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Busy Buddy by Bee Brave

8/18/2013

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This amazing tray with a removable pillow that also becomes an amazing storage keeper is called a Busy Buddy - the amazing mother, daughter team behind it is called Bee Brave!

Our son David, was a recipient of a Busy Buddy - he is autistic (you can read back through the blogs and find his full story) and we spend two hours in the car every trip to therapy, every appointment, every specialist and every testing...which this summer was three days a week...for him, it is boring and frankly he hates it!

I cannot tell you how much he LOVES this - he can use it at home on his lap to color (we don't have much table space, and he can take it away from the girls), he uses it in the car, he can hide his most treasured possessions inside the pouch for the pillow (it has a zipper)...and well it worked great for mommy when I was laid up in bed and I was able to write out the new requests for gowns even.


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David is pretty picky about what he likes - what child isn't right?! I had just made him a special little bean bag seat/ottoman thing...lol. And this was the fabric he picked out for it. The amazing part of his Busy Buddy, was I was able to send in this fabric and her mother made the pillow with it! David was so excited to see his "moo cows," "piggie" and tractor on the fabric.


Melissa went one step farther and matched the painting on the tray to the fabric as well! Once again - he was in HEAVEN! It was so great to see his face light up when it arrived in the mail and it was perfect timing as we had therapy the next day! But he wanted to take it outside to play with his trucks in the sandbox instead...lol.

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So we compromised - he is David with his Busy Buddy!

He was allowed to take it outside with him, but it had to stay with mommy, I wasn't about to have sand start coming out the zipper pocket...lol.



He doesn't always smile, but he wanted to say "mooooo" as his picture was being taken. The boy loves cows, what can I say? He wants to be a cowboy when he grows up.


When I sent in David's fabric for his Busy Buddy we also went a couple steps farther and created a wonderful bond and work relationship on the Gracie's Gowns end with Bee Brave.

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We sent all this amazing fabric over to Bee Brave to help make the pillows for other children, teens and adults that end up being on their sponsorship list!


Of course, it is mostly all scraps from gowns that have been made for children by Gracie's Gowns. Some of our gowns we have lots left over, and this is the case with these fabrics, but we also sent lots of smaller pieces to use as well for their mini stress relievers!


We filled up a diaper box of fabric and mailed it out to Melissa and her mom and something even more amazing is stemming from this too!

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We are participating in CureFest 2013 in Washington D.C. - it is an event sponsored by The Truth 365 to bring awareness and support for Pediatric Cancer.


The event is on September 1st, 2013 and all of the participating organizations, work with children who have cancer, fund pediatric cancer research, promote awareness, etc.


Bee Brave - is sending us 50 mini stress relievers for our goodie bags to distribute throughout the time of the event! We wanted to help promote other organizations that are small like us, but work with children who have cancer, and just chronically ill children as well and let them not only put informational materials in our bags, but include a little item too!


Melissa sent me this picture of some of the ones heading our way here soon! All I can think of when I see this is the precious kiddos that received gowns from the same fabrics and it makes me tear up, knowing they have inspired something so amazing in my own heart and really and truly are the heartbeat that keeps Gracie's Gowns running!

If your organization isn't attending CureFest and would like to include an item and informational materials in our goodie bags, we are putting together 50 bags. The items need to be at my house no later than the 29th of August so I can get them put in the bags.


Direct sales companies are allowed to include an item, but I am only taking one representative per company - and you must include a sample item with your information. Please contact me BEFORE sending anything, just to make sure I don't have another representative already - and that I need to keep my eye out for a package - same with any organization.
To learn more about Bee Brave you can visit their 
Facebook Page at (stop by and send them some love, Gracie's Gowns style of course):
https://www.facebook.com/beebrave2013



And their website is:
http://www.beebrave.org

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Something a Little Different

8/18/2013

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So while we were offline for a few weeks - it did allow time for some creativity to happen because my mind goes at about 1,000 thoughts a minute, especially for Gracie's Gowns.


