An Open Letter to the Mom of a Chronically Ill Child

To the mom of a sick baby,

I know you are tired. I am too. I want you to know you are not alone. I know you feel that way a lot of the time. You carry a silent burden on your shoulders that no one person should have to bear, yet you would never dream of letting anyone else carry your weight. I see you laying awake at 2am wondering how your son is sleeping in the room next to you. I hear your 4am prayers for strength and guidance. Hundreds of thankless hours of research have been added to your resume that no one will ever read. You know enough medical terms to speak fluently with any doctor. You have researched every possible scenario, medication, and treatment plan as well as the risks, benefits, and side effects of each. You wait impatiently by your phone the day after labs are run for news from the doctor’s office.

I feel your heartache as you struggle to balance between protecting your daughter and letting her experience life. All you want is a “normal life” for him and “normal friends” for her to play with. Yet you know the more friends he is exposed to, the bigger the risk of infection and flare ups. Often times the disease is internal. He doesn’t “look” sick to others today.  Are you being overprotective or not protective enough? Is there such a thing as a balance with that?

You have wonderful and well-meaning friends.  They love you and they love your child, but they don’t see you like I do unless they have walked the same path. It just isn’t the same. You are the one at all the appointments, juggling the crazy schedule.  You are the one giving the medications and injections, monitoring every sniffle or limp they make. You are the one who has to know. And you want to know.

Your heart is broken over what your child lives with. Your mommy heart literally aches with pain for them. You would give anything to take it all from them. You know the weight you carry is nothing compared to what they endure. I see you crying silently into your pillow at night. You are so strong for him and for everyone else but in your still and quiet place much more fragile than you like to admit. I know because I am there too . . . and it sucks.

There are so many words of encouragement and scriptures I could share with you, but you have heard them all.  They are wonderful and every word is truth. Some days they help, but some days there still remains and empty and unsatisfied part. Some days what you need is not another positive quote or motivational message. Some days what you need the most is not to hear the words of Jesus, but to physically feel the arms of Christ Jesus wrap around you in a great big bear hug. A hug where it’s okay to just linger there in silence feeling the extravagant love of your Creator.

I realized something the other day as I was talking about how hard it is to watch my child in pain . . . unfair is the word appearing the most in conversation. I realized that other people may not see and know these internal things about me, but God does. We all know that God knows us inside and out, but this thought was different. God doesn’t just know me because He is God, but also because He has been there. He watched His son, Jesus, live a short life full of unfair words and actions. God the Father watched as Jesus had to endure betrayal and mistreatment. Nothing about Jesus’s life was fair. He endured unimaginable physical and emotional pain in His life, and His Father watched it all unfold. God knows me at such an intimate level not only because of who He is but because of what He has done.

I know you feel alone. I know your struggle is unimaginable. I know your heart breaks. I know it isn’t fair. It wasn’t fair for Jesus either.

El Roi, the God who sees you.  He is near to you and He knows you unlike any human ever could. You are an amazing creation of His purposed just for your child. You are not strong enough, but He is.

Heavenly Father, El Roi, the God Who Sees, thank You that I am never alone, that there is no place I can go where You will not be with me. Thank You that when I stray, You seek; when I am lost, You find; when I am hurt, You heal; when I am empty, You fill; when I am hungry, You feed; when I fail, You restore. I know You are with me all the time. Enable me to sense Your presence in the midst of my everyday life. Manifest Yourself to me as You did to Hagar, to Moses, and to Elijah. Open the eyes of my heart to receive abundant wisdom and knowledge as I learn who You are. I ask all this in the name of Your Son, Jesus Christ my Lord, the Good Shepherd. Amen  – Wendi Blight, I Know His Name

Visit Website