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.

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. 

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.”

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.

I Hope You Dance

“Everyone longs to be loved.  And the greatest thing we can do is to let people know that they are loved and capable of loving.” – Fred Rogers

I have been working on a post about last month’s Foundation for Prader-Willi Research conference since the day I got home.  It was such an intense weekend for me that it’s been hard to capture it, so I went searching for a picture to inspire the post this morning and ended up revising it completely.  What I saw brought out a whole different set of reflections, which seem equally hard to put into words.

To make a long story short, the FPWR conference was incredible!  ALL the feels came out that weekend.  I felt hope and fear and connection and determination.  I am unspeakably grateful for the village of warriors fighting alongside me who have taken the charge and put themselves and their young ones in the path of uncertainty through clinical trials, surgeries, and countless different therapies.  I am thankful too for all the researchers who have made PWS and all its complexities a little clearer, even when that clarity brings with it renewed panic at just how likely Eliza is to struggle with making meaningful friendships or suffering from mental illness.  New studies show a stronger connection to those challenges with her specific subtype of PWS, and what I had once thought could wait until adolescence when they more fully manifest, I now know can be identified, predicted, and hopefully helped in this three to six-year-old age range.

Eliza can obsess over things more than most kids and has significant struggles with changes over routine, especially if food is involved.  She also wants desperately to have friends but doesn’t always connect with her peers, who have essentially developed twice as quickly.  At school drop off this morning, I witnessed two kids laughing at her attempt to create a pattern with leaves, a class project displayed in the hallway that shows her random cluster alongside her classmates’ neat lines.  She was standing behind them but totally oblivious to the joke.  It was such a minor thing, but it was the fourth time this year that I’ve left that hallway to cry in my car.  It’s not that I’m sad that she’s different or even that she’s a little behind.  In some ways, watching her learn in slow motion has brought more wonder and awe than I have found witnessing the same milestones with my other daughters.  What I cry for most is the day that she realizes that her differences may bring with them pain, exclusion, and ridicule.  So far, in those moments when she is told that she doesn’t know how to stand in a line correctly or that she talks funny, Eliza persists.  She dances to the side of the line and continues to tell her story, unaware.

I want so much to preserve her innocence and to somehow guarantee that she will be spared from feeling the “otherness” that so many kids (typically-developing included) feel.  She is four. I know it will probably get worse before it gets better, and I know that these kids are good kids who are also only four.  I also know that for every potentially hurtful thing said, there are probably a dozen kind ones.  But oh my goodness, it still breaks my heart.  And then I look through these pictures, and I think of her smile.  I remind myself that right now, she doesn’t know that she is any different from her peers.  Right now, she still stops what she is doing and dances to any music playing nearby. Right now, she still smiles and waves to strangers in the grocery store like she is in a parade.

Right now, all I can do is what I can do.  I can keep learning more about ways to help her, and I can keep working hard to plan a race that will hopefully bring more awareness to our community and more funds to change her future.  I can keep repeating to her (and to myself) that it may be hard, but that we can do hard things.  And I can hope and pray that even when she does someday realize the ways in which she is different, she will marvel in it half as much as I do.  That she will keep shining brilliantly exactly as she is, fearfully and wonderfully made by a God who is crazy about her and loved by a family that has her back always, forever, and no matter what.

Afraid but Not Alone

“He is love itself, grace embodied, holding the fullness of who we are – strong, weak, good, bad, wild, fearful, brave, silliy – in His hands.  He can be trusted with every part of it, the silly and the enormous.” – Shauna Niequist

Today is Eliza’s follow-up with the orthopedic surgeon…the day we will find out whether her hips have continued to regress and whether we will be faced with another surgery and another spica cast. As much as I try to let the future unfold as it will without imagining all the possible scenarios, I just can’t seem to do that today. I am already sick over the thought of anesthesia and its many complications for Eliza and heartbroken for the moment she would wake up to find herself trapped in what is essentially a full-body cast.  I’m thinking about how we’ll manage a wheelchair in our car and what this will mean for her gross motor skills, for her potty training, for her friendships, and for her independence.  She was a baby the last time we were faced with this.  She wasn’t walking or talking yet.  She wasn’t displaying obsessive compulsive behaviors that would be exaggerated by such a huge loss of control in her body.  And it was still crazy hard.  So I can’t imagine what this next round of surgeries and casts would be like, and yet it’s all I can imagine.

I feel heavy with fear and wound up in my worry.  I don’t want to get bad news.  I don’t feel capable of looking on the bright side if we do.  I moved through that journey already.  It was brutal and beautiful and full of lessons, but I don’t want to learn them again.  I don’t want to find beauty in the pain.  I don’t even know for sure what the doctor will say, but I already think it’s unfair. PWS is unfair.

I’m sorry if this feels more like a vent than an uplifting post, but it is my truth today.  I used to think that I needed to look only at the positive…that if I could just show how great Eliza was doing at this or that, the hard parts would fade into the background.  But the truth is, they never really faded.  And what’s more, they don’t diminish the good in the least.  They are both there.  Both valid.  So today, I’m going to allow myself this fear and this sadness, trusting that God is okay sitting with me here too…that He can hold the enormity of it in His hands, and that He can hold us there too.

