Lily Kate is 3 now. It has been almost 3 years since we found out about her diagnosis. Three long years of seeing so many doctors and therapists with so many different opinions. It's so weird how my perspective has changed since the beginning of all this. At first after the initial shock of finding out I was so hopeful and filled with this fire thinking "if I can just get her to enough therapists then maybe she will be ok." Then as she got older the realization started sinking in... The reality of her falling further and further behind. The reality of her 1 year old sister passing her developmentally at 15 months of age. My hope slowly faded like a tire running out of air with just a tiny prick in the rubber. I didn't see my hope escaping me it just did. But as that particular hope escaped I found myself finding a new one. A hope that really just hoped that she would survive those seizures where she turned completely blue, or that she would learn to put 2 words together, or a hope that just accepted whoever she was going to be. I will never forget the words of my precious cousin Ashley that still ring in my ear from time to time, "She is going to be who she is going to be Theresa." She was so right and still is. This journey is after all one of not only accepting who Lily Kate is and will be, but a journey to accept who I am and will be. I haven't been doing a perfect job in dealing with the multiple behavior issues we've had these past 6 months. We were told that Lily Kate presents behavior at times that can be similar to Autism. She gets very irritable and NOTHING I do can calm her down. I try everything. And after I try everything that doesn't work I remember how imperfect I am because I fail every single day. I am worn out. And so is Casey. But it is ok. And I try to remember that just because her behavior is out of control at times doesn't mean that it always will be. That this is a journey for both of us to get better at the challenges that stand in our way. And sometimes I find that new hope again. I see a glimmer of her behavior getting better and that gives me so much joy.
We have surgery this Friday. Lily Kate is undergoing surgery to install a brain pacemaker called a VNS (Vagus Nerve Stimulator). They will do an incision in her neck and chest. The magnetic pacemaker will be in her chest and the magnetic coils will be in her neck. Every 30 seconds the magnet will go off and send an impulse to her Vagus nerve that goes directly to her brain. We have been told that this can help with seizure activity which she has been experiencing more of lately. It can also, although its not guaranteed, help with behavior, development and sleep. We are really hoping that God is going to use this for her benefit and our family's benefit. I'm terrified that my sweet 3 year old is undergoing surgery. She is scheduled to have it on Friday May 1 at 9am. Please say a prayer for her and my family if you think of us this week.
Love to you all, Theresa
