Today is Memorial Day, a day set aside to remember those who made the ultimate sacrifice for our country. As the wife of a veteran and the friend of those among the lost, this day is heavy with memory and meaning. I’m thinking especially of Will Lindsay this morning, who died serving in Afghanistan just over three years ago. Will and Derrick were on the same special forces team, and they shared two homes together before we left for Denver and medical school. He was a good, good man. And he was a brother to Derrick, bonded by war and ordinary life, and the entrance into marriage and fatherhood around the same time. Above all else, he was a family man. He delighted in his wife, Sarah, and their four daughters. At his memorial service, a teammate shared advice Will had given him when he was still fresh from training. You will be away a lot with this team, but when you are home, be completely home. Put away your phone and give your family all of you. I know Will lived that, playing blocks, board games, and Barbies on the floor for hours.
I will never forget the moment I learned of his death or the moment I told Derrick, pulled from surgery to find me and Eliza in a call room waiting. The pain was physical, and the “what-ifs” relentless. We drove to his home in shock and collapsed there in tears with Sarah and old teammates. Once again, the floor had dropped out beneath us, violently and unexpectedly, and once again, every single other thing in life shifted into what I believe must be its proper place. Derrick’s imminent test, the long hours in residency, even Eliza’s health struggles and diagnosis paled in comparison in the light of Will’s death. It carried with it a finality that stripped us raw, pulling back the illusion of control we cling to and shedding the burden of worry we attach to a million things that really don’t matter.
It brought me back to that NICU perspective, deepening what I thought I had already learned and expanding it into new channels of pain, wisdom, and gratitude. It was utter devastation, loss beyond measure, and it was also intense love. You could feel it in the hugs and see it in the tear-filled eyes around the room that night and for so many days after. We needed each other, and we knew it. It wasn’t as much a new lesson as it was a reminder that this lesson – the bursting and breaking of our hearts – is worthy of our attention, our time, and our care for each other. May I live a life worthy of Will’s sacrifice…a continual thank offering to those who have given of themselves in a million different ways. And may I be a giver myself, looking first and foremost to the cross as the guide to what true love looks like. No greater love than this…that one may lay down his life for a friend. Amen and amen.
We are at my dad’s house in Colorado where internet is slow and cell service is spotty at best, and until our marathon of appointments for the PWS Clinic next month, we have no plans other than visits with family and dear friends. Before we left, Eliza was averaging six therapies a week…speech, occupational, physical, and aquatic. And when we return home, we’ll be adding equine to the mix. But for now, it is all on hold. I can’t tell you how much I’ve craved blank pages in my calendar after months of jam-packed days. We’re all relaxing into the rhythm of rest and play…there are fewer meltdowns, fewer tears, and less hustle. And it got me thinking that while this isn’t sustainable, perhaps neither is our status quo. Perhaps instead, we should be looking at making a move more towards that elusive balance I know everyone seeks and few of us find.
The tricky part is, every single thing on our schedule feels – and IS – important. Eliza is coming to the table with enough cards stacked against her, and if she’s going to struggle because of things she can’t control, then I feel this tug to do everything in my power to give her the tools and skills to level the playing field, even if just a little. Having a large team of specialists dedicated to doing just that is a tremendous blessing and a luxury I know is not accessible to all, but the truth is, it’s also so hard. Hard to schedule, hard to maintain, and hard to balance with all the other “real life” needs and demands. Most importantly, it’s hard on Eliza.
The last few months have been especially rough for reasons I still don’t totally understand, but it stands in such contrast to her now. Just today, she’s already caught (and named) minnows, looked for gems in the rocks around the property and set up a rock shop with her sisters, and dug happily in the garden. And she’s doing it all with a lightness and joy that’s mesmerizing. That has to weigh in. That has to mean something.
I think about what’s best for Eliza, and I can argue it from a million different angles and never be right (or wrong). I know she needs therapy and intervention and activity, but I also know she needs rest and freedom from expectations. Not just in the summer weeks away but all year round.
There is a picture of Derrick holding Eliza less than an hour after we got her PWS diagnosis. I look at it and am transported to that moment. They both look so serious, and I can tell even in just his lips the weight he felt as he held his tiny baby against his chest. It was a yearning to protect her, to hold her close, to absorb any pain or fear or challenge and take it on himself. We can’t do that, of course, but every parent who has held his or her child for the first time knows that instinctual desire to shield her. A part of your heart beats in another’s, and from what I can tell, that never goes away. All of us will witness pain in our children, but it’s so unknown most of the time. We may walk alongside our children as they encounter the loss of a friend, struggles in school, heartbreak, addiction, injury. But we rarely hold our two-week old knowing that she will feel insatiable hunger, that she will struggle in friendships and academics, that she may not grow up and leave the house for college or a house and family of her own. And I will say, getting the diagnosis brought all that in play. It was as though we had a crystal ball for at least some of the challenges she would inevitably face.
The problem with crystal balls is that they take our attention away from the right now, and they sometimes (or for me, more accurately, always) change the way we walk into tomorrow. If I had known the day Eliza was born that we would spend the next five weeks there or that we would be hospitalized another six times before her first birthday, I think it would have broken me. I would have lived in dread for the next hard thing, paralyzed by the fear instead of leaning into the love. And there was so much love. But it doesn’t change the fact that that very night, and for many after, I woke up to the re-remembering not of hopeful news but of our devastating diagnosis, and it felt fresh and raw every single time. The struggle was real, and the struggle was brutal.
You are in it, aren’t you? I know that feeling…thinking life will never be the same, wondering if you will ever feel normal or happy again. You wish that you could push rewind, or at least pause, and take a breath. You feel physically sick and more frightened than you ever have. I wish I could jump off of this page and look you right in the eyes when I say this: it won’t always feel this way. You will get through this. You will smile again and laugh again and find joy in places and people you never would have expected. Your heart may feel hollowed out by this grief, but love will pour into those deepened channels, and its depth will astonish you.