Overcoming

“It was so risky and so scary, and yet at the same time, so beautiful.  Maybe the truth was, it shouldn’t be easy to be amazing.  Then everything would be.  It’s the things you fight for and struggle with before earning that have the greatest worth.”  – Sarah Dessen

 

We did it!  The first week of school is over and done, and I’m unspeakably excited by the prospect of the next two days being wide open and free. No packing snacks and lunches, no setting an alarm or rushing the kids through the morning routine so that they can leave on time and “stress free.”  I feel like I can take a big breath, relieved that the girls were (for the most part) excited to go to school each day.  I know it’s exhausting for them and a huge shift for all of us, but they handled it like champs, even managing to do most of the morning routine on their own.  Amelia and Eliza share a room, and each day when their alarm went off, they got up, got dressed, made their beds, and brushed their teeth before coming downstairs for breakfast.  Eliza’s bed-making skills are still emerging as they say, and Lord only knows what kind of job she did brushing her teeth solo, but the point is, she did it.  I’m sort of astounded that it worked, to be honest, but so, so grateful that at least for week one, it did.

This whole week has left the advice of Eliza’s PWS specialist, Dr. Miller, refreshed in my mind. She told me at our last appointment that I should expect Eliza can do anything, encouraging me to only make accommodations when she shows it’s needed.  That’s hard advice to follow, mostly because I want so desperately to protect her from failure and keep her spirits and excitement up.  As I said before, once Eliza has decided she can’t (or doesn’t want to) do something, she generally digs into that belief pretty hard. And I want to ensure I have everything in place to give her success.  But then I wonder whether I’m doing just that…giving it to her instead of letting her figure it out on her own.  Finding that balance between protecting our kids and allowing them to fall and fail is constant, isn’t it?  I don’t know the answer.  I think it’s one of those things that specialists and parents alike see differently, and I don’t think there is one right answer. But I will say that this week, I might just send Dr. Miller an email and say thank you.  Thank you for believing in Eliza.  Thank you for reminding me that yes, it is harder for her, but that she can do hard things.

This world is not an easy one to navigate for anyone, and that is certainly true for Eliza, who is challenged by simple things like balance and self-regulation that we generally take for granted.  But what better time to practice spreading her wings than now when she has a village of teachers and paras and parents and friends looking out for her?  Right now, her world has her back, and I’m so very thankful for that.  Was week one hard?  Absolutely.  Did Eliza cry nearly every afternoon within ten minutes of leaving her classroom?  Yep.  There were more struggles and more tears than we normally have, but there were also more adventures and more lessons and more friends.  We are going into this weekend ready to celebrate…celebrate this week of firsts and the kids who navigated them with a little grit and a lot of grace.  What a ride.  What a blessing.

I Wish I’d Known

“You can lose it all – all the things you thought mattered most – and rise up to tell a better story yet. Turn it loose.”  – Jen Hatmaker

Eliza turned four last month, and nearly every morning since her birthday, Facebook has popped up a memory from that time on my personal page.  It’s hard to explain just how quickly I am transported to that room and to those days and weeks of fear.  It still feels prickly and raw all over again to see a picture of her tiny body with a captioned update on the latest tests or prayers requests, remembering how I felt when they were taken.  Four years ago today was our first full day with Eliza at home, so yesterday’s picture showed us parading her out of the NICU without any wires or monitors attached for the very first time.  This seems unbelievable to me.

Fast forward to today. Eliza is halfway through a weeklong Zoo Camp with her sister.  Other than her special snack, there are no real modifications for her.  I drop her off in her matching oversized safari t-shirt and pick her up three hours later, knowing that when I do, she and Amelia will tell me all about the animals they got to pet or the special shows they got to see.  Yesterday, we met her physical therapist after camp to do a little session in the zoo.  She was walking along narrow beams and jumping off sidewalk ledges, trying to land on both feet together (a challenge) but excited to be “leading” her younger sister through the obstacles.  It was one of those ordinary moments that takes your breath away because you get a glimpse of just how much has changed…how far you’ve all come.

Days can feel normal and full and just about perfect even when what that looks like has changed, and I wish I had known that.  I wish the me in the NICU, hearing about the devastating diagnosis, could have glimpsed us out together in the sunshine.  It would have calmed that anxious, sad mama’s heart.  If you are there, in the space where everything feels so crushing and huge that you fear life will never be light and fun again, hang tight.  Take a deep breath.  Trust that this too shall pass, and that even when the diagnosis doesn’t change, you will.  You will change in wonderful ways, with eyes more open to the laughter and the blessings. You will look with more awe at your children – all of them – and feel closer to your spouse than ever before.  Your rawness will translate to a deeper, more sensitive perception of the world around you and especially of those closest to you on the journey.  Breathe. Trust.  Surrender.  The pain is real, but so is the joy.  And there is so much joy just around the bend.  I promise.