“We need to bring our weakness to Christ and lean on him in simple faith. If we lay it on the strong Son of God and let him carry us and our burden, He will make our very weakness a secret source of strength. He will not take the weakness from us—that is not his promise—but he will so fill it with his own power that we shall be strong, more than conquerors! This is the blessed secret of having our burdening weakness transformed into strength. The secret can be found only in Christ. And in Him, it can be found by every humble, trusting disciple.”~ J. R. Miller (“A Life of Character”), 1894
Last Saturday (May 30), Kathryn had a terrible and prolonged seizure episode that lasted an hour and forty minutes. My heart just shriveled up inside me as I held her head in my lap for that indescribably long period of time and watched electrical activity ravage my baby’s brain. I can’t even describe the pain, the fear, the maddening sense of helplessness I felt during those time-stood-still moments.
I wanted to reach inside that beautiful and precious head, grab hold of those hellish seizures with both hands, rip them from her brain, and crush them into oblivion. I wanted to fight to free my brave girl from their clutches. I felt such rage over my inability to fight this enemy attacking my baby, and I wanted to channel that rage into destroying them. Instead, all I could do was sit helplessly broken on the floor and hold her, knowing I wasn’t enough.
I couldn’t save my baby from what was happening to her. And that has now become daily life as Kathryn’s mommy. I feel so weak and so “not enough.” So infuriatingly helpless.
She has astounded a watching world through her sixteen years of life and fought so hard and so courageously to accomplish the impossible — over and over again. And now we are watching the results of those years of fighting, slowly disappear as these seizures eat away at her delicate little brain.
It required three separate doses of rescue medications Saturday night to finally bring things under something that at least resembled control. Scott then placed her sedated body lovingly into our bed where she could try to sleep safely between the two of us. None of us really slept much that night.
Her neurologist was out of town, but we stayed in close contact with his nurses, and he even called us to check on her. They discussed hospitalizing her, but we chose to hold off until he got back to town because we didn’t want her under the care of a doctor who doesn’t know her history the way her own neurologist does. One of the things we hear repeatedly is how unusual, atypical, even unique, her seizures are. They can be very confusing for someone who doesn’t understand them, and the wrong treatment could make things worse.
Her doctor returned to town on Tuesday and admitted Kathryn where they hooked her up to EEG and planned to leave her connected for as long as it took to get an accurate picture of what’s going on.
Sadly, this EEG painted a picture that is even worse than everyone expected based on her already-disappointing short EEG done a couple of weeks ago. It showed seizure after seizure, one after another — sometimes as many as six significant seizures per hour with many smaller ones interspersed between those. Most of these are generalized (affecting her whole brain), as opposed to the ones she has had in the past that affected localized portions of her brain. Many are subclinical, which means that there are few, or even no, outward signs that she is seizing, but these are just as damaging to her brain as other types of seizures.
The bottom line is that she is seizing even more than we thought, even in her sleep, and none of the medications are working.
They decided to remove some medications that are clearly not working, gradually wean her off of another that’s not working, and add some new ones. Her EEG the next morning did show some possible slight improvement in the number of seizures, as well as the spacing between them, giving us some bits of hope that maybe we are moving in the right direction.
They unhooked her and let us go home last night on these new meds, with the plan that further attempts at controlling will be done through continued communication with her neurologist while we continue charting any possible signs of seizure activity to determine whether we are seeing any progress or not.
The long-term plan is still implantation of a Vagus Nerve Stimulator (VNS), and we have a video appointment next Tuesday with our neurosurgeon to discuss plans for this.
Sadly, much damage has already been inflicted on Kathryn’s brain. She is no longer able to crawl, when she used move all through the house that way. On days that she can crawl at all, she moves very, very slowly, can barely hold herself up, can only go a very short distance, and sometimes her arms collapse under her causing her to fall. She can’t hold crayons or pencils, and she was SO close to learning to write her name by herself before this happened. We’ve worked on that skill for about three years, and she almost had it. She struggles to snap simple blocks together, when in the past she would snap them together in a long line that stretched all the way across the family room. Her speech is so slurred that it’s often almost impossible to understand what she’s saying, word retrieval plagues her so badly, and her perseveration (repeating words or phrases over and over and over again) is severe now. Her moods range from manic-happy to tearful and grumpy and sad. She even hit one of her sisters the other day, which is just completely out of character for her gentle, happy, and compliant personality. As soon as she realized what she had done, she dissolved into sorrowful tears. I fight tears myself as I type this.
I watch her fight so hard against all that is happening inside her brain. I can literally see her trying to pull herself out of the muddled muck that is her thought processes most of the time now, and trying so hard to stay focused or make her hands and body obey. It reminds me of that feeling of trying to wake up after anesthesia. But right now, the seizures are winning.
And no one knows if this loss of function is permanent or not.
We have reached out to her physical therapist to discuss starting regular sessions again (along with occupational therapy) to try to give her every chance of regaining these lost skills IF we can get the seizures under control.
One piece of happy news: the night we were admitted to the hospital, we also reached full funding for Kathryn’s seizure dog as the final donation came in! When I told her we had all of the money needed for her dog, she caught on to our excitement, and this was her reaction. The picture is blurred because I tried to snap a picture very quickly as soon as I saw that flash of our dear Kathryn and how fully she was grasping the significance of this news. In spite of the fuzzy quality, there is no mistaking our sweet girl behind those eyes, and the joy this news gave her.
Now we have a long wait (probably at least two years) to actually get her dog. I went to the gift shop and chose a stuffed dog for her, telling her that this one could be her “pretend seizure dog” while she waits for her real one. She, with lots of help from us, named her Stella.
Please pray for our girl. Pray for healing and peace in her struggling little heart. This is scary for her, and we see that fear and confusion in her face so much of the time now.
Please pray for our other kids. This is really hard for them to watch, and our sadness and concern affects them. Two of her sisters sat with Scott and me during that long seizure last Saturday night, and some of the others hovered in the hallway looking for anything they could do to help. This girl is so loved by her family, and everyone is hurting.
Please pray that we will not get so lost in our fear and our feelings of helplessness that we forget we can trust the One holding our baby in His hands. We can sometimes only whisper garbled prayers, but our hearts long to remember this truth:
“Whatever befalls God’s children — their joys, sorrows, comforts, crosses, losses — all are a part of a Divine plan and arrangement, whose issue and result is their good. That bitter pang which tore up my hopes by the root! that unexpected poverty! that anguished sickbed! that crushing bereavement! how can I write ‘good’ upon these? Many different colors, in themselves raw and unsightly, are required in order to weave the harmonious pattern. Many separate tones and notes of music, even discords and dissonances, are required to make up the harmonious anthem. Take a thread separately, or a note separately, and there may be no discernible beauty or use. But complete the web, combine the notes, and you see how perfect and symmetrical is the result. Here is the lesson for faith: ‘What I do,’ says God, ‘you know not now, but you shall know hereafter’ (John 13:7). The Great Physician knows that all the ingredients in His dealings are for our good. He mixes them.”John MacDuff (1818-1895)