As I sit back and reflect on the year we have had as a family, I realize that for me, there has been a shift. Last year we were propelled into a world where we knew little about what was on the horizon. We were navigating a diagnosis for Ella that was unfamiliar while learning and absorbing all we could along the way.

The beginning of this year brought a great deal of knowledge. With that knowledge came more power. More power to advocate. More power to use Ella’s diagnosis to get the services and equipment she needed. More power to make hard decisions involving her direct care. It finally felt like we had it all together and things were moving in a positive direction. 

Much like our life with epilepsy, life with a special needs child is notoriously unpredictable. One week you have a fully staffed team of nurses, support, and resources while the next week you are down to only a few. Agencies and institutions make decisions that affect your child, not fully taking into consideration the repercussions of their actions. Once something is gone, getting it back requires extreme effort. To make a change, multiple hurdles need to be cleared. 

Where I once was open to flexibility, I quickly learned that if you give an inch people will take a mile. We have loaned out equipment that should have legally been supplied, accepted subpar medical care just to have watchful eyes on Ella, and made concessions to make other people’s lives easier when ultimately they were here to help us. I have always prided myself in being transparent because I never wanted anyone to not know where I was coming from. I had hoped if I held true to that, there would never be any surprises. 

I have found that keeping my guard up seems to suit me better. Waiting days for documents to be returned or prescriptions to be filled is no longer the norm. Being accused of things by staff working in my house is completely unacceptable. The things being said about me were so far from the truth. I absolutely refuse to have my character attacked like that. You better believe I am fighting back, and with a vengeance. 

Advocating for Ella has truly become a full-time job for me. Some days after I put the kids on the bus I spend hours on the phone or writing emails waiting for responses. I rely on people to provide me with information to move us in a positive direction only to feel like instead of moving forward we are propelling backward. More days than not I go to bed feeling defeated, hoping for victory when I wake up. 

I know people think I am a hardass and at times can be relentless. I prefer to call myself rightfully demanding. My expectations for Ella’s care are clear. I make the rules. She is my daughter. Opinions are welcome but with the understanding that they are just that. I will always be a work in progress but no one knows baby girl better than me. 

This year I fought hard. Next year I will fight even harder. Sometimes doing the right thing makes you the outlier but I am happy to stand alone if it means Ella is getting all she is entitled to.

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