by Dawn Graczyk, Sunshine Mom
As we are approaching Valentine’s Day, love is everywhere. The candy aisles are loaded with red, heart-shaped boxes and jewelry commercials abound. But what does it really mean to love someone? We need look no further than our Sunshine Moms and Dads to see authentic love on display. Their sacrifices and their devotion to their children show us the tangible love of Christ each and every day.
We have known Dawn and her children for several years and we loved having them as a part of our Year of Sunshine in 2020. She has come to be an inspiration to me as we watch her demonstrate true sacrificial love for her family. Here are Dawn’s insights.
I am lying in bed, nursing a headache, when my 10 year old comes to me. He, like his older sister, has a degenerative neuromuscular disease. His progression has been more aggressive, and his mobility is fading fast. He tells me he took a hard fall on the kitchen floor and climbs in bed beside me. I take a moment to breathe in the little boy smell and enjoy the feeling of his thick hair on my cheek. It occurs to me that this is love.
I’ve been thinking of what to write for a few days now. Valentine’s Day is quickly approaching, and it is time to write catchy blogs like, “5 Creative Ways to Love Your Child,” and yet, I cannot bring myself to write this for the medical mom community. Our time is more limited; our struggle to keep up with daily demands is more strenuous; and often our feelings of inadequacy already weigh heavy on us.
If you are looking for more tips on getting creative or learning your child’s love language, Pinterest is full of wonderful ideas. I want to present to you a reminder that you are enough. You love your children in a thousand small ways everyday, but these have become so much a part of your normal, that most people, even you, no longer recognize them for the extraordinary acts they are.
I want to lift your spirits; assure you that you are not alone, and remind you that YOU are enough. Here are five ways medical mamas love their children:
1. You get out of bed.
There have been days I’ve waken, even after 5 years, hoping that the “your daughter has Friedreich’s Ataxia” was just a nightmare. Knowing that it is not, I take a deep breath and say a simple prayer, “God, please help me to face this day.” Today I will help a teen with the most basic of daily living skills. I will watch my son grow weaker. I will continue to fight for referrals for the two children newly diagnosed with the second rare genetic disease. I will spend hours on the phone advocating and making appointments. I will research possible treatments while also breaking up fights; preparing meals; and struggling to keep the house clean.
You have similar demands. You may be sore and sticky from sleeping in a plastic hospital chair, but you’re peeling yourself up to wash your face and get coffee before the rounding team approaches. You may have been up several times, or all night, comforting a child. You are weary. This is a weariness that sinks into your very marrow and wounds your soul.
But you get up. In this, the simplest of acts, you demonstrate your love. You put one foot in front of the other, and when you can’t, you reach your arms to your Father and allow him to carry you. Not only is this a pure expression of love, it is an enduring testimony to your children of the power of faith and the love of their Heavenly Father.
2. You hurt them.
Yes, you read that right. You recognize that sometimes you must be the enemy in the eyes of your child in order to do what is right for them. They, like a bear caught in a trap, scream and kick and wail. They fight you, unable to understand that though it hurts now, it is for their good. You cry, but you hold tight for the IV start, blood draw, or spinal tap. You watch them wheeled off to surgery, in the hands of near strangers, their eyes pleading with you to keep them close. I have had children scream that they hate me; that treatment is torture. I’ve sat next to the bed of my daughter, following spinal fusion, as she received her second blood transfusion, praying I made the right choice. I’ve been told they’d rather die then have another surgery. I sacrifice their love for me, in exchange for what is best for them. I sacrifice my heart to keep them whole. Is there any greater love?
3. You continue to pray. You continue to hope.
I have never prayed more earnestly or more frequently than I have since getting our diagnoses. I don’t just pray for healing. I plead and beg, and make myself absolutely undignified in my cries. I scream and yell and shake my fists. I’ve attempted to bargain: “take me Lord, PLEASE, take me instead.” In the end, my soul quiets, and I find myself saying, “Whatever it takes Lord, whatever you ask of me, I give it all in exchange for assurance of their salvation. My needs, my heartache, becomes miniscule next to their salvation. Break me, destroy me; I lay my life down; I give you my heart, God, in exchange for assurance.”
4. You sacrifice continuously.
I am not living the life I had planned. I am continuously reinventing my visions for the future, and just when I think I’ve reached a level of acceptance, something changes again. The grain-free, sugar free diet? It became too expensive and took too much time. I’ve exchanged it for the joy of my children’s faces when they see homemade cookies. My nursing career has been spent entirely in the care and advocacy of my children. My little farm has not materialized, as I spend my time driving my kids to and from therapy, and no longer have time to devote to gardening and animal care. Homeschooling became a dream for me, and yet, with 6 kids with various special needs, I am letting go of this dream and sending them to a school that can meet their needs better than I.
Every sacrifice hurts. The creation of a new dream means the death of the old. Often, what is best for them goes against the feelings of my heart and my own desires. You and I, we do this every day. We break our hearts continuously, over and over again, in ways we never imagined we could, in love for our children.
5. You find joy in the smallest of things.
My children are becoming more dependent rather than less. They will not reach the milestones other children will. They will not be star athletes or attend Ivy League schools. My love for them has no basis in any achievement or offering they can present to me. I find joy in the smell of their freshly washed hair, the feel of their breath on my neck as they fall asleep, their joy at chasing a butterfly; doing puzzles together; they way they say “esketti” instead of spaghetti; the recognition of my stubbornness and sarcasm in my teenager. My hope and fulfillment is found in Christ. I have these children with me as a gift, to love fully and sacrificially, and then to return to the one who gave them to me. In the meantime, every kiss and memory made is cherished, even in my complete and utter exhaustion.
I do not do these things perfectly. Some days it is a battle to fight bitterness and depression. On occasion my exhaustion overwhelms me and I lose my temper more than I should. BUT YOU AND I KEEP GOING. Love is moving forward into the unknown, heading into the future when you’d rather the world and time would stand still. Loving those little people who are so fragile and teeter on the edge of breaking your heart.
You are brave. You are loving. You are held. Not because of the notes you leave in a lunchbox or the homemade, sugar free, grain free muffins you make for breakfast, but because you ARE. And that is enough. YOU, dear Mom, are enough.
Do you have a child with a critical or chronic illness and are looking for a community of support? Click below to learn more.
Thank you Dawn for allowing us to walk with you and your family and for sharing your insights with us. Our heart at Spreading Sunshine is that parents would feel loved and supported as they care for their child.
During the month of February we are showing love in very tangible ways by sending valentine packages to families across the country and providing meals to parents in the hospital with their child in Memphis, TN. Do you have a heart to serve families? Join our Valentine Project by clicking on the box below.