change.

ok, so again...  I suck.  its been over a year since I posted, and yeah, I can promise to be better about posting, but lets be honest, unless I get real fired up about something, its probably not gonna happen.


we had therapy today, physical and occupational.  and for the most part finny loves therapy, of course pool therapy is his favorite, but he has fun with all three.  today was goal day.  if you have never gone through p/t before, it normally starts with goal making, long term and short term, and once you hit your long term goals, youre done.  so when he was a baby in therapy, his goal was to walk and once he started walking, we were done.  simple as that.  but that was then.


things are different now.  I never really thought about it before.  someone recently asked me how long we will continue with therapy, and honestly I really never thought about it, it seems strange now but it just never occurred to me that there might never be an end in sight...  I answered that we would probably go until he physically cant anymore.  and then I kinda got angry.  how unfair is this?  my kid is gonna keep going to therapy three times a week and never have the satisfaction of hearing 'way to go buddy, you worked so hard!  you can finally ____, now youre done!'  hes just gonna keep on trying and keep on working and things are only going to continually get harder for him.  it really sucks.


why is there no cure?  why do we not have hope?  I mean I can hope and pray that theres a cure before its too late, but why isn't there something, anything that I can hope to possibly work?  theres nothing out there that we can say maybe this will work, or, if we raise enough money we can try, or, if we get him diagnosed by this time then it might work. 


we. have. nothing.


and its not fair.


a duchenne family that uses 'shock tactics' to raise funds and awareness recently ran an ad that said 'would you donate to save Harrison from a slow and painful death?'  they ran two different ads, one with the picture of Harrison, their son with duchenne, and one with a picture of harrisons dog.  the ad featuring the dog was clicked on twice as often as the one with Harrison himself. 


i wish my son was a dog (if youd like to read more about it )


I know there are tons of charities out there and people can donate whatever they want to whoever they want, but why are people so much more willing to give money to animals than they are children?  our children are dying and there is no cure.  how are people not outraged?  why isn't duchenne more widely recognized? 


how do people not want to help our kids.  I can think of nothing worse as a parent than having to watch your child grow, learn to walk, learn to eat, write, run, only to have to watch them lose all of those abilities.  we will have to watch our children slowly die, and people have no idea. 


I started this post in my head and I was so sad, and I still am, I am so very sad.  but im also so angry.  its not fair.  and things need to change.