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.

Bear Hugs

Mac ran over to Ellie tonight, his arms open wide for a hug.  And when they reached one another the biggest bear hug ensued.  Both of them feeling all the feels of what it is to be loved and appreciated.  Ellie looked at me and said, "Awww, Mackie Moo just loves me doesn't he???"

It's so crazy how this whole interaction will melt me into a complete puddle of sappy mush, yet make me fight back tears at the same time.

Why all the emotional extremes?

I think it opens old wounds.  
She might never...
Be prepared if she doesn't ever...
Socially, it will be hard...

It also thrusts present worry in my face.  

Friendship. 

Family better love you no matter what, but oh, aren't friendships so hard.  I want both my children to have friends...meaningful, genuine, lifetime friends.  And because PWS entered our life, friendship is just harder.  Plain and simple.

I can remember in the first days after receiving Ellie's diagnosis, David and I had a million thoughts run through our heads.  I can remember just crying at the drop of a hat, thinking about the "what ifs."  I can also, remember David looking at me, with tears in his eyes, "Do you think she will make friends?"  We just held each other.  "Yes, I said.  I know she will."  It is such a raw, sinking feeling when doctors give you a diagnosis.  It is like everything is taken away from you, and things you never dreamed you would be worried about, creep to the surface.  Will my child make friends?  Will she relate to others?  Will she thrive socially?  Will she be accepted?

I still know the answer is yes, she will make and have friends.  But, I have a bit more perspective as Ellie grows older.  Is it harder for her to make friends?  Yep.  Communication has been her first hurdle.  Simply being understood and heard is one of the first ways you make friends.  One thing I've learned along this journey...parents, teach your kids that we are all unique...differences make us amazing.  I know it feels safe to find similarities, but if you open yourself up to differences...you might just change your world for the better.  Being kind is definitely the new cool, but being kind AND being a friend is even cooler.  Sometimes just being kind isn't enough.  

Ellie's other hurdle making friends has been the ability to relate to peers, interact on their level, and just "keep up."  Six year olds like to run around, do cartwheels, play tag, and talk about JoJo Siwa once before moving on to the next topic.  Ellie would long to talk with you about every detail of JoJo's life.  She's not a fan of running, can't do a cartwheel, and might play tag for 5 seconds.  We've worked very hard to learn to initiate conversations and play with peers.  We do alot of role play at home about how to talk with other peers.  What could she say... What could she ask them... Ellie, without a doubt has always had a social aspect about her, and longs to be social with others...it just takes her a little more time to process information, and get it back out to her peers.  Each day I see her picking up more things socially.  Like everyone though too, she also can reach her max and needs and has to have alone or down time.  With each day that passes, I am in the unique position to really see what an awesome personality she has.  She has the greatest sense of humor, and is so funny, like seriously funny.  My prayer for her continues to be that she would have friends placed in her life that truly embrace and love her for her.  I pray that she would be able to garner friends that would be patient with her, look out for and fight for her, and build her up...and that she would do the same for them.  I also pray daily that she would be kind to everyone, but especially be kind, and a friend to those who need it most.

Back to the emotional extremes of Mac and Ellie's interactions....

Ultimately, their relationship shows me that love conquers fear, and even when you're told something might he hard...it's all the more sweeter and beautiful when you witness it happen right before your very eyes.  The connection Mac and Ellie are forming is the most amazing thing...and it absolutely will aid them both along their friendship journeys.

Friends...Ellie will most definitely make them...and Mac will too.  So thankful that they have one another for this crazy and beautiful ride. 

I have a new saying this month, "May is Cray."  Because it is.  Like seriously cray.

I thought I was ready for it and then - boom - it got me.  And...it's PWS Awareness month.  The month that I intentionally fill your need feed with facts, thoughts and writing about our journey.  And life snuck up, and I haven't been posting or writing because of all the cray.  But it dawned on me...what a beautiful depiction of life with rare disease, and heck, parenting in general.  Things happen, curveballs are thrown...you regroup, revisit, and recharge.

