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.

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Off to School

“One morning you’ll wake up to find you are grown and the bells that you’ve rung and the whistles you’ve blown will say to the world that the story you told was clever and brave and daring and bold – and I’ll be prouder than words can tell of every chapter and every bell.” – Nancy Tillman

 

It is the first day of school, and I am a bit overwhelmed by all the emotions that have come along with this milestone.  For both girls, this year is filled with firsts as they move into full-day school, but the transition will be most extreme for Eliza.  Her new program sounds amazing, and we are thrilled for her, but there are some very big changes from last year.  She is surrounded almost exclusively by typically-developing peers, she has no full-time therapist in the classroom, she has no morning snack, she is expected to be potty trained (which is still a struggle), and her day lasts seven hours (opposed to last year’s three) with only a 40-minute rest time.  The girl is going to be tired.  Scratch that.  The girl is going to be totally exhausted.

And yet I’m so excited for all the ways I know she will rise to this challenge.  It may not be smooth or predictable or even pretty, but Eliza has grit, and she constantly amazes and surprises me.  After scribbling random lines for her name at check-in this morning, she hugged me goodbye with no tears and no hesitation, ready for the next adventure.  My hope and prayer is not that she learns to write her name or recognize numbers and letters (although that would be amazing).  My hope and prayer is that she sinks more deeply into a love of community and rises more confidently in her awareness of all the gifts she brings to this world.  The sky is the limit for all she can do!

But none of that changes the fact that I am afraid…afraid that she won’t be able to hold it together when morning comes and goes without a snack, afraid that she will feel embarrassed to have a Pull-up on when everyone else has long outgrown that stage, afraid that her exhaustion will translate as meltdowns or falls.  I am afraid that she will feel truly different for the first time.  I want so much for school to be a safe and happy place for her to grow, and the thought that she could see it as anything else terrifies me.  Her independence and determination can swing both ways, and I know how hard the battles can be to get her to do anything she doesn’t want to. The struggle is real, and the stakes are high.

I don’t know what she’s doing at this moment or even how she’s feeling, but when my mind spirals down every potential scenario and panic creeps in, I remind myself of all I do know.  I know God is with her.  I know that He created her exactly as she is meant to be and that she is surrounded by a fierce and unconditional love.  And I know Eliza.  She is already everything Nancy Tillman writes about in the children’s book I read the girls last night – “clever and brave and daring and bold,” and no matter what the day brings, I’m already “prouder than words can tell of every chapter and every bell.”

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.