Today was not a great day! Coming off of two fabulous days it made me super upset to see Ella struggle so much! She is frustrated and she can’t tell me why. Today, I am mad.

I am mad that no one can tell us what is going on with Ella. I am mad that we have brought her to over a dozen specialists and not one has given us any solid answers. I am mad that Boston hasn’t called to schedule an appointment yet, even though I do understand why. I am mad that she has to feel like crap and we can’t figure out how to make it better.

What’s most frustrating about Ella having meltdowns, are the days she gets violent. She grabs whatever she can reach first, she pinches and squeezes skin, and when she has reached her absolute breaking point, she bites. Most of her emotions are sensory driven and in the last month we have been seeing more and more of that. She gets excited, things go in her mouth. She gets angry, things go in her mouth. She needs to stay calm and grounded, things go in her mouth. She is forever chewing on her bibs and blankets. Her hands are her aide in getting that sensory input that she so desperately needs.

I know to this day, we have given Ella every opportunity that we can to make things easier for her. We have gotten her equipment, seen specialists, tried all different kinds of therapies, and changed her diet. We add and subtract whatever we need to her daily living so that she can have the best days possible. As I hear of new toys and modifications that help other children, I make sure to follow up and see if any of them can help Ella. Not everything is a success, but that doesn’t mean we aren’t going to try it out and see.

Today we got to spend the afternoon/evening with my cousins, whom we had not seen since before the quarantine. It’s been even longer since all the kids have been together, due to the fact that we usually just meet for date nights. The distraction from the every day craziness of life was nice. What was even nicer was seeing what a great job we all have done parenting. The kids got along so well, and even though it’s been forever since we have all gotten together, it felt like no time had passed. It’s nice to take a minute to pause and appreciate that. Ella even had some brief moments of happiness!

Tomorrow I hope to wake up feeling less angry and defeated. These long days with Ella drain me. Nothing makes me happier than seeing that smile of hers. I am going to just keep swimming, and continue to pray we get answers soon.

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