April 18, 2018

Today was one those days...

I couldn't decide if I needed a gigantic chocolate fudge sundae, stiff drink, humongous hug...or all three😜

It's funny how God humbles me and shows me grace at the same time.  Mac had to get a follow-up xray and bloodwork done (that I've strategically been putting off) to make sure the changes we've made to help his tummy continue helpful and beneficial.  We had an afternoon of appointments, and based on our location in town, I decided to bite the bullet and try to squeeze this in.  Well, God continues to show me just how completely opposite my dear children really are.  I'm pretty sure all of Boiling Springs could hear Mac screaming bloody murder as we attempted to take his tummy xray.  Ellie was a great big sister, didn't ask TOO many questions and told Mac he was brave, even though he cried.   We (and I really mean, James), by the grace of God got the xray.

Next up, bloodwork.  How in the world was that going to happen?!?!  All I have to say is God carried us through, and put amazing nurses and technicians in our path.  Mac screamed and cried, and my nerves were absolutely shut by the time we walked out...but MD 360 in Boiling Springs is hands down incredible.  They were patient, positive, laid back, and so loving to both my kids.  And this momma is incredibly grateful.  

I think what continues to be the hardest aspect for me navigating a child after PWS, is the crying and muscle tone difference.  The crying absolutely rips me out of the frame and wrecks me, and the muscle tone, oh, the muscle tone...I send most days thinking, is this Hulk, or Mac?!?!  All of it is beautifully hard.  Beautiful because it truly is amazing to see such emotion and strength from a little person, but hard because I know another little person works so stinking hard to make that happen daily.  

I'm super proud of Mac today.  He made it through something hard, and had this killer smile after it was all said and done 💗

Every Tear Wiped Away

I never truly understood PWS holiday anxiety until tonight.  

But I've also never seen God move, calm, and speak like He did tonight either.  

We've been at an all time high talking about food.  Sugar, carbs, gluten, commonalities, differences, candy, cookies, allergies, and the list could go on.  The questions are plentiful too, so I've known she's anxious but I didn't truly realize how anxious.

We had a fun holiday event at school that, honestly, I was a little leery to attend.  But, Ellie came home begging and excited to go.  So, of course we went.  And as a family, we had fun.  We talked to Santa, played games, and went on a Christmas light excursion afterward...truly seeking the magic of the season.

When we got home, we quickly got ready for bed, and I could see it coming...

"My tummy is hurting."  "Maybe it was the little bit of candy cane I had, because it had sugar in it?"  And then the tears came.  And these were tears of fear, anxiousness.  Tears that when you see them as a mom, you just want to scoop your child up, run away and take every ounce of hurt away.  I hugged her tight, and could feel her little body start to tense and cry harder.  I calmly asked her what was bothering her.

"I'm nervous about Polar Express Day.  There's hot chocolate and what will I do?"  I told her she didn't have to worry...that I was sending her something that was good for her with low sugar and low carbs.  She cried harder.  I hugged her tighter.  

"What if someone tries to give me the other hot chocolate?"  "What will I do?"  "What will I say?" I looked at her and said, "You'll tell them no thank you; I cannot have that."  And, "Your teachers will never let that happen.  They love you and take care of you and will not let that happen."

She stopped crying and said let's read our Bible story.  We've been reading a nightly advent story each night up to Christmas.

We found the one for tonight..."Operation No More Tears."  It was about the prophecies from Isaiah, and how God had a special job for Isaiah...to listen to God and then tell what he heard (the redemptive, hopeful, good news that Jesus came, died and rose to rescue us, and He will come again to wipe every tear away from every eye).

I said, "Ellie, this looks like it is going to be perfect for tonight."  I explained what it was called, and told her God sent Jesus to rescue us, love us, help us, and forgive us.  They can come to our rescue now and want us to talk to them, ask for help, and share our worries, hoped, joys, and everything with them.  All we have to do is ask them in our heart, pray and talk to them when we're nervous, scared or worried and ask them to help us and bring peace.

We finished reading, and I looked at her and said, "Ellie, God and Jesus can help you when you're nervous, worried or scared.  You just have to talk to them and ask for help.  Do you want to do that?"  Tears filled her eyes and mine, and she nodded.  I could see peace come over her body.  I could see relief.  I could see her truly understand.  As I prayed, she interjected a few times.  And then she calmly and peacefully went to sleep...all her tears wiped away  ❤ ❤

8 Year Old Balloon Dropping into 2020

Ellie stayed up in New Year's Eve this year until midnight.  I know, right?!  To me, it's a major indication that she's maturing and growing up right before our very eyes.  It also really could have been her eyes were locked and loaded on the balloons, and she most definitely was going to see them all drop.  And it also could've been that we had not found the face painting station yet, and she wasn't going to be until we found it.  Regardless, she did it...the baby who was born 8 years ago on New Years Day with low muscle tone, failure to thrive, extreme and terrifying food issues, and an uncertain and  challenging future...just danced and laughed, face painted, photo boothed, danced some more, and rocked her 7 year old self into 2020, and turned 8 as the clock struck midnight.  

