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
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Sunday, October 17, 2010 10:08 PM, CDT
Traci and I have so much going on that at times we think to ourselves, are we doing what is right when it comes to raising our children? Are we spending the right amount of time with them explaining what is important in life and what things are simply trivial? Are we providing a faith filled environment all the time for our children though our own faith may be tested by Gabe’s journey? When our children ask why Gabe gets to do things we don’t let them do, like sit out during the middle of a T-ball game, are the answers we provide the right ones? Questions like where does Santa live, when can we get our elf back, what does the tooth fairy do with my used tooth, how big is the Easter bunny if it can carry all those large baskets and if it hops, how come none of the goodies inside the baskets fall out, all seem so easy to answer compared to the questions we are starting to get from our children regarding Gabe and this terrible disease! Well tonight the questions totally took a different direction. The usual simple questions about Gabe are starting to fall to the side as Turner is starting to hear things and notice things. No more comments like why can’t Gabe play football, why can’t he jump on the trampoline, why do we always have to carry him up the stairs, why does he go down the stairs on his bottom, why does he sleep in boots every night, why do you have to stretch him every night but not us…etc. Tonight was a milestone that I knew was coming but was not ready to address. Shame on me for not being ready for it but I can tell you, Traci handled it like a champ! She was helping Turner with his book report (of course it is due tomorrow) and out of the blue, Turner (our 9 year old) asked “is Gabe going to be in a wheel chair between the ages of 10 to 12?” For those of you that have followed our journey, does this sound familiar??? It should! Traci said that we are trying to find some help for Gabe and if we can find the right medicine for his muscles it may not happen, but there is a strong chance he may be between those ages. He said “Oh”. She asked where did you hear about this and he said that somebody on his football team said their dad said to pray for Gabe every night because he will most likely be in a wheelchair between 10 and 12 years old. He then asked “does Gabe know about the wheelchair?” Traci said no he does not and please do not ever share that with him. Turner said “I would never do that!” Traci asked, “How does that make you feel hearing that about Gabe?” At this moment Traci is holding back the tears and scared to death of the next response that is going to come out of our 9 year old’s mouth. His next comment is what prompted this post…Turner said “I just know that I’m going to be the one to push him!!” Traci is now crying and she said how will that make you feel Turner? Turner said “so proud mommy, I want all of my friends to see me pushing Gabe in his wheelchair!” WOW!!! How incredible is that comment from a 9 year old who is still trying to figure out how to be a 9 year old???!!! He took it as matter of fact and matter of fact he was going to be the one to push Gabe around anywhere he wants to go!!! I am more proud of him for these comments than for anything else he has done to date. I know that words probably do not describe this discussion accurately but she said if you could have seen the look on his face and how proud he looked when he said I will push Gabe anywhere he wants to go…priceless! The next question was a little concerning as we do not want Turner to hear about this being 100% fatal by as early as the teen years from anyone other than us. His next question was “Mom, what is going to happen when he is 15?” He also asked if they have anything yet to fix him. Traci did an incredible job answering this unanswerable question. She simply said we have a bunch of good things going on and hopefully he will be Ok at 15! At this moment and when Traci shared this with me, we realized that we have not lost focus on raising our children and they are incredible kids surrounded by incredible people! Not a week goes by when one of our kids doesn’t ask if they can donate their piggy banks to Hope for Gabe. I am so proud of Turner and even more proud of Traci for how she handled the situation! We must now hunker down and get ready for even tougher questions. We have to figure out a way to tell Turner the whole story about Gabe but must do it at the right time. I would die inside if Turner came through the door from school one day and said that someone at school said Gabe could die by the time he’s a teenager. He needs to hear it from us but I am not sure when the time is right. I know so many parents are trying to help their children understand what Gabe is going through and they should be so thankful for the lives they have and their abilities! Hopefully many kids are going to be better children and better adults for having Gabe in their lives! I know I am sure a better person…Gabe’s Daddy |
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