So, I'm recharged and ready to revisit PWS awareness.

Our organization, FPWR, has put together incredible daily facts for families to disseminate.  And this one I felt was so important and so timely due to me feeling so crazy this month.  I took this survey, so I'm one of the 142.  And yes, PWS impacts many, I would argue, every aspect of our life in some way.  Sometimes it's subtle...what am I going to pack Ellie for lunch and snack every.single.day?  And sometimes it's in your face...as I watch my 6 year old try keep up with her peers running and playing, or as I hear her try to have a conversation with a peer about something, anything...and that peer walks away or looks at her confused because they can't hear her or understand her.  So, yes...there is burden.

But there is so much more.  I long for and pray for a day that the challenges of PWS be lifted from Ellie and all the other families who have loved ones with PWS.  But would I change our life?  Absolutely not.  Our life is exactly as it was intended and orchestrated to be.  It's hard, it's messy, it's complicated, and it's cray.  But isn't everyone's to some extent?  It's finding the beauty in all that cray that makes it so much more.  It's hearing Mac say, "We lud you Eddie" as we pull up to Ellie's school.  It's watching David chase the kids to their room, and all I hear is giggles and squeals.  It's seeing Ellie walk to the car at pick up and yell, "Bye Sawyer!"  And he yell back, "Bye Ellie Belle!"  And it's hearing Ellie say, "My friends had doughnuts and juice at our party today, and I had water and a Kind bar" and that's totally ok with her.

So it's so important to recognize that we as caregivers, need support and we're crucial when examining and looking at treatment options and avenues for our kiddos.  But it's also so important we make time for self care, and stop and find the beauty in all our cray...especially in the month of May

Feed Me

Lately I've been broken.

Like major mad at the world, cry randomly, not taking care of myself, shutting down, mom guilt...broken.

I haven't wanted to talk about it with hardly anyone.  And those who I do talk about it with, I'm short and sweet...you know how it goes, "life is crazy, but everything's fine."  Well, it's not.  Life has been hard lately, and if I'm honest...it's been hard for the last almost two years.

Mac entered this world ticked off and loud.  And he cried all.the.time...and still does.  He cried when he was hungry.  He cried when he needed his diaper changed.  He cried when he was just mad.  And he cried all the time with gas and because his stomach seemed to hurt him.  Who knew babies and kids cried like this?!  Oh, that's right...not us.

You see, our first child was the exact opposite.  Ellie literally entered the world like a small squeaky kitten.  She never.ever.cried.hardly.  She never woke to be fed.  She never cried when she needed a diaper changed.  She never cried just because she was mad.  And she never cried because something seemed to hurt.

Two extremely different experiences.  Thinking back to before I had Mac, I remember telling myself to be flexible and laid back, and at times now I wonder if I was a little too laid back.  I don't think you realize the stress on yourself until you reflect back.  I was stressed, and that stress just continued.

Mac and I struggled to nurse.  Nursing is hard...enter mom guilt.  Eventually I decided I would pump because I knew without a doubt I could do that.  So I pumped.  Mac started throwing up.  And almost two years later still continues to struggle with throwing up.  I frantically stopped nursing and went out and got the hypoallergenic formula because I was convinced it was a milk protein allergy.  We struggled still, but it got a little better.

We didn't sleep.  We don't sleep.  He hates sleep.  We got reflux medicine.  Things got a little better.  We still didn't sleep.  He hates sleep.  Sleep training didn't work.  Crying it out didn't work.  Eventually we were in a place where almost every time we put him sleep, he got so mad that he he threw up.

He slowly started to stop eating different foods, and became so, so picky.  Like crazy picky.  He barely wanted to eat. All he wanted to drink was milk...all the time.

We had talked with our doctor about constipation and his weird poop, but he was going everyday, so we put it out of our minds really.  Amazing how when you become a parent that so much conversation centers around poop...

