Emmotional day.....

                 Yesterday started out an awesome day except for the part that Cayden was in some pain....We loaded up his wheelchair and off to school he went...at school he overcame many the obstacles in his way..such as pulling his chair up to the table to color. Lunch was a little more difficult...wore most of  his lunch than ate it.
                  Recess is when the day took a turn....he couldn't run or play...no more running from the girls...couldn't get out and play basketball or climb on the playground equipment. Several times he got stuck in the grass and had to get help getting out. When he returned to the classroom his teacher said he was teary eyed.
                 After school when I picked him up his arms were tired....his hip was still hurting and he felt he missed out on everything.....Cayden was mostly quiet the way home from school...he limped inside while I unloaded his chair...when I came in he was crying and upset...I said Bubba whats wrong? He said momma I can't do the stuff I want to do when I'm in that chair...and I can't do them when my leg hurts either..he said all the kids were staring at me and it was hard to even go to the bathroom.....I was at a loss for words...what do I say to him?...My heart was broken into a million little pieces....as I fought back the tears I finally said what would help you?...he said for me to be my little normal boy....I tried to explain to him the best I could that he isn't a normal little boy nor was he ever. I reminded him how we dealt with his kidneys and the extra things we had to do...like frequent the restroom..or be careful what he drank...he remembered and then I reminded him what we have to do when his asthma acts up....he has to have his nebulizer and sit down for a few...and then I went on to tell him that when his hip is hurting and he needs his chair we will figure out some other stuff for him to do instead of sitting on the playground watching the other kids play.....I try to remind myself as well as Cayden (in different words for him) that this is life altering, not life threatening.....but to Cayden it is his life...he thinks basically his life has ended....he is starting to give up on things that he can still do.....I think this is going to be a hard rough summer.....in the end of our conversation I hope Cayden seen that not everyone is the same and there really isn't any such thing as normal....I continue to pray every night to the lord to help us better understand this and how to deal with it......

Just an update.....

            Cayden got his wheelchair yesterday and the look on his face was priceless! He kept asking me questions about where he could go now...Can I go to the zoo now?......Can I practice in the house?.....How do I get down the stairs mom?...and then when he was out of questions with the biggest grin of all he looked at me and his dad and said Thank you..and I knew all the worrying, stress, phone call after phone and then the paperwork was all worth it!
             This weekend we are going to work on a ramp to get up the stairs so we aren't trying to lug him and the wheelchair off the porch!.......I am so proud of him for dealing with this disease with such a positive attitude!

Wheelchair........

               Today we got good news that insurance is going to pay 100% of Cayden's wheelchair, which comes as a big relief. We should be getting his wheelchair in the next couple of days.
                Cayden is upset that its not an electric wheelchair...he likes the idea of running unexpecting kids over in the halls of school! He said it could be camo so they wouldn't even see him coming!
                 The chair will be for an occasional use. He may go a week out of it and then three days in it....it is just for the really bad days.
                  This morning as we pulled up to school Cayden said "mom I can't climb those stairs" I said "why? Does your legs hurt?" He says "yea I just can't make it up them. My legs are really tired today"...I stopped a minute and took in the harsh reality that there are many mores times like this to come...I said "Bubba you tell momma what you want me to do to help you?" He stopped for a second and said I want you to help me get up those stairs. So with my pink eeyore pajama pants,blue and yellow shirt, pink slippers topped off by smeared make up and hair thrown up in a mess...I got out of the car walked around and told him alright son you take as long as you need to get up the stairs and I will help you. As I had explained many times before to him start up the stairs with the leg that isn't so sore....Very carefully he started up the stairs...with me by his side. It didn't take him long to get up them...and then he was ok, but the stress of those stairs really got to him and I was so proud of him that he was so determined to walk up the stairs that he refused to use the ramp!...days like this shouldn't be something that a 5 year old or any child for that matter should face....I do have to say the other parents at school and most of the teachers are very understanding and doesn't rush him!
              The rest of the day he played like a normal little boy...and this is what makes the disease so hard to understand....he can be sore and not want to walk part of the day...and then walk and TRY to run (eventhough he isn't supposed to) the rest of the day! I AM SO PROUD OF HIM AND CAN'T TELL HIM ENOUGH!