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Operation NICU Surprise - Johns Hopkins Children's Center (Maryland)

7/11/2014

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Our second NICU we chose to receive a box of NICU Smocks was Johns Hopkins Children's Center NICU located in Baltimore, Maryland. They have a state of the art NICU that was built in 2012 and it includes 45 private NICU beds. They services neonates with all sorts of complex congenital birth defects and disorders in addition to the little ones just born too soon. The thing I love the most about their new NICU is that each room has the ability for a parent to stay in the hospital with their baby, something most NICUs don't have, well many intensive care units don't have that, even the ones for adults. You can learn more about the NICU and what they offer through their website at: http://www.hopkinschildrens.org/neonatology/

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Johns Hopkins Children Center's NICU was nominated by Adrianne in honor of her son Xavier who was cared for by the wonderful doctors and nurses in the NICU. Xavier was born with more complex issues than just premature delivery, but the doctors and nurses went the extra mile to care for him through it all. This was a few years before the new facility was built, but Adrianne was awesome in sharing with us some photos from and (and now). You can read their story below in her own words.

My son, Xavier (now 5), was born 4 weeks early due to low amniotic fluid. I had a normal pregnancy and didn't expect anything different despite his late prematurity. Little did my husband and I know that on Friday March 13, 2009 things were about to change dramatically. When Xavier was born (at 4lbs) there were immediate signs of distress...he had difficulty breathing as well showing signs of seizures. He also looked different than typical children. He was born at a hospital close to our home that had wonderful OB/GYN and infant care. But despite their best care we were told they were unable to provide enough support for Xavier in their NICU. We were told on his fourth day of life that he had to be transferred to Johns Hopkins in order to undergo further testing and access to doctors skilled in more complex cases. We were in shock to say the least. We were not expecting any of this and suddenly our lives were turned upside down. Getting to the NICU at Hopkins was a whirlwind of nurses, doctors, and tests. I have to admit I was bitter and just wanted to bring my son home and not have him poked and prodded. We were told that Xavier likely had a genetic syndrome and he was, in fact, experiencing seizures. He also had to learn to breathe and eat on his own. It was noted that he also had a number of congenital anomalies. Xavier spent a total of 32 days in the NICU and in that time my husband and I created relationships with doctors, nurses, and even other families that last until this day. They rallied in our highs and supported us in our lows. Xavier's nurses gloated at the fact that I was able to provide him solely with enough fresh breast milk and at the skill of his dad as he was the only one Xavier would drink from a bottle for. They called us immediately with good test results and sat with us to understand more difficult ones. In that time out dread and fear were able to be calmed by simply talking with the nurses about "normal" things. We joked, talked about the weather, and we brought them food (a fed nurse is a happy nurse lol). When the day came for X to come home our doctor met us in the hallway singing the Rocky anthem as we strolled X's stroller into the NICU. You never want to see your child go through such difficult things but I know our son was in the best hands. 2 years after his birth Xavier was finally diagnosed with a rare genetic syndrome called Schinzel-Giedion syndrome. He's one of approximately 12 kids worldwide. We would have never gotten this diagnosis had it not been for our geneticist and genetic counselor...providers who have been with us since the NICU. We have been with our different specialists through surgeries and hospitalizations. Each year we attend the NICU reunion to see the nurses and other babies who were with us from the beginning. Xavier has even attended daycare and now school with the little girl who was next to him in the NICU. We never expected to have a child with special needs but we are fortunate and forever thankful to the staff at the Johns Hopkins Children's Center NICU.
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Thank you so much Adrianne for nominating Johns Hopkins Children's Center and for sharing your story with us and our followers as well - the NICU Smocks have already made their way to Johns Hopkins Children's Center (they were mailed the first week of this month) and we hope they bring many smiles to the facility, but even more so to the families that receive one of them for their little one. Here are a few pictures of the gowns and because my oldest colored the box so pretty, she insisted I share a photo of that as well.
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When we have more sewn and ready, we will work on pulling some more NICU nominations and dispersing them to other hospital around the United States and the world. It is such a blessing to send these everywhere we can, but even more so to wrap the littlest miracles in something comfy of their own.

