lord to remove a thorn from his flesh. He’s not talking about an actual thorn; it’s more of a metaphor for some difficult, painful, frustrating thing he’s been made to deal with. He pleaded three times to the Lord, asking him to take it away. Could the Lord have removed the thorn from Paul’s life. Absolutely. But He chose not to. He responded by saying,
My grace is sufficient for you, for my power is made perfect in weakness. (2 Corinthians 12: 9)
God’s grace is enough to make up for my weaknesses, my exhaustion, my mistakes. And when I am weak, when I cannot stand, and I fall on Him…that’s when His perfect power is revealed. When people start to get a glimpse of what our life looks like: the endless sleepless nights, the constant monitoring, all of the extra steps…at some point, most people say something like, “I don’t know how you do it.”
How do we do it? We are not super humans who don’t need as much sleep as everyone else. We are not control-type, number-crunching people who just love to collect and analyze data 24/7. We are able to do this difficult life because we have a God who loves us. He gives us what we need, whether it’s a child sleeping in late, or a friend offering to watch our kids…He gives us what we need, just when we need it. And in my weakness, I see His strength. I feel His power.
I’ve pleaded with the Lord more than three times to cure Mackenna from type 1 diabetes, to remove her thorn. And He has, so far, chosen not to. But that doesn’t mean He has abandoned us. Nope. He loves that little girl way more than I do. If curing her would bring Him the most glory, He would do it. So until He does, I think that my hourly reliance on Him for grace and strength is the glory He desires most.
During the days and weeks after Mackenna’s diagnosis, friends and family members would shoot me messages saying, “I heard this song and thought of you guys.” It happened more than a few times, so I started to compile a list of their songs. Eventually I made a disc of them and it’s almost always playing on repeat in our van, enough that the kids know most of the lyrics.
These songs were powerful to me then, in the middle of a constant state of feeling overwhelmed and exhausted. And they are still powerful now. They bring me back. They remind me of the struggle and the weariness, but more importantly, they remind me of God’s truth. And really the whole point of this blog is to point people (myself included) to that very truth.
So this week, in each of my posts, I’ll share one of the songs on that disc. They aren’t songs about type 1 diabetes. They are songs about hard times, and the goodness of God through it all. If one of them brings someone to mind for you, please share it. You don’t have to have type 1 diabetes in your home in order to appreciate the messages. Everyone has hard things. Everyone needs to hear the truth.
First up, “Blessings” by Laura Story. Take a listen to it here, then come on back and find out what drew me to this song.
I’ll start by saying that the line, “What if a thousand sleepless nights are what it takes to know You’re near…” is what completely drew me into this song and made me turn up the volume. Parents of children with type 1 diabetes can totally understand why. We do not sleep. When we leave the hospital and they give us orders to check blood sugars at midnight and 3 am for a few weeks, we groan a little. But it doesn’t take long to realize that if we want our little fighters to even wake up in the morning, we’ll just keep doing those middle-of-the-night checks. I actually just crunched the numbers and figured out it’s been 922 sleepless nights since Mackenna’s diagnosis. Nearly a thousand.
I think Laura’s song is actually an answer to one of life’s biggest questions. Why do bad things happen? And if you’re a Christian, your question might be: Why does God allow bad things to happen. That’s a big question. One that probably floats through your mind when your child is diagnosed with type 1 diabetes, or when your husband loses his job, or when you’re struggling with infertility, or when your best friend betrays you. Why does bad stuff happen? Why would a good God allow that?
I don’t know. But one of the things that I’ve learned over the past two and a half years, is that it’s not really my job to know. This life of mine, isn’t really about me. Mackenna’s life is not really about her. We exist because God has a story to tell and He has a part for us to play in it. I’m not sure why he chose for Mackenna to live with type 1 diabetes. But I believe that her diagnosis is part of His story. And although I wish He would have written this chapter a little differently, I trust that the story ends well because He said that it will. He sees the bigger picture. He knows how many people will be touched by Mackenna’s story…how many lives will be changed when they see how she praises Him in the storm.
The thought has occurred to me, that maybe it’s me. Maybe it’s me who needed to feel His nearness more deeply. Needed to experience His mercy more fully. Maybe I’m the one that needed a daily reminder that this is not my home. I don’t know. Some day I’ll ask Him.
