In Hydra, the wildflowers that were my medicine for so long grew on the mountain. We walked through fields of yellow, terracotta roofs clumping down to the Aegean sea. We saw no other travelers hiking up steep switchbacks through virgin pine, rock-rose peeping out from the parched soil of the mountain steppe. At the Monastery of the Prophet Elias, 500 meters above the port, monks were crawling through the little door to the temple and shaking out rugs, dust mites shimmering around their robes. We both teared up at the top. “Look at you,” you said. I was healed and pregnant. It was easy to have an abundance of faith and courage, then. G was the size of a poppy seed in my belly, and I didn’t need a test to tell me so.
The path to get to this point where I was standing on top of the monastery began 10 years ago. When Dan and I began building a life together, we threw all our eggs in his career basket: we’d now moved three times around the state in 7 years and more than that if you included stints living with our babies in airbnbs, hotel rooms and our travel trailer. I had prided us on the ability to move swiftly when needed. While my husband traveled for work and was on call, an essential employee for emergency events, the family enjoyed the stability of life with me as the stay-at -home-parent. It was a lot of work relocating all the time, and we were a one-income family by choice, but we had it all, or so we thought. The house, the job and even the stay at home mom dream didn't mean much when I could not get out of bed due to pain and fatigue as our life continued.
You think of the strangest things lying in bed when you feel that type of pain and disconnection from your body. I thought of a regular I had at my first bartending job, Leo. He drank Branch bourbon and water and was a limo driver. His advice for quitting smoking was this: throw ‘em out the window. Leo came to the conclusion when he was sick with pneumonia on Christmas, he could hear everyone else enjoying the turkey, mashed potatoes and homemade cranberry relish just outside his door and nothin’ tasted good so he chucked his beloved smokes out the window, never looking back. Oh, how I wished I had anything to chuck out the window when I laid up in bed waiting for years for answers.
None of this existence seemed fair or to line up with how I built my life. I had quit smoking and drinking completely years ago. I ran daily in the forest, I cooked most things from scratch, I skied and paddled and biked for miles depending on the season. That had all slowly been stripped away as my strength waned. When the doctor said the word celiac, as shocking as it was, I was relieved to chuck my favorite foods the window. I would’ve done anything to be out of bed playing with my 2-year-old and -4 year old daughters.
Yet through all this I now stood on top of the Monastery overlooking Hydra.
A few months earlier I stood in the shower and God spoke to me about the third child now in my womb. I heard a still, small voice reply that He wanted to bless me with a third baby, before I was even healed. I reflexively said hoarsely “No!” It was more a gasp than an utterance. I am no Mary. I thought of how I was never without an enemis bag during pregnancy, or without “letting a little blue pill dissolve under my tongue before my knees hit the floor each morning,” as one woman so aptly described the experience of severe pregnancy sickness.
When I told my mother she said “NO SIR,” in a similar gasp, when my husband told her at the local ice cream shop. She does not normally call Dan “sir.” It’s a very old-fashioned, New Englandy way of cursing. She was scared for my health, too. The Bible says not to be afraid 365 times. It is the most repeated command in the book and it may also be the hardest to obey. When I prayed over the words I heard from God about my pregnancy, I kept hearing that I’d have a Christmas baby. Even though I very much wanted another baby, I was afraid of pregnancy after my second child. I consulted the doctor first. God bless him for assuring me; with my autoimmune condition now in remission, he did not believe I would be that sick again.
The Holy Spirit put those personal words of encouragement in the doctor's mouth. Even when he uttered them, he looked like he wished he hadn’t; he didn’t want to over-promise and under-deliver. I don’t think it was the autoimmune remission that kept me from getting as sick as before. It was the belief that I wouldn’t be sick that he planted in me when I couldn’t muster it on my own. God works with and through His people.
When G was born early on December 14, I thought of Mary, who was present in thought in my other births. Leading up to the birth she was on my mind when I was so anemic I couldn't get out of bed without an iron transfusion. I could not control the pregnancy experience and neither could Mary. I thought of Mary on the donkey, Mary in the elements, Mary among strangers in a strange land.
