A Summer to Celebrate

“You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete.”

~ Buckminister Fuller, inventor and visionary.

We are asked to step into a new and exciting time. What a beautiful opportunity it is to be on earth now. What powerful beings we are to have aligned ourselves with such great potential at this moment.

New models of ideas, structures and systems are unfolding. They are becoming powerful and clear.

Many external revelations are the result of intelligent, expanded and compassionate times.

Although in life we experience physical manifestations, it is through a remodeling of ourselves, and focus on the internal, that we find truth, wisdom and purpose.

The greatest new model we can make… is ourselves.

…. and the old becomes…

…. obsolete.

We have full potential to live life ….to its fullest.

The definition of fullest is limited only to that which we decide to be.

…. because as long as we observe…

… there will be something further for us to see.

Meeting our OI family + Niko’s 1st birthday

The OIF (Osteogenesis Imperfecta Foundation) National Conference, Baltimore, MD: Our first conference, which ended on the celebration of Niko’s very first trip around the sun!

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Road trip and weekend with my oldest baby and my youngest baby

The mission of the OI Foundation is to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support. www.oif.org

 

Largest take-aways

  • Everyone is nice and amazing
  • Meeting other families, some of which I have met online and others I saw and met for the first time, is nothing short of magical… the chemistry is…. electric, fascinating and humbling.
  • Meeting Dr. Rauch, pediatrician and clinical scientist with the Shriners Hospitals for Children, Montreal. I gained a better understanding of treatment overall, and growth. OI is a form of dwarfism. As a form of self preservation, an OI baby may eat less/gain less. Weight is a fracture risk on the bones. Niko eats a lot, plays a lot and is alert and active. He will be who he is and grow as he will…. strong!
  • After getting a very busy, at times, anxiety-ridden, conference, with an 11-year-old and almost 1-year-old under my belt, I feel confident that we will be ready for the next one!

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These are Fassier-Duval (FD) rods and were designed specifically for OI bones. They are the gold standard in stabilizing the bones in a patient with OI. They are inserted in the long bone and extend to grow as the bone grows. Regular rods or plates that would be used in bones that do not have OI, can do more damage than good when used in a patient with OI. Rods significantly reduce the risk of fracture, and can reduce the severity of a fracture that does occur. It offers stability for mobility, as well as pain relief, as it decreases fractures. Bowing, fractures and weak bones otherwise limit or eliminate weight bearing.

Dr. Bober
Dr. Bober, our genetic doctor from Dupont Hospital, was the very first person I spoke to who knew anything about OI. He gave me a sense of peace, stability and empowerment that I hadn’t gotten up to that point. Thank you for your passion for and dedication to our OI babes and their families!

My beautiful, loving, caring, feisty daughter and our sweet, strong, smiley boy!

Beth, and her daughter, Halle… Beth was the first person I spoke to in Pittsburgh, who knew anything about OI… her daughter Halle was diagnosed when she was a baby and Beth has been a lifesaver for us… to say the very least. I will spend the rest of our lives thanking her for her endless outreach, loving wisdom and ability to give and care.

Mary has been an incredible resource to the OI community, and this was our second time getting to meet her and her family. The first was in Omaha at Niko’s clinic appointment.

On the right is Amy, and I was so happy I got to meet her in person! I’ve watched her videos and looked at her pictures so many times, as her son just turned 7. It’s pretty typical now with social media to spend hours upon hours searching through past posts in our FB group, to learn more about a specific issue or get an answer to a question.

We got to meet Robby for the first time in Omaha this past May. You may recognize Robby from his time as Kid President. If you’re like us, you wouldn’t have known he has OI.

The funny thing about Kid President is…. 4 years ago, Sean, my husband, ran for state representative of our district. After seeing Kid President’s videos, we were inspired to create our own video for Sean’s campaign. Kid Representative with Theo, my now 8-year-old, was born. The video is Kid Representative…It’s pretty cool we aligned with Robby these four year later, and became part of his OI family.

Dr. Jain
Dr. Jain, a member of the Osteogenesis Imperfecta Clinic at Kennedy Krieger Institute and an assistant professor in the Department of Pediatrics at the Johns Hopkins School of Medicine, is a great resource for us. During my pregnancy, he was the second person I spoke to who knew anything about OI. His calm and caring demeanor, mixed with his knowledge and understanding of OI, gave me much optimism before and after Niko was born.

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Glad to be home… happy birthday, buddy.

What a year it has been

When we first got Niko’s diagnosis during my pregnancy, I prayed for his first birthday… I imagined balloons, a warm summer day, and a healthy, happy 1-year-old…. Lord, may we have a celebration of his first year…

 

Baby Niko is born with Osteogenesis Imperfecta 7Y1A0185

What a difference the year makes….

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Niko's first birthday

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Niko's first birthday

Meeting an OI brother + First beach trip

Thankfully for social media, we have gotten to know and love an OI family, and met them on our way to our beach vacation!

Meet Coale + his family

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Me and Rebecca and boys

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Strong bones + strong bonds

 

Niko’s very first time seeing the ocean and feeling the beach air

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He loved it more and more every day… our little baby crab

 

Purpose

One thing after the other… the chaos of meeting the world with our children and allowing and creating our values to rise….

Anxiety reared its head this season and I realize now that I have the power to master the beast of my mind. Learning… and learning quickly…

The world is shifting and changing at a rapid pace.

We are being called to adapt… and move.

We must not let the old ways of being and thinking, determine our lives.

As valuable as it is to reflect… we must not get lost in the story. We must not let our past determine our future… or our present moment.

Anxiety is worrying about a future… in the present moment… it can become a physical response to an adaptation to stress.

When a fearful experience brands our hearts and our bodies, we continue to go back to it… we are wired for stress, panic, anxiety and fear.

…. we must not get lost in the fear.

As an advocate for shadow work, which is going into those “negative” parts of ourselves in order to bring awareness to them… bringing them to the light in order to integrate them for wholeness….

… I have learned that we are offered a new paradigm… a new opportunity.

We need not dive deep into these thoughts and feelings of pain, but rather … rewire our brains for that which is greater…

We are only human and will feel emotions … but we are greater than the product of our past… greater than the product of our emotions.

If you’re feeling the energies of anxiety and stress more than ever before… you are not alone.

It’s perfectly normal to feel the intense energies of this time.

With so many things going on at one time, juggling family, a move, medical care, a new baby and community… as cruise control set it, it gave me time… to look down.

Like walking on a tight rope, it’s best to keep going and not look down… or you might freak out about the actual feat you’re immersed in… the altitude you’re functioning at… the altitude you’re vibrating at… when all the world tells you it’s a good time to crumble and you say “Not me, not today”…. You stop the naysayers and wrangle the fear and say “You don’t belong here”…. You master the beast of powerlessness that grips your cells and say We Are Made For Greatness and We Will Not Be Shaken. ⠀⠀⠀⠀⠀⠀

It’s an exhilerating time to be here, and I’m grateful we have made it this far. Step in, step up and we rise.

Thank you for reading and have a beautiful week!

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