I’ve never been much of a fighter. I can get heated over some issues, but I don’t care for confrontation. I’d much rather relax and drink lattes and forget our differences. Since Jane, I’ve had no choice.
We’ve watched our daughter lose physical capabilities, as well as mental function, as seizures daily attack her body. She has now failed two medications (Or rather, they have failed us), which in laymen’s terms means there’s only a 10% chance that medication will ever work for her.
Something has to be done.
Last month, I encountered a divine connection through many mutual friends with a lady who will remain nameless for now since I don’t have her permission to blast her business. We’ll call her Katrina. A Russian ski instructor who moved here with her husband who took an analyst job in Silicon valley, but they live in Vacaville. (This whole story is made up for your reading pleasure). At any rate, Katrina’s daughter experienced epilepsy and is now 3 yrs old and on the turn around. Her healing came through care and treatment given by the Children’s Hospital of Orange County. After about a 5 min phone conversation with Katrina it became obvious to me that this was the next step for our Jane. What was not obvious is that this was going to require a fight.
For 3 weeks we worked daily to convince our hospital and every tier of medical staff thereof that they should refer Jane to CHOC, which happens to be a level 4 pediatric epilepsy center (Aka: It’s really really good at seizure treatment!) We were denied this request, for various reasons, a total of 4 times in 3 weeks.
*Cue my Life Time movie trailer* . “The powerful drama based on true events, of a family fighting for the thing most precious to them. In the face of opposition, the relentless uphill battle is proof that there is nothing that can stand between a mother and her helpless child, no matter how high the cost!”
But really, this helped me. So many actresses have fought for their child. Like Angelina Jolie in that movie the Changeling. I never saw it, but pretty sure she played an intense mom in that movie. And imagining myself as Angelina helped me press through.
Everyday was a new reason for declination, a new person to talk to that needed to talk to another new person who would talk to another new person who may find our reasons for referral legitimate, possibly. After almost a month of this we were tired, discouraged and seeking the next best option since our first choice was seemingly not going happen. Just then, the phone rang.
No seriously, like RIGHT then. “Hello Mrs. Harris, I have good news”
No sweeter words. We had been approved for a referral to the Children’s Hospital of Orange County.
This was and is a HUGE victory for us! And we are so excited to get on this track to healing. But the truth is, our battle is not about a hospital, or a doctor, or a referral. The battle is about continually advocating and fighting for our daughter. If it wasn’t this, it would be against the weird preschool teacher or the rude kid on the playground, common core math, or the over competitive dance coach. It’s all training to fight. It’s all little pieces in our own personal Life Time movie.
Our journey has really just begun all over again. We hope to get in to an appointment for brain monitoring, diagnosis and treatment options for Jane. This could take days, weeks, or months.I hope that in the meantime, as we keep fighting, that any parent who finds this blog, who’s child is sick, who needs a boost, will know that they are not alone and they should never give up.
We don’t know what our next fight will look like, but as far as I can project it looks like it may get more intense before it gets easier. But we can do this because we are not alone. Saints and angels are rooting us on. And between the tears there are friends to laugh with and hold your arms up. And for every defeat there are little victories. And for even just a moment, we can breathe in deep rest and satisfaction. Knowing that we fought, and we won this one. But it’s time to gear up because it’s not over. And fighting for what’s best for Jane will never be over.