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.