Have a beautiful weekend!
Gracie's Gowns
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Operation NICU Surprise - Tripler Army Medical Center (Hawaii)

5/20/2014

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Earlier in the month we asked everyone on our Facebook page to nominate a NICU and/or Hematology/Oncology unit or clinic that was there favorite to receive a special surprise from Gracie's Gowns!

We are choosing two NICUs and two Hematology/Oncology units from those nominated to receive a special box from us. The first NICU was chosen - and it is going to Tripler Army Medical Center's NICU in Honolulu, Hawaii! Jennifer nominated the hospital after her son Colton (who is also a Gracie's Gowns recipient) was born and cared for by the NICU staff. She was awesome enough to include a story of his stay and just how wonderful the staff was - and some sweet photos to share as well!

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Here is her precious Colton when he was born and cared for back in August of 2011. She includes the following about the hospital and staff at Tripler Army Medical Center's NICU.


"Our son was in the NICU for 12 days in August 2011. Our pregnancy with my son was very rough. Not many doctors believed he would make it or he wouldn't live long after brith. The NICU was just very amazing with him. They did everything they could to help him and it was so nice to finally have someone believe in him. They felt like family to us when we were there. And they just went above and beyond for my son. The NICU staff was just amazing! My son had an MRI when he was 1 1/2 months old and they let my son back into the NICU to be observed overnight bc they knew I was very uncomfortable with him going to the PICU with a bunch of sick kids. They were very understanding and cared very much for my son! And being a Military Hospital a lot of kids are in there with just one parent and no other family members to help them out during a stressful time in life and they could use a little a cute hospital gown!"

The photo above on the left is Colton in his gown from us back in September of last year (2013) and the photo on the right is him today at 2.5 years old! Look how much he has grown and how precious that smile is!! Way to go Colton - you've come so far and we have no doubt it was because of the fabulous start and care you have received since coming into this world! 
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So what's the surprise we're sending to Tripler Army Medical Center's NICU?

Well, we are sending them thirty NICU smocks to be distributed to the babies they care for! We know it doesn't remotely even make a dent into the 1,100 babies they serve annually, but at least there will be thirty styling babies this year!

These will be sent out this week to Hawaii and we hope they are received with much love and bring many smiles to the families that receive on of the gowns!

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Thank you Jennifer for nominating Triple Army Medical Center's NICU and sharing Colton's NICU story with us and allowing us to share it with all that may read our posting!

Thank you as well to Kim for sewing pretty much every single one of these thirty gowns going to the NICU (after we drew the name - we learned Kim's granddaughter was born at this hospital as well, but fortunately did not need to be admitted to the NICU). 

Stay tuned for our second NICU to be drawn once we have the items completed - but also for our Hematology and Oncology units/clinics to be chosen!

Lots of Gracie's Gowns cuteness to come!
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End of Spring Raffle Winners

5/6/2014

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Our spring raffle ended last week and we rounded out the items given away with several great prizes!
All prizes have been mailed out and should be received very shortly if they haven't already arrived - there are a few I still have to deliver in person, but that will be taken care of this week as well.
I would like to say thank you so much once again to everyone who helped out with this fundraiser and while we didn't reach our goal in ticket sales, we still broke even with our expenses and have a great time seeing everyone get excited about the items they won!
We hope everyone enjoys their new goodies and we look forward to doing our summer charity raffle late July or early August depending on when I can finish getting everything sewn up and completed.
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Our twenty-second winner was Brenda Hill - her items were from Scentsy!

The items for this day in the raffle were donated by Christi Smith - a Scentsy consultant that is also the mother of a child we have made a gown for. 


This cute bunny is a charity item by Scentsy for March of Dimes - we'd love to be able to get a few more of these to include with our NICU gown donations to hospitals.

