We are just over 2 weeks away from Will's admission into the Johns Hopkins Epilepsy Monitoring Unit. The time is going kind of slowly, I think mostly because I am excited to find out if and what our next steps are on this battle with seizures. There are also a lot of logistical issues to work out with our coverage plan, and not knowing how long we'll be there and the duration of that upheaval kind of adds to the nervousness.
After I found the photo of Will and Luke in their 2007 Easter finest, I sat in front of the computer and clicked through some of the NICU photos with Nate. We didn't say much. As much as I have written about being strong and getting over the fear of that time, those photos still get to me. I don't know what emotion it actually is that I am feeling. I just know that in a matter of seconds, I am sniffling and wiping away tears. There is no sobbing. Just sadness, I guess. Memories of the harsh reality.
I have the hardest time with the before and after photos of Will and Luke's first shunt surgery. The day of surgery, the neurosurgeons had written YES on each boy's head in black permanent marker. Luke's YES was on the right side of his head, Will's on the left. The locations of their future shunts. The permanent bumpy reminders of prematurity.
After surgery, their heads were wrapped in gauze, they were still affected by anesthesia, and their bellies were yellow from the betadine wash. We snapped these photos through teary eyes. These are photos that we've shared with few, and that I still am not ready to share with the world. They're raw. They're pain.
And most of all, if this EMU visit indicates that Will is a candidate for epilepsy surgery, they're an indication of what his future will look like. Gauzed wrapped head. Medically induced coma. Beeps. Monitors. Surgery. Large scars and stitches.
From everyone whom I have talked with who has had this surgery, they've never regretted it. They don't remember the first couple of days after surgery, when their speech was distorted from the trauma in their brain. They don't remember the bed pans or the pain meds or the neurologic tests that they underwent once every hour. But what they do remember is the lightness that they felt as they were able to be weaned off of their heavy anti-epileptic medication again. All those side effects lessening. Freedom.
This is what we want for Will. Freedom from seizures. Freedom to sleep peacefully. To be off of these medications, or at least be on lower doses of them. Freedom for his brain to develop further and allow him to learn new sounds and who knows what else!
We just have to get through these next couple of steps. And realize that though this is a scary step, it is positive. It gets us closer to freeing Will's brain from the electrical firestorm that holds him back. This surgery is not a cure for his cerebral palsy. Post-op, he will continue to be in a wheelchair and have muscle spasticity issues. But with the lack of seizures, his brain and development will be freed to grow.
There will be other photos. There will be more fear and tears and prayers abounding in the weeks and months to come. That's ok. As fearful as we were of those shunts, and that surgery marring the heads of our little little boys, those shunts saved their lives. They might not have beautiful scalps. You can see huge 'J' shaped scars when their hair is cut short. But they themselves are beautiful. No matter what those post-op photos might look like.