I went for a run three night ago, Saturday night. I took the normal route through the neighborhoods around us, taking in the smells of campfire and crushed leaves as cool air filled my lungs.
The weekends are hard for Josh and I. Josh is used to being gone at work all week and only seeing Tage for an hour or so at night, and so when he spends entire days with Tage, with the constant reminder that this sweet boy we love so much is very sick, that can get really draining really fast. Tage started having some serious tremors this weekend, and it broke my heart to watch my baby shake uncontrollably. I pressed my hands firmly against his legs until the shaking stopped, and then picked him up and held him close to my heart as I kissed his sweet face. My baby’s face. The cloud of sorrow, of the future, of death, of possibility is always around us. I am so relieved to have Josh with us for the weekends so I’m not by myself, but then when we slow down on the weekends and our emotions catch up with us, we tend to cry. We hold each other and hold Tage and cry. So yeah, the weekends have been hard lately.
So I went for a run Saturday night. I made my usual left turn on the normal route without thinking about it, and I noticed the house in front of me had a certain glow which prompted me to turn around.
Boldly behind me was the most gorgeous canvas of color in the clouds, a sunset created by an artist for sure. I know some you saw it, too, because there were pictures of it all over Instagram that night.
And to think if I had taken my normal route and not turned around, I would have missed it.
So, I changed my course and ran west for the next mile so that I could just watch it. How can you look at something that vast, that beautiful, that creative and not think of God and His power, His might, and His love? I knew He was with me, and I knew he was listening. So in between strides and breaths, I told Him how exhausted I was. I reminded Him that I did not want to walk this road. I begged Him to strengthen Josh. And I gave a small but very serious shout-out to my mom, reminding her that she is closer to Him than me right now and to put a little word in, to rally some of her buddies up there and start being the squeaky wheel in God’s ear. But then I saw the sunset again and knew He was right beside me in those minutes. And just then, I got a text from my friend who told me she had come across this Scripture today in the Message and wanted to share it. It was the perfect timing for this reminder:
“So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever.” 2 Corinthians 4:16-18
I remember the first time I heard that verse from the Message was when it was read at my mom’s funeral celebration. And we did call it a celebration because we did know that we could celebrate, just because of exactly what that verse says. That’s what kept me going during those dark days. That was my Hope. He was my Hope.
So I kept running. I pictured Jesus jogging beside me, listening to me cry, but there He was beside me. He still hasn’t abandon us. He’s still reminding us that He’s got it. And somehow, with the sunset and scripture, I was able to rest in Him for a while, begging Him to help me trust that He’s still got it. I need to be reminded of that every single day right now.
The sunset finally faded completely under the horizon and the sky grew dim with the coming night, but I was shrouded in peace.
We heard some more darkness today. My friend Monika and I took Tage to the pulmonologist who will be following his case up closer to our home rather than down at Riley. He is going to be a very important person in our lives in these days because Leigh’s Disease patients usually die of respiratory failure.
The appointment was right when Tage was to be going back down for a morning nap, so he was fussy. Uncontrollably fussy, for Tage anyway. He kicked a bit, screamed, his face turned red, and he tremored on the table. Monika tried her best to comfort him, rock him, bounce him, but he would not be comforted…until I picked him up. He instantly settled. Oh, how good it feels to know my boy knows his momma. We don’t see smiles or hear laughs, but I know he knows me. I hope he knows how deeply and desperately I love him.
The pulomonologist hadn’t met us yet, until today, so once again, I was asked, “So tell me about Tage and what has led you here,” and once again, for the thirty-seventh time, I told another doctor the story, and I held it together until, “…and so the working diagnosis is…Leigh’s…Disease.”
The doctor admitted that I probably knew more about the disease than he did, but that he would do some more research and that what he thought he remembered was that it was a degenerative neurological disease. “Yes,” I said. And I told him a few more things that we knew about it. He sat there in a thoughful silence for a few seconds, and then said, “Wow. I am so sorry. I would be an absolute wreck and unable to function if I were in your shoes. I just cannot even imagine what you are going through.” I appreciate doctors who aren’t afraid to act human.