Christi's business website is:
http://csmithrn04.scentsy.us

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Our twenty-third winner was Karen Valdez - her items were from The Pampered Chef!

The items for this day in the raffle were donated by Audra Smith - a Pampered Chef consultant that is close friends with a gown recipient's family.

Audra's business website is:
www.pamperedchef.biz/audra

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Our twenty-fifth winner was Brianna Horney - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Marie Snyder - a local Pampered Chef consultant to Gracie's Gowns.

You can find Marie's business page on Facebook at:
https://www.facebook.com/PampChefLady

And her business website is:
www.pamperedchef.biz/foodisfun

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Our twenty-ninth winner was Megan Jensen - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Marie Snyder - a local Pampered Chef consultant to Gracie's Gowns.

You can find Marie's business page on Facebook at:
https://www.facebook.com/PampChefLady

And her business website is:
www.pamperedchef.biz/foodisfun

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And there you have it - the last of our raffle winners!!
CONGRATULATIONS to all our winners and once again thank you so much to everyone who helped, donated an item, purchased a ticket and just spread the word about our raffle!
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A Little Break in Routine

4/15/2014

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Okay - so old picture, but had to use something with the sewing machine. I love sewing these hospital gowns, I love sewing them for your little ones and seeing their smiling faces and knowing how it can literally change a hospital experience from bad to at least tolerable. 

Sometimes though, I have to break the routine of making gowns and work on other projects, just to keep from crying over how many precious little ones are in need of such an item. It breaks my heart in so many pieces at times, that I have to sit back and remember how much of a blessing each child is, how they have changed the lives of those around them...how they fight, just to make it through another day and while yes, the odds are usually stacked against them, they inspire others to do such amazing things - like Gracie's Gowns and so many other organizations!

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One of the items that have been done and still being worked on were these squishy little monsters! We sold them over the course of a couple days in order to raise shipping funds for gowns.

I am happy to say they are almost all done and out in the mail (still have maybe 7 more in total to make I believe). Here is some of the ones that went out last week, as I didn't get pictures of the previous ones made to post. My apologies on that...they are too cute not to picture and post.

These guys come from leftover minky fabric that I have from making millions of blankets over the last few years I have been making for friends and family.

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One of the other items that get worked on in those little breaks are some bags for Beads of Courage - I love making these little bags from leftover pieces from gowns!

They are easy enough to make and still give that feeling of inspiration and fulfillment I suppose in knowing the fabric we use won't go to waste and can brighten the days of so many other children too.

This year we have 17 bags made so far to donate to Beads of Courage and will probably have close to 50 by the time the donation is ready to be made. We are hoping to be able to donate them to our local hospital with a Beads of Courage program. 

Lastly, whenever I really want to venture out into my sewing fun - I go back to making little items from leftover pieces of fabric and working through my own personal fabric stash and creating other items that we will be taking with us for our craft show in October - last year we raised $900 for Gracie's Gowns with items made from leftover pieces and whatever fabric I had on hand - this year we're hoping to meet and exceed that amount...especially with the Christmas Box Program coming up at that time of the year as well. Right now we've loaded the items into an etsy store (which will be put in vacation the Thursday before the show) to try and sell some of the items throughout the year with all the money being put into our shipping expenses. So here is the etsy mini with links in case you want to browse it!
With all that fun being said and shown - no worries, gowns are still being made, still being sent out and Gracie's Gowns is rolling right along like we always do. Sometimes just a little slower than normal, because we are in the process of moving and my health has gotten a little "interesting" for lack of a better word, but we are still upholding and maintaining our mission to provide every child we can a special hospital gown of their own to wear while in treatments, surgeries and hospital stays!

