For years this has challenged me, boldly questioned me--- Am I selfless enough, brave enough to be the one to Just Show Up?
As I read through Jill's challenge to write my own "Just Show Up" story, there was no delay in the sweet faces that came to my mind as I pondered who it is that has run with endurance to come along side me in the painful, most desperate moments of my story.
I first met Lily and Colleen when Isabella was about 3 years old. Although she was growing strong and healthy after a precarious start to her life, we had noticed she seemed to fall often, and wanted to make sure we weren't missing something. Her pediatrician agreed she needed to be evaluated, and as happens often in the military healthcare system, we were given a referral to be seen off base by a pediatric physical therapist. We were immediately impressed with Lily's skill and wisdom. She watched Bella moving around for 5 minutes and knew right away what was going on and what needed to be done. She also recognized a sensory processing disorder and was able to get Bella into occupational therapy with one of her therapy partners, Colleen. The small, house-like building where the smiles of these two women greeted us weekly began to feel like home, and at the same time Bella grew stronger and we saw her start overcoming some of the challenges brought about by her 30 week delivery.
|Water therapy with Lily|
During this same time, we learned we were expecting our fourth child, and our Tuesday therapy visits came accompanied with a growing belly to count the weeks. One of the first questions in the door was always how me and the baby were doing, and then a pleased smile as my pregnancy progressed smoothly week by week. Then, one cold day in March, I missed our appointment. That morning Mark showed up with Bella instead, and as Lily came to the waiting room to get her, she teased with Mark, "Where is Hannah, that baby didn't try to come early did she?" I'm told Lily was taken aback, feeling badly when he admitted that yes, in spite of everything having gone well so far, I had emergently delivered our youngest daughter at only 29 weeks gestation. At the time though, we were feeling confident; she was well taken care of in the familiar ambiance of the NICU, and we expected a similar, long, but positive outcome through another journey with a premature baby.
As hours faded to days, and Ellianna's stay in the NICU became punctuated with hard news and complications, Lily and Colleen became more than our therapists, and their familiar faces and kind spirits grew friendship beyond the purpose for which they had first come into our lives. We looked forward to seeing each other, kept in touch by text throughout the weeks, and sneaked in coffee dates when we could. When we learned that Ellianna would have cerebral palsy, Lily knew what we didn't, and pushed to have her enrolled to start physical therapy as soon as she was discharged from the hospital. This teeny, tiny, 4 pound little girl, showing up to flex her muscles on the big red inflatable ball. Who knew? Lily and Colleen also jumped in to help with her feeding difficulties, and Colleen was even willing to drive out to our home to get her started in occupational therapy so she didn't have to be submitted to the noise and chaos outside the house so many times a week.
These two women were so steadfastly in our corner, fighting for the best for our little girl, and encouraging us through the frightening unknowns ahead. I remember Lily saying perhaps Bella wasn't even the reason for our meeting, but that we would already have this in place when our littlest miracle came along needing it so badly.
As Ellianna's brain bleed turned to hydrocephalus and surgery and shunts, I wanted to keep her home in the protection of my arms, comforting her pain and keeping her from more. Lily knew better though, and she urged us forward, pushing Ellie to her limits to help her grow strength and gain weight, and even though my heart broke watching the tears of the struggle, I knew Lily pushed because she loved, and she wanted so much more for my little girl.
Our last hospital admission, when things were the darkest, bleakest bad... it seems silly, but I suppose I needed things to distract my mind, and I remember calling Lily's office to tell her Ellianna was in the hospital and we wouldn't be able to make it to therapy. In hindsight, I'm sure we could have no-showed and no one would have blamed us, but there I was, trying to keep a calm voice as the receptionist told me Lily was with a client and couldn't come to the phone. When she asked to take a message, I must have been out of my mind, because I think I said something like, "Just tell her we won't be at therapy because Ellie is in the hospital and the doctors don't know if she is going to make it." I guess that seemed normal in the numbed hysteria of my mind, but I was told to please hold, and 10 seconds later Lily's voice was on the other end of the line. My explanation was jumbled, and probably less than a sentence long, but that's all it took and Lily was saying "I'm coming up there," and the line went dead.
This woman, assigned to us for her livelihood, to straighten crooked ankles and weak hips, dropped everything, walked out on whoever she was with and showed up in a way that may have saved my life. I'm not sure how she got there so quickly (knowing what I know of Lily now, I probably don't want to know), and I don't know who she walked out on, though I hope they understood. She burst into our tiny room in the Pediatric ICU and she stood there in the middle of a situation most people would not want to imagine, let alone wade right into. She was there when someone came in and told us the CT scan showed 50-60% of our daughter's brain was already destroyed. Instead of fear or "I'm sorry's," she turned to us and said, "Don't let that discourage you, there are plenty of people who live with half a brain and live well. Don't let them make you afraid." So I tried not to. I knew if anyone knew this, it would be Lily, and she was the one from the beginning who knew what our little girl would need to fight and overcome, and had given her the means to do that. Lily left that day with a hug that spoke more than words could, and the promise of continued prayers. I don't know that either of us believed yet that we would be saying goodbye.
As reality gave voice to my internal fears, and we watched Ellianna slip from this life to claim her true royalty, I sent a simple text to Lily, telling her Ellie was gone. I don't remember if I got a response, but what I do remember is that just as quickly as she had come before, she was there again. Walking into the palpable pain of a room split by this life and the next, Lily and Colleen were standing on that sacred ground with us, tear-stained cheeks and weary eyes. I didn't know what to do or say, maybe nobody did, but presence was enough. I stood up, my lifeless daughter wrapped in a blanket in my arms, and I held her out to Colleen. I cringed at remembering this, because really, she hardly knew me at the time, and here I just thrust a most uncomfortable situation right at her... but she leaned right in. She took my daughter in her arms, this stinging, beautiful, scarred, and perfect reminder of the common thread of our lives, and she looked on her with every love a mother wishes for her child. She didn't complain or turn away from the discomfort of it, but she opened her arms wide, and in that moment these two women made a choice to embrace my hard story, to become characters in a heart breaking plot from which many others ran. I do not remember any of the words spoken there that day, maybe there weren't any, but it doesn't matter because what I do remember is that they were there, and that was all my soul could and needed to hear that day.
In the days to follow, as I avoided people and places and questions and awkwardness, our hour-long, twice a week therapy appointments dropped to half an hour once a week, and it was still a safe place to land. There were days, and still are, that I have to push myself because walking in to see the tiny room we used to nurse in, and the big red ball Ellie used to perch on is just so fresh and raw and I feel as if my million pieces will fall apart again, never to be gathered. But these women, they see that in me; they read the gray or the green of my eyes and they know my heart without pressing me for words.
|Colby, on the same big ball Ellie used at therapy|
I wish I could say that was the only big trial, and the last few years have been a smooth sail of strengthening friendship, but what I can tell you is that again and again...and again, Lily and Colleen have shown up, both in the happiest celebrations and the devastating losses of life. They have always given me the freedom to grieve, question, cuss, or withdraw without so much as a judgmental word. They have never pressed me with advice or timelines or ultimatums, but have supported me wherever I'm at. They cheer me on even when my dreams seem crazy, and pray me through the days I don't believe I will make it through one more blow. Lily and Colleen have chosen to see deeper into my story, to see that it is not just a story of loss, but one of healing, of beauty, and sustaining grace that can only come from the One who wrote my story. They choose to remain in the cast of people throughout the chapters of my life, without expectation, without apprehension, but simply to Just Show Up.
|Colleen and Colby|
|Lily working with Colby|
|OT with Colleen|