As I sit here holding his hand and talking to him until he wakes up after his 31st surgery, I can’t help but grieve. Because this isn’t the kind of life I wanted for him.

When I found out I was pregnant, I was a terrified 20-year-old who couldn’t even keep track of everything I needed much less what a baby needed. Then they told me if you lived, you would have severe disabilities, but I chose you. I still held out hope that you would be healed.

I begged and pleaded with God. I cursed Him. I yelled and screamed at Him. I asked Him where He was because He sure wasn’t with me. I was so angry. I’ve read the Bible. I’ve attended plenty of church services, and I know God heals the sick, the blind, the weary, and the broken. So why? Why wasn’t He healing my baby?

My faith was shaken and I began to doubt He ever existed because who would allow a child to suffer like this? Who would allow my heart to continually feel like it was being torn out of my chest? If God loved me so much why was this happening?

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I can’t say that I don’t still get angry at God. I think it’s human nature when bad things happen. I still have days when my faith is shaken so deeply that I’m not sure I’ll ever be able to pray again. Everyone likes to say, “God won’t give you more than you can handle.” But that’s a lie. God will.

Nobody can handle the grief, pain, suffering, and heartache that comes from watching your child be terminally ill and everything they endure. The decisions you will have to make. This new world you will be introduced to. Nobody is prepared for that.

So yes, He will give you more than you can handle, but he will never leave you. During the times I cursed God, I was angry, I pushed Him away, and my faith was shaken, He drew me near. He never left me, and He carried me when I could no longer walk. Even when I couldn’t find the words to pray, He heard me.

I’m not sure why He made my child like this. There is no argument there. He made Creed. He formed him in the womb. He knew he would have disabilities. He knew everything he would go through. There is a reason for this even if I don’t know why. Maybe so I can help other people with the situations we’ve been through. Maybe so Creed can show people that God still has the final say. There are so many maybes that I can’t list them all.

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I used to pray that Creed would be healed and that by some miracle of God, he would be okay. I prayed it reverently every day and night, every waking hour. I’ve come to realize that my child will likely never be whole on Earth. I’m not sure why because I know God can heal him. However, I hold faith in the fact that when he goes to Heaven, he will be whole. If God chooses not to heal him here on earth, he will be whole in Heaven.

So for now, all I can do is love him and fight for him with every ounce of power I have within me and leave the rest up to God. 

“From the end of the earth will I cry unto Thee when my heart is overwhelmed; lead me to the rock that is higher than I” (Psalm 61:2).

Originally published on the author’s Facebook page