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.