I've been really sad lately. I don't know if it's because I've been anxious for these test results and thinking about Eve or what. Another possibility is that we're searching for houses in Massachusetts and the simple fact is that we need a bedroom and bathroom on the first floor. So I am constantly reminded of our situation. Plus, I can't help but look at her beautiful face and grieve for her. I grieve for what she cannot do and will not achieve. For what she misses out on. I have to tell you there is a lot of guilt associated with being the parent of a child with a life limiting disease. Every time I lose patience and every time I am frustrated with what I assume is probably typical 3 year old behavior, I feel guilty. That I should be holding tightly to every moment -good or bad. And the worst is being around typical kids her age. I found out that one of the little kids at daycare is just 2 weeks older than her. God, it's hard to watch him run. I'm so jealous of his mom when she picks him up from daycare. I want to be able to ask my child what she did today.
Anyhow, this is the reality of my life. I try not to let this out often, but sometimes I just need to vent and have a good pity party. Mission accomplished. I am lucky to have the friends and family that I do. Thank you all very much for your prayers and support. I'll go ask Jim to make me laugh now.
2 comments:
You have done exactly what you should do. You cannot keep it in (as Cat Stevens/Yusef once sang) - You've got to let it out. It is important to let it out, and thoroughly natural for you to feel guilty/jealous/mad/all those things. it is a truly difficult thing that you are doing, and only natural that you should resent it all - mostly because you resent the fact that Eve is missing so much. Know that, however, she is gaining and grasping so much - just look at the little video you posted - what a fantastic moment for you guys and for her. Words are not enough, but we love you all, and hang in there! MWAH!
Sharon, you show SO much grace and strength in how you shoulder this burden. You are an AWESOME mom and I know that Eve feels safe and secure and loved. I myself struggle w/ limit setting w/ my kids (despite what I KNOW about their importance) so I'm sure that's even more of a struggle for you. Just know that you have a lot of people who care, and who are sending you love and support. You guys are amazing and we are all so blessed to know all three of you -- Eve has an amazing spirit and joy that she just radiates. Thank you for sharing your story and journey with us. Love love love, Janet
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