Month: April 2019

The Unsung Heroes





written by Dawn, a mother to six children, two of which have Friedreichs Ataxia, a rare, genetic and progressive, neuromuscular disease.

hero: a person admired for achievements and noble qualities.

Merriam-Webster

My kids asked me what it meant to be a hero. I explained to them, in my words what a hero is. It sounds very little like the definition presented by Merriam-Webster, which makes “achievements” and “noble qualities” inseparable as measures of heroism.

Heroes Among Us

I am surrounded by heroes. The heroes I refer to do not keep list of achievements. They do not have a trophy room or a book of accomplishments. Their success at the end of the day is found in the bed of a sleeping child who is not in pain. It lies, a child finally asleep in a mother’s arms after waking again, crying, shaking, asking if their sibling will die and what that means; begging to know why God would do this to a family. It is in the tears of a mother who simply made it through another day in a life she never imagined; a life that is a contrast of nightmare and beautiful dream.

Many have given up achievements altogether. They fight to remember who they were “before ____”. What makes them happy? What are their career goals? Fitness goals? Nutrition goals? These have taken a back seat to timely med administration; tube feeds; supervision of nursing staff; nights by the bed of a child in the hospital; comforting siblings who are often lost in the concerns of their brother or sister.

Heroes Show Bravery

Of course the first people my children think of when they think of heroes are military, police, firefighters and Justice League. I do not wish to diminish the service of anyone, but I am finding that there is an entire world of heroes that go unnoticed. These are the people in my life who show tremendous bravery every day simply by getting out of bed and facing fears many parents can’t bear to think about. They don’t see it as brave. If you ask them they will tell you there is no choice; they are simply doing what they must. But I see bravery.

I see my friend take her child home on hospice care and smile through her tears as she cares for her family. I see a hero. I see another friend raise the special needs children she adopted, knowing their health care needs; juggling military life; moving her family…I see bravery. I see moms with children suffering from diseases that are only known in 3 or 4 children IN THE WORLD…they are brave. They are noble.

You will see these people, but you won’t know you do. They have no uniform or badges. They are in the grocery store planning meals and shopping. They are at the school functions. They look just like anyone else. You will probably never see them cry. Their tears are saved for the quiet moments spent with God, pouring out their heart, presenting themselves vulnerable before the only one who can heal all hurts.

Heroes Show Up

Perhaps it’s not the definition purposed by Merriam-Webster that is problematic in my life. Rather, it is the perception of society as to what qualifies as an achievement. The mothers around me are heroes because they show up. They show up when they want to run. They fight back tears and parent when they want to hide. They plan end of life care; sign do not resuscitate paperwork; talk about funeral arrangements. Their achievements can be seen in the way their children feel loved, accepted, and whole within their family even as their heart feels wounded beyond repair. Their achievements are measured in the tears they cry.

These are the heroes in my life. I am in awe of them. I hope one day, my children will recognize that heroism can stand INDEPENDENT of achievement as measured by society. Heroism is found in the heart and soul of a mother of a child with life-threatening disease.

Spreading Sunshine wants to honor the heroes among us. On May 3rd, we will choose 10 medical moms to receive a Sunshine Box. You can nominate a hero you know by completing the form below.

Choose Prayer

written by Dawn Graczyk,
a mom in our Sunshine community

Despite the little ones on my lap, I was feeling terribly alone. Yet another member of our rare disease community had died. It hit me hard; I couldn’t help but wonder at the future before me.  I couldn’t help but see myself in their tear-filled email.

In that moment, I desperately wanted to reach out to a friend and scream at the injustice of it all! I wanted someone to comfort me and tell me the things I knew to be true about God: that He is good, that His plans are good, and that He has gone ahead and will be with me in that moment. I needed to know that my feelings were neither good nor bad, but normal.  

So I went online and started googling. No joke.

I accomplished very little. I read that other moms felt the same way. I knew this. I read about how we lose friends in our walk. I’ve experienced this. Yet I did not walk away comforted. I still felt empty. I was beginning to feel frustrated and angry. I put my phone down and headed for the coffee pot. Yes, I seek comfort in my coffee pot.