“For this world is not our permanent home; we are looking forward to a home yet to come.” Hebrews 13:14 NLT
Together with our medical team, we have a target range for Mackenna’s blood glucose (BG) set at 90-150. If her BG goes lower than that, she can experience symptoms of hypoglycemia like dizziness, blurry vision, weakness/fatigue, difficulty focusing. In order to combat a low BG, she needs to consume some fast-acting sugar: juice, applesauce, raisins, glucose tabs, skittles. If left untreated, her BG could continue to drop which could lead to seizures, unconsciousness or worse. A low BG can get quite dangerous pretty quickly and needs immediate attention.
On the flip side, if Mackenna’s BG climbs above her target range, she can experience symptoms of hyperglycemia. A high BG makes her feel crummy. She is thirsty, gets a headache, and feels nauseous. We combat a high BG with insulin, just like a pancreas would. If her BG remained high for too long, she may develop ketones in her blood and land herself in the hospital. Maintaining high BG levels over long periods of time has negative long term effects on a person’s body. This truth is never far from my mind as I know she’s got a lot of living left to do and I want her to have the best future possible!
The problem with managing type 1 is that in the diabetes world, 1 + 1 does not always equal 2. We can do the exact same activities at the exact same times, eat the same amounts of the same exact things on two different days and get completely different BG numbers. It’s seriously maddening! There are hundreds of variables that can affect blood glucose numbers. Here are some:
Food
Activity
Stress
Excitement
Heat
Cold
Types of foods consumed
Growth spurts
Sleep
Illness
What color pants she’s wearing (Just kidding about this one, but sometimes I wonder!)
We keep really good records of Mackenna’s BG numbers, amount of carbs consumed, amount of insulin delivered. We use a continuous glucose monitor to get a glimpse at what her BG levels are doing between finger pokes. And when we notice a pattern that recurs three days in a row, we make a small dose change to try and fix it.
Lately I’ve been kind of fed up with diabetes. A few weeks ago we battled all-day-long low blood sugars. So I made a tiny dose adjustment to keep her in a safer range, especially at school. The following week we had the opposite problem. High BGs all day. Another tiny adjustment. And this week we’ve been all over the board. Low all night long and high all day at school.
There was one night recently that had me giving her carbs every few hours at night to get her low BG up. Around 3am, she was in the low 100s and I felt safe letting her (and me) sleep through until morning. Well, morning came quickly when our 2-year-old was climbing in bed with us at 5:30am, telling us that he was awake. I rolled over to check the glucose monitor screen on my nightstand and saw that Mackenna had climbed up to the mid-200s in the 2 1/2 hours since I last checked her. So. Frustrating! Exhausted and discouraged, I complained to my husband, “I am doing everything right and it’s all just a crapshoot!” To which my sweet 2-year-old replied, “Crapshoot?” New word for him! Oops! We got a good laugh out of his tiny, chipper toddler voice saying that very adult word. A little comic relief in the middle of a frustrating moment.
Unsure whether or not it was actually a word, I looked “crapshoot” up in the dictionary. Oh, it’s a real word. Unpredictable? Risky? Gamble? That basically sums up what it’s like trying to be a pancreas. But it’s a risk I’ll take again and again. Because when she’s 14 or 16 or 18 and wants to manage her diabetes independently, I want to be able to look her in the eye and let her know that I have done the best I possibly could. And I want her to see my vigilance and persistence and mirror it as she starts to take the responsibilities on herself.
One number at a time. Treat it. Correct it. Learn from it. Move on from it.
We need a cure. Because no one is as good as a pancreas.
A few days ago I wrote a post for the mommy of a newly diagnosed child (You can read it here.). If you are reading this, but are not managing type 1 for yourself or someone you love… If you want to help, but you’re not quite sure how…this post is for you. I’ve asked around and come up with two ways you can help.
Whether the family you’d like to help has been living with type 1 diabetes for a while, or has recently been blindsided by the diagnosis, the number one thing you can do to help and support them is to educate yourself. Learn about the disease. Learn what’s true, and what’s not. Learn what it means to be low, what it means to be high, and the dangers associated with each. Learn how to treat a low, and how to correct a high. Learn how to count carbs. Learn the meaning of words like bolus, hypoglycemia, ketones, glucagon. Learn about the technology they use: insulin pumps, continuous glucose monitors, blood glucose meters. Learn what to do in an emergency.