Much Love and Many Blessings,
Jessica
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First Week of Winners - Spring Raffle

4/8/2014

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Our first week of winners and a special drawing winner have already happened!! So exciting and the majority of these items have already been mailed out too - thanks to some extra running around we've had to do in our personal world and was able to swing by the post office on those trips too.
We're excited to start another week of winners - after I draw today's winner - we still have 22 awesome days of prizes left to give away and another special drawing prize if we can still 200 tickets in total (we're at 117 right now). Lots of great Pampered Chef and Scentsy items are being given away and you're not going to want to miss out on the upcoming prizes for sure!
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Our first winner was Debbie - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Marie Snyder - a local Pampered Chef consultant to Gracie's Gowns.

You can find Marie's business page on Facebook at:
https://www.facebook.com/PampChefLady

And her business website is:
www.pamperedchef.biz/foodisfun

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Our third winner was Patricia - her items were from The Pampered Chef!

The items for this day in the raffle were donated by Audra Smith - a Pampered Chef consultant that is close friends with a gown recipient's family.

Audra's business website is:
www.pamperedchef.biz/audra

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Our fifth winner was Ellen - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Marie Snyder - a local Pampered Chef consultant to Gracie's Gowns.

You can find Marie's business page on Facebook at:
https://www.facebook.com/PampChefLady

And her business website is:
www.pamperedchef.biz/foodisfun

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Our seventh winner was Becky - her items were from The Pampered Chef!

The items for this day in the raffle were donated by Audra Smith - a Pampered Chef consultant that is close friends with a gown recipient's family.

Audra's business website is:
www.pamperedchef.biz/audra

CONGRATULATIONS TO EVERYONE!!


To purchase your ticket(s) you can visit our website under the events tab - www.graciesgowns.org/events.html
and purchase them there using the Add to Cart button through PayPal.
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Lucy's Bunny for William

3/12/2014

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I know we posted about this on Facebook, but I just really felt like I wanted to write and post it on our blog as well - especially since we have followers here, that don't Facebook.

Every so often (and much more than I ever want to admit or think about), we have a little one that passes away before their gown is received. Sometimes even before we have started their gown request. While I know it is always a possibility, it is still the hardest part about operating Gracie's Gowns.

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Lucy is one of those precious little ones. I had just completed with sewing on her gown and the next day her mother Rinda messaged me through Facebook saying her precious little girl had passed away. She was born with hypoplastic left heart syndrome and the complications from her heart defect gave her a beautiful set of angel wings.

I asked her mother if she still wanted Lucy's gown as a keepsake and she said yes, but then I had another idea in my head and heart to make it a little more special - Lucy didn't just leave her parents behind, but also an older brother named William.

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It was agreed that my little idea was perfect for her brother William - he is three years old and is having a hard time understanding why he can't see his baby sister anymore...it was to put Lucy's gown on a special animal and send it to him. So whenever he misses Lucy, he can give this animal a hug and send a hug to her as well.

The search began for the right size animal and I found this fluffy bunny that her gown fit perfectly on.

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This precious bunny came from our local Build-A-Bear store in the Spotsylvania Towne Centre. I went there knowing their animals were a bit larger and in prayer I would find something perfect.


I got a huge surprise though while there - as the bunny was being stuffed by the manager, we were talking about what occasion it was for and I showed him Lucy's gown and how it was for her brother. He noticed the angel wings right off the bat and I told him she passed away at fifteen days old from a severe congenital heart defect. The manager then took the tag off of the bunny and donated it to her brother William.

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I even showed him the little heart snaps that we used on the back of the gown, while we were putting it together.

The manager refused and I mean refused to let me even remotely pay a dime for the bunny - and I couldn't have been more blessed to see this idea become a reality for William and Lucy's parents.

This precious bunny is making it's way to their home in Australia as I am writing this posting and I know it will be received with many, many hugs. 

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There she is - Lucy's Bunny.


As hard as it is to lose one of our little ones, period, it is so hard for me for them to pass away before we can get a gown to them. But now we have this amazing, heartfelt way to still provide a little something for their families to hold onto. It is a blessing to finally (after almost two years) have a way to remember these little ones as well and their brave fights, however long or short they may be. 
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Donation to the Little and Dependent

1/25/2014

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Eastern Tennessee Children's Hospital is one of the most amazing children's hospital in the country. Not only do they care for a variety of pediatric illnesses and needs, but they have a super special NICU. 

