Burns Family Blog
Fletcher's mother sent out e-mail updates to our friends and
family in order to keep everyone up to date on what's happening.
On January 20, 2007 she started a Blog.
Here is a backup copy of that Blog.
Last Updated: 11/29/2007
Thanks for praying that we would have a sweet, safe and uneventful time with Fletcher. We had a great time. We did not take Fletcher to church because on Friday he had thick nasal secretions and I think he has an ear infection brewing. I didn't want to expose him to anymore germs than need be. We picked up Fletcher after church and headed home. My mom and Craig's sister's family and his parents joined us for lunch. On Saturday I made chicken and beef enchiladas, corn and black bean salsa and sopapilla cheese cake. Preparing it a day ahead of time allowed me to be able to throw it in the oven and enjoy my family. The kids got me a precious coffee cup planter. I can't wait to get some flowers and put it on the patio. Kayleigh is now at the age where she is writing her own thoughts on cards. She wrote, I love you with my whole heart. That choked me up, it was so sweet. Maddie made me a frame that said I love you to pieces and it had puzzle pieces glued all around it. Craig was able to get Fletcher to sign a card for me and that's when the tears began to flow. I am so grateful for my family. I truly have incredible children. And a wonderful husband. We tried to get a picture of me with Kayleigh, Maddie and Fletcher but that boy just would not cooperate! We did get one shot of him smiling with his sisters and cousins so that was good. All in all it was a nice Mother's Day.
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?
Comments by: oda41143 Missy
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.
Posted: 5/14/2008 3:20:00 PM
Comments by: Kristi
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
Posted: 5/15/2008 3:25:00 PM