This sucks! Plain and simple, it just f’ing sucks! The worst feeling in the world is watching someone you love suffering, and despite all your best efforts not being able to do enough to help them.

Ella’s a mess. Her medicine was increased this week and she is still having breakthrough seizures. She is now shaking, making weird facial movements, and most of the time looks unhappy. School calls multiple times a day to tell me she is struggling, and tired, and all I want to do is hold her in my arms and make it all okay.

I have said it before and I will continue to say it, no day is ever the same with Ella. We could have an amazing streak of happiness going and then out of no where complete despair creeps in. After six years Steve and I have become experts on Ella noises. We know the whine means she’s tired. We know her lazy cry (the one where she puts forth little effort to exaggerate it) means she wants her bed and we know her wail of frustration.

Tonight after dinner Steve brought Ella up to bed and she was screaming. When she screams that loud she’s either angry or something is bothering her. When she’s angry she gets violent, but this time she wasn’t. I grabbed her from Steve and hugged her tight. Sometimes squeezing a little tighter gives her that extra input she needs to calm down. That didn’t work. We got in bed and as she softly reached for my face I got close to her ear and quietly sang. She calmed down for a minute but started screaming again.

When she’s that upset she gives you a look. A look that goes right through you and makes you instantly ready to do anything humanly possible to make her world right again. Her bottom lip was quivering and she looked sad enough to make this mama cry. We both laid there a good ten minutes, looking at each other, with tears rolling down our cheeks. When she was ready she grabbed my hand, closed her eyes, and fell asleep. I sobbed.

We know there will be moments like this with Ella. We know because we have seen them before. No matter how many times we have though, it doesn’t make living through them any easier for either of us. She dealing with something that we can only guess, but you better believe that one hundred percent of the time we are there to get her through it.

I am not fully on board with the new care plan for Ella but know that it’s a necessary one until we can get to Boston. Any drastic changes now could potentially change our course, and we need things the way that they are to maximize our time there. I know for a fact that no part of Ella is in danger, so we will carry on with the recommendations we have been given until we are given new ones. We are so close.

It’s draining physically for Ella and emotionally for me. She will most likely not remember any of it but I surely won’t forget. I promised her again tonight that Steve and I would never give up searching for answers. She deserves to live her best life and we will make sure that happens. God as my witness.

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