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

Back off PWS!!

On this last day of May 2015, I want to share this picture.  It is my most favorite picture ever of Ellie, for lots of reasons.  I look at it and just crack up, because it fits her personality so, so well.  She has a story to tell, and when she does, let's just say she talks with her hands! I also love it because she looks so beautiful in blue.

But it means so much more to me.  I see an inner strength that surpasses anything I could've ever imagined when we received the PWS diagnosis.  She wakes up every single morning happy and eager to start her day.  That's more than I can say for me, most mornings.  She has a zest for life that is contagious, and takes in each new situation carefully and joyfully.  She works so hard at, literally, everything she does, and rarely ever puts up a fight.  She truly is an angel in so many ways, and I know David would agree with me, she is totally our angel, sent to us a just the right time.

I think it is fitting to end the month with this picture because I can almost see Ellie saying the words, "Back off PWS!"  I can see the fight in her, to battle this rare syndrome that we were all slapped in the face with, and most everyone else knows nothing about.  This picture makes me want to fight even harder for her and her friends, because each one that I meet has this fight in them.  They deserve a life not plagued by hunger, anxiety, or hurt.  And when I look in these little eyes, I know she is not giving up, so I never, ever will.  We will fight harder, educate and advocate more, and love deeper.

My prayer for her is that she will remain steadfast and trusting to the wonderful One who made her.  When days are good, we will praise Him.  When days are hard, we will cling to Him.  

David and I, seeking the Lord's will and guidance, will take care of her the best way we know how.

So, Back off PWS!  The Spearmans and all the other wonderful, supportive, amazing members of our community will eliminate you one challenge at a time!!

Ellie smiles...

They will make your heart melt into a puddle, and there's nothing better in the world than an Ellie smile. Ok, ok...maybe an Ellie hug or kiss!!

                                                        

Live Life Full

What does it mean to Live Life Full?

PWS parents take it very literally.  At its most basic level, we simply and literally want our children to be able to eat and feel full...not hungry or starving all.the.time. 

But yes, it also means so much more.

We want them to experience happiness and joy in this life.

We want them to face change and trials confidently and courageously.

We went them to find fulfillment in a career.

We want them to make and keep friends.

We want them to form meaningful relationships, finding their significant other if they choose.

We want them to contribute to society and find their purpose and passion(s).

We want them to have a family of their own, if they so choose.

We want them to impact others and this world we live in.

We want them to make the world better.

We want them to Live Life FULL.

Independence

With each day that passes, Ellie grows older.  She is no longer a baby....even though she likes to pretend she is!  She is a little girl.  Graduations are occurring all over the country...elementary, middle, high school, and college.  

And I bet each parent is thinking the same thing...this happened so fast, my baby grew up right before my eyes, and man, time really flew!  I think about all this in a completely different way.

David and I will be those parents sooner than we know.  Time doesn't and won't slow down.

But we need it to.  I mean need it to.  Each day that passes, is one more day that Ellie has to live with the insatiable hunger that PWS dishes out.  Yes, it's a spectrum disorder, and yes, different individuals experience the insatiable hunger at various levels, ages, and intensities, BUT they will all have to deal with it.  And I want and long for that to CHANGE.  I want to change the course of this syndrome.  Human Growth Hormone (HGH) changed the course of PWS in 2000 thanks to incredible parents, researchers, and medical professionals.  But PWS is complex and it's complicated...the brain is involved, and that's tricky business.  

With each day that passes, Ellie becomes more independent...

I love that, and hate that.  Every parent longs for their child to gain independence, make good choices along their life journey, and ultimately contribute to society....I'm no different. David's no different.  But PWS has thrown us a curve ball, and makes me scared.  Can you see why I need time to slow down.  I need more time and days for Ellie to be able to live independently.  At this point in time, as it stands with the state of the disorder's trajectory she couldn't be left alone around food...she would need help...she would need to live with us or others that could help her.  And while, I fully accept this and will do whatever it takes to keep her safe....I long for her to live life FULL and independent of David and myself.  I have hope, I have fight in me, and I know my God is bigger than PWS.