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
Today Fletcher had an appointment with his cardiologist, Dr. Razook. He had an echocardiogram and an EKG. And Fletcher's heart is doing great! Praise the Lord! For some of my new blogging friends, Fletcher has IHSS (Idiopathic Hypertrophic Subaortic Stenosis) and on November 10, 2005 when he was just ten months old he had open heart surgery to repair the stenosis. The surgery was a success and literally saved his life. There is always a chance that the stenosis could come back so he has regular echo's and EKG's. Fletcher was a toot today at his appointment and Dr. Razook asked him, 'do you treat all doctors like this?' and I said, 'yep, pretty much!' Anyway, when we go to the doctor an EMT takes us in a handicap accessible van, drops Fletcher, an RT and me off at the appointment and when we call him he comes back for us. Today we had a bit of a wait after our appointment so we waited in the lobby. As we were waiting two little girls about 8 and 10 years old noticed Fletcher. So over they came and just stood there and stared at him. This is, of course, very annoying and heart wrenching all at the same time. Soon their mother came over and said, 'See, it's a baby. Don't worry I'm sure it's mother is used to people staring.' Unfortunately I said nothing hoping they would just go away. But they didn't. I wish I would have said, 'I will NEVER get used to people staring at my sweet son!' One of the sad things about this few minutes in our day is that Fletcher was extremely mad and it didn't help the staring and the asking of a million questions that we're being thrown in our faces. I'm guessing that when people see Fletcher they are shocked, they don't have any idea of 'what happened to him' they are afraid maybe (of a two and a half year old?) I don't know. I don't know how I want them to act or ask or look. Sometimes I just want to scream and say he's a baby please quit staring at him, he's a person just like you with feelings. Stop staring! I DO want people to look beyond his skin, beyond the tubing and wires and ventilator and see him. He's amazing, he's smart, he's funny! That few minutes made me forget the good report we had just gotten from the doctor. That few minutes dashed a lot of my hopes and dreams of Fletcher having a normal life. Sometimes I imagine that Fletcher will be able to breathe on his own and that he'll come home to live with us, that he'll go to the same school with Maddie and make friends and that things will be normal for all of us. That few minutes crushed that dream today. It made me ask a lot of questions that I don't and probably won't have answers until the time is right. All evening I've been telling myself, to be in today and trust Fletcher to Jesus. Only the Lord knows the plans He has for Fletcher. I have to hang on to that and know that the Lord loves Fletcher even more than I do.
One more thing before I close, Fletcher WILL have eye surgery on Monday, September 17th at 7:45 am. We'd greatly appreciate your prayers. Fletcher had this same eye surgery on October 18, 2006 and that surgery wasn't successful please pray that it will be this time. Thanks so much!
Comments by: Anonymous
Don't worry about what other people think or say. Concentrate on the good things and know that Jesus (and his family) love him just as he is! As he gets older, (gets better and hopefully can shed some of his tubes and machines) he will probably "grow into" his looks. My nephew looked terrible when he was little and as he grew up and got bigger, alot of the other things become less noticeable. AND look at this as an opportunity to educate others and give them a lesson in acceptance. When my nephew was little, we would explain to people about his condition and that yes he looked different on the outside but on the inside he was a normal little boy. You will probably have to have this conversation over and over but it will get easier to say. You are an amazing mom and Fletcher is so lucky to have you!
Posted: 9/13/2007 9:56:00 PM
Comments by: Anonymous
NeeNee-Just as the Holy Spirit is your advocate and helps defend you from the world, YOU are Fletcher's advocate -- the amazing mom God has given him -- to defend him(and Maddie and Kayleigh) from the ways of the world! I know God will turn the events of this day into good and use it for His glory! While the world will not go away for now, God will strengthen you to stand against it and speak the truth so others will learn more. Fletcher is an amazing boy who has brought joy to so many and he will continue to do so as he grows and changes! I give thanks for the Burns family! Aimee
Posted: 9/13/2007 11:28:00 PM
Comments by: Anonymous
Oh My Goodness!Was that lady raised in a barn? Of course you're not used to people staring, he's your baby. I can't even imagine what would possess an adult to think that is normal behavior and to encourage it in her children. Some people should not be allowed out of the house. Fletcher is a gift from God. He's just an angel in disguise. You shouldn't have to deal with that kind of ignorance no matter who your child is. You are a wonderful mother and Fletcher is an amazing little boy. Anyone who can't see that is just missing out.
