These last few months have been tough. Medically Ella has been fine but behind the scenes, things have been intense. Lately, no battle has been without causalities, whether big or small. Common sense seems to be far less prevalent than it should be and so many valid and logical questions have gone unanswered.

I don’t take for granted all the benefits that we get because I know there are children and families who get far less, if anything at all. As frustrated as I am with how bad the system is broken my biggest frustration is the fact that there is no direct person to call to get answers. Even worse, you call someone and get the wrong answers, proceed how you think you should based on that answer, only to have to start at square one when you finally find out you were misguided.

There are so many emotions involved. I get angry. I want to call every number I have and scream at the top of my lungs. At the moment I know this will make me feel better but I have always been told over and over that you catch more bees with honey. I know there will be damage control involved if I lose my mind and l don’t have time for that. Since I can’t direct the anger where it needs to go, I find other places for it. I realize this is not good, healthy, or productive.

I cry. It happens far less than it used to but I would say once every two weeks I let loose. I cry because at every corner I turn there is always a wall waiting to stop me. I cry because my boys are not getting my best self if I am battling on the phone and writing urgent emails during the time we should be spending together. I cry because I am tired. I carry a lot and sometimes the weight of all of it exhausts me.

Most of all though I feel like despite everything I do, it’s not enough. I question everything. Is there another doctor that can help Ella? Should we be doing more therapies outside of school? Does she need more support at home? Do I spend enough time with her? Is she in pain and can’t tell me? Should I go back to work so we can afford more of the equipment she could benefit from? My mind is always racing and researching.

What I do know is that I give all I have in advocating for the things I can control. I have had many victories and those victories keep me moving forward. I have learned focusing on the past will get me nowhere and learning from things that have happened only makes me a stronger force to be reckoned with. Not every day is a good day but I am so blessed to have Steve and my babies inspiring me.

There are better days ahead. I know it. I just need to weather this storm. If you are feeling the same, hang in there. We got this.

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