I wish there was a way I could have glimpsed into the future in those early days when all I could feel was the intensity of pain and fear and jealousy and uncertainty. I wish I could have seen Eliza’s smiling face, tilted up to watch a hummingbird drinking nectar from the feeder, or watched as she skied and sang her way down a mountain. But, of course, I couldn’t.
I felt like our world was divided in two: the days before the diagnosis and the days after. Everything shifted when that happened. Everything. But the shift brought blessings I may have otherwise missed. I have never had more meaningful relationships. I have never allowed myself to become so vulnerable as I have since she was born. If not for this journey, I probably never would have paid much attention to the supreme network of helpers or to the miraculous ways babies learn to communicate or move. The months of intense therapy it took for Eliza to do something as seemingly simple as sitting up gave me a front-row view of the wonder of development in slow motion. And when everything is slowed down, you notice things you wouldn’t have otherwise. Hard things. And breathtakingly beautiful things.
I write this in hopes that telling my own truth may help you feel less alone in yours. I want nothing more than to sit with you in your NICU room or your baby’s nursery and to just listen. To hold up a little piece of that burden and to shine a light in the dark places where fear grows. I would say fear grows best in the dark, so in whatever ways you can, put it out in the light. Talk about it. Write about it. Pray about it.
You are in a sacred space, and I am praying for your journey through it…rooting you on from afar. You can do hard things. And you don’t need to do them alone.
My small group Bible study came to a close this last week, having just wrapped up a year-long study of Exodus, learning all about the Israelites who wandered the desert after fleeing Egypt and the God who brought them there. They were no longer slaves. They had survived atrocities and abuse at the hand of their captors, and now they were traveling as a unit to the Promised Land. It sounds dreamy, right? But they cried out and complained. “Why did you bring us out here just to starve to death?” “How long must we remain here?” “Let us go back to Egypt. At least there we knew what our life would look like.” I can relate. There is something harder about the unknown, even as it stacks against assured struggle. But the truth is, they couldn’t go back. I can’t either. It seems at times as though my life were split in two when Eliza was born…the before and the after. There is no returning to the life before. And despite my early yearnings that there would be, I’m so thankful now. Because the wilderness has shaped me too. It has formed in me endurance, empathy, wisdom, patience, trust, reckless love, and deep joy.
I keep thinking of those Israelites, and I keep relating to their longings. They craved security, control, and predictability. And in return, they were given everything and nothing at all. They had exactly what they required of that day…enough food each day and a cloud or fire to follow, but there was no storehouse of extra “just in case” provisions aside from the sabbath allowance and no itinerary of where and when they would go next.
I don’t know what Eliza’s future will look like. I’m hopeful that we will find a real treatment for PWS. I long for her to feel full, and I long for her to have meaningful relationships…a best friend, a husband, a child. I long for college and a career that she chooses. I long for independence. For good health. For deep love. But I can’t plan those things for her. I just can’t. I can only follow today’s cloud, stay close to tonight’s fire, and find contentment with today’s portion. And that’s the whole point, isn’t it? No one has a crystal ball and a get-out-of-suffering-free card, but we often fool ourselves into believing we do. Being a parent of a child with special needs doesn’t remove the crystal ball. It just removes the veil of disillusioned thinking that allows us to believe we do. And that’s a gift because unless we know we need something, we don’t seek it. We don’t come with empty hands and open hearts to receive it because we’re too busy looking at the mirage and holding the cheap imitations to see and experience the real thing. God created “every good and perfect gift.” Not some. Not most. Every single good and perfect gift is from above.
As much as I wish at times that I could take the reins and decide the course of my life and the lives of everyone I loved, I know in my heart of hearts that I’d cheat us all out of the very best stuff…the stuff that makes life deep and rich with meaning. So I will keep asking God to guide our paths, and I’ll keep trying to hand the reins back to him.
Today is PWS Awareness Day, and it got me thinking about what a goal of raising awareness really means. It’s a phrase that’s used so often but rarely with practical suggestions on what it might look like. For me, it’s looked like big things…the turkey trot my friend and I started in 2015, the chance to serve on the faculty panel at a medical feeding conference, and of course the resources I bring to teachers and therapists in and out of Eliza’s IEP meetings. But I think the most powerful thing it’s looked like is ordinary conversations. Awareness begins with curiosity, and while I’ve fielded insightful and thoughtful questions from adults, I think (as with so many things), kids take the cake here. I couldn’t pull this little wagon around without loads of stares and questions from children we’d pass. Perhaps it’s their inquisitive nature, or perhaps it is that they come with an innocence (and an absence of filters) that allows them to ask pretty much anything without fear of asking it “right.”
The trouble is we often shame or silence their questions, and that furthers the narrative that “we don’t talk about it” or that it’s not polite to wonder why Sam needs braces on his legs or Susie gets so upset when the fire alarm goes off. Once we understand, once the veil of mystery and even shame is lifted, we have come to a much better starting place. We do this with race, with accents, with stutters and head wraps and ticks. We ignore them under a false belief that this is the better, kinder thing to do, and then we model – and often directly instruct – kids to do the same. I can’t speak for everyone, but I know many of us truly welcome the questions. Kids (and grownups for that matter) don’t have to ask it just right for the conversation to land in a place of better awareness and understanding, and we want that desperately for our children.
So if there is anything you want to know, ask here (or any other which way you prefer). I welcome your questions wholeheartedly because I know they will only raise awareness, and as Eckhart Tolle famously said, “Awareness is the greatest agent for change.”