Educate yourself. Take the initiative to ask questions. It will be appreciated. And remember that every person is different, and every person with type 1 diabetes is different. There are lots of ways to manage type 1. There are lots of ways to cope with it. Support the choices that your loved ones are making for their family. They are on the front lines.
I think the other thing you can do that would be a major help, is to take something off their plate. Something really practical. Mow their lawn or shovel their driveway. Offer to clean for them. Bring a meal, or send a giftcard for a meal out. Come and play with kids so parents can nap! (Do you know that parents of kids with type 1 rarely get more than a few consecutive hours of sleep at night? It’s like having a newborn for LOTS of years!) Offer to help with childcare for siblings. Bring over a stack of bandaids and alcohol wipes. Find out where they’ll fill their prescriptions and send a giftcard for that pharmacy. I remember our first trip to the pharmacy after a 3 day hospital-stay. I understood that we’d have a hefty hospital bill, but it didn’t even cross my mind that we’d drop hundreds of dollars at the pharmacy each month! (Diabetes is expensive, an added layer of stress for families.)
We were surrounded by love and support after Mackenna’s diagnosis. My sister-in-law took care of Caleb for us so we could just stay with Mackenna. My mom made sure we returned home from the hospital to a clean house. Friends brought meals over. They took things off of our plate! Which was so enormously helpful because the plate was FULL with just keeping Mackenna alive! Before all the carb counting, finger pokes and dose adjustments became second-nature, they were all we could think about. There was no brain space or energy left for cleaning or cooking! It was amazing to not have to think about some of those other have-to-do things.
If you’ve read all the way through this post, thank you. Thank you for wanting to help. Thank you for wanting to learn. Thank you for offering to take something off the plate. You can be such a blessing to a family with type 1 diabetes!
You are worried. You are scared. You are overwhelmed.
But you need to know two very important things.
First of all, you can do this! Yes, you. This new life of counting carbs, keeping records, injections, infusions, finger pokes, pharmacy trips, calls to insurance. You can do it. You’ll surprise yourself with how quickly you’ll adjust. Some day not too far from now you’ll rattle of how many carbs in an ounce of strawberries like you’ve known it for your whole life. The logistics of managing diabetes will get easier and find its place in your daily rhythm.
And the emotion? I remember. I remember crying through the night at the hospital. Crying at my first post-diagnosis trip to the pharmacy. Crying any time I had to share the news, or any time someone asked how she was doing. For a while, it felt like all I did was manage diabetes, and cry as I felt the full weight of its impact on our family. But eventually I found myself only tearing up about once a week…and then once a month. It’ll taper off. But to be really honest with you, if I have the time to really think about how big and relentless and consuming this disease is, the tears come back quite quickly. And you can do that too. You can feel the weight of it and it’s ok to cry.
Secondly, you need to know that you are not alone. I know that you feel like you’re on a bit of an island. Your friends and family, your closest people, the ones who have known you forever…they don’t get it. They may be trying to get it. But they don’t. And as much as you’d never wish this diagnosis on anybody, there’s a part of you that wishes someone who loves you actually could walk a mile in your shoes. Because that’s the only way to understand living with type 1 diabetes: by actually living with type 1 diabetes.
So I want you to know that although it feels lonely right now, there is a big, loving, compassionate community of people who know exactly how you feel. The type 1 diabetes community is one of the biggest blessings that will come out of your diagnosis. It breaks our hearts to hear about a new diagnosis, but we always say “Welcome to the best club you never wanted to be a part of.” And it’s true. You don’t want to be in the club and neither do we. But we are. And I’ll tell you what…the people in this club are some of the best I’ve ever met. We become fast friends and we take care of our own.
So get connected! Reach out to JDRF about their mentor program. See if your local hospital has support groups. Find a facebook group. Or shoot me a message and I’ll do my best to find a place for you to connect with other families living with type 1.
In case no one has welcomed you yet, let me be the first. Welcome to the best club you never wanted to be a part of. You can do this. You will find strength and courage in yourself and in your child that you never knew existed. You’ve got this.
.PNG){kind=logo}
.jpg)
.png)