When baby G was a mere 4 days old, her doctor called me and said we needed to go to Portland first thing in the morning; her newborn screening showed a positive result for a condition we had not heard of before. We drove in a snowstorm with her strapped in, sleeping like a little mouse. The Columbia River Gorge was white with snow, we blasted the defroster continuously as we crawled along the highway that snakes its way eighty miles to what locals call the hospital on the hill— OHSU Doernbecher Children’s Hospital. I prayed the whole way.
It was there G was given her battle to fight: SMA type-1.
The room spun around, exactly like I was going to pass out, blackness peppered my vision, my throat a frozen knob of wood, sodden with that same frozen river water we had just followed in the dark.
I cried, but disassociated so loud it was like a jet engine in my brain. I couldn’t hear or see clearly through the white noise for weeks. That day, I prayed and listened to worship music but I also blasted old favorites: angst alternative rock of The Old 97s and Bayside. I wanted to feel pain in someone’s voice that matched mine. “I’ve been up all night trying to find a way she doesn’t have this,” my husband cried to the doctor who teared up too as she discussed treatment options that day.
There were long days in the labs and hospitals as we prepped and isolated for the big infusion known as Gene Therapy.
I thought of many things like; what would it be like to be anemic and pregnant in any warzone, in any country right now, and not be able to access a newborn screen? What about all the places the SMA screen isn’t yet available? Our sheer luck, privilege and blessings were astonishingly apparent.
One of my favorite books in college was a biography, “Molly, Spotted Elk, A Penobscot in Paris.” In the book, Molly is an expat Penobscot dancer who hiked her baby out of a WW2 war zone over the French Alps to safety; meeting her husband and reuniting her little family, alone. I had never realized it before, but maybe subconsciously I had envisioned a similar fate if the apocalypse or bad times hit. I had always muscled my way out of most situations. Four years earlier, I had been raising my babies in the Cascade Mountains where I was miles from the nearest town, pushing a 250 lb snowblower around and chopping wood. Within a short 2 years, my body seemed to be failing. I could barely mother, let alone carry my babies from any warzone like Molly had. I was completely humbled by not being able to climb the mountains I faced alone. I was 37 at the time with a baby and a 2-year-old, sitting in specialists’ waiting rooms like it was my full time job.
Now, I am 40 and I have crossed a couple deserts like Moses, but my healing is imperfect. I’m still in the wilderness, not the garden, but I’m starting to have my eyes opened by the miraculous and mighty goodness in my life. It’s not only G. I am a testimony to so many things I’ve been through since the last time my hands pushed that snowblower sometime in 2021. And everyday, my eldest daughter A tells her baby sister she will roll over. “You’ll crawl, run and jump and play with us soon. Your legs will grow big and strong!” A has no idea that her much-wanted baby sister's every milestone is a miracle, that her words are a prayer affirming this.
“So many of us fought for your girl.” One mom said to me when discussing newborn screenings, now in 50 states. It was too late for her daughter in just 2020, the year my second daughter was born. It takes my breath away. Being physically strong, mentally fit or psychologically prepared is not real bravery, but a counterfeit for the courage the real things we will face in life require. Now, everyone kept telling me how brave I was being for G during her diagnosis and treatment, but what other option did I have? In retrospect, the brave thing my husband and I did for our kids was putting down roots and investing in relationships. We had moved to a small town intentionally, like the ones we were raised in, just a year before G was born.
In our new home, our new(ish) friend Pat offered to watch my now 3 and 6-year-old daughters while we focused on newborn G’s treatment in Portland. My stomach churned with the imposition on Pat’s busy life. But she did it with grace and a cheerful heart. Pat watched my children for 8 days, and it wasn’t just a huge, generous, gift that got us through a hard time. Instead of us offering our children the ragged crumbs of Dan and me while we nursed their sister in Portland, Pat poured into our children in our home. She filled them up with music, books, walks, games, attention, and most of all, I saw little clues for me left everywhere in her care of the girls. She supported me like a mother, noting items like when we needed more towel hooks at a level for little hands and that A would thrive in school now unlike before. The advice was love for me and my family.
