Parenting Children With Chronic Illness
Meet Elizabeth Maxon
Elizabeth describes herself as a storyteller, truth seeker, beauty beholder, grace giver, and word weaver. You are an author and speaker. She is married to a golf coach named Joel and have two children Lucy and Oliver. She currently lives in Clemson, South Carolina. Her family’s dynamics changed when they learned her daughter, Lucy, had some chronic illnesses. I invited Elizabeth to guest blog so she could minister to some of you who might be in a similar situation.
Everyday life with type 1 diabetes
When I became a mother of a child with Type 1 Diabetes, I learned being sick isn’t just being sick. Eating a meal isn’t just eating a meal. Enduring stress isn’t just enduring stress. Exercising isn’t just exercising. Everything affects your blood sugar and your blood sugar affects everything — physically, mentally, emotionally.
After one of my daughter’s episodes I remember my her confessing, “I feel like I’m going to die, Mommy.”
I assured her, “I’m so sorry, baby. We are going to get through this. We are going to make sure you get well.”
My husband and I are committed to staying positive in our management of Lucy’s T1D, but we secretly know that getting well for Lucy doesn’t mean completely well.
Every single day her fingers are poked and bled.
Every single day she has to keep up with the medical devices that monitor her body.
Every single day she has to consider the carbohydrate count on the food she eats.
Every single day her body goes through the torment of blood sugar levels that skyrocket and then plummet leaving her both physically and emotionally affected.
Every single day she lives with the risk that if her sugar levels are not properly managed she will either experience highs that will damage other parts of her body or lows that will leave her dead.
Lucy’s courage with t1D
As her mother, these aren’t things I like to think about, but they are the realities of T1D. Lucy, and millions of people living with T1D will never get well until we find a cure. Those of us who care for them know the never-ending daily burden of T1D. It is exhausting.
In the beginning, I resented that my child would have to live under the thumb of a disease which held her down and wore her out.
But in the five years Lucy has had T1D:
I have seen her make the softball all-star team and earn her place on first base.
I have listened to her belt out power ballads as her voice teacher shakes her head, smiles, saying — Lucy, you sure don’t pick the easy songs, do you?
I have watched her, in the middle of a family vacation, remove a dangling CGM from her hip as she shrugs with a smile and says — It’s okay. I can just check my blood sugar the old way for the rest of the day, and then dash back off to the lazy river.
I have watched her fill her little backpack with snacks and supplies and tiny stuffed animal friends as she heads out into the woods behind our house for another adventure with her little brother.
Occasionally, grief grabs hold of me. From time to time, resentment rears its head. But most days, my child amazes me because she chooses to live a full-color life despite the dark clouded disease which follows her.
What lucy taught our family
Because of Lucy, I have moved from a theoretical understanding of strength in suffering to something real we have to apply to everyday life.
Because of Lucy, when my fingers trace the edge of the pod on her arm, I quickly move from grief to gratitude.
Because of Lucy, I fight and pray for a cure but I do it in love, not anger.
Because of Lucy, I see our journey with Type 1 as an opportunity not an obstacle.
Because of Lucy, I watch glorious light pour from the cracks of brokenness.
Because of Lucy, I have learned that getting well isn’t the goal — getting on with our best life is.
As a family dealing with chronic illness, we can choose to live in discouragement or we can choose hope. There are rough days in which despair take us over, but we always fight to find the hope in hard places. We keep looking and digging until it surfaces again.
We remember the ways our family has grown.
We are thankful for Lucy’s greater sense of responsibility.
We are more compassionate for others with medical conditions.
We are thankful for the friends this weakness has provided.
We are thankful for a healthier lifestyle.
We remember all these things because when the worst thing happens, it’s never all bad. A diagnosis of T1D has given our family something to overcome together. It has not destroyed us; it has united us.
My encouragement to your family
When our family wants to find hope in the midst of despair, we often ask ourselves.
What if this obstacle is really an opportunity?
What if there is strength on the other side of this suffering?
And through everything, we remind ourselves it’s okay to cry.
“…weeping drives you into joy, it enhances joy, and then the joy enables you to actually feel your grief without its sinking you. In other words, you are finally emotionally healthy.” -Tim Keller
© 2018 Elizabeth Maxon. All rights reserved
Connect and Comment
I’m thankful my friend Elizabeth was able to share just a bit of her family’s battle with T1D. I cannot imagine the battles they have endured, but maybe you are in the midst of a similar situation. I know Elizabeth would love to connect with you. You can connect with her on her website where you can also purchase her book on T1D called, Onederland.
If you’re struggling with a child with chronic illness, Elizabeth joined me talking about this subject on an Overcoming Monday Podcast. I know Episode 28 will leave provide you with some little secrets for your big breakthrough. I’d love to pray for you.
And if you need prayer, please leave a comment so I can know how best to lift you up!