He stayed with us for over an hour, probably skipping his lunch break, to read all of Tage’s chart and then talk with me about my concerns. He wanted to have a conversation about Palliative Care for Tage, which just means how we relieve pain for someone, but the only terms in which I’ve heard it in the past months are when we’re talking about relieving the physical pain leading up to death. My heart sank. “Are we getting that close?” I asked him. “No, not yet, but I am concerned with the level of decline you’ve seen in him.”
And so we spent the next 45 minutes talking about my son’s death.
I cried. Monika cried. The doctor was compassionate while also giving pointed answers to our questions. It was as a good a conversation as it could be, I suppose.
I walked out of the hospital in a daze. Monika pushed the stroller with a sleeping Tage in it, and then she reached over and grabbed my hand as she walked us to my car. We walked in silence.
I know what medicine says. I know the doctor sees no hope for Tage. I think the doctor would be shocked if Tage made it to his first birthday. He says that a cold would be bad; the flu could be fatal. And yet, one of the staff at Riley told me, “Molly, he will get a cold. Don’t put so much pressure on yourself to prevent it.” What is a mother to do now?
The stage is definitely set for a miracle. Medicine has done all it can. If Tage is healed from this degenerative neurological disease, everyone will know it was only The Lord. He is definitely capable. He is sovereign. He is not obligated to do anything. He owes me nothing.
You have no idea how hard it is for me to say this.
Tage is not mine. He was given to Josh and me by the Lord Himself. On Tage’s birth announcement, we used that verb “given to Josh and Molly” intentionally, and we had no idea then what that verb would come to mean. Tage belongs to God. God loves Tage more than I do, more than I can possibly imagine. I would die for Tage. He already did.
I don’t understand this. I hate this whole thing. In fifty years from now, when I am eighty years old, I can guess that I still won’t understand it.
Yet, there is grace. I thought I would bawl the whole way home from the hospital after the appointment, but I didn’t. I took deep breaths. I remembered as I drove along the roads in the town I’ve grown up in, that God has been with me all of these past 30 years. Memories kept popping up as I drove home of all that has happened in my life in this town, as I passed my middle school, got close to my elementary school, passed where Mom used to work, where my grandpa worked, as I traveled along some of the same roads I’ve been traveling since the day my parents brought me home from the hospital and to the little house at 541 1st Avenue NW. God has blessed me more than I deserve.
I pulled into our garage. I brought Tage in and set him in his seat for a feeding. I made his bottle and hooked him up to his lunch. I held the tube while trying to prevent him from pulling it out and pouring in more all at the same time. I wiped his sweet mouth. I changed his diaper. I took in the scent of his soft hair against my cheek. I savored every minute, and I had a peaceful heart while I did. A peace that surpasses any human understanding. Thank you, Lord.
And you’d better believe I am still praying for a miracle. Some people may say that I am just not willing to face the truth of what medicine “proves,” but I am Tage’s mom, and praying for him and for a miracle is the only thing I can do. It’s the only way I know how to fight for him, and I will not stop doing it. I will not lose Hope all the way up until the last second.
God has shown time and time again how He comes in right at the last second…He did with Abraham and Issac, with Moses and Pharaoh, with the little girl who had been dead for hours by the time Jesus arrived. Up until the last second, I WILL keep praying for Tage. I will continue to hope as long as the Lord continues to entrust him to me.
God is able.
“Jesus loves me, this I know,
For the Bible tells me so.
Little ones, to Him belong.
They are weak, but He is strong.”
Carry us, Lord Jesus. Wrap your loving arms around us and let us feel Your presence. I know what the doctors say, and You are the only One who can bring healing to our son. And even if You do not, we will continue to serve you.
Thank you for Your peace and the reminders of Your presence in the midst of this darkness.