Meanwhile, my mind went everywhere.  When you have a child with a rare genetic condition, and your eyes are opened to the medical world, your mind can't help but go there.  I became nervous, scared, mad.  Looking back...mom's intuition is a force to be reckoned with, and as crazy as I felt, I'm glad I continued to wonder.

Enter January this year...

Almost every Friday in January I took Mac to the pediatrician because he was throwing up.  Initially, we were all convinced it was the stomach virus (and still very well could've been), but it kept happening...and I knew something wasn't right.  We decided to get an abdominal X-ray and a referral to a gastroenterology specialist.  The X-ray determined he was extremely constipated...enter even more mom guilt.  And upon pushing to see the gastro doctor sooner, severely constipated.

I felt a terrible feeling that I hadn't experienced since Ellie was diagnosed with PWS.  How could I have not known this?  How could I let him be so miserable for so long?  I still get trapped in those thoughts frequently, but have to remind myself that I cannot dwell on the past.  The past is gone, and we've figured out some of the problem.  We can only move forward.

He's happier now, he's eating more quantity and a little more variety, he's sleeping a little better.  But ultimately, he's happier now.  But here's what I think I'm struggling with...

Tomorrow we go to have an evaluation for feeding therapy.  There, I said it...feeding therapy.  Again, therapy for feeding.  And while I know we're in the the absolute best hands, and it will do nothing but benefit him...it shatters a piece of me all over again.  More therapy, different child.  Totally unexpected.  This wasn't supposed to happen again.  But it is.  And just acknowledging it, makes me feel better.

So, tomorrow as we tackle this new feat...I'm choosing to find joy and give God the glory - thanking Him that our sweet boy is feeling so much better and so much happier.

And this picture that once made me again feel sick, nervous and sad (namely because feeding my child was a struggle all over again), now makes me feel optimistic and hopeful.

A new year

Six.

How can it be?  As the clock strikes midnight, New Year's Eve turns into New Year's Day...2018. And our girl turns another year older.  She's more than one hand today.

As 2017 comes to a close and 2018 begins, it means so much more to me to reflect back, and reflect ahead.  As everyone celebrates at the strike of midnight, we most certainly do too...and they are sweet and exciting celebrations.  But, there is also a part of me that loses my breath at midnight every year...

And I know it's because I am transported back to that hospital room, the NICU, and that time in our lives that was filled with so much fear and uncertainty.  I knew our lives would change that day 6 years ago when Ellie was born, but I just didn't realize the magnitude.  Perspective is what I think I gained 6 years ago.  Life is hard.  Life is messy.  Bad things happen to good people.  God didn't and doesn't cause it.  He's never left me, even though I've been extremely mad and sad.  Spiritually, we go through peaks and valleys.  It does take a village.  Life doesn't have to be perfect, but it does need to be beautiful.  And we must find joy in the journey.

It's so fitting Ellie was born on New Year's Day.  The confetti, the noise makers, the dancing, the gathering together, the excitement, the reflection, the love, the singing, the fireworks, and the joy.  Everyone celebrates your birthday sweet girl, and that's beyond special...just like you.

And even though my heart hurts a little each New Year's Eve, there is so, so much more JOY.  Joy in where we've been, joy in where we are, ans joy in what lies ahead.

Happy 6th Birthday Ellie Belle.  We love you so much.  Thank you for bringing me perspective and purpose 6 years ago...and so much JOY.

Kindergarten

Somehow we're here...the night before Kindergarten, 5K, "Big Girl school," Elementary School.  I'm pretty sure I'll be wide awake tonight, but the utterly amazing thing is, I am at peace.  And, if I think back to where we were 5 years ago, I never would have imagined feeling this way.  I had fear, worry, and quite frankly didn't know what school would look like for Ellie.  But...our girl is on her way to Regular, Typical, Mainstreamed, Least Restrictive Environment, "Whatever You Want to Call it," Kindergarten!  And I can't help but reflect how God has just loved her, and loved us through all of this.

