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A Dose of Christmas perspective...

12/25/2016

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It's Christmas Day...I'm as emotional as they come because even though I've split the holiday for many years...this is the first year my littles aren't with me at all on Christmas. It is rough, it is heartbreaking...I've been happy, sad, and bitter all within the last hour. However, I received my dose of perspective going back through this precious photos I took yesterday at UVA while meeting Jaxson, Chelsie, and her parents, and then visiting the Roadruck-Tolentino crew catching up on my favorite Iron Man Maddox...

Nursing staff and families desperately try to make the hospital feel more like home during the holidays. From stockings to Christmas trees, presents to holiday socks, even reindeer antler headbands and Santa suit bibs were all seen throughout the NICU and PICU at UVA. All in hopes to just bring a wee bit of cheer to the hospital setting. They all do their best to make the best of every situation, but there is still that hint of despair that things should not be this way lingering throughout the halls...despite the smiling faces and special visits from various people trying to lightening the mood. 

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There are not a lot of visitors up at the hospital, but there is one thing you will find and it is families...parents, grandparents, and siblings alike will all cram around the tiniest of beds surrounded by medical equipment, trying to not trip, pull, or bump against anything for fear it may be problematic. 

Nursing staff do their best to allow families "their special time" with the child they're visiting, but there is always a hustle and bustle throughout the units, as medications have to be given, settings are constantly being changed, and even just the stimulation of having visitors can be too much for these little ones to handle...here is where the perspective starts...a mother praying her newborn baby will finally open his eyes and the first person he sees wil be her, rather than a stranger. A nurse that sees this sweet child in an uncomfortable state, but also is begging for his eyes to open and see his mother for the first time as well...rather than having to give him medications that will cause him to fall back asleep and allow his body the rest it needs to heal.

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My children may not be here with me, but they are not in the hospital either...I'm not begging God to hold them for the first time still...I not having to witness them fight every second of their life against a diagnosis that says, the odds are stacked against you.

I've been in this brand of shoes, just a different model...I've been the NICU mom twice waiting to know what the next day held...but here...it is minute-by-minute. I never had to stand next to their isolette staring at a piece of green plastic, praying to constantly see their little heart continue to beat on its own. The very definition of helplessness as a parent is defined by this picture...but so is the very definition of hope.

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I was bitter until I remembered the frustration, the heartache of having to split a family apart during life-long hospital admissions. Families that have spent their child's entire life living in two separate places. Constantly trying to find a way to be together...but yet knowing the quality of life for siblings while stuck in a hospital or hotel room every weekend to see their sibling isn't fair to anyone either.

Many of these families would never ask for a dime of help from anyone, even though the out-of-pocket costs are astronomical between travel and lodging costs, in addition to just real life bills and responsibilities...they don't see these costs as a burden, they see them as a necessity. Trying to keep their family together, handling not only the complex medical care decisions for one child, the exhaustion of working full-time and raising two other children at home, and then add the stress of trying to maintain normalcy...but knowing that this is normal for us...it is a completely different dimension of life. This daily struggle, is something no one should have to go through, but families do this every day of the year...the struggle is only intensified over the holidays...and comes with all of the same emotions, but a million times stronger. 

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So while I won't invalidate the feelings I had earlier today...I will remember these sweet families, and the immense amount of emotions they're experiencing right now. The families who are hanging stockings and placing ornaments on their tree for children who are not home...and the ones decorating gravesites for children who left this world far too soon.

The holidays are always so full of excitement and joy...but they are also filled with those darker emotions that seem so unfair and cruel to have to feel during such a magical time. The one thing each of these families have is hope...hope that a second opinion will show there is still more that can be done, hope that tomorrow will be the day the swelling decreases enough to close a chest, hope that funding will come through to ease financial strains, hope that their child will finally be closer to home...and hope that one day their normal includes everyone under one roof together.

It is in these reflections...the true nature of what having a child born with complex medical needs is revealed, the face of these diagnoses is truly seen for what they are. Sure, there are all the happy stories of Santa visits and celebrities giving out gifts, but the other side...the family side needs to be seen as well. So while you may be like me right now, sappy and emotional over the not-so-great part of your holiday...remember there are other families in the same brand of shoes, just a different model too. They feel your emotions as well...but if they can still have hope, then so can you.  

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The Spirit of Giving - Snow Buddies

12/18/2016

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Most people by now are in the "holiday spirit;" it is nearing the week before Christmas, and many other holidays celebrated this time of year, but the real message is easily overlooked in the hustle and bustle to make sure everything is just perfect.

Last week I posted about our elementary school's Snow Buddy program. Despite being finacially burdened and having our own personal issues with bills and the lack of enough finances to cover everything due at once, we made the decision to help this child in our local community.

#50 is a sixth grade girl...that's all we know about her other than her wishlist of items on the backside. I don't know a single thing demographic about her otherwise, and yet somehow I know everything I need to and then some from her list. 

