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.

The Other Hunger Crisis - Start the Conversation

May 1st 2016...

On this first day of May, I have one thing on my mind...starting a conversation about PWS with others.  I want PWS to be known, and not something that people look at me perplexed and puzzled and say, "What is that?" or "Hummm, I've never heard of that."  Do I think that it will be as known as cancer, down syndrome, or autism?  No, but each are super important and affect beautiful individuals that deserve to live their lives out to the fullest.



So, how can we make PWS known...

Buy a t-shirt

Wear it proudly

Tell a story


And the word will get out that we HAVE to end "The Other Hunger Crisis" NOW. Research holds the key to ending this other crisis, and a substantial portion of funds raised from this t-shirt blitz will go directly to fund top notch PWS research.  High quality research WILL lead to more effective treatments and an eventual cure for the hunger portion of this disorder.



Our family will be selling the SUPER soft and comfortable shirts you see pictured above Thursday 4/28 - Thursday 5/5.  Once sizes are submitted, the shirts will be to me within a week and delivered or shipped to you.  This way you will be able to wear them during the last several weeks of May and beyond.  

Pricing:  $12 (Youth XS - Adult XL)
               $14 (Adult 2XL & 3XL)
               Love a great DEAL?  Buy 2 shirts for $20 (add $2 to 2XL & 3XL)
               Shipping:  shoot me an email, text or message to work out shipping 
               gwynspearman@gmail.com or 864-909-2721

Payment: Cash, check (made out to Gwyn Spearman) or PayPal (gwynspearman@gmail.com)

So, you've ordered your shirt(s).  When it arrives, wear it proudly because each shirt tells a story.

• Your shirt may tell the story of a little 4 year old girl with blue glasses who likes to know every person's name, has a huge affinity for Kelly Ripa, Michael Strahan, and all the individuals on the Today Show, and waits eagerly to hear her name called over the walkie talkie at the end of the school day to see who will walk her out to her car.

• It may tell the story of precious 1 year old little boy who is headed into surgery for what seems like the hundredth time to his parents, but through it all he remains strong, smiles at everyone, and shows us what brave looks like.

• Or maybe yours tells the story of a young woman putting on her boxing gloves everyday to fight her "monster," showing us that it is a battle that she will fight hard and WIN. 

Oh, the stories...

What is the one that is deepest to your heart?

They each make PWS known and shine a light on a rare disease that needs to be talked about.  Funds need to be raised, people need to be educated, and a cure needs to be found...for the Other Hunger Crisis.  

Go tell that story...

Oh, and p.s. - we've already gotten 127 orders for shirts....127!!!!!  #winning