Osteogenesis Imperfecta · Prenatal Diagnosis

Being a Special Needs Family in the Digital Age


“My life would suck without you” – Kelly Clarkson

I’m not sure what my life would look like without my connection with other families who are going through the same thing I am.

Bonded by rare, I have entered a tribe of other parents, moms in particular, who support me, build me up, give me strength, hope, encouragement, motivation and unconditional love and support.

Our community has given me insight and information, and has made me feel not alone.

In fact, not only do I not feel alone, I actually feel…. like I belong.

I belong to a community that is full of heart, soul, life, resiliency and desire…. a desire to learn, teach, do, be and thrive.

Not only have I found belonging in our community, but belonging to something that is larger. Larger than what brings us together, larger than the bullet points and detailed descriptions…. larger than my own conceptualization of what it all means.

…. and through this belonging….

….I have found…

…. created….

…stumbled upon as a bi-product of receivership….

…connection to myself.

“True belonging doesn’t require us to change who we are; It requires us to be who we are.” – BrenĂ© Brown


10, 15, 20+ years ago, our families did not have social media.

They had mail, newspapers and magazines. This was how they communicated with each other and with the world that they were here…. and perhaps traveling a different type of journey.

Language, compassion, abilities, inclusion…. these are pieces that have grown exponentially in the last decade…. in the last five years, even.

Families like mine get to take advantage of the path that was laid before us by families who have gutted the trail.

We get to proudly step into a space of empowerment and say “Yes! Here we are and it’s OK!”

We get to jump into hashtags and #celebraterare and move through our trendy social media messages like it’s all good…. like it’s all…. just the way it’s supposed to be.

…. because it is.

Not only do we get the community, the communication, the comradery, the celebration…..

…but we also get the conviction, and the courage.

We get the permission to…. feel OK.

We get the permission to know that even though things are different than we anticipated, we still get to live our lives with inspiration, hope, health and love.

We still get to step up and say,

“I am allowed to embrace this experience, despite its challenges, despite the hardship, despite the pain and disappointment…. and I’m allowed to say yes to living this life with purpose, joy and bravery.”

There is a growing online and offline community of families and organizations that promote our difference, inclusion and acceptance.

With this support, we get to lean in and feel empowered.

We get to receive the guidance from those who have been where we are, and we get to give back to those who are where we once were.

We also get the outpouring of love, support and prayers from family and friends. We get the privilege of sharing our journey, and the fulfillment and warmth that comes with that connection.

Social media has its flaws, but the benefit, for a family like ours, is monumental.



Join Me!


My Youtube Channel

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s