And I thought talking about the birds and the bees would be difficult…

This disease is slowly starting to consume our lives and is impacting all of our children at different levels.  Tonight Traci and I were doing our tag teaming process of putting the kids to bed.  When you are out numbered 4 to 2, you have to divide and conquer!  Well…to start the night off, Gabe goes potty and his urine is brown!!!  Brown is not good and means there is muscle damage that has taken place.  This is a result of him being way to over active.  Over the last few days he played 3 innings of a T-ball game, went to a Halloween party and jumped in the bounce house, climbed up and down stairs many times, and attended school where he was active.  He has got to do a better job understanding his limits and we need to do a better job forcing him to rest!  Well, tonight Traci was putting Addie to bed and was lying down with her as she said her prayers.  When she is done, Addie asks if Mommy can read a book to her and Traci stated that she was just too tired (and after we saw Gabe’s brown urine we were totally drained).  Addison then asked Mommy if she would do her a favor and stretch her like we do Gabe.  She said her legs hurt and she needs to be stretched.  Traci with tears in her eyes said Addie you don’t need to be stretched as there is nothing wrong with your muscles. She asked what is wrong with Gabe’s muscles (she is 5).  Traci with tears in her eyes said his muscles are hurting him and we are trying to find someone to fix his muscles.  She did not quite understand and said she still needed to be stretched.  Traci said that her muscles shouldn’t hurt and that meant she was perfect!  Addie jumped up and went to get Traci some tissues for her eyes.  I did not imagine a life where every time Gabe went to the bathroom we would have to jump up to see what color his urine is or asking my other children to make sure they see what color it is so we know if he has not been stressed too much.  It makes sense though because when Traci tried to stretch him last night he said it was hurting and started crying so he obviously over did it.  To all of those out there who say just let him be a little boy…you have no idea the gut-wrenching feeling when you see coca cola color urine coming out of your 5 year old child and knowing that this means he has over done it and damage has occurred with his muscles.  It makes it very difficult to sleep at night!  I do not know where this journey is going to lead us but I sure hope that it leads us to a cure!  My other children are really starting to ask more questions about Gabe and the disease.  They are also starting to ask why Gabe gets to do certain things or not have do to certain things that impact them.  It is a delicate balance and a difficult one!  My hope every night is that when I wake up in the morning, there is no more worrying about brown urine, no more explaining why Gabe needs to be stretched, no more answering difficult questions about death, wheel chairs, muscle issues, and no more DMD!  Gabe – you are my hero!  Gabe’s Daddy