This year we celebrated her birthday with a family trip to Great Wolf Lodge, and we all had a blast.  If there's two things I've learned about our family, it's that we love traveling to new places together, and we all love a water park.  Everyone thrives there.  Ellie tries her hardest.  Mac plays his heart out.  They both are so brave and courageous.  David and I get to spend quality, special time, one on one with each kiddo.  And yet, all four of us have a blast together too.  As soon as Mac starts eating some things (notice my humor) that will help him grow bigger and taller, the sky will be the limit for the Spearman family at the waterpark...and we'll get to ride all the things :)

But, the one thing I noticed this year as 2019 turned to 2020, and was New Year's Day or 1.1.20...I didn't get sad.  All I've felt this year is happiness and excitement dancing into 2020 with my now 8 year old.  

Tonight, though is a little different though...
We all reflect as a new year comes.  We take a look back, and we all look ahead.  We all wish, hope, and promise the new year will be the best or better than than the last.  And I'm no different.  What is different than most people is where I was sitting 8 years ago tonight.  Eight years ago at this time, my first-ever newborn baby girl, with Billy Idol blonde hair, had entered this world barely making a sound, visited the  NICU once right after birth, and then around 11pm was whisked away again in an emergency to the NICU where she would stay for a month.  I'm transported back there every New Year's Day in one way, shape or form.  I see the nurse calmly, bit nervously, run Ellie out of the room.  I remember the sheer panic and tears David and I cried as it happened.  And I remember waiting, and waiting on them to come tell us she was admitted.  Gosh, the darkness and fear.  It's suffocating and still takes my breath away.

Our life changed that day 8 years ago when Ellie was born...

And I couldn't see the water parks, or the dancing.  Hell, I couldn't even see the joy; all I saw was fear.  I'm so thankful for time to reflect back, time to be in the present, and time to look ahead, even if it's uncertain or scary.  I never want to forget the heaviness and darkness of New Year's Day 8 years ago because it provides perspective and keeps me humble.  It also really helps me to find the joy I couldn't eight years ago on Ellie's birthday...

Ellie made it.
She was and is so strong.
She was and is a light to everyone who meets her.  And she was and is the perfect New Year's Day baby.  The confetti, the balloons and balloon drops, the noise makers, the dancing, the gathering together, the excitement, the reflection, the love, the singing, the fireworks, and the love.  Everyone celebrates your birthday sweet girl, and that's beyond unique and special...just like you.

Happy 8th Birthday Ellie Belle.  We love you so much.  Last night was truly something incredible to experience and celebrate with you.  Thank you for helping me to truly see the balloons, and the dancing, and the confetti, the love, the excitement, and the happy this year.

Conference 2019

Home from The Foundation for Prader-Willi Research's Research Symposium and Family Conference.  I finally got a moment to soak it all in and process everything.

I had a woman who just learned about PWS this weekend at the conference (I participated in an interview for medical delivery equipment), look at me and say, "after meeting your community I'm blown away.  If my child had PWS I wouldn't be scared knowing I had this group of amazing parents and medical professionals behind me.  You all truly are amazing." 

And that's what I take away year after year from this conference.  These people are our family, and the grit, determination, and willingness to do whatever it takes to find teatments and a cure for PWS is what rallys and ignites my soul.  I love them something so fierce.

I couldn't help but look back to our first conference in Philly in 2012.  Looking back provides perspective and truly shows the growth of this fastastic organization we're lucky to be part of.

I see the tenacity and joy in Ellie's eyes then, and 7 years later it's absolutely still there.  It's a hard road we're on with Ellie and PWS...but FPWR has instilled a fight and hope in us that's indescribable.

I see Ellie 7 years ago fighting PWS...rocking her oxygen, and taking in the world around her.  7 years later, on this year's closing video, she's still fighting PWS...rocking her CPAP, and changing the course of her life and the lives of her friends by participating in a clincial trial for PWS.

5 years ago there were NO trials for the treatment of PWS. Today SIX drug trials are actively recruiting in different phases to treat different debilitating symptoms of PWS. And, there are MORE coming.

We took HOPE, turned it into ACTION and now we have POSSIBLITIES!

And everyone of us ISN'T giving up.
We will FIGHT til our last breath.

Silver Linings

Clincial drug trials are hard. 