It was validating to accept help, and most of all, it gave us hope for a future. For the best yet to come during a scary time.
Real bravery is asking for help and real strength is lifting up the meek and downtrodden. It’s knowing, when you’re doing a bit better than someone else in some way, it’s not because you’re so great at life, it’s: there but for the grace of God go I. It’s also knowing you’ve been there before, and you’ll be there again. No one is immune to the wilderness. Even more so, it’s trusting God.
Abraham put Isaac on the altar, trusting Jehovah-Jireh, He-who-will-provide, to make a way through an impossible situation. When I put my 14-day old baby girl in a hospital crib, or on the gleaming steel table for her repeated blood draws, I whispered His names: Jehovah-Jireh, Jehovah-Rafa; provider, healer. God provided a ram for Abraham and Isaac; He provided Zolgensma for me and G.
During our stay at Doernbeckers, another friend Kay sent me this scripture about how Moses was too weak to get through a big battle. His friends held his arms up and that battle was won with their support (Exodus 17:12-13).
Kay said,
“When you are feeling weary and like you can't pray, you are NOT alone. Just know your church family is still lifting you all up in prayer, so we will be Aaron and Hur for you, and the enemy will be defeated.”
In March, Pat and Kay threw G a gorgeous baby shower! Again, other women knew what I needed more than I did during that time. They were celebrating G like a “normal” baby, (which she is!) sitting with the women who prayed over her, dressing her in the adorable gifts they brought in splendid bags and ribbons, healed my ability to hope. For the skeptics who write me and say “great blog, but they could do without the God stuff”... let me tell you, it’s all God stuff. Medicine alone cannot heal or be developed without divine intervention; no one can ever say in one blog all the wonders we saw in our great adventure so far with G. If you gave me 40 more years it would still not be enough time to tell you all the complexities of the story and the lives that became intertwined with ours through God's good work.
God and His people are loving G and our family the way the Velveteen rabbit was loved until he was real. Like the tattered velveteen rabbit, G’s healing became real even though it was ugly. These friends do not see my shabbiness and if they do; they love me anyway. The word used for hope in Aramaic in the Bible is himnota, which describes a nursing mother. When I nurse baby G, my hope for her is infinite, unconditional. I’d take a bullet for G, pray to take her place if she could not have SMA. That’s how much God loves us. That’s also how much His children are called to love each other. It’s an embarrassment of riches.
Kay made an “adventure awaits” cake for G, with world-traveler themed decorations in bright Aegean-sea blue and spring grasses, so much like Greece where G was already with us I haven’t even told Kay yet, it was so uncanny. And a baby in itself, a Christmas baby with the predicted due date of 12/24/23, with the planned middle name Moses, seems so spot on Yahweh must be laughing at His own cleverness. Even during the infusion at OHSU, G was ministering to the nurses, other patients and children. Everywhere we went people wanted a peek at tiny G, and though we were overprotective, wrapping her in our baby carrier, we felt the hope she represented. Another mom wrote to me: “As Moses means ‘delivered from the water’ or ‘to draw out’ …I pray right now in Jesus name that He would draw G out of the deep waters this diagnosis threatens, and that she would simply bear a testimony of goodness all over her life.”
I will be 41 later this month and the cliffside in our small town home is aflame with yellow balsamroot, so similar to the wildflowers in Hydra. In the pine woods here, the bright orange heartwood of the manzanitas gleam with April showers and a pal writes to thank me for information about rock rose tea. She tells me we can brew manzanita leaves and drink the tea to prevent poison oak.
God plants medicine next to the poison so often in life. And he planted G right next to her medicine, too. As we trek back and forth to Doernbeckers God gives us the courage through our friends holding up our weary hands even when we cannot hold our own weapons anymore for the battle. Bravery is the bitterroot that will bloom next; saving all years’ rain in one taproot. The rainwater in the roots is like God's special plan for getting us through the rocky, hard, dry times when you can’t even remember the rain itself. Spring’s colors are arrayed as medicine where each spring is a dose of holy belief in the goodness of His kingdom here, in the land of the living.
Pat and Kay are pseudonyms