The ELC, CDC, and now AMES.  These institutions of learning have done more than prepared our girl.  They have loved her, loved us, and pushed her appropriately to achieve her absolute very best. To see her growth academically, emotionally and socially has been an absolute joy to witness, and I can't wait to continue it year after year.  That's not to say it's been all rainbows, unicorns and butterflies, and I'm not under the illusion that there will not be challenges.  There most certainly will be.  But, I'm confident that our girl is up for a challenge, has the perseverance to push forward even when it's hard, and has THE absolutely BEST team fighting with and for her.

God has showed little blessings along the way...like having us "run into" her teacher at Target...a beautiful, compassionate, precious soul that we didn't know at all, but now absolutely know without a shadow of doubt was placed in our lives for a perfect reason at the perfect time. God's so good like that.  He's placed friends in Ellie's class that I simply can't wait to watch the relationships grow....the friends are sweet, kind, patient, loving, accepting, and protective.  He's orchestrated her school nurse to be not only a dear friend, but a previous NICU nurse that Ellie had when she was born.  And just today, her 4K teacher (who no doubt has prepared Ellie beautifully, knows her perfectly, and loves her so deeply) from last year called and left the most beautiful, perfect, and inspiring message for me to play for Ellie...and of course, I cried.  I could go on and on about the specific, detailed, wonderful ways in which He has and is showing us He's in control and taking care of her.

And that's where the peace comes from.  From Him.  Will I be worried tomorrow?  Probably.  Will I cry when we turn to leave her?  Maybe.  Will I think about how she's doing every second.  You bet. Will I cherish this feeling that I have tonight?  Absolutely.

So, her backpack is ready, her lunch is packed, her clothes are laid out, we've sprinkled our "1st Day Confetti" under her pillow to have the best.year.ever, and I'm trusting Him as we continue our journey.

One tiny penny

Who knew that one tiny penny could bring tears to my eyes...

You see, that one tiny penny was laying on the bottom floor of our pool last week in the evening; and I watched Ellie dive down to get it.  

A penny, a small, tiny penny.

Immediately, I scooped her up and hugged her tight and we all cheered and told her how proud if her we were.  

After she and Mac were asleep that night, I had a chance to really process it all.  The confidence she has gained in the pool has been incredible.  And I can see the self-confidence she's gaining written all over her face.  To witness it and really see it in her eyes is humbling, year-old, and beautiful.  I think back to a year ago, and she absolutely would not put her face under the water and didn't ever want to go swimming.  When she did go under water, it was a horrible experience and now I know why.  Structurally, she couldn't close off her airway well and water rushed in.  And her overall breath support was super duper weak.  

Imagine, water rushing in and not being able to maintain holding your breath....it's a disaster for swimming, and I most certainly wouldn't want to do it either.  

Fear had set in big time for Ellie.  And fear elicits anxiety...something already present with PWS.  No way do we want to ramp that up.  She spent her time in the pool floating.  After VPI surgery (that helped to correct her hypernasal speech and tighten her airway) in February, I was eager and anxious to get her in the pool.  Once we had our follow-up in June and heard from the doctor that everything healed nicely, I decided to capitalize on the opportunity.  I told her after the appointment that the surgery has helped her with swimming and she would be able to go under water way better now.

That night at the hotel pool, I saw the sparkle of self-confience start.  And there's been absolutely no stopping her.  Ellie has such a beautiful way of reminding me to slow down, embrace the process, and celebrate the small victories.  