Posted: 9/14/2007 8:49:00 AM
Comments by: pyoung
Nee Nee, I am so sorry!
People can be so ignorant and cruel! They are the ones who are at a loss though, not you because they do not know FLETCHER...they are the ones missing out on this wonderful precious relationship you have with him since they can't look past the tubes and things...I pray that Jesus will heal your precious heart as he healed Fletcher's! I also pray that He will give you the words to use for people like that so that you will have peace when these situations arise again.
I love you sooo much and yes, you are right Jesus loves you and Fletcher MORE!!
"The Lord is faithful and He will strengthen and protect you from the evil one." 2 Thessalonians 3:3
Oh, Faithful God, make Denise strong in every way and protect her from every evil! Amen!
Posted: 9/14/2007 9:10:00 AM
Comments by: Kristi
you have endured so much and have been so strong! Thank you for being real and sharing your frustrations. God is with Fletcher and is making him so much more everyday! The great thing is that we have a God that we don't have to pretend with - an intimate relationship where we can be real. Don't give up on your dreams - God is faithful to complete a good work in Fletcher! Love you!
Posted: 9/14/2007 9:46:00 AM
Comments by: Mayhem And Miracles
I don't even know WHAT to commment about that mother's words. Used to questions? Maybe. Used to knowing that most people don't understand since they haven't walked in your shoes. O.K. But used to staring?! I'm glad to hear the surgery will go through on Monday and I'm hoping for wonderful results. Hope your weekend is full of family and smiles!
Posted: 9/14/2007 10:35:00 AM
Comments by: Anonymous
There are very ignorant people in this world and for every one of them, there are 10 people that see how wonderful and beautiful Fletcher is. Your little boy is just amazing to me. He has such a sweet smile, everytime I see a picture of him he melts my heart. I'm not in your shoes and I know that it's easier said than done, but God gave Fletcher to you. A little boy that has gone through more than most grown people could go through. So when you get those stares YOU JUST SMILE AND SAY THIS IS MY BEAUTIFUL SON. God Bless you and your family.
Posted: 9/14/2007 11:32:00 AM
Comments by: Anonymous
Many years ago, my baby daughter died, a day and a half old. People have said the most ignorant things to me about it: “Thank goodness you didn’t have time to become attached.” “It’s just as well; she would probably have had disabilities.” The worst were the folks who thought it appropriate to recount the stories of everyone they knew who did drugs or smoked during their pregnancies, yet had babies with perfect health.
Fortunately, I attended a support group. The support of friends and family is indispensable, but even more helpful is the support of people dealing with similar issues. We got together and, among other things, talked (and even laughed) about the dumb things people did and said. The people in my group knew what I was going through, in a very visceral way that nobody else could, even my mother. It eventually got to the point where, when someone said or did something awful, in the back of my mind, I would remember that I would be telling this story later to my group friends, and I would instantly feel better.
I feel sorry for those kids who stared at Fletcher. Their mother did them a disservice. They may grow up to be jerks, and there’s no support group for that.
Posted: 9/14/2007 12:32:00 PM
Comments by: Kristin Nicole
I can't believe that lady said that. You are so strong with everything that you have gone through with Fletcher, even if you don't feel strong. I know that God was standing right there with you when you were there and is feeling your pain with you. Just remember to let him be your strength....I know you know that but I also know it is hard. I love you and Fletcher is a beautiful creation! People are people and people can be very ignorant. Does that make sense? lol
Posted: 9/15/2007 11:47:00 PM
Comments by: Sniz
There's nothing left to say that all your commentors haven't said very eloquently already. I guess I will say what everyone else did, though, and tell you I'm so sorry and so happy for the journey the Lord is taking you on.
Posted: 9/17/2007 4:13:00 PM