Nothing is normal


I’m tired. Tried of pretending my daughter is “normal” and all these random weird things are “normal” newborn behaviors. Tired of well meaning friends telling me they “don’t believe the reports” or “the doctors are wrong” or “God is greater”. Yes, I know that our God is perfectly capable of wiping a tumor out of my daughter’s brain. But I cannot deny that she has been given a terminal diagnosis, before she was born, before she even had a chance to live. That the neurosurgeon looked at my husband and I and said there was nothing she can do. Nothing!? She, with her gifted hands and years training, gave me her professional opinion which was take her home and essentially love her until she dies. I can’t deny that every week we have our hospice nurse come check in on my newborn baby girl. Hospice!? Hospice should never be a part of newborn baby care. Our pediatrician told us there’s no need to vaccinate her, no need to come for the plethora of newborn appts. Because most likely, she will not live long enough that a vaccine is going to matter. That where she falls on the growth charts aren’t important. These are all facts. Facts that I live with and encounter every day. I’m afraid to sleep, waking up means a brief period of panic while I make sure she’s still alive. Because I know one day, I’ll wake up and my precious Abby won’t be laying next to me making sweet baby noises in her sleep. I know God can heal, I know He is good, but I don’t know if He will heal my baby. And I just want people to acknowledge that my child might be dying. That she has a brain tumor. That this absolutely sucks. I don’t want to hear that God can heal her. I want someone to look at me and ask me how I’m going to live through this. And I’ll look back and say I just don’t know. I don’t know if I can. And then maybe I’ll cry. Maybe I’ll stop pretending too.


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