First, it was just her mouth and nose in the water, and goggles on her face.  Celebration.  Then, she dipped down and got her ears wet. Celebration.  Next, her whole head went under the water.  Celebration. Then, she remained under water longer.  Celebration.  Next, she got the diving rings off the step.  Celebration.  Then, rings on the bottom of the pool holding on to the steps.  Celebration.  Next, she let go of the steps and got the diving trolls on the bottom of the pool.  Celebration.  Then, she spent literally hours diving for the trolls and gems.  And finally, she dove down and brought up that tiny, tiny penny.  Huge Celebration. And JUST tonight she jumped in the pool all.by.herself and went under.  I just stood in amazement, after we all cheered, yelled and hugged her.  

There's several common threads to all of this....perserverance, precision, and bravery.  Ellie has from day 1, taught me to trust the journey and let her do things on her time.  I think, as parents, we all put such pressure on our children to do this, and then this, and it should be done this way, or by this time, and it better be the best.  But, I couldn't be MORE grateful for having that "taken away" in a sense.  You see, if I think way back, I didn't know if Ellie would ever swim, much less be diving for pennies or jumping off the side if the pool all by herself.  And now, it is THAT much sweeter, and it's helped me to continue to realize that Ellie will do things in her time, and Mac will do things in his.  Both are just as equally wonderful, perfect and "right."

I'm so incredibly proud of our brave little girl, and so grateful so had a brother that yells,  "Yaaaay!" and claps for her as she jumps in or resurfaces with a penny in hand.  And I couldn't help but chuckle as she stood ready to jump in, and looked at me and said, "Mommy, I'm like the Sara Bareilles song, Be Brave!"  Yes, my sweet girl...you so are, on so many levels.

Confidence

Purpose


I've had plenty of passions, but I feel they have come and gone.  School was something I enjoyed and was good at, but I never felt like there was one area I completely excelled in.  I've always tried my best and given my all for things that have driven me. That's not to say I didn't complain, or wish I didn't have to practice in some way.  Just ask my parents about volleyball practice!

But with all these passions and hobbies, I either moved on or there was always something missing.

Then Ellie was born.

I became a mom.  I was changed.  I was completely and utterly broken.  I was at my lowest, but yet proudest point in my life. I was completely out of control.  And as crazy as it may sound...I found my purpose, and gained a confidence like I've always longed for.  And I have PWS to thank for that, even though I despise this syndrome with every ounce of my being.  Weird, isn't it? Something I hate so much...I could also be so grateful for?!

Talking about PWS just comes naturally.  It's almost as if, the moment Ellie was born something switched on.  Even though I felt utterly out of control, there was an inner strength brewing deep inside me that is hard to explain.  At first it felt like my "game face," but as our journey progressed it's grown into such more than that.

Then Mac was born.

Having Ellie in and of itself changed me, rocked my world, and gave me purpose...but after having Mac it's like it happened all over again in a different, but equally as incredible way.  I felt completely out of control again, and there were hard, hard days and nights.  But the purpose, the confidence and the sheer love is totally there.

Becoming a mom to both of these precious little people is an absolute honor and joy. It's molded me, shaped me, grown me, and stretched me in ways I never knew possible. I'm so thankful God entrusted me to be their mom, and praise Him everyday for the love, joy, and passion that has come because if them.

In 4 days...

In 4 days May arrives...

Go on the journey with us again.

#PWSawarenessmonth #somanystoriestotell
#TrustingOurJourney

On Rare Disease Day...Ellie went to College

I don't want to forget this day...

Maybe it was the confidence Ellie had today
Maybe it was the warm, receptive nature of the class
Maybe it was Ellie owning the fact that she knows what is good for her belly and what is not
Maybe it was because Dr. Labanick always make us feel so welcome
Maybe it was because a beautiful student made me cry by touching my momma soul and lifted me up
Maybe it was the student that offered a piece of advice about anxiety because they know firsthand
Maybe it was the thoughtful and sincere questions the students asked
Maybe it was because I didn't run out of time presenting
Maybe it was Ellie cracking me and all the students up on multiple occasions
Maybe it was hearing that a previous student told others all about PWS when the opportunity arose
Maybe it was all of this

You see, today was our sixth visit to the University of South Carolina Upstate to share our journey of PWS.  We've talked to students taking Genetics & Society and students taking Developmental Biology.  Every time Ellie and I go, I leave feeling so thankful for the opportunity.  Our first visit, Ellie was in a stroller, and just shy of turning 1.  Today, my 5 year old walked in like she owned the place.  Obviously she had many questions...she needed to know where the mascot, Sparty was, and why the students weren't in the classroom right when we arrived?  We were early, can you believe that?!  Go us.

