My daughter has been in the hospital for a month. I have only left the hospital once to go to lunch with my husband. Many people have offered to come and stay with my daughter so I could go home, and I know why they are. I just can't bring myself to do it. You see, part of being a caregiver (and mom) is an image ability to advocate for your child. I know her best, and it's very hard for me to trust that anyone else would advocate as well as me in my absense. I have a hard time trusting people because of past trauma and experiences during my daughter's journey with Alexander disease.
I promise that no amount of asking will change my mind. I thrive and cope when I'm able to advocate. It's what I was born to do. Building relationships with medical staff has helped them to understand what our goals are for Jordyn and has helped them to better meet Jordyn's needs.
If I leave, I risk missing an opportunity to advocate and make sure my daughter is well taken care of. Small details get forgotten, so I often have to remind nurses daily of those minor details. Some things aren't communicated from one shift to the next and everyone has a different way of doing things. I know that if I left to get a break, I wouldn't actually rest because my heart and mind would be with my daughter.
When people ask how they can help, I don't know how to respond because aside from visiting us to keep me company and bringing me snacks, comfort items, and toiletries, I have no other needs than to be with my daughter.
It doesn't mean, of course, that my heart doesn't ache for my husband and my infant son. I miss them more than words can express, but I know this is where I need to be right now. It's extremely difficult to be separated for such a long time, but we'll get through it and it will only bring us all closer when we finally get to reunite under one roof.
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