Blood draws
Changing plans
Off schedules
Late nights
Early mornings
Fasting bloodwork
Delayed flights
Unexpected tears

And clincial drug trials are beautiful.

Airplane rides
New cities to explore
Hotel adventures
Professionals caring for your family
Hope for a better future for your child & those w/PWS
Extra one on one time with your child
Unexpected blessings
Reflection
Gratitude
Friendship
Silver linings

Nashville has been our home away from home for the past several months, because Ellie has been participating in a clincal drug trial for PWS.  Our last visit, I was hit so hard with beautiful perspective and shown such gracious silver linings. 

For the past 7 years of Ellie's life, I've prayed for her to follow Him, make friends, be happy, and be fulfilled in this life.  It's the epitome of the saying many of us PWS parents want for our children...Live Life Full. 

Well, this past visit to Nashville we arrived and dear PWS friends picked us up from the airport.  We laughed, talked, shopped, explored, and had the best time.  The next day Ellie and I got to meet and spend time with another dear PWS family.  The kids got to find their beat, and tore it up dancing to live music...us moms just sat back and enjoyed the happiness...no thoughts of PWS and its challenges.  And I realized, once we were home...Ellie and I have gotten to have these special experiences with PWS friends every.single.time. we've come to Nashville.  Such perspective and gratitude for this.

But, this past trip was one I will never forget for as long as I live.  I've truly never seen Ellie happier than I have on Monday night.  Our hotel we've stayed at everytime, Holiday Inn Nashville-Vanderbilt (Dtwn), is truly something special...and it's the staff.  Every single one of them is professional, personable, and friendly.  But, Ellie has connected and formed a unique and hilarious friendship with two of them.   It's hard to put into words how special they are...Morgan and Dylan. 

This week we came to Nashville knowing that Morgan had accepted another job and was no longer at the hotel, but she reached out to me and said she would love to get dinner with us when we were in town.  How sweet is that?!  Ellie was ALL about that and could not stop talking about our dinner with Morgan.  We had dinner scheduled for Monday night, and Ellie knew as soon as we got back from our morning trial appointment that Dylan would absolutely be at the hotel and she was so excited to see him.  Except he wasn't.  Dylan was off this past Monday.  I was so proud of Ellie finding out this news and holding it together in the lobby, but when we got up to our room, she definitely had some tears.  I contacted Dylan and told him we missed him, hated he was off and invited him to dinner...not thinking or expecting him to come on his day off.  But this is where I look at all this, and I'm blown away by God's provision and intricate precious details.  We went to dinner and Ellie had the best time visiting and talking with Morgan.  She is such a precious soul and beautiful person.  She made points to talk directly to Ellie, asked about her, got to know her, and saw Ellie for Ellie.  Everything I've prayed for in a friendship for Ellie.  But then, I got a text.  Dylan was almost to the restaurant to surprise Ellie...on his day off.  He walked in that restaurant with a rose to give to Ellie.  He picked the rose, because Ellie had been educating him on the fact that candy is not good for her or others with PWS.  And y'all she absolutely adored the rose.  Her reaction to his surprise visit was everything.  Emotion and feelings are difficult for Ellie and most of those with PWS.  Daily we work on showing emotion, understanding feelings, and all the appropriate social stuff.  Well, when Ellie turned around and saw Dylan...it was the sweetest thing.  She was so utterly surprised, truly surprised.  And so, so happy.  It was the best night, and I've never seen Ellie happier.  The three of them had the best time together and with everyone at the table.  Ellie left that restaurant rose held high, and she practically stopped everyone to tell them about her amazing night along the way.  I just wanted to bottle up this night, and her happiness and hold it close.  But that's the beauty, I'll be able to cherish it forever and hold it close on especially challenging days or times.  What a gift.

Who would've thought that a 7 year old going to Nashville for a clincial drug trial could be so deeply impacted by two young 20 year olds working at a hotel? 

God, prayer, friendship and silver linings.

I encourage you to look for and find yours ❤

1st Grade

1st Grade.

It's a funny feeling to be on the eve of yet another first day of school for Ellie.  She's been so excited about school starting back, and honestly I have too.  The surreal feeling is that again, I have complete peace.  Her teachers are incredible, and I mean absolutely incredible.  It's crazy to say that after only talking with them for 2 hours, but I just know it's true.

I know this year the demands and rigor will increase, but if there's one thing I've learned along this crazy ride it's that we will make it through.  Life throws all kinds of curve balls.  Things change.  We adapt.  We re-group.  We move onward.  And we will make it. 

Anxiety has definitely increased in Ellie.  Repetitive, rhetorical questions are frequent.  She has been more food focused lately.  All of which makes me fearful.  Living with PWS often feels like you're waiting...