We had brought FPWR wristbands for the students, so they could remember our visit, and that was Ellie's job to pass them out.   She had carried them in, packed in her Trolls valentine bucket and was super, duper proud of it.  Once everyone arrived and Dr. Labanick introduced us, I tried to begin the presentation...but Ellie had other plans.   She looked out at the class, and so confidently and clearly said, "Class, raise your hand if you love Princess Poppy?"  I repeated the question, and almost everyone in the class raised their hand and rolled with laughter.  We then went on to educate them on the greatest movie of all times, Trolls.  Just when I thought she was done, she looked out again and said, "Ok class, raise your hand if you know my name."  Laughter erupted again, and Dr. Labanick informed the class that her question would make an excellent test question.

I always feel so comfortable talking about PWS and sharing our story.  Maybe it's because it's something I feel in control over, maybe it's because I look at Ellie and feel the drive to share her beautiful story, or maybe it's because it's become my purpose.  The presentation flowed so well today, except for when Ellie decided to use the Trolls bucket as a mega phone, or when she felt the need to interject tidbits of randomness.  For a 75 minute class though, I thought she did amazingly well.

But, nothing could have prepared me for the end of the class.  A beautiful young woman came up and shared her precious journey with me of challenge,  She affirmed that Ellie's diagnosis does not define who she is, doctors can't predict her future, and looked me straight in the eyes and said, "You are doing a wonderful job.  She feels your strength, and all that you are doing for her.  My mom did the same thing...she was with me through countless surgeries, hours upon hours of therapy, and I am better for it."  Tears were flowing.  She will never know magnitude of her encouraging words and just how deeply she touched my soul.

So, on this Rare Disease Day 2017...I'm feeling completely and utterly emotional, yet deeply and profoundly grateful for the opportunity to share our story; and blessed to have these rare, beautiful moments where I know it's God's way of showing me He taking care of our family, and is using this for good and for His glory.

            

Five Years...

New Year's Eve & New Year's Day...

Parties, fireworks, bubbly champagne, midnight, staying up way past your bedtime, friends, family, food, weight loss, resolutions, goals.

Every year for David and me it's a hard time, laced with anxiety and sadness but also happiness and joy.  It's so odd feeling all those emotions at once.

To be honest, this year I didn't stay up and watch the ball drop because I didn't want my heart to hurt.  I didn't want to be catapulted back five years...

Five years.

It seems so long ago, but yet just like it was yesterday we excitedly drove to the hospital, asked the nurses if the New Year's baby had been born in Spartanburg County yet, put our game faces on and vowed that we would make that happen, somehow made it through the epidural not working on one side, anxiously got ready to push, and then, well...everything changed.

The voices of the medical staff changed, David was ushered out of the room, an emergency C-section quickly occurred, and our precious baby girl entered this world...but there were no baby cries, no confident congratulations, and the scary unknown future took on a whole different meaning that day.

PWS entered our life as we celebrated Ellie's birthday and the world's birthday that 2012.  Most days I despise PWS and the cruel syndrome that it is, and for the challenges it puts on our precious baby girl and our family.  I'm reminded of it a little bit more on her birthday...

But then I realize that I don't ever think about what Ellie would be like if she didn't have PWS.  Do I wish she didn't struggle with its challenges?  Yes.  Do I hope for treatment soon?  Yep.  Do I believe there is a cure in Ellie's lifetime?  Absolutely.  But, I don't ever want to think about what she would be like if she didn't have PWS, because that wouldn't be Ellie.  She was and is perfectly created.  God knew exactly what He was doing the moment she was conceived, when that tiny deletion of chromosome 15 occurred and it was perfect.

