Lonely

We are still in the hospital and its nothing short of an absolute hell. Listening to your child howl in pain from a brain injury every single moment theyre awake makes me feel like the most helpless and useless mother on earth. I cannot comfort my baby like I used to. Once upon a time, she fit in my arms and clung to me and we fit like two perfect puzzle pieces. Now her body curves to the right and her head is turned to the right and wants to stay there. Even her eyes are shifted right and only every so often she brings them to center for a few seconds and they quickly shift back. I can see her dark pupils trembling once they settle on the right side like something is malfunctioning.

This brain injury has taken an insane toll on my daughters body and I live in fear of being around her. I am grappling with extreme feelings of guilt because I don't know how to care for her anymore. I want so bad to not be in the hospital room, but because I am her mother I feel guilty not being there for her. We have a bathroom in our room, but I purposely leave to use the one down the hallway because I cannot listen to her wail for another minute. Even looking at her brings me to tears, and its keeping me from properly taking care of her. Holding her and feeling her struggle in my arms makes me sob. Not seeing her make eye contact with me with a sign of recognition kills me every day. Even my body is in fight or flight mode. I stopped breastfeeding when she was 6months old and my milk quickly dried up. In the last 3 weeks, my body has started to produce milk again because I think it can somehow sense that my baby is in trouble and it’s trying to help. I once again cried seeing that I was lactating again knowing it was useless because my girl doesnt know how to properly suck or use her mouth anymore. For the lack of self care I’ve given myself in the last two months, I am astounded that my body is producing milk, and it just shows what a mothers love/body would do to help their child even without instigation.

The nurses bring in a handful of syringes of medication every few hours to administer them through the feeding tube through her nose. The sight of those syringes makes me feel like shit. The worst part is knowing how weak I am being while my daughter is the one that is suffering. How selfish am I?

I've started to follow other special needs moms online and its been heartbreaking to see the struggles that so many parents go through with their childrens sicknesses. I’ve even started speaking to a few of them to feel a sense of community. When I open up and tell them our story, they always tell me how they can't imagine how heartbreaking it is to have a normal 10m old one day and then not the next. All the moms and dads I've spoken to have had diagnosis from the early days of birth. My baby remains undiagnosed, but a diagnosis wouldn't make a difference at this point anyway because the baby I knew is gone. Every single mom I've spoken to tells me I will find joy one day, but I find that really hard to believe because I will always have memories of what I lost. My child brings me to tears daily and I question my ability to adequately meet her needs.

I am physically and emotionally unavailable for anyone or anything but this situation that I am in. I feel like my friends/family who have “neurology typical” kids just cannot understand what I'm going through and I hope they never do. I find it so hard to talk to anyone that isn't a special needs mom because the pain cannot be shared through words with someone who hasn't been through this.. so what is the point of talking? I hope that changes one day and I can work on furthering the many amazing friendships that I've made in my almost 35 years of life. I know its not easy talking to someone that is going through what I am, but I know that true friends will stick with me and be there when I get in a better place mentally and I get through to the other side of all this smoke.

Ive had hundreds of people text me that I am not alone. And while I know that is true and so many people would help, it’s truly an isolating and lonely feeling here on “special needs island.” If you know a parent who has gone through something similar to me, where they ”lost” their child to a brain injury about a year into their life, please send them my way. I am trying so hard to find the right therapist to help me through this so that I can get better and be a better mom for my daughter and be a wife again to my husband. I’m a shell of a person right now and I really need help. Thank you in advance.