Why Can’t I Sleep? (Reflecting on Rest After A Child’s Diagnosis)
Just before the twins were born, we decided it would be better to stay in our two bedroom house than try to move while I was pregnant. Happy with our decision, we transformed our master bathroom into a nursery. We squeezed in a crib, blocking the shower completely, and decided to put both babies in that one crib. We also wedged a glider in between the crib and the toilet, and created a diaper changing station next to the sink. Over the crib hung a paper garland which read, “Welcome Home, Hope and Ransom.” This welcome sign remained there until the day we moved a year later. I so wish I had a picture to remember our setup, but in my pride, I never took one.
After our twins arrived, the medical equipment we added to our master bathroom kept us amused. The equipment spilled out into our bedroom, my view being an oxygen condenser that sounded just like Darth Vader and could be heard from any room in the house. We had to walk carefully, being sure not to trip on tubes and cords.
Ransom had sleep apnea and would often experience desaturation, a rapid lowering of his blood oxygen supply. The pulse ox (machine that measured his blood oxygen supply) alarm signalled multiple times a night, and we would take turns running to Ransom to pick him up and remind him to breathe. To this day, the french fry timer alarm in fast food restaurants reminds me of this machine. I sense my heart rate rising when I sit too long inside a Chick-Fil-A.
Weeks upon weeks of this lifestyle left me utterly depleted of all energy. I simply could not sit up at night and watch Ransom sleep. I knew I needed to rest in order to care for my family in the morning. I laid Ransom down most nights and fell asleep as my head hit the pillow whispering prayers like, “Lord, keep him alive.”
God’s Power Made Perfect In My Weakness
In my fatigue, I knew that sitting by his side would not add a single hour to his life. (Luke 12:25) I was completely useless by the end of the day. Looking back, I know that my weakness was simply highlighting God’s strength (2 Cor. 12:9). He is ultimately the giver and sustainer of life — not me. Each morning that we woke to Ransom breathing and doing well, we knew God kept Him.
Months later... When I had caught up on sleep, the temptation arose for me to allow my thoughts to run wild:
What if I ate more nutritious foods during my pregnancy... Would Ransom still struggle so?
Were his surgeries medically necessary, or did they create more problems?
Did we choose the right doctors?
Is he getting enough therapy?
Will we have enough money to pay for his medical care?
Is he taking the correct medications?
Am I putting the best foods in his feeding tube?
What else am I missing?
Will he struggle his whole life?
Will he grow out of his diagnoses?
Am I neglecting my other children by paying so much attention to Ransom?
You name it, I’ve thought about it.
Sometimes the Most Hopeful Thing You Can Do is Go to Sleep
When you have a child with a diagnosis, it is natural for your mind to be reeling with uncertainty. Sometimes the most godly and hopeful thing you can do is relax every muscle, close down your Google search bar, and fall asleep. Letting go of these thoughts for the night is a spiritual practice, but the work is all Christ’s. He lovingly takes our burdens and gives us rest. What a sweet exchange!
Come to me all who are weary and heavy laden and I will give you rest.
Matthew 11:28
When the cares of my heart are many, your consolations cheer my soul.
Psalm 94:19
Isn’t it interesting that our restlessness and panic come most often at night? The world around us sleeps soundly, and we find ourselves seemingly alone in our wondering and worrying. We are not alone in those moments. There is One who cares for our souls and loves us dearly. He is ready to listen... ready to woo us to the truth of His word… ready to quiet us with his love.
I bless the LORD who gives me counsel;
in the night also my heart instructs me.
I have set the LORD always before me;
because he is at my right hand,
I shall not be shaken.
Psalm 16:7-8
The Source of True Rest
Sometimes I cannot force myself to sleep and the Holy Spirit pulls me out of bed to sit with Him for a time. These are the nights I need the power of the Word of God to interrupt my spiraling, anxious thoughts. In these meetings, the words of the Bible seem to lift off the page and paste themselves onto my heart:
He will not let your foot be moved; he who keeps you will not slumber.
Behold, he who keeps Israel will neither slumber nor sleep.
Psalm 121:3-4
For I know that the Lord is great,
and that our Lord is above all gods.
Whatever the Lord pleases, he does,
in heaven and on earth,
in the seas and all deeps.
Psalm 135:5-6
I know that you can do all things, and that no purpose of yours can be thwarted.
Job 42:2
After some time rehearsing the strength and sovereignty of God, I usually can slip back into bed and finally fall asleep. In the words of Charles Spurgeon, “When you go through a trial, the sovereignty of God is the pillow upon which you lay your head.”
Certainly there are times where sleeplessness prevails. I know this all too well, even now as I write. Dear fellow weary parents, may we rest in the grace of the gospel of Christ — even when physical rest evades us. May God’s unparalleled strength energize us to do all He has put before us today. He gives strength for today and bright hope for tomorrow!
You have kept count of my tossings; put my tears in your bottle. Are they not in your book? Then my enemies will turn back in the day when I call. This I know, that God is for me.
Psalm 56:8-9
If you’re facing sleepless nights over a diagnosis for your child, please let us know how we can pray for you here in our helloHope community!
About the Author
Mary Brantley Meade lives in Atlanta, Georgia with her husband and three young children. Her background is early childhood education, and she most recently received a masters in counseling from Westminster Theological Seminary. When she’s not counseling or writing, you can find her enjoying the outdoors with her family.