She is creative, she is a dreamer, she wants to inspire others, she wants to feel comfortable in her own skin, she is learning to be independent and yet is still just a child, she wants to be successful...and she wants to show just who she really is inside. She wants to be accepted for who she is as well, rather than having to conform to society's view of who she should be. This girl is me at 11 years old.

The two words on this list that caught my attention, tugged at my heart, and refused to let me walk past the tree without taking this snowman with me was "sewing machine." The socioeconomics of our county leave more to be desired...we fall into the poverty category ourselves, we're legally homeless, we depend on what little state assistance we receive to have groceries each month, we scrap by most weeks, we have debts in collections, the list of chaos in our lives could continue for many more pages...and yet with all those reasons for why I could have walked away and said someone else is better off and can be her Santa...my heart couldn't keep walking.

The one thing I have always told my children is that no matter how bad things are here, there is always someone else going through something worse, so even when we have nothing, we can still give to others in need.​​ Sometimes it is just an ear to listen, a hand to help, time to spend, your special talents...those little things that really add up to being something big. Other times it is providing something tangible, a place to stay for the night, funds until payday, driving someone around for the day, providing childcare, or something else that is much bigger or more urgent. 

I wanted to give this girl something so much more than a gift...I wanted to give her an opportunity, a hand-up, a message that says "I believe in you and your dreams." To show her that someone in this world not only supports her, but her talent and desire to make a change in her own life that will help her feel that she is not only worth something, but that she can achieve greatness. Instead of buying a toy, or just fulfilling the basics of clothing...we fulfilled her wishlist in a way she will never have expected. 
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We purchased a half-size sewing machine...that was the most expensive part, but the one thing that I can personally affirm can change the entire outlook of someone's life. It sure as heck changed mine...and I will forever be grateful for the person who purchased my first sewing machine for me 9 years ago now. 

This is originally where we stopped, and then I was reminded that it wouldn't do her much good to have the machine if she had nothing to go with it. So we compiled a sewing kit with all the basic sewing tools (seam ripper, bobbins, thread, scissors, measuring tape, machine cover which the machine is inside in this picture, and a pin cushion with straight pins, etc), added in a sewing book for children, and a small pile of fabric to help get her started. The kids wanted to add in the craft items and drawing items as well so those are there too. This is the one time a year each of these children who participated in the Snow Buddy program are allowed to dream...as big as they want...and while I'm sure we did more than what was "necessary" in the eyes of many, we did what our hearts were called to do.

For us, this is what Christmas is about...and this is what matters the most. Each year we find a way to give to someone else, usually a child or a family through our church, the Salvation Army Angel Tree, or something along those lines. We don't do it to brag about how awesome we are, but rather to show our children that there is always something we can give to others...even in our worst times. And when we give in our times of struggle, we inspire others to do so as well. 

That is the purpose of my thoughts tonight...which are scattered, but I want to inspire others to look for ways to help those in your own community this holiday season. There's a week until Christmas, but there are hundreds of ways you can still help. My children will be spending Christmas day this year with their father...they leave a couple days beforehand. Instead of being home and wishing they were here, we'll be making visits with families that have received gowns who are in the hospital (weather and lack of illnesses permitting). They are a part of my family, just as much as my own kiddos are.

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A look inside - WVU Children's Hospital Hem/Onc Suprise Box

12/11/2016

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West Virginia University Children's Hospital is one of our newest recipients of a hematology/oncology unit surprise box! 

Their hospital was selected in honor of Matthew Rose, who was not only a gown receipient and patient at their facility, but the cousin of our former Treasurer. 

Matthew "Super Matt" passed away in 2014 after a six year battle on and off again battle with cancer. He had been diagnosed with a Wilms Tumor in 2008 on his right kidney. His cancer relapsed three times. He was treated both at a hospital more local to our location, but also West Virginia University Children's Hospital. 

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This is Matthew, when he passed away he not only left behind his parents, but his brother Troy as well. We made Troy a Freckles that matched Matthew's gown before he passed away. 

Below shows the items that were included inside the surprise box that we sent to WVU Children's Hospital. 
  • Beads of Courage Bead Bags
  • Chemotherapy Bag Covers
  • Fabric Headbands
  • Reusable Face Masks
  • Band-Aids
  • Stickers
The first four items were all made from remnant fabric from gown requests and the last two are items that have been donated throughout the year just for this specific collection we do all the time. 

It isn't much in comparison to what these children and teens go through, but we hope they find comfort in the little things...because not only are complete strangers thinking about them, but they're in their corner cheering them on!

We're also working on getting together our Tween & Teen Program that has been officially announced on our Facebook Page, and will be live on our website here shortly as well. This program has two sides that is recognizes the unmet needs of children in the hospital that are over the age of 10 years old, but it is also in honor and memory of another local cancer warrior her that passed away in 2012. 

There will be more to come soon on that - and definitely new opportunities to help support Gracie's Gowns through this program between sewing opportunities, collection drives, and even packaging days.
​

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