Dooms Day

Would you still think I’m strong if you knew how many times I waved the white flag in my head? Would you still think I’m inspiring if you knew how many times I cried today? We only depict the painting of our lives on social media that we want to share. We are all guilty of it and seem to quickly forget that there’s more behind the scenes. It’s that awareness and compassion we lack when judgement takes hold of us. I do my best to share the positive praise and the unpleasant ugly, but even that is only clips of our life.

My daughter was diagnosed with the most severe form and life-threatening epilepsy 5 days ago, Lennox-Gastaut syndrome. Man have I been going through it! With each deep breath out I can feel the pressure of stress directly under my eyes. I’m constantly having to rope my mind back in from spiraling into the unknown. I’m trying to sift through the sand of our situation for the beauty but my eyes can’t focus, my thoughts are too loud. I just keep hearing, “I can’t lose her,” over and over like a broken record inside. Parenthood has not been kind to us but I’m not giving up either.

I just want to hold her every minute of every day, smell that baby smell on the top of her head, kiss those little baby toes. To be aware of the small things is what makes me feel whole. Be aware of how your kiddo looks at you, or what new sounds their mouth is teaching them to make, or how big their foot grew today. Don’t let another parent tell you that you’re babying your kid too much. Love them and love them hard. It’s felt like a gut punch these last few days again but this time is different. We know we’ve been here before but we’ve also experienced miracles with her. I’m not going to lie, this chapter feels real hard right now, but we’re not going down without a fight. My husband and I will continue to network to find the best treatment options for her, we will continue to advocate for her, and most importantly we will continue to love her. With confidence, love, and care I can say our journey isn’t finished yet and I plan to write several more blogs about the ups, the downs, and the in-betweens of this thing I call life.

Healing Journey PT. 2

 

But why?

 

Someone fucked up. They fucked up and now left my daughter with severe brain damage to try and navigate through this complex world. But who is they? I was seen twice a week by the OB office; could it be them? One of the nurses did mention I had a “lazy baby” that always needed stimulation to move around on ultrasounds and fetile monitoring strips. I was induced and monitored the whole 40-hour labor stretch in the hospital. Towards the end, the OB did mention we would be looking at a C-section if I didn’t dilate further as time was now ticking since she broke my water. Is she “they?”

Or what if I’m wrong? What if there is a genetic mutation causing the brain disorder affecting the development and function of her brain? How would I feel then?

As a child I always asked, “but why?” My parents classic answer of, “because I said so,” was not sufficient enough for me. It’s funny because my husband today will complain of the same thing, me always needing an explanation for everything. But if I can understand the reasoning then I can get behind whatever “it” is 100%. The unfortunate reality is not all things are made to be known or understood, but they are to be supported such as my daughter’s health. For so long I felt incomplete not finding the medical facts to complete her case, and truthfully there’s a little bit of me that still wanders down that path. A dreary heavy-hearted path wanting to place blame so badly to hold someone responsible. But my God, could I really face the fact that I’m an option too?

Olivia’s case has been dismissed for the past 4 months now. Each month a little easier for my heart to heal. It was December of 2019, two months after her birth, when I wrote a letter to Valley Medical Center and went in search for a lawyer. The response from the hospital was expectedly cold and purely record based. It mentioned that everything was done according to standard and not their fault. Then lawyer after lawyer failed until finally my fifth one. He had hope for our case and hired experts to go through all the records. It felt like that “at last,” moment. We kept in contact over the months going back and forth on the case and eventually planned on waiting it out a few more months to see what played out from our specialists at Seattle Children’s Hospital. Then that dreaded brown box showed up. I knew it was full of rejection before my husband even opened it. Sitting right on top was the lawyer’s letter, right on top of all the paper records and discs they so neatly stacked together. It felt like bricks hitting my spirit again. It read that at this time the case just wasn’t strong enough. Since medical negligence is the costliest case in court, he needed a slam dunk case and this just had too many gray areas. I couldn’t be mad, I understood from a professional stand point the risks of taking on this case and going up against a well-known large hospital. But it didn’t stop me from feeling that familiar failure feeling all over again.

I specifically told my husband that this fifth lawyer would be my final try and that if it didn’t work out then I would drop the case. I needed to move on emotionally, I needed to heal. Well, once that accountability came into play you think I listened? Nope! I argued with him about why I couldn’t let it go. I had my hands gripped so tight around this ugly, wounding, sorrowful case for so long I wasn’t sure how to get let it go. You ever grip something so tight for so long that your hands feel stuck in that position? It physically hurts to let go regardless of you knowing that you need to. That’s how this process has been for me. With time and my own ways of healing I can start to slowly pry my fingers off one by one.

Two years in and we still don’t have answers of why this happened and now specialists are questioning the original documented birth injury. Legally as her parent I only have 3 years from the time of injury to bring a case to the courts in the state of Washington. As my countdown continues and time runs out, I’ve decided to back burner this case. I know at this point I have done all I can do and that in itself is success. This fierce mama is not giving up and if something happens to come up before the deadline then I will of course explore it at that time but my family needs me. My family needs all of me to be present. What your time is focused on is what will grow and I’ve decided to shift focus to Olivia’s treatment and future. The support you have shown my family and I is unexplainable. Whether this is the first blog you’ve read or if you’ve followed our family’s journey the past 2 years, we say “Thank you from the bottom of our hearts.” There were visions of Olivia’s supporters backing us in a court room that played through my head, and maybe one day that will happen, but I’ve also realized I already feel that same support now as I write this in my home. I hate not having answers but maybe that’s the hope I’m missing. Like my previous blog, “I don’t know,” mentions maybe the silver lining is in not knowing and blindly trusting. As acceptance grows so does my ability to adapt.