Happy(-ish) Halloween

Halloween is one of those holidays that looks fun and precious on social media but generally very different in real life…at least at our house. I love the pics of everyone’s kids this morning, but I’ll have to settle for this one from a few weeks ago because this morning was a hot mess. Elsa suddenly wanted to be Jasmine, Cinderella wondered if she’s too old for princesses, and Wonder Woman became Bo Peep from Toy Story before going back to Wonder Woman but without the cape (or the dress) because everything itched. I was actually grateful for Eliza’s aquatic therapy session before school because it gave us some one-on-one time to talk through the day again, something I could tell she was craving. Sensory stuff is hard. Change of routine is hard. And food and treats everywhere you look is really, really hard.  

I can’t count the number of times she asked about today. Will there be candy in class? Will we have to do real work or just crafts? Will I be in my regular classroom more? Will people have candy in their lunchboxes? How much candy do you think I’ll get tonight? Do you think people will have things other than candy too? Do you think anyone will jump out and scare me? How many pieces of candy can I keep? When can I eat it? Will my sisters get more? Will they have it in the pantry?  

Nothing feels fair or easy to that girl right now, and a part of me seriously considered just keeping her home and turning off the porch light later tonight. But I’m reminding myself that they’re excited. She’s excited. I’m reminding myself that we have a plan. Her sugar treats will be swapped out for a prized toy she’s wanted for weeks, and her school knows not to give her any food that didn’t come from home. Still, I’m ready for today to be over. To all the mamas juggling the fun with the fear, I see you. We can do hard things…even Halloween.

Five Tips for Launching Your Neurodiverse Kid into School

Sending our kids to school is almost always wonderful and terrifying, infused with countless hopes and a handful of fears.  We who have gone through this journey already know just how formative a good (or bad) teacher or classmate can be, and I’d venture to guess that everyone reading this can picture at least one of each right now, even if it’s been decades.  When our neurodiverse kids leave home for a new classroom, the stakes seem even higher.  I worried more about sending my second grader with special needs back to school last week than I did about her kindergarten sister.  Eliza has Prader-Willi Syndrome, and while there are shared characteristics across the board with people who share her diagnosis, she doesn’t fit into any one box.  No one does.  As her mom, I want to celebrate who she is and challenge her to grow into the fullest expression of her abilities, and I want her school to do the same.  Here are five things that have helped me move closer to that goal.  

1. Give a Cliffsnotes version of your child’s Individualized Education Program (IEP) to teachers and staff

Eliza’s IEP is 21 pages long, and like any legal document, it’s not particularly reader-friendly.  I want and expect teachers and staff who work with her to read the real deal, but as a former teacher myself, I also appreciate just how effective a shorter document can be in making sure the most important skills, challenges, and accommodations are communicated.  The real bonus is you get to share these goals, tips, and tricks the way you want them shared.  Use bullet points, bold or highlight the most important parts, and let the school team know your vision for your child.  Eliza’s school resource page has a colorful picture of her, a Dr. Seuss quote I love, a vision statement for our hopes for her, a list of things that work (and things that don’t), and links to resources I trust where the team get more information on her specific diagnosis.  See what ours looks like here.

2. Set aside a time to check in with your kid daily

Plan a time each day when you can check in one-on-one with each of your kids, and try to make that time consistent.  It doesn’t have to be at the very end of the day (which is the worst time for me…I feel like I’ve used up all my good parenting energy by 7pm), and it doesn’t have to be for very long.  You can even use a visual timer and consider saying something like, “For the next five minutes, you have my undivided attention.  Let’s color together, and you can tell me about your day.”  Ask about who she sat with at lunch, what her high/low moments were, and if there is anything she wishes was different at school.  Try repeating back what you hear her saying and follow up with “then what happened?” or “tell me more.”  Knowing you will listen every single day is a gift you can give your kid, and it doesn’t have to take a lot of time.  