I was able to find and start using a dual-colored awareness ribbon!! This is fabulous, especially for all our families wanting Freckles, but I wasn't able to do a particular color, much less a dual-color ribbon. Now we can use all the colors in the coloring box of embroidery threads (no limits there) and do solid colors that I may not have fabric for, but also due ribbons for the conditions that have two colors. Here is what it looks like on Abby's Freckles using the red and blue for a C.H.D. Awareness Ribbon.
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Also, my dad wanted to help support Gracie's Gowns, but didn't want to just be a pocket-book for us. He has been wanting to contribute for a while, and definitely helps any time he can and where he can...and finally had come up with something he needed my sewing skills for, but also would help Gracie's Gowns in advertising/marketing and he paid for it too...lol.


He wanted gowns for his C.P.R. baby manikins - so that his students could practice the steps of C.P.R. start to finish and also get a feel for really removing the clothing in the process. With a little adjusting - our newborn gowns fit perfect on his manikins and was the start of Gracie's Gowns and Healing Helpers also teaming up together (another blog for later - P.S. we love, love, love working with Healing Helpers!!).
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Now he wants some for his adult manikins....that is going to take some work though - they don't have arms to hold anything on...lol. Anyway just wanted to share a little tidbit from things that were happening in our world here, that also involved Gracie's Gowns, just behind the scenes. Each of these gowns has a "Made by Gracie's Gowns" iron-on tag on them...I purchased those from Cherry Hill Designs (love them too!!).


Hope you're having a great weekend - it is raining and pouring here, which is making me super sleepy. Not to mention the busy week we've had. I have one more blog coming up today that will feature a great organization we've worked with personally and professionally. You won't want to miss it!


Much Love,
The Kidd Family
Gracie's Gowns
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Heroes with Grace: William

6/29/2013

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William, or Liam as he is more popularly called is a handsome two year old boy that has been diagnosed with Mucopolysaccharidosis or abbreviated as MPS.

It is a rare disease and one that makes every day a battle, every day unknown and every day full of adventures.

Liam also suffers from conditions related to the MPS. These include: food allergies, an arachnoid cyst in his Right Cerebellopontine Angle Cistern with enlarged space around it, Ataxia, Arthritis, Bilateral Dislocated Hips (with Defective ossification, dysplastic acetabella, & damage to his iliac wings bilaterally), Chronic Regression, finger clinidactyly bilaterally,  Developmental Delay, irregular Gait, Hypersensitivity, Hypotonia, Hearing Loss, Osteoponia, Plagiocephaly, Seizures and he is also nonverbal.

So much for such little ones to go through. Fortunately he has a great family and friend support to help get through each event and make every moment count. It has not been an easy road and there has been lots of obstacles to climb in his two years here on Earth. Liam has been poked and prodded his whole life trying to find answers and find out what's wrong; but he is blessed to only have had 1 surgery so far. He had emergency surgery to repair his inlingual and umbilical cord hernias at 4 months old. He was transported from one children's hospital to another that would be able to handle doing this emergency surgery while he was in ICU battling RSV. His surgery was only supposed to take 30-45 minutes but ended up taking almost 3 hours, as they had to fight to safe his left testicle due to all the fluid buildup cutting off the blood flow to it. Luckily it was saved and he was released after being in the hospital for a month.

In the future Liam will have to have hip surgery on both hips in a few weeks time and a total hip replacement if those surgeries don't fix his problems. There will be many more surgeries in the future, but Liam and his family are just taking them one at a time.

Liam's mom described their most frightening and most exciting moment in their journey with MPS so far like this:

The most frightening moment was June 7th, 2013. Liam didn't sleep really at all the night before and he went to bed fine around 9pm but then at 130 he woke up screaming and rubbing his legs. He stopped when I cradled him, but the moment I put him down he would scream. this went on until 830 when he finally let me put him down. Liam then went on to sleep until 3pm ate lunch and went back to bed. He didn't walk/crawl or even attempt to do anything but sit in the chair I put him in and have me hold him. The doctor says that some days are just bad ones. He didn't even want to see him!

Most exciting moment was the first time he said momma. I was blessed to hear him say it countless times for 3 whole months; before he became non-verbal for no known medical reason.
There was more that Liam's mom went on to say about MPS - which I didn't know, but also a beautiful view of how all our special children, are still children...no matter what they are going through or up against, they still all just want to be the child they were meant to be.
Did you know that MPS is detected by a simple blood or urine test. But it is currently not a test regularly done in pediatric doctor offices. Please at your next doctors appointment ask them to test. Especially if your child has autistic tendencies, developmental delay or is regressing.

There is no cure but through awareness there is hope! 


Liam may have a lot going on but at the end of the day he is just a toddler, who wants to play with his cars, balls & watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play. 
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To learn more about and help support Liam and his family you can visit their Facebook Page.
www.facebook.com/fightingforanswers

To help provide financial support to the family you can donate through their gofundme page below. The family is currently trying to move from Texas to Florida because their insurance doesn't cover out of state appointments, but also because the doctors that specialize in MPS are located in Florida.
http://www.gofundme.com/fightingforanswers

To Learn More About Mucopolysaccharidosis view this link:
http://www.mpssociety.org/

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Gracie's Gowns Meets: Piper

1/2/2013

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Also tonight I am going to introduce you to Miss. Piper.


Piper is now 13 months old, but was born with Hypoplastic Left Heart Syndrome. As when we talked about some of the other little ones born with this ~ the left side of her heart is not functional (well when she was born it wasn't) and the ultimate fix for this is a heart transplant.


Piper received her second chance at life when she was 4 months old ~ she received her perfect heart.

During her short life so far, Piper has had multiple heart caths done, 2 open heart surgeries, her transplant and a feeding tube placed. She is on anti-rejection medication (so her body doesn't reject the heart), which is a life-long medication.

She has developmental delays and due to the prolonged intubation, she has feeding problems (hence the feeding tube) and a chronic lung disease. She will have heart caths in the future (an annual check) and have her g-tube closed (feeding tube) and a strabismus surgery (eye muscles) here very soon.

I wanted to quote this from her mother, because it is something I remember hearing from a dear friend of mine who's little girl has a congenital heart defect as well...just hits home.

Almost everyday prior to transplant was terrifying because she was doing so poorly, we didn't think she would make it to transplant. And every time we handed her over to the thoracic surgeon was terrifying, not knowing if we would get our baby back. The most exciting was first seeing her PINK after her transplant. Even with all the tubes, lines and wires, you could see her bright pink lips from the doorway to her room. Also, Christmas 2012 was her first Christmas home and it was wonderful to finally have a holiday with our whole family.
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Piper also receives her care and treatments at Ann and Robert H. Lurie Children's Hospital in Chicago, Illinois.



You can follow and support Piper through Facebook at:
https://www.facebook.com/pages/Prayers-For-Piper

And for more information on Hypoplastic Left Heart Syndrome Visit:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/


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Gracie's Gowns Meets: Makenzie Marie

1/2/2013

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As always it is my joy to introduce these little ones to all our followers ~ tonight I get to tell you all about Miss. Makenzie Marie!! Makenzie Marie is a 1 year old little girl that has Retinoblastoma, which is a form of eye cancer.


She was diagnosed in April of 2012 at the age of 4 months old and has since done 5 rounds of chemotherapy that made the tumor go away, but had a scan a month later that showed not only that the tumor was back, but that it was larger than when originally found.


So this sweet princess has laser treatments done every 3 weeks to her left eye and with all the faith, hope and prayers they are doing their job in eliminating the tumor. As with every child the scariest moment for the parents is the day of diagnosis. Especially when they are so "new" to the world and then the doctor's start throwing out words like tumor, cancer, chemo and more.


The most exciting moments for Makenzie Marie and her family right now are when she has good reports from her scans ~ and of course that is when everyone else gets excited too! 
She has her treatments and care at Ann and Robert H. Lurie Children's Hospital in Chicago, Illinois.


You can follow and support Makenzie Marie through Facebook at the following page:
www.facebook.com/mmretinoblastoma


And to learn more about Retinoblastoma use the following Links:
(I like using resources specific for children ~ in case you haven't figured that out yet)
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=7cfb061585f70110VgnVCM1000001e0215acRCRD

http://retinoblastoma.com/retinoblastoma/frameset1.htm
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Gracie's Gowns Meets: Roman

1/1/2013

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It is also my honor to be able to introduce everyone to little Roman!


This little guy is now 14 months old and was given an extra special gift this past year ~ a new heart! 


He was diagnosed with hypoplastic left heart syndrome, which is where the left side of the heart is essentially not functional. The ultimate fix for these little ones is a heart transplant, but even then there are other complications that can occur.

Like Roman, most babies born the HLHS have their first surgery within the first few days or weeks of life. This is crucial to save their life, there is a total of 3 surgeries that occur, but a transplant is always on the list.


Roman has developed cataracts as a result of the anti-rejection medication that he has been put on and will have to have surgery this year to remove those, as well as, a heart cath done this coming May to check for rejection of the donor heart. 


I wanted to share this from Roman's mother when she wrote about his journey:

The most frightening experience was when Roman started to crash on day 3 of his life. The doctor came in and told us that he had to talk about our boy, and that he was very sick. I had five minutes to see him before they rushed him to Nationwide Children's Hospital. He was blue from head to toe. We had several scary moments, including several coding episodes. However, the happiest day was when we got the phone call that they had found Roman a perfect heart. We will always be grateful for Romans donor family that gave Roman a second chance at life. Bringing Roman home after being inpatient for 7 months was so overwhelming! By far the best day of our lives!!

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To follow and support Roman please visit the following Facebook page:
https://www.facebook.com/pages/Prayers-for-Roman


Here is a great resource from Boston Children's Hospital on HLHS: http://www.childrenshospital.org/az/Site502.html

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Gracie's Gowns Meets: Callista

1/1/2013

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Going to start out the new year, yes it really is 2013 already, by introducing you all to a few more of the kiddos that we have made gowns for. This morning I am going to tell you a little about Miss. Callista!


Callista an 11 month old little girl with Spina Bifida and Chiari Malformation. I remember when I first even knew about Spina Bifida it was from a picture on the refrigerator of the parents of a friend of the guy I was dating at the time (follow that...anyway) it was from the newspaper article of the very FIRST fetal surgery being done on a baby with Spina Bifida and the baby reached out and grabbed the doctor's finger. Anyone else remember that? Well now that is almost STANDARD practice for these precious little ones!


Here is what little Callista has undergone since the fetal surgery from her mommy:
Callista and I underwent fetal surgery to repair her spina bifida when she was 22 weeks gestation at Vanderbilt Children's Hospital.

At 2 days old, she a shunt placed for hydrocephalus.

At two months old she had a decompression surgery.

At four months old she had a g-tube placed.

At eight months old she had a double hernia repair and a vesicostomy.

She currently has physical and occupational therapy 1-2 times a week.

These precious sweet pea still has a long way to go with more surgeries potentially in her future, the need for leg braces so she can being to bear weight and learn to walk (my son had to wear leg braces because he was bow-legged...this was not a fun experience for him or us, but one that luckily we didn't have to continue for a considerably amount of time) and she may also need a wheelchair in the future. 


I've had the joy in celebrating some successes with Callista through her Facebook group and watching her grow and develop. Even though she is delayed compared to most children, she is meeting milestones in her own time and fashion and it is such a joy to see her and her family get so excited about what she is able to accomplish now!


Here is another bit from Callista's mommy about her journey so far:
The most frightening thing was the initial fetal surgery as we had to deal with the fact that we could lose her by trying to help her. She could have been born extremely early because of the surgery as well.

We also had a pretty frightening beginning. 12 days after we were allowed to bring her home, she started acting very funny. We took her to the ER and thank goodness we did. As soon as we got there, she stopped breathing and turned blue. They rescued her quickly but we ended up with another 2 month stay in the hospital where they did her decompression.

The most exciting part of our lives is just simply seeing her grow. Although she is far behind on her developmental milestones, every time she reaches one is a celebration. She is beginning to support her own head and has said her first word (Da-Da!).

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And here is the precious little princess!!



To follow and support Callista visit the following pages:
https://www.facebook.com/groups/callistasjourney

http://www.callistasjourney.blogspot.com

To learn more about Spina Bifida you can visit the following website (there are TONS of resources and information out there, but this is one that I liked):
http://www.spinabifida.net/

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Gracie's Gowns Meets: Jayden

12/29/2012

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Tonight I get to introduce you to Jayden ~ a super precious miracle!! And once you read more into his story you will see why. Jayden is a 19 month old little boy who actually doesn't live incredibly far from me...a days trip and receives his more complex care at the University of Virginia which is a little under an hour from my house!


Jayden was diagnosed with Tetralogy of Fallot with Pulmonary Atresia. This is a very complex congenital heart defect that require extensive surgery and typically is accompanied with other complications as well. Jayden only has one functioning kidney, is blind in one eye, has scoliosis, and hypothyroidism. He is also vent dependent due to the chronic lung disease.


Now ~ when you read the part about being vent dependent...don't automatically think he doesn't have any fun! Because you can take one look on his Facebook page and see otherwise, but I will quote this from mom as well.

The most frightening moment so far has been when we first returned to the hospital in Roanoke and we believe the ride stressed him out and he fought for his life for about 24 hours. Once he adjusted, he was ok. The most exciting moments have been watching Jayden do things that doctors said he would not do, like breathe on his own without the vent, learning to be mobile and scoot around and also learning to talk over his trach. I was told that because he was trached and on a vent, we would not able to hear him talk or cry. HE does all that and more!
On his Facebook page there is a super cute video of him RIDING around the room on his 4-wheeler!! Now having worked in the medical field and doing patient transports, especially the little ones on ventilators. I never would have thought I would see that! Most of the children we transported were just there...for lack of a better description. Mr. Jayden though is showing all of us how to really make life worth it!!


Jayden has heart surgery coming up in less than a week now on January 3rd!! He will have a couple other surgeries down the road to repair a hernia and when he is older to correct his scoliosis, but this surgery next week is A BIG ONE!! Keep this little guy in your prayers, and his family as well!
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To Follow and Support Jayden you can visit the following Facebook Page:
www.facebook.com/prayformyjay

I found these really great sites (both children's hospitals) about TOF and Pulmonary Atresia:
http://www.chop.edu/service/cardiac-center/heart-conditions/pulmonary-atresia.html http://www.childrenshospital.org/az/Site515/mainpageS515P0.html
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Gracie's Gowns Meets Kaleb

11/23/2012

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I decided to do the blog a different way when it comes to all the precious little ones we are making gowns for. I wanted a way to share more information about the conditions, treatments, etc that these children are going through. My thoughts behind this are that it will help families make a connection to others with similar conditions, find support and even hope.


So, with that being said ~ let's meet Kaleb!

Kaleb is 5 years old and has been diagnosed with an Anaplastic Astrocytoma which is a form of brain cancer. This particular tumor is inoperable and has caused weakness in his left hand. 

