It’s been one year since I got the call in Myrtle Beach that Ella was being medivaced to Maria Ferrari and intubated. One year since I rushed home from a vacation CJ, my mom and I took to heal and grieve together after losing my dad.

So much has happened since that day. Ella has been hospitalized multiple times, and our family has been challenged in ways that we never knew possible. Looking back I am not sure how we did it. To say it was a nightmare would be an understatement. To say we have fully healed would be a lie.

Trauma and grief are so similar. There are stages and scars that do not go away without working through them. Suppressing them is a bandaid, and always an alternative option if avoiding all feeling is your main objective. I tried that, only being numb didn’t work for me. It made me short tempered and angry. It changed me into someone I didn’t like and I could visibly see how it was affecting those around me.

It can go without saying that healing doesn’t happen overnight. I am still working on me, and some days are truly a struggle. I am continuing to learn and grow, and am grateful for all those people in my life who have given me the grace to do just that. I recently read somewhere that people who are going through something traumatic often feel stuck. In feeling that way they watch the people around them move forward but struggle to get the momentum to do the same, in turn feeling forgotten. It’s incredibly hard to watch people carry on when you can’t. It creates distance and space.

While I still may partially feel stuck, things with Ella have certainly moved forward. In the last year her life has changed so much. We welcomed a new comm hab worker, we have seen countless nurses come and go, Ella started a new school, mom moved in, and we are navigating numerous new medications trying to find just the right combination to give Ella the highest quality of life possible. A house once full of five live in humans, two pets, and one part time comm hab worker is now extra full with six live in humans, two part time comm hab workers, multiple nurses (rotating), two dogs, a cat, and a bearded dragon.

I feel confident in admitting that I am still a work in progress. I have spent the last year learning insurance language and codes, training myself to oversee details with the nursing staff, and working on the perfect schedule for Ella. I am ready to continue my path of healing and advocating with so many new people and resources at my disposal.

With all of the extra support, and knowledge, comes entirely new stresses, challenges, and obstacles. As a parent you never stop worrying about your kiddos, but being a special needs parent makes that worry a little different. Knowing at any moment your life can change in a heartbeat is a fear that you carry with you everyday. Ella’s epilepsy is ongoing and there could be a relapse at any time. That thought is never far from our minds.

Time is a truly a blessing and curse. It flies by yet at the same time drags on. It is the one consistent and despite what happens today you make the choice whether to wake up and face tomorrow. This past year our family was in survival mode. This coming year I hope to take more time for me and continue to heal so that I can return to the best version of myself. Slowly but surely, I’m getting there.

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