3. Send a letter to the parents

I sent Eliza’s kindergarten teacher a letter to distribute to the class email list introducing our family and giving a very short introduction to PWS because we had just moved to the area, and I wanted her to feel like she was in a community that knew her even though we didn’t have that yet.  I was amazed at how receptive the other parents were to learning more about our daughter and her diagnosis, and I heard from more than one that it was helpful in talking to their own kids about why Eliza may do things a little differently.  We decided to do it again this year, even though she knew most of her peers as a returning student.  Her teacher printed copies and sent them out in the Friday folder, and it gives not only a generalized picture, but it also helps parents and students understand why the class moved from candy rewards to a prize box.  It’s a small step, but it’s a big one.  Take a look at ours here.

4. Teach your child how to advocate for themselves and back them up

A therapist at Eliza’s old school said that she was doing everything she could to make sure that Eliza’s therapies and accommodations were unnoticed from others.  I could see where this was coming from a place of compassion, but I told her that we want Eliza to acknowledge and claim her needs now in school so that she can do that later as an independent adult.  Generally speaking, people with her disability don’t live independently, but we still hope that dream will become a reality, and we want her to have as much choice in her life as possible either way.  Providing her with modeling, tools, and practice to advocate for herself is a huge part of achieving that.  We never want her to feel ashamed or embarrassed of the way she learns or interacts, and she knows that we will have her back and foster that self-awareness every step of the way.  

5. Don’t be afraid to be a squeaky wheel

I am an Enneagram Nine…an avoider of conflict and a total people pleaser, so this one is still hella hard for me.  But I am learning again and again how important it is to return to the table when the plan isn’t working.  It is okay to ask for a new IEP meeting (you are allowed to do that at any point in the year).  It is okay to push for more time in the general ed classroom.  It is okay to ask questions, to return to the legally-binding document that outlines accommodations, and to bring an advocate to especially hard meetings (or any meetings, for that matter).  I love my kids’ school…I love the resource team and therapists, and I feel like my girls hit the teacher jackpot this year.  But my first responsibility isn’t to be well-liked by any of them.  My first responsibility is to advocate to ensure my daughter gets everything she needs on her IEP and that the school abides by that mutually-agreed upon document.  I can and will be kind, but it doesn’t mean I won’t keep pushing for what I believe is right.  

At the end of the day, you know your kid better than anyone, and sharing what you know with her team is not a burden, but a gift.  School is an exciting place for her to spread her wings, and knowing that home is a soft place to land will give her the confidence to soar.  You’ve got this.

The Bursting and Breaking of Our Hearts

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.  

Seeking Balance

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.  

Crystal Balls

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. 

Dear Families of the Newly Diagnosed

Dear Families of the Newly Diagnosed,

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.

Love,

Julie

Braving the Wilderness

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. 

Asking Questions…Raising Awareness

Eliza rolling around Children’s in her little red wagon…the only way to get her around in that Spica cast

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.”

Life May Never Be the Same. And That’s Okay.

Like many of us, I’m realizing that there is no date in the near future when we will “go back to normal” because the truth of the matter is, normal is forever changed.  And that’s okay.

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It’s easy to spin into a dark place when you realize life is taking you way off the course you imagined.  It’s scary to go someplace new without a road map.  It’s hard.  And yet, if there is anything life has taught me in the last several years, it is that we can do hard things.  Even more, when we do, something deepens in us, and the life we create from those challenges is deeper too.  

When my middle daughter, Eliza, was in the NICU, my focus of hope was on the day we walked out of Room 8 and back into real life.  In my mind, the discharge to home somehow felt like it would be a great return, as though we could check the box, finish the course, and graduate.  When doctors started testing for incurable, terminal conditions, my focus of hope transitioned to survival.  I just wanted my baby to live.  And when we got the diagnosis, my focus of hope turned to finding a treatment, longing for the day when she could be cured of the debilitating effects, like insatiable hunger, that come with Prader-Willi Syndrome.  I cycled through it all.  I grieved the loss of the life I had imagined and grieved again when I realized finally that there was no finish line to cross in this new course.  

I still remember with clarity the waves of questions that relentlessly came at night.  Would she be happy?  Would I be happy?  What happens if she never leaves our house for one of her own?  And what happens when we’re no longer here to care for her?  The grief wrapped itself around me like an uncomfortable blanket I couldn’t shake.  I truly questioned if I would ever again feel light…if I would ever again have days that weren’t consumed with thoughts and fears about her life and my ability to handle it well.  