I knew I would be writing on the topic “choose prayer.”  In the weeks prior to this, the phrase had been on my mind regularly.  Somehow, I had forgotten in this moment what is now glaringly obvious. I felt a voice in my heart say, “Choose prayer. I’m here.”

Why is it so much easier to turn to social media, texting or Google?  Why do I search online for comfort and validation? I won’t find it there.  

In my sorrow, I won’t find lasting peace and comfort in articles or cyberspace or even in my friends or family.  It is only in Christ. When I seek fulfillment elsewhere, I remain empty.

The previous week had been filled with challenges, and I had chosen prayer. Perhaps I had allowed pride to enter my life and needed a reminder.  When the stomach bug hit the first time, I prayed for a speedy recovery and thanked God for bleach and my own health. When the cold hit, I prayed that God would protect my children who have respiratory compromise and thanked Him for excellent doctors.  When the washing machine broke and the puking started again — on my bed — in the middle of the night, I laughed. Like a crazy woman. And then I prayed. In these things, I remembered to “choose prayer.”

Satan knows when and how to hit us.  His strategy and attack are carefully crafted and individualized. When we overcome in one area, you can bet he’ll find another way.  When my heart broke, I forgot to grab hold of God and seek His mercy. Part of me was afraid to take my feelings to God. I had trusted Him in the smaller things; however, when I looked ahead to the big things, a part of me resisted prayer. Part of me was afraid He wouldn’t be enough. Part of me was afraid my prayers wouldn’t be enough.

C.H. Spurgeon once said:

“Prayer pulls the rope below and the great bell rings above in the ears of God. Some scarcely stir the bell, for they pray so languidly.  Others give but an occasional pluck at the rope. But he who wins with heaven is the man who grasps the rope boldly and pulls continuously with all his might.”

I had been stirring the bell. I was not grasping the rope with all my strength and sounding it continuously.  I lost sight of the One who is my prize.

It is time to remember.

It is time to remember that God hears my prayers when I sit in quiet and open my Bible.  He hears my prayers of thanksgiving and supplication. He is pleased when I am able to seek Him to meet my physical needs.  He cares about and is present in the details. He provides me the strength to be the mother my children need. He is glorified when I “do things right.”

God is present in each moment and each season.  I no longer have much quiet time. With six kids in the house and complex medical needs, I rarely have the brain power to be eloquent.  Often my prayers seem so simple that I am afraid to even pray them. Surely, these prayers are not good enough. Oh, but they are!

The prayers that most pull the bell rope to God’s ears do it, not because they follow a formula, but because they are sincere. They are the prayers of a mother grasping the rope with all her might. Even when she is certain her grip will fail, even when hanging on is painful and feels impossible, she continues to ring the bell.

When we feel lonely, we can cry out,“God please help me. Fill my heart. Send me friends but please fill my heart with YOU first.”

When we feel angry, we can scream, “God this ISN’T what I wanted for my children! Please help me want you first.”

When we don’t think anything can comfort us, we may weep,  “God, this disease could take my child. I want to believe you are big enough. I’m not sure I can. Help me. Forgive my unbelief.”

And sometimes, the prayers are nothing more than the name of Jesus and the groans of the Holy Spirit.

I challenge you, and myself, to seek God in the daily things.  Seek God in the tasks of parenting because He cares about these things. Sing praises to the Lord when your heart is filled with His joy and give Him thanksgiving.  

Choose prayer when it comes easily and eloquently.  Choose prayer when you are lonely because only God can fill that void.  Choose prayer over Facebook and Google. Choose prayer when it hurts, and you don’t have any words. Choose prayer because God is present before, now, and in the future. Choose prayer because you are pursuing an eternal prize of immeasurable value, and it is through bell ringing that this prize is won. Choose prayer because God loves you and wants to hear your voice, ringing as a bell, fervently and desperately in His ears.