Update time...Brandon and I got home last night around 7pm. Thank you, Lord. Every time we come home from a stay in the hospital it is like we are seeing, experiencing and loving our home and family time on a deeper more heightened level. We all slept beautifully, our beds were cozy and everything felt RIGHT being under the same roof with Briana and Matt again. While in the hospital, Brandon had three days of IV steroid therapy. This is the standard treatment for kidney rejection. I learned that his biopsy results were borderline rejection...but that there isn't really any distinction between that and advanced rejection because one will lead to the other if not arrested and reversed by treatment. The doctor said, "Thank God we caught it when we did." We wouldn't have had to go stay at the hospital if this hadn't happened in the middle of the weekend. They would have sent us for outpatient IV treatments for 3 days. We will continue our thrice-weekly dialysis sessions and plasmapharesis sessions. We meet every Thursday with the transplant doctors for check up/blood work/ data analysis. They will do another biopsy in a few weeks. We will see what the future holds...in the future. And this will be how it all plays out.
I have to remind myself constantly that this is normal, this is OUR normal. I can remember when the kids were young and we were new parents learning how to cope with this disease that it felt like real life was when Brandon was in remission. I'd sort of hold my breath during his relapses and wait for everything to be right, to feel safe, for remission to arrive in order for me to exhale. I've learned that our real life is what's happening ALL the time, not just when Brandon is well. I'm learning to exhale into all of this, it's how I stay present and combat crisis mode. Crisis mode for me is deadly, it is being in fear and in a constant state of waiting. Crisis mode is not a place I can live comfortably, or safely.
People tell me that I am strong all the time. I hear it from friends, nurses, surgeons, strangers...and it is so kind, so sweet to be told such a nice thing about ones self. I think every parent caring for a child with serious illness hears this. But I always feel incredibly, deeply unworthy of the compliment. I mean, you guys...you just don't know. There have been times I've crawled into bed and I just could not function because I was so paralyzed by my fear about Brandon and the terrifying unknown future. When Brandon's been in the hospital for long lengths of time with no end in sight and it feels like he's never going to be okay and every terror of my heart is playing across the movie screen in my mind...I am NOT strong. But there is this Power that comes and finds me in those times and reminds me of who I am. If someone could die of fear, I'd be long dead by now. But the Grace I receive in the Eucharist at every Mass, and from the hands of a tender-eyed African priest at the hospital...that is the Power that sustains me and drags me out of bed with the echo in my heart of what I KNOW to be true. I am a daughter of the King, we are carried and loved beyond measure, God wants only good for us, we will never ever be abandoned, and this world is not our home. And I can not even put into words the Eucharistic Graces that make me who I am in the midst of this life of ours. I recently heard someone say that "We are made for this." Or I read it somewhere...I have no idea it's origin. I've been thinking about that daily. I was made for this. For THIS. The comfort that statement gives me is beyond...it's beyond what I can express to you. When all of this feels too much, too long, too scary, too heavy...I remind myself that I WAS MADE FOR THIS. I might be unloading the dishwasher and the breath gets knocked out of me as I get blindsided with a horrific image in my mind's eye of what the future could hold for us, I say, "Brigid Eileen, YOU WERE MADE FOR THIS!" And the Eucharist is the food that sustains me in the midst of what I have been called to, and what I have been made for. If I didn't need the body and blood of the Savior coursing through my veins and in my cells and in my very DNA, I'd be my own God. But I am not my own God. I can not manifest Grace any more than I can manifest divine healing for my child. I can not remotely attempt to be the best version of myself, the person I was created to be, without this essential food in my life. I'm not strong. But Jesus has got me. And so I get out of bed another day, hug my children, love my husband, play Uno, and instigate a dance party in the kitchen.
Please keep the prayers coming. You can't begin to imagine how they wrap around us and remind us that we are SAFE.
Love to all of you, my dear prayer warriors. xoxo
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