I am so thankful today.
I was not yesterday. Yesterday I felt sorry for myself and for Jackson and all he has to go through. I was angry and depressed all day. I wanted nothing more to just crawl back into bed and not face the day or the blisters or the diaper changes that revealed my sons raw hiney. I just hated everything and even said out loud several time "I HATE EB!!!!!!!!!!" I really do hate it but what gives me the right to feel sorry for me???
Around 4 yesterday afternoon while I was lying on the couch feeling sorry for myself I decided that was it. I got up and told Jason "I guess I need to snap out of it and stop feeling so damn sorry for myself." He just smiled at me. He knew I was going to realize that eventually and just let me come to it on my own. Some days we just move on like normal and some days I need that slap!
Today I am so thankful for everything in my life. Not just the normal stuff like my husband, my kids, our health and our jobs. I am really truly thankful for things like the ability to hug and hold Jackson, my ability to dress him in normal clothing, put him in a car seat, and even just to feed him. I am just so thankful for the little things that we get to enjoy with Jackson. Even though EB really sucks no matter the type or the severity,at least we have some things to be thankful for. Do we have to be super careful? Yes, but at least WE CAN do some things. Some EB babies are covered from head to toe with bandages and they wake up and go to bed in pain. Hugs, clothes and food are all things those babies hope for.
Although Jackson's wounds make me sad everyday I just realized that I have to stop feeling sorry for me. Really how is feeling sorry for me going to do any good? How is it going to do Jackson any good? It's not. Not at all. Of course I can be sad for Jackson sometimes but not to the point where it is going to slow him down. From the looks of it, this kid is not going to take EB lying down. I am sure he will have his days where he screams "I HATE EB!" just like his mommy BUT I bet he laughs at himself when he is done. That is just who he is. I can tell already. I am so thankful for that!!!!!
A BIG thanks to Courtney for helping me to realize that we have so much to be thankful for. Courtney is an awesome mother and I just pray that one day I have the same strength and faith that she does. The way she carries on her life with her amazing son Tripp is a true inspiration. To make a long story short, Tripp has junctional EB and has been having a rough time lately. Please say a prayer for Courtney, her husband Randy and Tripp. I know I do, everyday.
1 comment:
My Heart aches for Jackson, you, Jason and his brother and sisters. I keep trying to think of something we can do to help. All I seem to come up with is Prayer for all of you. I keep praying that God will help me and others find a way to help make Doctors, and the Public more knowlegable about EB and that as a result there will be more Research and a Cure found. We do pray for each of you daily and you are also on our Prayer list at Church. We will also add your friend and her family. I know you have a hard time, but GOD knew what he was doing when he gave Jackson to such Wonderful, loving and caring parents. HE will Always be there with you. GOD's Blessing for all of you. Love, Gran Gran and Papa Frank
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