Emotional DayAugust 22, 2008 by Victoria Today was a difficult day. Nothing dramatic happened, thankfully. The aquarium was fine -- fun. It was just an emotionally difficult day for me. I couldn't sleep last night -- I couldn't stop thinking... And today my mind continued to race. Under that pretext, going to a family destination was probably not the best day for me. Perhaps it was thoughts of my mom -- I lost her to cancer 9 years ago yesterday. Perhaps it was seeing the children run around, squeal in delight, hug their parents -- all things Gwendolyn will never get to do. Perhaps it was the worry that such a big outing would be too much for Gwen to handle and the stress involved with getting us there -- suctioning every few minutes, all the machines, trying to listen for her subtle cues in a loud setting. It was probably a combination of all of them.
Days like today make me feel like this is torture. Losing a child is horrible enough, but watching her slowly waste away and being completely helpless to protect her -- when that is my job -- is agonizing. Gwendolyn is losing the ability to suck -- her pacifier has brought her great comfort , so seeing her struggle so much to keep it in her mouth is difficult. We prop it in place with her doll or blanket, but her suck is so weak now that even those no longer work well and she cries a sad, pitiful cry wanting that comfort.
I try to stay positive -- to focus on all she can do, but sometimes I just want to hold my baby without her choking...I just want to hold her. Bill and I go to sleep every night worried that this night may be the last time we kiss her. We wake up constantly worried that something has gone wrong. We will never get a reprieve from worry because, unfortunately, one day, and one day soon, something will happen -- a choke on her own saliva, a cold we couldn't keep from her, pneumonia...and it could come on a day that she is the picture of health. There is never a moment that goes by that we don't think -- this could be it. I know we are giving Gwendolyn the best life we know how to give her, but it is hard to live as if it is your last day -- every day. It is exhausting.
I adore my daughter. She has taught me more than I know I will ever get the chance to teach her. But, some days I don't want to be brave. I am strong for her, but when she is asleep, some days I just can't be brave any more.
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