It had been days and days since we’d all been there together, and we were finally back. Tired and undone. Numb but determined. We’d left the house to get help for our baby, and returned with a new reality that would change everything about who we were, how we lived, and how we experienced life so completely that the former versions of who we were would one day be unrecognizable, even to us.
Jude had a diagnosis. Jude had a treatment protocol.
In the 72 hours since we’d all been in our house as a complete family, Jordana and I had assumed an entire library’s worth of new identities. Husband and wife, mother and father had to move over and make room for our new roles as nurse, researcher, advocate, and pharmacist.
There in our little house on the corner, no doctors or nurses were there to guide us along, no beeping monitors, no wires or tubes or hourly vital checks. It was just us, our thoughts, a very ill 5-month-old, and two other sons caught in the throws of a new adventure none of us asked or for wanted.
How do we do all of this?
Can we do this?
What if we do something wrong?
Who can we talk to?
How do we tell our friends and family?
Will they even understand?
Will we be alone in this?
How do we face this together?
These were just a few of my thoughts in the beginning, and they’ve never gone away in the past ten years of our journey with Jude.
But, in that moment, all we knew was that we HAD to stop Jude’s seizures. Typical epileptic medications weren’t effective, as he had a rare type called Infantile Spasms. If they continued too long without proper treatment, or if they rejected treatment, they could be devastating to his development, andeven his life. They gave us a box of small vials filled with liquid hope, a box of tiny syringes, and told us to inject Jude once per day, alternating legs. They said it was the only way.
It was excruciating, and Jude came to the point where any time we laid him down, even just to change his diaper or for a nap, he’d scream in anticipation of another shot into his thighs, bruised from being punctured over and over and over.
The 19th Century Lebanese poet, Khalil Gibran says that love is “To know the pain of too much tenderness. To be wounded by your own understanding of love; And to bleed willingly and joyfully.”
It’s a haunting passage I’ve carried with me for years. To bleed willingly and joyfully. What a stunning, heart-pounding thought. Comfort was simply no longer an option for us, as much as we longed for it. This was, and still is, a massive learning curve for me. Jordana, faithful matriarch as she is, stepped into all the new roles in a way that seemed effortless (I’m sure it wasn’t), while I lagged a bit behind.
Jude’s diagnosis of Tuberous Sclerosis Complex rearranged literally everything I thought about everything. Identity. Life. Faith. Love. Marriage. Fatherhood. Fear. Hope. Normal. It all shifted.
Since the next few chapters of the story progress a bit faster, I’ll close with just a couple evolving thoughts on what I’ve learned about love. Growing up, I’d always been called a romantic. I still have notebooks (pre-Moleskine notebooks) filled with silly poetry and writings I truly thought were profound truths about love and romance and marriage and life. I had lofty, floating, grandiose ideas about how it should all play out. Not quite skipping through fields of flowers without a care, but close.
But, love isn’t lofty. Love is very very human. It’s present. It’s showing up, even if you don’t quite know how, or what to do when you’re there. Love isn’t about making sure all the right conditions are there, it’sabout being and embracing because they never will be.
Jude doesn’t know anything other than what’s right in front of him. He doesn’t worry about what may or may not happen, he just is. He hurts, he laughs, and he trusts.
The last few weeks of our current day life with Jude have been very tough. He has a few lingering health issues we haven’t been able to identify yet, an injured arm, and his disposition has caused him to be more miserable than not. This morning, I fed him chocolate oatmeal like I do just about every morning. He scarfed it down, then immediately got up to secure his favorite spot on the couch. As I walked by him a few moments later, I felt him grab my hand. I looked down and all I saw was his eyes looking up at me and a giant smile as he swung my hand back and forth.
Love is…to bleed willingly and joyfully. I don’t know what all Jude knows for sure, but I’m convinced he knows he is loved. I willnever be able to repair what’s broken in him, but I love him, on the best days and the very worst.
After several weeks of daily injections, the instructions were to begin tapering off the medication and see what happens.
In what felt like the first joyful moment in months, we realized Jude’s seizures, for now, had stopped. A small battle victory in a very large and endless war. In the midst of that momentary reprieve, we received some troubling news: our current neurologist didn’t know what to do with Jude next, and there weren’t any other pediatric neurologists with expertise in his disorder within hundreds of miles.
So, what were we supposed to do now?
Read the next post in this series here: