Friday, March 17, 2017

Graham's Story

The following is an excerpt from our Brave Stories, where anyone can post a story about the hard times they are facing, the hope they find, and how they are brave each and every day. Read more or share your own here: https://www.bravelets.com/brave-stories

Christina Brown's Story

GRAHAM'S STORY


I sit here, fingers on the keys, thinking about how to start this post. How do I tell Graham's story? How do I explain the last eleven months of my life in a single post? How do I articulately and thoroughly explain the emotional storm we have experienced? 

I am the mom to a child with special needs. My son has special needs, a disability, a rare chromosomal abnormality. Technically, Graham has Cri-du-Chat Syndrome or 5P-. There was a deletion on the short arm of his fifth chromosome. He has special needs.

How did we get here? We got here by fighting, by pursuing, and by being his parents. On March 17, 2016 our lives changed forever as our first child entered the world at 5:55 AM. I whispered to my husband, as I held him for the first time, “he’s perfect”. As the days and months went on, I noticed things weren’t going as they should. Graham wasn’t meeting milestones. He was behind. We went to doctors and specialists and no answers. We held onto hope that he was “just a little behind” and that he would catch up. You read stories all the time about kids catching up, but the trend continued. We enrolled him in physical therapy and feeding therapy and saw major improvements, but still not where he should be. On top of it all, I was secretly battling postpartum depression and anxiety. Not a good combination. We didn’t let the world know that we were struggling and how badly we were hurting. We kept on searching for answers.

Finally, on September 23 Graham had an MRI on his brain. The pediatrician called and said that everything looked fine, no abnormalities, and the hope surged. Then, about 20 minutes later he called back after speaking with the neurologist, and said that Graham’s brain was smaller than average. It was structurally normal, but small. I fell apart. My hope was gone. We were back to the unknown, the unexplained. She assured us that this didn’t mean he had a disability and that his brain could continue to grow and, again, catch up. She referred us for genetic and metabolic testing to rule out other things, so I took my baby and watched and held him as several tubes of blood were taken and he screamed. I cried and he screamed. I watched as he sat with a bag on him to collect a urine sample. I’m supposed to be enjoying my baby and seeing him grow. Instead, there I sat in the doctor’s office again. So, off went the blood and the urine and up went the prayers. Begging God to bring normal results.

On October 7, 2016 I experienced the worst day of my life. God did not bring normal results. Graham now had a diagnosis- Cri du Chat Syndrome. Only 50-60 babies are born with this each year in the US and it happened to us. It happened to Graham. The thing I feared most in the world became my reality and all of the sudden those words rang in my ear “he’s perfect”. Someone was telling me that he isn’t perfect; he’s missing a piece of him. A piece of his little body was “terminally deleted”. Those words pierce and sting and burn. My world collapsed and I fell to the floor, shattered. I’ve never felt despair like I did that night. I’ve never felt emotion like that and didn’t even know you could feel that devastated. I ran and wanted to leave forever. The only word strong enough is shattered and that doesn’t even do the trick. I can’t even share the details of that night because they are too painful. I told myself that I couldn’t do it. I can’t be a mom to a baby with a disability.

“I don’t deserve this”, I thought as we visited the neurologist, the geneticist, the ENT, the cardiologist, the physical therapist, the speech therapist, and the list continues. Then the day came and a switch flipped. I vividly remember walking out of the neurologist’s office with my husband and we had a long conversation. Then and there we decided that there is a calling in this. There is purpose; we just have to find it. We have to choose joy. We have to be brave for him. That was the moment I chose to be Graham’s mom, regardless of diagnosis. I embraced the path I was given.

I sit here five months later and we are doing it. We didn’t deserve this diagnosis, but Graham deserves us. He deserves the best life we can give him. He is already beating the odds. He is the sweetest and happiest little boy. He is our fighter. He inspires us every day to be better, to advocate, to defend, to ask for help when we need it, and to love unconditionally. He is going to change the world and his inspiration has already become apparent through him and through us. This is just the beginning.