Waiting for the school to call.
Waiting for an epic meltdown to occur.
Waiting for a therapy to not go well.
Waiting for a friend to be mean or unkind.
Waiting for food to be stolen.
Waiting for behavior to change.
Waiting for the "elephant in the room" to come bursting into our life unannounced...the hunger.

There is perspective gained as Ellie grows older.  And daily I have to choose not to let all these fearful "what ifs" and "whens" consume my thoughts, and dictate my life.  I remember David saying early on, "We'll be ok and we'll get through whatever comes our way."  I kinda laughed, thinking how could he be so sure?!  But as every week and month pass I see more of what he means.  Every day it's a choice to live this way, and some days I literally have to verbally tell these fears and feelings to get the heck away from me.

I truly believe that Ellie was born for an amazingly great, and bigger purpose than I can wrap my head around sometimes.  She's in a unique position to impact others and change this world.  So is her brother.  Every time I see Mac interact with her, I just know it.  So, as they take on 1st grade and 2K my hope is that they will see the confidence that their parents have to help them through whatever this life throws our way.  My hope is that they'll adapt, overcome, and not live in fear.  Here's to another great year of growth, perseverance, and gratitude.

A letter of thanks

To the parents that just received a diagnosis that rocked you to your core and took you to your knees...I see you, I hurt with you, and I want you to know it will be ok. 

To the new mom who is struggling with post partum or PTSD...do not brush it aside and try to fight it alone.  Talk to someone...anyone... and with the support of others, choose the help that best fits your needs.  

To the husband who is trying to comfort a grieving wife and mom …you are doing an amazing job.  Just hold her tight and do not let her go. 

To the wife who is trying to comfort a grieving husband and dad...you are doing an amazing job.  Just hold him tight and do not let him go.

To the doctor that decided to run the genetic testing...I was so stinking mad at you initially, but I learned that you had my child's best interest at heart and gave her the best opportunity at living her best life through early intervention...so thank you.  I am truly grateful for you.

To the confused grandparents waiting anxiously to comfort your son or daughter and meet your grandchild...I see your pain, and want you to know that just being there means the world.  You do not have to say anything. 

To the other family members trying to make sense of this, thank you for giving us space to figure it out and thank you for just listening.

To the pediatrician that gets our life...the blessing you are is only from above.

To the friends that feel helpless when crisis hits...thank you for calling, texting, and just listening.  And thank you for agreeing life sucks right now. Please, do not stop checking in.

To the NICU baby in bed 18 who was rolled back to surgery...I prayed so hard for you and your family.

To the church family and friends that brought meals and cared for the other precious kiddos...you are a treasured gem. 

To the adoptive family, your forever home brings me to tears in the most beautiful way.

To the family that still has no diagnosis...you know your child better than anyone.  You are going to want to give up...don't.

To the NICU nurse that rocked my baby girl all night and took care of her like your own...I will never be able to repay you.

To the single mom or single dad who is utterly exhausted and overwhelmed…you are doing a damn good job, and you make every single one of us proud to know you and call you a friend.

To the sibling(s)…you have been given an extraordinary gift.  It will not always be easy, and sometimes it could be down right hard...but I promise you this; it will be beautiful, and you will be better by having one another in this life. 

To the family walking into the children's hospital to visit a "Specialist" that you have been told is just one of many to come...I smiled at you and said "hi" in hopes that you would know you are not alone.   

To our Father who has known our journey long before we ever did, and has loved and will love us through it all...I trust you, I love you, and I pray your will be done. 

To the endocrinologist who has committed her life to my child's rare genetic disorder, you are proof that angels really do exist.

To the yearly donors giving funds to support research for my daughter's rare genetic disorder...I will never be able to put into words my thanks.  The hope you give our family is indescribable.

To the teachers and educators that will teach my child…we are on the same team,  and I hope you can sense that I respect and trust you.  Let's work together to meet my child where she is, capitalize on her strengths and refine and work on her weaknesses.  Let’s just always agree to talk about her strengths first, ok?

To the therapists that work with my child weekly, we've become family.  I might not always seem happy or nice, but I'm so utterly grateful for you.

To the individuals with PWS and families who have selflessly and courageously agreed to participate in clinical trials in hopes of finding treatment(s) for PWS.  YOU are trailblazers and world changers.  You’re participating in something so much bigger than yourselves.  And the trial and medication might not work, but then again it just MIGHT.

To the individuals that might consider being mean or bullying my kid...one word for you - DON'T.

To the individuals that accept my child for who she is, and become her friend - quirks and all...words cannot adequately describe my love for you.   

To all the families of special needs we've met and will continue to meet along our journey...I never thought I wanted to meet you, but I'm so deeply glad we did and simply cannot imagine life without you.

To my child...gosh, I love you so much.