Blakely is having a tough night. A kind of night where she is fighting for hours against her seizures. On dark nights like these we wait for her to come through. We watch her heart rate and oxygen levels jump up and down. We listen to her scream, whimper and suck for breath. We watch her roll her eyes and flex her muscles and arch her back. We are waiting for the moment when the glaze over her eyes fades away and the brightness comes back into her face. Moments like these feel as helpless as watching her jump off a cliff. We plunge forward to catch her – to rescue her but always miss. We are left peering over the cliff hoping that at the bottom there is a truck full of pillows. We hope that she makes it every time but we don’t know. We never know what will happen when her seizures strike and we feel completely helpless.
Video of Blakely tonight 😦
I wish it was me who had the seizures. I wish it was me who had Alobar Holoprosencephaly. It breaks my heart to see her walk this journey. She has had to walk through it with parents who are helpless and defeated and who can’t handle it. She has had to walk through this with doctors who don’t know how to treat her and with medicine that consistently fails her. The mess is painful and I find myself trying to make the pain feel better by “expecting” defeat… by “expecting” death. If I can just prepare myself for the worst than maybe it won’t hurt that bad – maybe I won’t be scared. I am trying to let death, evil and disease be the ugly mess that they are, but I am drowning in its chaos.
I am starting to get used to the feeling of helplessness. I am getting used to the feeling of defeat. I find myself asking dark questions like, “How is this going to end or when is this going to end?” These questions scare me as a dad. They jolt me as they creep into my mind during her seizure episodes. When I ask questions like these in my head I feel like I am wanting Blakely to die. I don’t really know how to handle that. I don’t want her to die because she is my most precious treasure and I will miss her forever. I will miss it all. I will miss feeding her throughout the night. I will miss giving her baths and rocking her to sleep. I will miss reading her stories and kissing her cheeks. I will miss playing with her hair and making it stick straight up. I will miss her awesome smile that rocks me to the core. I will even miss the seizures, the medicine, the long car rides to doctor appointments, the late nights and the early mornings – I will miss the pain. All the good, the bad, the beautiful and the ugly make it all worth it but at the same time I can’t handle it.
This conflict between not wanting Blakely to go but wanting it to end is perplexing. It reminds me of a movie that a friend recommended me to watch called, “A Monster Calls”. I highly recommend it but make sure to have a full roll of toilet paper and some ice cream because you will cry a goober amount of tears. But there is a scene at the end of the movie that captures this conflict perfectly. There is a boy who is about to lose his sick mother and he is standing by her bedside. Throughout the movie the boy has been talking to his monster friend about how he wants to let his mother go. He is afraid of the moment when she will die and doesn’t know what to say. His monster friend encourages him to tell his mother the truth and he utters the words to his mom, “I don’t want you to go.”
It is a powerful scene and I am attaching the link below:
I think that this scene captures the way I feel. I am afraid of the seizures because they hurt. They hurt Emily, they hurt Blakely and they hurt me. It is painful to see them and it is painful to know that this is not the way it is supposed to be. We long for things to be made right but right now they are wildly messed up. I want it all to end but I don’t want Blakely to go.
“I lift up my eyes to the hills. From where does my help come? My help comes from the LORD, who made heaven and earth (and Blakely).” – Psalm 121:1-2