When my kids get older and look back on their childhood I want them to remember that I was always there for them. To know that I supported them, but sometimes needed to let them fall in order to learn life’s most important lessons when they got back up. That despite not always agreeing with my decisions, I always had their best interests at heart. Most importantly I want them to know that there was never a second that I gave up on them.

I believe in leading by example. I also believe that if there is something you want badly enough, you should do everything you can to get it. This past week fighting for what was right quickly turned from being optional to being mandatory when I got a call informing us that starting May 1st our insurance was no longer covering Ella’s in home skilled nursing care. The news was unexpected but it triggered something inside that sent me right into fight mode.

I am a reactive person and often times Steve will tell me to slow down. I have been known to immediately jump down someone’s throat before gather any or all information. I have since learned from that mistake. When we first started our journey with Ella, right there in the NICU, I assumed that those caring for Ella were fully committed to making her life better. That they would have no reason to share false information or omit vital details. Only Ella’s life is not black and white. It’s filled with questions that have no answers. For that reason it quickly became clear that most people we encountered were playing for team CYA.

I say most because I have to give credit where credit is due. We have an amazing neurological team, Ella has had exceptional nursing care, and her current school based support team has been wonderful. Her pediatrician is nothing but supportive and Mara has been a godsend to both Ella and myself. There is goodness surrounding us and I am grateful to have these people in our corner.

It is this group of people who rallied to fight when we got the nursing denial letter. Her neurologist quickly scheduled a peer to peer review and when care was still denied he wrote a letter to appeal the decision. Her nurses reviewed her chart notes with me so that I had accurate facts, such as dates and times of possible seizure activity. This allowed me to compose a two page letter to submit with the appeal. Mara encouraged me to reach out to my local senator again (I had already spoken to his staff regarding a different issue) and his office was able to send a letter to the team reviewing the appeal. The nursing agency also submitted further documenting to support the need for skilled nursing.

Just after noon on Thursday I received a call from the corporate office of our insurance company. I was told Friday a decision was being made and seeing that number pop up a day early made my stomach drop. Patty wasn’t the sweetest but because she told me our appeal was overturned, I let it slide. Ella’s “team” had secured her ninety more days of nursing before another review would take place. We had won this battle but we fought hard. I will pray hard that there won’t even be a battle next time.

I sincerely hope that one day Ella will no longer need nursing care. That time is not now though. We have been told over and over that it takes years before a patient with Ella’s history to be considered stable. We are just over halfway to the one year mark and while her days seem to be stable, her nights always aren’t. We have further testing in place to determine if what we are seeing at night is neurologically related, and if those results find that it is, that information will be submitted as further justification for nursing care.

While I am fully aware there are other options that don’t involve our primary insurance company, I very much prefer to keep the team we have had for the last seven months. They know Ella well and can pinpoint when things are off. Changing coverage would mean changing nurses and that is not ideal for Ella at this point in her journey. It would surely be a setback in her care.

I am her voice. I am also the voice for CJ and Jack. I will continue use said voice to get my kiddos whatever they are entitled to, and I will challenge anyone who thinks they know better than me. This mama bear may be tired but she will never back down.

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