The reason their NICU is so special is because they are one of the hospitals that treat the highest number of drug-dependent newborns in the United States. And we aren't talking street or illegal drugs...these are prescription pain medications and most obtained under normal circumstance.

These babies are weaned off prescription medication, by being given doses of morphine until they are able to tolerate being completely off any kind of opiate. This process can take days and week to accomplish. The unit can hold 49 infants and over half of them are born with neonate abstinence syndrome (drug-dependent), these babies have to be watched around the clock for seizures and even worse, in case they stop breathing.

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When I was in college, this was a topic I was starting to write a research paper on...it is a personal subject as my youngest was born drug-dependent and not because I misused my pain medication, but because I was given excessive amounts of pain medication between all of our admission during pregnancy for pre-term labor and for the amount of pain I was in throughout the entire pregnancy because of the amount of scar tissue I had and two pregnancies very close together and severe anemia issues as well. 

Only problem was, when she was born, we didn't know what was the cause of all the problems we had in the first two months of her life, until I happened to read a forum on drug-dependent babies and all the pieces fell into place. It was scary.

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So when Ellen from Socks 4 Surgery posted the articles published in 2013 about Eastern Tennessee Children's Hospital and what their NICU was doing - we decided that some extra comfort needed to be sent to these precious little ones as well.

Ellen sent out socks and hair bows and in her awesomeness asked if we had any gowns that we could send their way as well. I had to wait until I got back to the house and went through what we already had sewn NICU Smock wise and put together a box that we will be sending out the the hospital this Monday.

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So in total we have twenty-eight gowns headed to the hospital's volunteer services and some of our brochures to be used throughout the hospital for other children that may want a gown of their own as well.

We will keep praying for the hospital's staff and volunteers that are working with and caring for these precious babies and their families. We pray for the babies and their families as well through this rocky start to their journey and lives. 

We hope these gowns find each little doing the best they can and provide them with a little extra comfort.

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Clicking on the picture above will take you to a brochure (PDF Format) the hospital has created on Drug Use during Pregnancy and about Neonatal Abstinence Syndrome.
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CureFest 2013 

11/2/2013

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On September 1st, 2013 - Gracie's Gowns participated in CureFest for Childhood Cancer on the National Mall in Washington D.C. with 52 other organizations. We banded together for the day and there on out to advocate for pediatric cancer awareness, research, treatments and cures.
The event was co-hosted by Journey 4 A Cure and theTruth365 - both have done amazing things for children battling and surviving cancer. They not only bring awareness and research funding, but they get to you on a personal level - they tell each child's story, I'm sorry I need to rephrase that - they have each child tell THEIR story, each family share their experience in ALL aspects of the cancer world, the successes and even more heartbreaking, the losses. They show the real statistics of the pediatric cancer world and if you read each of them...it will change your life forever.
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At CureFest they had several speakers - parents, siblings, organization representatives...but the ones that shook you the most were the children.

Gabriella was one of those children - her speech had you laughing at one minutes, inspired throughout and in tears over the reality of what cancer does to children. Her speech was beyond motivational - there was no way you could hear her give "the cold hard facts" without making it your mission to do something to make a difference. 

I am posting her here, because this past weekend, Gabriella lost her battle very suddenly to a brain tumor. She was diagnosed in November of 2012 and passed away October 26, 2013. She made the last year of her life a mission, a legacy even...to show Virginia and the world they HAVE to do something to improve the lives of children battling cancer, to "give them their childhood" to not only treat, but cure the cancers and in a way that doesn't rob them of the life they deserve. She raised funding for the Make-A-Wish foundation after she was granted the wish to go to Paris, France with her family - she knew that other children deserved the chance to have that one lasting memory with their families. She helped raise over $250,000 for Make-A-Wish in just one campaign. 

