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Mom on a Mission

Mom on a Mission

I am a life-and-style blogger right outside of Philadelphia, Pennsylvania. My family is my greatest gift, biggest motivation, and number one reason to LIVE LARGER!

Categories

  • Beckwith-Wiedemann Syndrome (16)
  • Health & Wellness (9)
  • Lifestyle (14)
    • family (9)
  • Marriage (2)
  • motherhood (11)
    • Parenting (3)
  • RARE. (1)
  • Solutions (2)
  • Spinal Surgery (3)
  • Style (3)
  • Travel (1)
  • What No One Talks About (9)

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  • July 2020 (1)
  • June 2020 (3)
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  • December 2019 (2)
  • November 2019 (5)
  • October 2019 (7)
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  • May 2019 (1)
  • April 2019 (4)
  • March 2019 (6)

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largerthanbws

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ā˜€ļø ON THE BLOG TODAYā˜€ļø . Would you believe ā˜€ļø ON THE BLOG TODAYā˜€ļø . Would you believe me if I told you that some people think children like Owen hold no value or place in the world? That they should have been aborted? . Would you believe me if I told you people think children like Owen are ugly or weird? . Would you believe me if I told you some mothers of BWS babies were told their child would have no quality of life? . As much as I wish I was lying. Iā€™m not. These are just a few things mothers of BWS children have heard and experienced . Ignorance. It can be a powerful motivator if we get past the nasty nature of it. When it comes to Owen we face ignorance everyday. Some of it is innocent. And some of it is pure hatred. People canā€™t see beyond his physical differences which I find some of his best qualities in . Itā€™s hard being the mother of a child that people can so easily throw hatred at or make fun of. Your faced with a daily decision to either attack with anger or to walk away . On the blog today I discuss how I was reminded of my motivation through someoneā€™s ignorance and just exactly how I handled it . Donā€™t let other peopleā€™s hatred and ignorance take away from what you know is beautiful and meant to be here . To read more click the link in my bio for Living Larger to Read Motivation & Ignorance - A fuel to be reckoned with or go to -> https://largerthanbws.com/2020/07/09/fueled-by-motivation-and-ignorance/ . #beckwithwiedemannsyndrome #macroglossia #hemihypertrophy #hemihypertrophymom #hemihypertrophyawareness #bwsawareness #hemihyperplasia #ignorance #ignoranceisachoice #hatredistaught #inclusionmatters #beingdifferentisbeautiful #raredisease #rarediseaseawareness #limbdifferenceawareness #differentisbeautiful #fuelmyhustle #motivatedbyhate #hisvoicematters #createchange #cultivatekindness #findyourpower #findyourrare #disabilityblogger #valuelife
This is for all the people who have ever criticize This is for all the people who have ever criticized a mom for taking time to celebrate themselves with a selfie . Confused? Let me explain. We all know the people (women mostly) that criticize the mom who decided to share a picture of herself. Iā€™ve heard it often. Oh she is obsessed with herself. Sheā€™s self absorbed . Let me set the record straight on this one. This morning my life as a mother was miserable. Every second something was happening. My kids peed everywhere, chocolate milk was spilled, my boys almost broke my iPad keyboard, the house was a mess, the list goes on. When my husband woke up and saw me getting Owen dressed he said, ā€œwait didnā€™t one of the boys wear that shirt yesterday?ā€ I said yeah they did but I washed it. (It was only 8:30 am at this point) he said ā€œwait you washed that already?ā€ Yes. I replied. I did three loads of wash this morning. He was floored. ā€œHow did you get three loads of wash done already?ā€ . I actually didnā€™t even take a second to stop and realize everything I got done in 2 hours of having my eyes open. And 3 loads of wash that early in the morning is pretty damn impressive I just never stopped to realize it . So yeah when a mom decides to snap a picture of herself and acknowledge the fact that she had time to put into herself donā€™t criticize her. Just like those same moms share pictures of their children and their accomplishments, it should be the same when they decide to share accomplishments of their own, like in my case actually being able to do my hair for once . Going from working and having a career to staying at home with the kids isnā€™t a walk in the park. Itā€™s hard and sometimes frankly sucks. So when we decide to take a second to celebrate ourselves and the way we look in the mirror stop criticizing. Itā€™ll probably be a very long time before we celebrate ourselves again because as a mom you are always putting yourself last and everyone else first. Itā€™s okay to acknowledge your accomplishments and to love yourself, donā€™t ever feel guilty for it šŸ’ššŸ’›(photo taken in my car at Home Depot, because I literally would go anywhere this morning to get out of my house and have a break lol)
