Just one more day

This popped up in my Facebook feed the other day and it brought tears to my eyes. It brought to the light a very known fear for me that was born the very same day I learned about Sophia's diagnosis. It has been kept deep inside my soul for the last 10 years but there hasn't been a single day that I don't think about it. When I saw this post I felt the need to blog about it and let it out.
From the day we saw in a routine ultrasound that something was up with the little girl we were expecting, I feared what would happened when I'm gone. When she was born I made the decision to live in the present and not worry about the future so I locked that fear in my heart. Eric, being the wonderful, responsible and smart provider for our family that he is he set up a trust and a will to make sure Sophia is taken care of financially when we are gone. That part of it is set and I know that a big step, while we were doing all the paperwork I kept my fears and the emotional part still locked inside me, I was focused on the practical part of the process, something that needed to get done and we did.  We work so hard to make sure Sophia has everything she needs, I keep looking for ways to help her reach her potential and I do my best to make her life as good as it can be... or do I? Am I doing enough?...
When I let myself think about it, I get so overwhelmed by sadness, panic and anxiety about how my baby's life would be when I'm not here to take care of her. My life is and has been for 10 years about being Sophia's mom, nurse, therapist, advocate, driver, cook and caregiver. Who is going to do all those things for her with at least half of the love, patience and dedication? Who is going change her diaper or take her to the toilet, wipe the drool from her face, feed her and bathe her? Are they going to understand her babbling and cute sounds? Is she going to know I'm not there? Will she be happy?...
When I saw this post by another special needs parent I realized I am not alone, I am not the only parent who fears about what they special needs child's future is going to be. I realized there is not much I can do but to wish for my daughter to have a long happy life with me by her side and yes, to wish that her time in this earth ends just one day sooner than mine.