Today she woke up so, so excited for her birthday.  David cooked us a big, wonderful breakfast of eggs, bacon, and sausage.  She helped me make her cake...something I NEVER, EVER would have imagined 5 years ago.  We went to the mall to eat lunch and play.  And tonight we celebrated her with the cake she was so excited to have.  To see her beam with pride wearing her birthday girl ribbon, and as she saw the cake being placed in front of her are moments I will treasure from today.  She was so thankful, gracious and appreciative of the special drink and cake she got to have tonight and it just made me want to cry.  Something so simple and so often taken for granted, she absolutely loved.  Oh, it hits me hard.

  

So, as she turns 5 today, even though these hard emotions come rushing back...I marvel at her beauty, her accomplishments, and the future.  She is so beautiful.  She has accomplished so much.  And she has the brightest future ahead of her.  Happy Birthday, Ellie Belle...we love you so, so much.

  

  

The first graduation...

I'm having a hard time writing this...

How do you fully express and put into words the gratefulness you have for someone who has impacted your family's life so deeply?

You see, today was a big day in the life of our family (and I have tried to act like it's no big deal, but it is).  Today was a graduation, and the ending of a chapter of our lives that has become so deeply a part of me and so deeply a part of Ellie.  Early Intervention and our visits with Sarah Gaskins are over.  Ellie graduated...

I think back to the day Sarah arrived at our house.  It was April 2012.  I was nervous.  I was scared.  I was in shock.  I was in denial.  And I was looking for hope.  Enter Sarah and Bright Start.  She loved Ellie before she even met her, and from the get go she filled our home with hope, joy, grace and goodness.  Ellie was 4 months old, and our first visit we worked on getting her to move her head back and forth to strengthen her muscles, and now almost 5 years later, Ellie is putting three letter words together.  I tear up just thinking about this.

Sarah helped us navigate Medicaid, therapies, paperwork, doctors, specialists, screenings, evaluations, medical tests, play dates, school, diet, IEPs....

She listened, encouraged and pushed me to raise awareness for PWS, as well as was my right hand at all our fundraising efforts.

She talked me down when I panicked, or got offended and hurt (having a child with delays is hard).  And she was always one of the first people to call or text to ask how things were going, anytime something was going on with Ellie.

She learned Ellie's strengths and helped to hone and improve her weaknesses.  She knows Ellie on a level that is incredible, and loves her so, so much.

I know even though her weekly visits will stop, and we won't complete the mounds of paperwork and weekly summaries...it's not over.  We've gained something so much deeper.  A best friend, a family member, a cheerleader, a world changer, and a difference maker.  And for that, I'm eternally grateful.

Thank you, Sarah for all that you are and all that you do.  God orchestrated this relationship when we were in the NICU and one of our nurses said, "I have a friend who works as an Early Interventionist.  Tell them you want to work with Bright Start and ask for Sarah Gaskins."  His plan is always perfect, even in the midst of our greatest struggle.

Mac Attack

The Mac Attack...

He busted on the scene March 3, 2016.  Our world changed again that day.  Having another child, and a "typical" one at that, has been wonderfully exhausting.  It's taken me awhile to really process it all. I've had so many thoughts, feelings and emotions surrounding it.

His birth was hands down exactly what I needed...planned, predictable, not traumatic, and happy. The one thing that I will cling to, and that makes me tear up typing, was his cry.  It was piercing, strong and exactly what I needed to hear.  I immediately cried upon hearing him....I cried because I was so happy to hear what every mom longs to hear when their baby is first born, and I cried because it broke my heart all over again, remembering Ellie didn't do this.  If I'm honest with myself, this is how it has felt the whole time...up and down.  Happy to experience the healing of a typical child, but yet sad to be catapulted back to the fear and worry surrounding our experience with Ellie.

