I could hear the panic in his voice as he called me from the other room. My eldest son shouting, “Mom, hurry! DeSean is having a really bad seizure!”
Kneeling down next to my little man, I placed my hand on his jerking body, watching him as he looked blankly back towards me. I continued speaking softly to him and praying. Praying for the seizures to stop. Praying for healing. Praying for the best. Praying questions. Praying continually. Five years praying.
Kalun breaks through the silence, “Mom, is he going to be okay? This was a really bad one.” My mind wakes up to realize that while Kalun has been gone these past two weeks, DeSean’s seizure activity has greatly increased…once again.
I feel confirmed that we are moving in the right direction. Scheduling his hospital stay to start the Ketogenic Diet. I know the timing is right. I know this will be a difficult change for our family. And I know that it is the best decision for our precious boy.
For five years we have watched him suffer – falling to the ground, losing his speech, losing milestones, losing sleep. His heart races, his forehead is often bruised, he is confused. Seizures manifest in many different ways. He smiles, he laughs, he cries, he hits, he is lethargic, hyper, confused, he stutters, his body stiffens, his arms fly up over his head, his body crumples and his head hits the table. The wind is knocked out of him. He walks around in a fog. His medications keep him drugged. They cause vision problems and kidney stones.Yet they offer no real help. Neurologists attempt to make sense of things. More drugs are added. The vicious cycle continues with no relief. Many times, even a hundred times a day these scenarios are repeated. We keep praying.
This Mama finally says no more. No more experimenting. No more drugs. No more. The doctor works to convince me that we can keep trying with medication. He says that we “safely” have room to increase his dosage. Safely? I disagree. He says these seizures are very difficult to treat and it often takes many tries to get the right combination. I work to convince him that the medications don’t work. That we have tried enough. No more experimentation. I am concerned about side effects, quality of life and learning. He tries to comfort me saying that I am a good mom. I thank him and I don’t need that comfort. I need results, healing, hope. I say I want to try a dietary approach and he disagrees. I pursue. He says let’s try one more prescription…He says the diet will be too difficult for us to do. I say try me. Finally he agrees.
I want my son back. A boy full of life and laughter. I don’t want to catch glimpses of him through a drugged veil. I want to see him living fully, fully healed, fully restored.
Praying. Hoping. Believing. Fighting. Trusting.