Agony

Ive contemplated whether I wanted to continue to write this blog. It’s been hard to come up with the proper words to describe what we are feeling and going through but I will try.

The last few days my husband and I have agonized over the absolute wrenching heartache that we now feel. Our lives have turned completely upside down in the last few weeks and theres no real way to describe how incredibly scared we feel. Along with the unknowns of how to be a good mother to a special needs child, the unknown of what caused my daughters seizures still remain. While Grace is opening her eyes everyday, she looks through me. While her arms and legs move, the movement has no purpose. She is not herself and day by day the more she is weaned off the seizure medications that make her drowsy, the more we see that she isn't there anymore.

The only people that I really communicate with now are doctors and complete strangers that have messaged me over social media who are in the same predicament we are in. It’s hard to make small talk to an old friend who asks “how are you” when you both know the answer to that question. I want to apologize to all my friends who have reached out and gotten no response. Its too painful for me to respond with anything. I know I'm not the same person as before and I also know that I can't and won't ever be the same friend that I used to be. I appreciate your respect in this.

Everyday in this hospital room I watch the clock tick by. Each second that I am not asleep I’m reminded of the hell that we are in and feel a devastating weight upon my chest that gets heavier by the day. Since Grace is out of the ICU the monitors have been replaced with deafening silence when she's asleep. Her vitals are great which means the monitors are gone, but when she's awake her breathing is so labored due to the intubation she endured, the tube thats in her nose that she is being fed from, and the damage that has been done to her brain. It’s agonizing hearing your child struggle to take a breath. It sounds like something is blocking her wind pipe and I see her little chest concave in with every inhale. I want to breath for her and I want to switch places with her but I'm stuck in this able body that I can't share with her. This able body that used to take care of my little girl now knows nothing about caring for her. As a mother you feel so fucking useless and heartbroken seeing your baby struggle and not know what to do for her. There have even been agonizing yells that escape her mouth and at which point a few times I've had to leave the room for fear of another barrage of tears and a mental breakdown.

My husband is so strong. I know he hurts just as much as I do, but he wakes up with a positive attitude every day. It doesn't always stay positive throughout, but he always comes back to center and drags me along through each hour. I can't even make eye contact with him anymore. It’s too painful to look in anyones eyes for fear they would feel my pain and have to endure it with me. For fear I would have to make small talk. The last thing in the world I want to do now is make small talk. I saunter with my head down around the hospital and look at the floor because thats where I feel like I want to curl up and die. I’ve had to erase all the hopes and dreams that I've had for my little girl because there is little chance that she will develop past where she is now. I wish we didn't have 10 perfect months with her because we know what we’ve lost and we have the rest of her life to live with the loss. I wish she had broken her bones instead of having her brain be stripped away. I wish she had a heart condition so that I could still see her smile when she looks at me. But most of all I wish it was me in that hospital bed and not her.