More than five years later, I find myself feeling much the same way.  When COVID hit, my first thought (like so many others) was, how soon can we get to the other side of this?  Fourteen days?  Three months?  Give me a finish line to see, so that I know I can cross it.  That changed to fear.  Will we make it?  Between Eliza’s underlying medical issues and my husband’s job as a doctor at one of the largest public hospitals in Seattle, I became obsessed with the thought of mere survival.  That’s still a real fear of mine.  And like everyone else, I want there to be a vaccine…some kind of cure or treatment that can take it all away.  But I learned the hard way through our efforts to fund research for a PWS treatment that it is a long, slow process to get there.  I have faith that both will come, but I can’t wait for that to happen before I start living in the world I have right now.  

The parallels between these unexpected journeys give me some perspective that I hope is helpful, which is that not only can we do hard things, it will be in and from those seasons that we fully live our best lives.  Grief and suffering dig channels where love can enter, and when we are open to it, that love will transform us.  All the extra baggage we get so preoccupied with falls away in crisis, leaving only the true and essential.  

Sitting in the NICU, holding a baby covered in wires and tubes, I wondered if life would ever be the same again.  And I can tell you, it hasn’t been.  For that, I am so grateful.  That’s not to say I’d choose PWS for Eliza any more than it is to say I’d choose COVID for our world.  They’re both painful and unfair and terrifying.  But I know this: from great suffering comes great transformation.  Our faith grew deeper.  Our love grew stronger.  And our joys became rooted in the things that circumstance could not shake.  We have walked through fire with that girl, but we learned we could rise from the ashes.  

May we acknowledge our collective experience of grief and fear and struggle and find ways to lean into the love and lessons it brings with it.  May we stop waiting for the finish line and start opening our eyes to the wonders of this season.  Normal may never be the same.  We may never be the same.  And one day, if we’re lucky, we may just be grateful for that too.

Love Shows Up

“Do your little bit of good where you are; it is those little bits of good put all together that overwhelm the world.” – Desmond Tutu

We are now almost a week past race day, and I’m still blown away by the love and support that made this Thanksgiving event possible.  What started four years ago in the freezing cold with nearly 500 participants grew to over 2,000 this year!  It is astounding.

I know Eliza doesn’t yet understand the way her community showed up for her and the thousands of others living with Prader-Willi Syndrome.  Right now, all she knows is that her mom was really busy…and it probably felt a little bit like an unwanted sacrifice.  I saw all of my kids struggle with the abrupt change in our family’s schedule in the month of November, and it is hard to know that I wasn’t able to be there for the kindergarten feast or to rub the backs of my sick kiddos when a cold and then a stomach bug traveled through our house recently.  But in those moments of guilt, I was thankful to hear Derrick’s reminders that this was a choice – a sacrifice – worth making.  That it would change the futures for all of them.  And that someday, they would understand.

Throughout this year’s journey, we raised over $100,000 for the Foundation for Prader-Willi Research. And the best part is that it came from so many sources…race registrations were huge, but so were the generous donations from local restaurants, gyms, salons, and many, many small businesses in our community.  And then you add in the generosity of our village…$20 from an old friend, $100 from a cousin who has only met Eliza once.  It all adds up.  And it brings me to tears in gratitude.

We forget sometimes how much it means to show up for each other.  To send an encouraging text or offer to volunteer last-minute instead of relaxing on the holiday morning in your PJs watching the parade.  Derrick and I would go to bed marveling at the support from our tribes, and it’s hard to put that in words on a thank you note because it means more than words can say.

There are so many hard things going on in the world today that sometimes it seems to cast a shadow on all the good.  Acknowledging both is important.  And I know our little turkey trot is just a small slice of the bigger picture, but it is a powerful reminder that good is still there, and it’s literally all around us. That generosity and community and joy are still alive and strong…still ready to show up.  It is, as Desmond Tutu said, those little bits of good that overwhelm the world.  I know they overwhelm me.