SUPPORT A CRI-DU-CHAT SYNDROME SUPPORT group HERE


Wednesday, March 8, 2017

March is Colon Cancer Awareness Month

Here at Bravelets, we love supporting all causes that are important to you! Many of the causes have special months or days to bring awareness and raise funds for research. This month we are partnering with The Colon Cancer Alliance to raise awareness for colon cancer! 

Colorectal cancer is the second most commonly diagnosed cancer in men and women. Most people do not realize that colorectal cancer is highly preventable with regular screening and has a high treatment success rate if caught early.


The Colon Cancer Alliance helps to serve all those touched by colorectal cancer as the largest patient advocacy organization dedicated to this disease. Our mission is to knock colon cancer out of the top three cancer killers. We are doing this by championing prevention, funding cutting-edge research and providing the highest quality free of charge patient support services.

We spoke with Alison, the Development Manager at Colon Cancer Alliance who said, " I am extremely impressed with the Colon Cancer Alliance’s dedication to mission and whom we serve. This organization has allowed me to be part a cause bigger than myself and in some small way, give back to those who need it most."

DID YOU KNOW?


One in twenty people in their lives with be diagnosed with colorectal cancer
In 2000, President Clinton set March as National Colorectal Cancer Awareness Month
• The American Cancer Society estimates that out of the roughly 140,000 people who will be diagnosed this year, approximately 50,000 will die. This is why getting screened regularly is so important because it has a high treatment success rate if caught early.

WHAT CAN YOU DO?


First, participate in Colon Cancer Awareness Month! During the entire month, The Colon Cancer Alliance celebrates patients and survivors as well as work to raise awareness and funds to help support our mission. Throughout March, there are plenty of ways everyone can get involved in spreading the word. Visit www.ccalliance.org/events to see what’s happening near you!

Secondly, donated to their cause! Bravelets is proud to partner with them this month and offer a 25% off coupon for any product purchased in support of The Colon Cancer Alliance! Use coupon code: CCALLIANCE25


Most Importantly - remember that when it comes to colon cancer, tomorrow CAN'T wait. Get screened if you are over 50 years old!

Wednesday, March 1, 2017

FREE Download: March Calendar

We thought we'd make this month's free download cute AND functional! Reference your March calendar right on your wallpaper whenever you need a little help planning ahead! 
Choose to download for your phone or your desktop background. This month's motivation? 

Go the extra mile, it's never crowded!

How to download, click which one you want (phone or desktop), follow the link, save the image to your computer or phone, then use your devices settings to set as your wallpaper!



Monday, February 27, 2017

February is Heart Awareness Month

Every February we celebrate Heart Awareness Month to help bring awareness to heart disease. Here is some information about heart disease and this awareness month! Don't forget during the month of February, you can get 25% off any item from the Heart Disease Awareness Brave Page with code: HEART25


Heart disease is the leading cause of death in the United States. The month of February is dedicated to raising awareness about heart disease and increasing knowledge about prevention. Educate yourself on the dangers of heart disease and get on track to better heart health here! Source

Thursday, February 9, 2017

Brave Story: 4 PAWS FOR ROBBIE

The following is taken from our Brave Stories community, where anyone can share thoughts, feelings, or stories about anything they are passionate about. If you would like to contribute to our Brave Stories or read more, please visit here: https://www.bravelets.com/brave-stories


I would love for you to meet Robbie. My son, Robbie, is a 13 year old boy from Lolo, Montana.
In 2003 about 6 months of age, Robbie was diagnosed with hypotonic Cerebral Palsy, Gorlin syndrome (a form of skin cancer) and a complete deletion of chromosome 9. His chromosomal disorder has no name as he is only the 2nd recorded case with this specific disorder. The consequences of his medical conditions include developmental delays, speech impairment, low muscle tone and difficulties with both fine and gross motor skills. At 7 years old, Robbie experienced his first tonic clonic (grand mal) seizure and was diagnosed with Epilepsy. With therapies and diligent care, Robbie is fighting the odds and progressing; however, he will never be able to live alone and requires continual care. As Robbie's mother I am determined to seek out every possible opportunity for him to lead a happy and fulfilling life.