Gabriella - know that you are deeply missed, but never forgotten! You have impacted and changed so many lives that can only be counted by God. Your parents will continue your work, those that are touched by you have been inspired to do the same as well. We may never do it as great as you did, but we will always try our hardest.

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Throughout the day we gave away 50 goodie bags to those that stopped by our table - here is a collage of the items that were included. Knowing we were headed to this event, simply because it was local enough to us to do so, I invited other organizations and businesses to contribute to our bags and help spread the word about who they are and what they do.

Healing Helpers participated with their Heart Key Chains that they also embroidered a Yellow Ribbon on.

Socks4Surgery participated with their information and magnets.

Pink Door Fabrics sent some quilting bundles of fabric - Chelsea and Charlie have been amazing with donating and letting me purchase fabric at a lesser cost for gowns.

Bee Brave sent their mini stress relievers - which if you remember from our blog on them, they were made from scraps of fabric from our gowns.

We of course included our bracelets and information.

Hollie is a Thirty-One Consultant and contributed her information and nail files from Thirty-One Gifts, she also contributed our raffle item for the day too!

The Hensons contributed their information about Zeal for Life (will update this with their website, once I have it again, it is not with me right now).

Tricia contributed her Pediatric Cancer Awareness bows! One of which was given to Gabriella when we met her. She wanted it so bad and decided it looked great on her dress for the day!

THANK YOU to everyone who contributed to our bags! I know each item was well received!

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One of the best moments was meeting The Beltran family! We had been working on these freckles for his siblings and when I found out that they were going to be at CureFest, I just knew I had to get them done. 

Dominic was a local little guy that passed away from cancer - he loved superman so the fabric was made with superman and each one had a different color for the eyes, arms, legs and stomach and then we embroidered his name in gold.

This is the page they created for Dominic on Facebook and they are continuing their efforts for pediatric cancer research, awareness and advocacy!

https://www.facebook.com/Staystrong4dom

Here are the rest of our photos from CureFest for those who want to see some of them. I hope you enjoy them and check out all the amazing pages and organizations we've posted on the blog.
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The Chartres Cathedral 

8/2/2013

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When I was in high school, I had to opportunity to go to France with my French teacher, friends in my level and students from other French levels as well.

It was an amazing trip - everything I loved all in one place. Music, the history of France, the shopping everyone talked about, the monuments and artwork...it was spectacular.

The cathedrals and castles were probably the most intriguing sites we saw. Of course the Eiffel Tower and the Arc de Triomphe, the Louvre and Versailles were unique and ravishing, but the cathedrals really drew my attention above all else.

Something about the architecture, the amount of work that had to be done my so many people, over years and years of time...and even sometimes having to be redone because of fires, natural disasters and war. And the final project still standing for all future generations to see, it was breath-taking. Most of the cathedrals are still in use for religious services in France (sorry random side note there and memory from touring). Chartres Cathedral was the one that intrigued and amazed me the most. And here is why....

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The Rose Window - look at it, isn't it just beautiful! That is all stain glass. This alone took years to complete...the detail is so intrinsic and most of it is still the original glass that was used when the window was first constructed in 1215. The scene the window depicts is the Last Judgement, and was a gift that at the time cost 80,000 pounds! Now let me share a little story with you as to why I am even blogging about Chartres Catherdral, the Rose Window and why it's detail, the beauty and the work involved mean so much and can really put things into perspective for each parent who reads this.

Once again - this is from a posting on Facebook - though I do not know who originally wrote this, to give them the credit, but I pray one day they see the blog and realize how much of an impact it really has on those who read it.
Invisible Mother

 It all began to make sense, the blank stares, the lack of response, the way
 one of the kids will walk into the room while I'm on the phone and ask to be
 taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'
 
 Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
 the floor, or even standing on my head in the corner, because no one can see
 me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
 hands, nothing more! Can you fix this? Can you tie this? Can you open this??

 Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
 to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
 the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

 Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
 What's for dinner?'

