What if, What if, What if?

This is the flavor of anxiety we saw tonight in our 4 year old.

We are going on a family vacation to Cape Cod in June. I brought it up at bedtime tonight to my daughter and said how excited I was. She lit up when I mentioned it but that light quickly faded. You could see the wheels start turning in her head. The wheels that you DON’T always want to turn for an innocent little girl. Her brows became furrowed. She started to stutter and ask questions.

“What if there are crabs?”

“What if the crabs come up on the sand and pinch me?”

“What does it feel like if you get pinched, can you show me on my hand?”

“What if Madeleine eats sand?! Can you not put her in the sand so she doesn’t eat it”

“What if the room I sleep in is dark?”

“I want to bring my stuffies to the beach but what if they get sand on them?!”

“Can you bring something to keep Maddie in so that she doesn’t touch the sand?”

“What if the beach has big waves? I don’t want to go in the water. Will there be big waves?”

The panicked, anxious, racing thoughts went on and on with repeated questions even after our best efforts to acknowledge and reassure.
It breaks my heart to hear such worries from a little girl that should be way more focused on her excitement for a vacation. I get that kids anticipate what things might be like in the future but the level she goes to is an upsetting one. And that is only the beginning of the challenges having an anxiety disorder has brought our Eleanor. It has been a really long road with many doctors, psychologists, evaluations and not to mention the struggle Ryan and I have had both collectively and individually. We’ve slowly started to get answers (there are sensory processing components as well) and see more clearly what makes her tick and as heartbreaking as it is to see your child struggle, these answers will hopefully also bring to light possible tools for coping and also open doors for finding the right supports. We’ve been lucky she qualified for services through CDS (Child Development Services) very early on and having that support was immeasurable (Teresa <3). That led us to her current school where I believe she is in the best place she could be.

I think people hear the word “anxiety” or the term “anxiety disorder” and it’s largely misunderstood by those that have no true experience with it. Having anxious moments is a part of life. Feeling anxiety is a normal human feeling and response. An anxiety disorder though is a mental health disorder that is characterized by excessive feelings of worry, anxiety, or fear that interfere with someone’s every-day life. There are stretches in time where every single day is a complete struggle. Eleanor comes by it honestly; I was diagnosed with GAD (Generalized Anxiety Disorder) at 16 and it has completely affected my every-day life, sometimes in debilitating ways. I even have intense anxiety about writing and sharing a blog post like this. So Eleanor comes by it honestly, unfortunately. In kids it can present in many different ways. Tonight for example was showing in a very obvious fear or worry-based way. But often times it presents with extreme meltdowns and explosive tantrums because she struggles to understand or regulate big feelings she has inside and can’t quite verbalize what’s troubling her. There was a 2 year period where every single time we had to leave the house and put her in the car that it would take 20-30 minutes of screaming, biting, kicking, spitting, and hyperventilating to get her in the car. Two years!! Almost every transition from a bday party or family gathering ended the same as well. We began to dread going anywhere and felt alienated from other families that didn’t understand what it was like. We will have a conversation with another parent and we would mention that we were having a really hard time with Eleanor and tantrums. The common and understandable response is “oh yea, she’s 2 or 3! We have tantrums at our house.” But if we pushed a little we quickly realized Eleanor’s went to a very extreme level of upset and she had multiple huge meltdowns a day leaving us raw and numb.

What gets us through is those moments of just seeing Eleanor. Without the anxiety. Without the dysregulation. Her personality is electric and she’ll either blow you away with how intellectual she is or have you in stitches with her shows and facial expressions. I’ve truly never met anyone like her and my goal is to help the truest Eleanor blossom while learning to cope with whatever challenges she might have or face.

I could write a 10 page post about all the intense, grueling details of the last four years with Eleanor but I’d rather not broadcast everything to the world. In summary, it has been the hardest four years of my life and taken a toll that has forever changed both myself and Ryan. We still don’t feel like we have all the answers and other diagnoses could be in her future. But what I do know is that we are truly grateful for the family support that we have, the psychologist that has let us cry and vent for years, the support from CDS, the school that has helped her grow in leaps and bounds and as self-centered as it may sound, for the fact that she has parents that care and have tirelessly worked to do whatever it takes to help her cope and also blossom into the beautiful person she is.