Thinking back on when we received Maddux’s initial diagnosis of spina bifida, I was desperate to find others in our same boat! I quickly needed to put a face to this diagnosis. I wanted to know what other families looked like and what their kids were capable of, so I could wrap my head around all of this. Were they just like us? Did other moms look like me? Were they my age? Did they love music and sports like we do? Do they go out for cocktails and do they have social lives? I can’t explain why I was so curious. Probably because when you are so afraid of something, you seek comfort in those most like you. What did it matter if these people were like me at all? It didn’t. I just needed reassurance that everything was going to be ok.
I quickly began searching hashtags to see how others in the community lived. I searched: #spinabifida #spinabifidababy #fetalsurgery and the list goes on. The first friend I made within the spina bifida community was another mother-to-be who had recently undergone fetal surgery and her little girl, Amelia was due just weeks after I would have my fetal surgery. I reached out to her in desperation after stumbling across her beautiful maternity photos on Instagram, which highlighted her fetal surgery scar. Someone else, just like me, I thought. Here I am, a complete stranger, spilling my guts to someone across the country and who I’ve never met, in hopes of acceptance and understanding. She wrote back and we began a friendship that day solely based on the common bond of spina bifida and fetal surgery. I was grateful.
Around the same time, my husband came across a blog about a family whose son has the same lesion level as Maddux. We began following the blog and I fell in love with this family who I had never even met! Everything Mary Evelyn Smith has written about in her blog What Do You Do, Dear? on her son was so relatable to what I was going through. It even gave me a glimpse into the future of potential things to come in raising a child with a disability. Again, putting myself out there, I reached out. I’m not even sure I expected a response but to my surprise, she responded back. There was no judgement, just advice and friendship. It was no different when Maddux was diagnosed with achondroplasia. I reached out to a mother of a beautiful little girl who also has the same type of dwarfism as my son, after finding her blog Dream Big Little One. She related to me, offered great advice and steered us in the direction of the LPA (Little People of America).
I could’ve never imagined the incredible support system we would find through reaching out to complete strangers. I’m sure I came across as a wacko, reaching out to people I didn’t know and sharing my personal experiences and fears with them. Instead of judgement, everyone reached out with open arms.
Over the weekend, we were so fortunate meet up with a family that reached out to us through LPA connections. Ramiro and his beautiful wife Emily invited us into their home and shared a wealth of knowledge with us about achondroplasia. Not only did we leave feeling a sense of relief on many of the questions we had about dwarfism and how it relates to Maddux but we also left knowing we had made life-long friends.
This community of people that we have come into contact with has been unbelievably heartwarming. Maddux is so lucky to have such an abundance of love and support from people all over. And I am especially grateful to these other mothers (and fathers) for their constant support throughout this journey! I hope this blog will serve as a channel of hope for others going through a new diagnosis or even someone else just seeking out acceptance in a similar circumstance.
We really are all in this together!