 I was certain that these were the hands that once held books and the eyes
 that studied history, music and literature -but now, they had disappeared
 into the peanut butter, never to be seen again. She's going, she's
 going, she's gone!

 One night, a group of us were having dinner, celebrating the return of a
 friend from England . She had just gotten back from a fabulous trip, and she
 was going on and on about the hotel she stayed in. I was sitting there,
 looking around at the others all put together so well. It was hard not to
 compare and feel sorry for myself. I was feeling pretty pathetic, when she
 turned to me with a beautifully wrapped package, and said, 'I brought you
 this.' It was a book on the great cathedrals of Europe . I wasn't exactly
 sure why she'd given it to me until I read her inscription: 'With admiration
 for the greatness of what you are building when no one sees.'

 In the days ahead I would read - no, devour - the book. And I would discover
 what would become for me, four life-changing truths, after which I could
 pattern my work:

 1) No one can say who built the great cathedrals - we have no record
 of their names.

 2) These builders gave their whole lives for a work they would never
 see finished.

 3) They made great sacrifices and expected no credit.

 4) The passion of their building was fuelled by their faith that the
 eyes of God saw everything.

 A story of legend in the book told of a rich man who came to visit the
 cathedral while it was being built, and he saw a workman carving a tiny bird
 on the inside of a beam. He was puzzled and asked the man,
 'Why are you spending so much time carving that bird into a beam that
 will be covered by
 the roof. No one will ever see it'

 And the workman replied, 'Because God sees.'

 I closed the book, feeling the missing piece fall into place. It was almost
 as if I heard God whispering to me, 'I see you. I see the sacrifices you
 make every day, even when no one around you does.

 No act of kindness you've done, no sequin you've sewn on, no cupcake you've
 baked, no Cub Scout meeting, no last minute errand is too small for me to
 notice and smile over. You are building a great cathedral, but you can't see
 right now what it will become.

 I keep the right perspective when I see myself as a great builder. As one of
 the people who show up at a job that they will never see finished, to work
 on something that their name will never be on. The writer of the book went
 so far as to say that no cathedrals could ever be built in our lifetime
 because there are so few people willing to sacrifice to that degree.

 When I really think about it, I don't want my son to tell the friend he's
 bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
 morning and bakes homemade pies, and then she hand bastes a turkey for 3
 hours and presses all the linens for the table.' That would mean I'd built a
 monument to myself. I just want him to want to come home. And then, if there
 is anything more to say to his friend, he'd say, 'You're gonna love it
 there...'

 As mothers, we are building great cathedrals. We cannot be seen if we're
 doing it right. And one day, it is very possible that the world will marvel,
 not only at what we have built, but at the beauty that has been added to the
 world by the sacrifices of invisible mothers.
Picture
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Fingers and Toes

8/1/2013

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Picture
When I think about fingers and toes - I almost automatically think about being pregnant for the first time and I just couldn't wait to meet our precious little baby and take in all her features, but especially her fingers and toes. My second thought, is the book you see above.

But what I am going to share with you tonight, I have been wanting to share for a while now - I read it on Facebook on a friend's page back towards Mother's Day this year. Something even more special about this friend is that her baby was born with Hypoplastic Left Heart Syndrome...and her precious little boy became an angel watching over her.

This story is so touching and so important - being the mother of a special needs child, allows us to appreciate the little things more in life, but it also forces us to re-evaluate a lot of what we think, believe and say. We also know that we want more for our children than what this life has to offer them.

We know that when a new mom-to-be says they don't care as long as the baby has 10 fingers and 10 toes...they aren't telling the whole truth. This is for all the mothers out there of children with special needs - no matter what their condition may be, we are all connected.
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder
Picture
The picture above is a charcoal drawing that I made not too long after David was born - I would never have guessed that I would become a mother to a child with special needs, a child with Autism...a child that has become my hero and the best thing to ever happen to my life. 
Some people get to meet their heroes...but some of us have given birth to ours. 
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