There are a lot of issues that come with Beckwith- There are a lot of issues that come with Beckwith-Wiedemann syndrome that I donā€™t think people realize. And itā€™s not because they donā€™t want to see the issues, rather its because BWS kids make those issues seem like they donā€™t exist . Itā€™s very rare that Owen complains about anything. So when he does complain thatā€™s when I know itā€™s bad. Thatā€™s also why a lot of things with him go unnoticed during our busy life because he takes everything in stride . I knew when he was diagnosed that we would struggle with proper car seats because of his size and age difference. I knew we would struggle with shoes because of his hemihypertrophy. I also knew he would struggle with speech and annunciation because of his enlarged tongue . What I didnā€™t know, and frankly never knew could happen would be the constant sun burn blisters he gets on the tip of his tongue . Our buddy never complains, yet every summer his tongue gets completely fried because 99% of the time is rests outside his mouth . Really the only option I have found is to put a hat on him but that still doesnā€™t stop his tongue from getting burnt completely . Times like these are times that I get so frustrated because I just want to give him a solution. But itā€™s also times like these that I am reminded of his resilience. He has never once complained about the blisters from sunburn that he gets on his tongue. He just sits there and smiles and continues to play outside . As hard as it is to not have a solution for this issue yet he makes it a little easier with the way he handles it . Does anyone have any ideas other than wear a hat and keeping him in shade that could help?! . #beckwithwiedemannsyndrome #macroglossia #enlargedtongue #sunburnt #blisters #takeitinstride #alwaysafighter #advocatelikeamother #findasolution #createchange #buildmomentum #imomsohard #ownitlikeowen #raredisease #hemihypertrophy #hemihyperplasia
Owen . I will always teach you to stand up for you Owen . I will always teach you to stand up for yourself and to stand up for freedom that is rightfully yours . Freedom to be unapologetically you . Freedom to love who you are . To love what you were born with . To stand up for your rights as an American and to fearlessly question anyone who tries to take them away . I will teach you to stand up for what is morally right even if itā€™s not popular opinion . Happy Independence Day everyone. Always be thankful for your freedom and those who paid the price for you to have itā¤ļøšŸ’™ . #happyindependenceday #largerthanbws #beckwithwiedemannsyndrome #freedomisntfreešŸ‡ŗšŸ‡ø #paidtheprice #standupforfreedom #lovewhoyouare #momswithtattoos #mombloggers #unpopularopinions #whatsmorallyright #standup #4thofjuly #macroglossia #raredisease #advocatelikeamother #hugyoutight #raisethemright #fightforyourrights
24/7, 7 days a week, 365 days a year . Thatā€™s ho 24/7, 7 days a week, 365 days a year . Thatā€™s how often this man supports me. Thereā€™s not a day that goes by that he doesnā€™t believe in me or what I am trying to accomplish with my blog and small business @findyourrare . And sure that may seem easy. Your supposed to support someone you love. But support is more than just a word. Support is sacrifice . When you run a small business with a purpose it takes grind. It takes grit. It takes sacrifice, that sacrifice mainly falls on your family and loved ones. The time that is put in to make a small business thrive isnā€™t measured in hours. Itā€™s measured in sacrifice. Sacrificing date nights. Sacrificing trips. Sacrificing conversations. All in the name of making a difference . Before Kristine and I joined forces we each had our own fire. We each had our own inspiration that we drew from our own experiences. We were never afforded the luxury of just waking up one day and deciding to create change. Itā€™s happened over time through hard work, determination, sacrifice, and hours upon hours of original thought, concepts, ideas, and designs . Together with the support of our spouses and our families we have been able to raise awareness through our brand for rare diseases. We have been able to share peoples stories, learn about and support rare diseases fighters, and raise funds to help advance research . Without the constant support and sacrifice from my husband I could not have accomplished all I have so far. And for that I am incredibly thankful. Thank you for understanding what this all takes and supporting me every step of the way even when that sometimes mean taking a backseat. Thank you for always believing in me and thanks for looking fine as hell in our new menswear shirt šŸ˜ My work view is fire šŸ”„ . #findyourrare #shareyourstory #becausewerestrong #rarediseaseawareness #communityovercompetition #originalthoughts #originality #grinddontstop #smallbusinessowners #beckwithwiedemannsyndrome #husbandsupport #thankfulforyou #menswearstyle #hustleforhappiness #accomplishinggoals #thrivingnotsurviving #inspireyourself
Today was amazing. We spent the entire day on the Today was amazing. We spent the entire day on the beach. Watching these three together melts my heart. I donā€™t want vacation to ever end šŸ’šā˜€ļøšŸ’› . #cousinsforlife #vacationgoals #buriedtreasure #sunburnt #myrtlebeachsc #letthemexplore #letthemplay
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