Learning Mac has been a process, and one that only few will truly understand.  I've honestly struggled more than I've realized.  Anxiety, worry, and fear has crept back in and it's really felt like we're first time parents all over again.  The first month was H.A.R.D.  I think because we truly leaned on the NICU heavily Ellie's first month of life...we had no choice.  But things you take for granted like diaper changes, feedings, sleep have taken on a whole new meaning.  We did these things in the NICU as much as we possibly could, but still a large part of this was done for us by nurses and doctors.  And let's just marinate for a second on the crying.  Oh, our dear, sweet Mac cries, and cries, and cries.  Totally different than Ellie...she never did, and yes, I really do mean never.  In all honesty Mac may not cry that much, but if you think for a second about what we experienced with Ellie, it's truly a different world.

Mac has helped us heal...

Holy muscle tone, the kids is super strong.  Every day a piece of me always thinks, "Oh, so that's what they meant about muscle tone."  David and I spend a lot of time saying things like, "Look at that head control! or "Did you see him already bearing weight on his legs?!"  Of course, again it makes us super happy for the strength he has, but I can't help but feel a little piece inside of me die...because Ellie struggles with this.  Thinking about it though, he is going to challenge her, and she will challenge him and it will be beautiful.

The bond they already have is super incredible.  Ellie deeply loves her baby brother.  She talks to him, sings to him, loves to rub his cute little nearly bald head, and truly exudes so much pride being a big sister.  Mac just grins when she does all this, and I just try to make sure to protect his soft spot (what is it about little hands wanting to go straight for this?!) and make sure she doesn't smother him!!

As each day passes, it gets easier having two.  We are settling into our new normal and developing a routine.  Mac is a huge blessing to our family, and I just love him so much.  I'm so thankful for this little boy and his big strong sister.

A Green Folder

Yesterday morning I was cleaning and organizing our office space.  I'm headed back to work in a couple of days after maternity leave.  David and my mom would be so proud.  You see, I don't throw anything away....

But, I found something, and it knocked the air out of me for a second.

A green folder

The tab said "Greenwood Genetics."  We have quite a few things that say Greenwood Genetics, so I didn't think much about it until I opened it.

Business cards, printed articles on PWS, a bound booklet titled "Reflections of Hope," and two pages that had been ripped out of a notebook with questions scribbled on them.

Everything in that folder took me back four years.  It took me back to the very first time David and I met with Greenwood Genetics Center before we received Ellie's diagnosis.  Clinically they believed that Ellie showed all signs that would point to a diagnosis of PWS.   We had been told to research/google both Prader-Willi syndrome and Angelman syndrome.  We were terrified, confused, and mainly numb.  On the way there we listened to a CD of songs.  Songs that were carefully selected and put on the CD, specifically for us by some of our best friends.  The drive was long and we didn't do much talking, but I do remember one thing - we came up with a list of questions and I scribbled them down on a notebook I had with me...

Behavior - can she go out?
Does Prader-Willi affect girls and boys differently?
Will she be able to interact in social settings?
Will she be loud and hard to handle?
What are the different doctors we will need to have Ellie see?
Will she constantly look for food?
Will this rule her life?

In that moment, I remembered what we were feeling.  We were scared.  We were sad.  We were nervous.  We were numb.  A LOT rode on the answers to those questions.  Some answers we were relieved with, and other answers cut us to our core.

As I looked at them yesterday, I realized - it is true how time heals.  My existence does not ride on the answers to those questions anymore.  In fact, I realized I don't even think about them hardly at all anymore.  Prader-Willi is a devastating diagnosis, but as soon as we decided to bring it to the light, educate others on the desperate need for research, find people and groups that get it, and share our story - that was only when our life took on a hopeful and positive trek. .

These questions are a huge part of our past, but they will not dictate our future.