Oh well, maybe next time...
The Burns grandchildren
Today, however, has been a tough day emotionally for me. It usually is the day after having Fletcher at home. Having him here is bittersweet. The sweet part is having him with us and the sense of normalcy that we feel. The bitter part comes when we have to take him back. He's always so happy to be back at TCC and that hurts my heart because TCC is not his home. I also face the reality that what we are doing is not normal, nothing about it seems right. Craig and I were exhausted yesterday, not because physically it's hard to have Fletcher home, emotionally it wears us out. When we sit and think about it, we realize we are traveling in a mini van with a critically ill, ventilator dependent baby. His life is literally in our hands. We, of course have been trained to take care of him and we do a great job of it. But when I think about it, it's overwhelming. It's our normal and I wish it wasn't. I always have a hard time taking Fletcher's crib down and taking the car seat out of the car. I'm not sure exactly what that does for me. I guess the biggest part of it is denial and trying to hold on to the normal. Even though having a crib in your living room isn't normal it was for us when he lived at home. Like the crib and the car seat I feel empty inside. I hate that he doesn't live at home. That he can't walk or talk. One day last week I took Maddie to see Fletcher and on the way home she said, 'I wish I had a brother that wasn't on oxygen.' My heart broke when she said that. I didn't know how to respond. I tried to bring out the positive things about Fletcher. I know life will go on and hopefully tomorrow will be a better day. But, if you think about would you pray for me?
2 comments:
I'm praying for you. I've been stalking your blog for a couple of months. My son has ENS, very mild case compared to sweet Fletcher and that is how I came to find your blog. You seem to be doing a wonderful job as a mother. I know it would be hard that Fletcher feels like TTC is home, but it must also make you feel good that he loves it there and that he is content. I truly believe that ENS children were sent to us from the good Lord. Hang in there girl. You and Fletcher inspire me daily.
Sweet Denise!
You are such a wonderful mother to your kids! Fletcher knows that and it is evident when he lights up when he sees you. God hears your heart and knows your hurt. Praying for you girl!
Love you, Kristi
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