Someone new to my life was recently reading my blog and commented that she had no idea we had been through so much with Ella, nor did she realize the extent of her delays and daily challenges.

That’s because, until fairly recently, we used to be of the mindset that Ella’s struggles and disability were a private matter. We only shared with family, a few friends, and anyone we felt could offer us some insight or new direction. We never tried to hide what was going on, but we certainly didn’t broadcast it either.

It wasn’t always that way though. When Ella was born we did initially confide in people and tell them what was happening. She spent ten days in the NICU, so naturally people had questions. Once we answered them, with what little information we had, we found ourselves getting the same reactions over and over again. “I am so sorry.” “I don’t know what I would do if that were my child.” “Oh man, I feel so bad for you.” “Poor Ella.” “I couldn’t do it.”

We quickly realized pity was not something we wanted people to feel for us, or Ella, and took some time to really evaluate our relationships. We tightened up our inner circle and immediately put all our focus on Ella, making sure she got what she needed and was taken care of.

Then a series of events took place that change my perspective on things. Other mom friends were having children who were born with, or later developed, medical conditions, disabilities, or developmental delays. These moms were brave enough to share their stories of success and failure. I decided to privately reach out to some of them to share Ella’s story, ask them about their children, and any support plans that were in place.

What happened next was nothing short of amazing. These moms and I were sharing names of doctors, therapists, and sometimes multiple pictures and videos of the smallest of milestones reached by our children. Just talking to someone that had that same deep understanding of how I felt was amazing.

It changed me, and my outlook on how we were approaching things. Steve and I had a long talk and agreed there was a community of people out there ready and willing to help us. All we had to do was ask. I went all in. Joined social media groups and asked hard questions, talked to moms from Ella’s school, and continued to reach out to friends who were going through similar struggles for advice and suggestions.

Almost daily I am in touch with someone in my special needs network to ask advice, see how they are holding up, or to just vent. In this past week, two or three people have reached out to me on social media sharing struggles they are having with their own children. People I have not spoken to in years. Being there for someone is a powerful thing.

We don’t have any answers on Ella condition, but I have faith that one day we will. We won’t ever give up searching for them, and are eternally grateful for the continued support that we get!

As always, I am here if you have questions, want to talk, or need help finding what you are looking for. No question or thought is off the table when you are dealing with a special needs child. The littlest thing to you might be what leads to a diagnosis for another.