LIVING WITH A SPECIAL NEEDS CHILD

When he was a baby, we started multiple therapies not knowing if the efforts would have much effect on his outcome of life since the genetic specialists had no idea what the prognosis for Robbie's life would be. Robbie started an intensive therapy program right away. Robbie was happy and willingly worked hard amidst all the expectations that we, as his family and medical team, had for him. Eventually he progressed to wearing leg braces and using a walker to not requiring any medical assistance walking, but he remained nonverbal for several years. We used sign language as the primary form of communication and occasionally still do after seizures. Even after 12 years of therapy his speech is still quite difficult to understand and makes communication challenging.
 

Of the multiple medical challenges, Epilepsy has been the hardest on our family. The side effects of the numerous medications we have tried have altered his personality and have interrupted his developmental progress. The seizures are unpredictable and have no known triggers which continue to put his life in danger on a daily basis. He has had seizures in retail stores, school, the car, in our home and, over the summer while he was playing in the river.
In many ways Robbie is like a 'typical' teenage boy. He loves video games, riding bikes, swimming and has a mischievous sense of humor. His thoughts are filled with Star Wars and Toy Story and he carries no concern for his future....but I do.
 

I became aware of a program through 4 Paws for Ability, which provides service dogs to children with special needs. Similar to a Seeing Eye Guide Dog, a service dog can be trained to help assist with the daily difficulties that epilepsy and developmental disabilities generates for individuals. Our goal is to have a service dog that will be trained specifically for seizure detection and notification, behavior disruption, sign language, and tracking in the event Robbie would get lost or wander away. It is anticipated that the service dog could help Robbie with social interactions when he is out in public. The presence of a service dog can also be calming to Robbie when he displays his impulsive behaviors to express emotions. To acquire a dog tailored to Robbie's specific needs would help him become more independent and provide us with an additional level of safety. We feel a service dog is a necessity for Robbie's future so we applied for a Multipurpose Service Dog and are excited to hear that he has been accepted to the 4 Paws program.

As you can imagine, the cost associated with training a service dog is staggering. To help defray this cost, our family is committed to raising $17,000 in support of the 4 Paws mission. From birth through training, the cost of placing a Multipurpose Service Dog in a family like ours is at least $36,000. This does not include the personal expenses of traveling to Ohio for two weeks to receive the appropriate training before bringing the service dog home. A multipurpose service dog would benefit Robbie and the outcome of his life in immense ways. Robbie will always require some type of assistance and supervision
.
HOW CAN YOU HELP?

If you or your business is interested in supporting 4 Paws for Ability in honor of Robbie, please make a personal or business donation to:

4 Paws for Ability, Inc
In Honor of Robbie Clason
4 Paws for Ability
253 Dayton Avenue
Xenia, Ohio 45385

Checks should be made payable to 4 Paws for Ability, Inc. and mailed directly to 4 Paws. It is requested that you write "In Honor of Robbie Clason" in the memo line to give credit for a donation to Robbie

THANK YOU FROM THE BOTTOM OF MY HEART!
Robin Clason, Robbie's mom

You can also donate through the Bravelets Brave Page with a Bravelets product! Visit here: https://www.bravelets.com/bravepage/4-paws-for-robbie


Monday, January 23, 2017

Free Download for the new year!

As you know, we love our fill of inspirational quotes and mantras. We think that they are great constant reminders to be the best possible version of ourselves. This specific quote resonates so well with our mission of being brave through hard times & being brave each and every day! 

Set this as your phone or desktop background and have that reminder each time you open up and plug in! Just click the link below, save the image to your phone or computer, and set as your wallpaper! 






Monday, December 12, 2016

Free Download for Winter!

We love when the weather gets a little bit colder and people get a bit friendlier! Christmas time is the time to be merry, hang up some tinsel and surround yourself with the people you love. 

We wanted to give you a present for being so brave this year. Enjoy these free downloads for your desktop and mobile!





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