During his is battle Kaleb has undergone the following treatments and therapies (I quoted the text from his mother on the questionnaire). Kaleb's therapies and treatments are done at Riley Hospital for Children in Indianapolis, Indiana.
Multiple MRI's & CT Scans. He had a Port put in. 33 days of Radiation along w/ 42 days of Chemotherapy. Now battling his 10 rounds of chemo (he has had 4 of 10 rounds already.) He has his CBC checked every week (which means his port accessed every week.) He also lost his hair during Radiation treatment. Also switching medications around to stop his seizures he was having (which stopped once he started Radiation). He also does Occupational Therapy for his left hand (which he lost the strength in during his long seizure he had at the very beginning).
In the future for Kaleb is more chemotherapy (potentially through an IV), MRI's, occupational therapy and maybe even a feeding tube.

Through all of this so far ~ Kaleb has managed to still be the fun loving, active, happy child that he was before the cancer. The most frightening moment for Kaleb's mother was not knowing what was wrong with Kaleb, but her most exciting moment was to hear his tumor wasn't growing anymore! 

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I just LOVE this picture of Kaleb! He dressed in his gown for Halloween as a cancer doctor! See the chemo duck too?! 


You can follow Kaleb's Journey through the following Facebook Page:
www.facebook.com/KalebBorders30

To Learn More About Anaplastic Astrocytoma Click on the Link Below:
National Brain Tumor Society


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Eye of the Storm

10/10/2012

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What a week and it is only Wednesday night!! And I can't say this is a week that I would ever want to relive. And I know that sounds silly to many of you, because you go through much more complex surgeries and treatments and the life of your child is literally in limbo depending on how the procedure/treatment does or doesn't work...but for me, this was probably one of the most terrifying experiences of my life to date.

We learned today though, that a lot of the issues we had in the PACU and post-op recovery, were related to David's autism and the fact that "in general" child with autism tend to breathe off the anesthesia quicker than children who do not have it, but also once they are "awake" it is sensory overload to the extreme because everything comes back to them all at the same time. But even more so, we learned for fact after having the physician review the anesthesiologist report, that David was not breathing on his own for a "period of time" when he should have been and that his heart stopped as well...so much for a routine surgery right?

I knew something wasn't right, I knew something happened to my baby...and now it was confirmed. And while they do not think at this time it will or have caused any damage, I realize just how fragile even the life of my own children can be. The picture at the top, is David holding onto my hand the best he could on his chest while watching a movie. It is a moment I will never forget...it was the most calming moment of the time in the hospital. 

This first part of October is always a test for me emotionally and mentally. It is something that nearly ruins my family every year...and this year was no different. I was ready to leave everything behind and go in whatever direction the wind took me. My mother died 22 years ago this past Monday, which was also the day of David's surgery...and I almost lost my son. First and foremost, I am a mother, my children ARE my job and as miserable as I can be sometimes, their needs will always come first. Without them, I would be even more lost than I already am.

While in the hospital with David and everything that he was going through and in turn I was going through, I didn't have time to do ANYTHING I thought I would be able to there. The theory was he would sleep a good bit, and he didn't. My poor kiddo didn't fall asleep until 9:30p Monday night, after being up since 4:30a (minus while he was in surgery)...and by then, I was exhausted! Even in how tired I was, I was able to stay level-headed for his sake, take care of his needs and comfort him in every way possible. He kept me calm in return.

And while there is a storm going on inside my life...the moments my children want to cuddle, love, hug and just be around mommy, are the calm, the center of who I am...and sometimes, the only reason I am still here. I don't remember having that type of bond with my own mother...to be honest, there isn't much that I do remember about her anymore. So, even more of a reason I will NOT deny my children the mother that they deserve to have in their life.

Below is one of my favorite pictures of my mother and I. Looking at myself in the picture compared to others...this would have been very close to the time she committed suicide. Either the summer before or the fall during (and assuming by the pants and all, the fall because it is cooler at the beach this time of year). 
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I will close with this quote ~ it is one that I have loved since the first moment I read it, one that brings me to tears and yet fills me with honor at the same time. A quote I plan to pass down to my daughters and granddaughters and if I am lucky enough, my great-granddaughters. 


"A daughter needs a mom, because without her she will have less in her life than she deserves."




God Bless,
The Kidds
Gracie's Gowns
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