1,000 words.

back in November the hubs and I took the kradelets to florida to visit nans (the hubs mom).  before we left, I scheduled to have a photographer do some family shots at this beautiful park nearby.


alison stalvey met us on an unseasonably cold day in florida and took some truly awesome pics of my kiddos.  and while I love all of them because who wouldn't, my kids are adorable, there are some that I know I will absolutely cherish forever.


we took a few posed pics just to make sure we had a few that the entire family was in but for the most part, Alison chased my kids around and got some really fun action shots.  at one point im standing next to my mother in law watching the boys run and play in the leaves and I look over to her and realize shes thinking the same thing I am.  Alison was taking pictures of finny running. 


we both start getting emotional and after explaining to Alison that one day finny wont be able to run, or walk, we all stood there getting teary and blaming it on the wind.  and she continued to take some awesome pictures of my finny running while he still can.

my beautiful boy.

i cant.

the normal response when a parent hears their child say 'I cant,' is to say 'yes, you can' or 'just try one more time.' 


its very sad to have to hold back...


I had the two littles with me at the store the other day, of course both are in the cart.  were playing around in the store, actin a fool...  finny tells me he wants me to run and I laughingly reply 'no, YOU run...'  all the fun, carefree happiness leaves his face, he hangs his head slightly and quietly says 'I cant run, ill fall down.'


instant sadness. 


all you want to do as a parent is encourage your child to anything and everything they want, we are their biggest cheerleaders.  so how do you respond when you know theyre right?

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.

the most awesome effing wheelchair.

I have to write about something that really bothers me...  not like im thinking about it everyday, all the time and im just angry constantly, but when it does come up, I kinda want to punch people.


I really hate when people say things aren't going to happen. 


for instance, with finnys dmd, he will absolutely be in a wheelchair one day, there are no treatments available and that is just the natural progression of the disease.  so as a mother of a child with such an awful diagnosis, I have to embrace it, I need to be aware and accept whats going to happen, if I don't, then everytime something does happen, it will be devastation all over again.  so when we first found out he had it and we were explaining to family and friends what it was and what would happen and people say 'oh, he wont be in a wheelchair,' it makes me want to punch them in their stupid face.  and I know that most of the time theyre just trying to say comforting things, or theyre trying to make an awkward conversation a little less awkward, but it makes me feel that they feel that I have no hope or optimism in my sons fate. 


I actually had one person tell me that if I had enough faith in the lord that my son would be ok.  now im not saying that I don't pray for a cure every night, and that I don't pray that my son will be saved from this horrible disease daily, because I do.  but for someone to tell me that if im good enough finny will be saved is kinda like saying that if he isn't, that I didn't pray hard enough, or have enough faith. 


it just really bothers me that people can so casually say that things are or aren't going to happen...  of course its so easy for you to say, 'no, he wont be in a wheelchair,' because its not your reality.  your son isn't the one affected.  to protect my own sanity I need to acknowledge what will happen and your simple dismissal of my concerns truly makes me want to hit you.  instead of saying he wont be in a wheelchair, say 'itll be the most awesome effing wheelchair any kid could ever have.' 

tipsy? maybe...

ok, so im pretty sure ive never written a blog post when I was slightly just a teeny bit tipsy...  but theres a first for everything, right?  ok...  im on my second glass of wine, but its been an emotional day and I feel like alcohol just affects you more when youre already emotional.  its like your regular barriers of whats appropriate to talk about just kinda fade away and you can talk about whatever uncomfortable or awkward thing you feel like talking about and you don't care who feels bad about it...    apparently, im a jerk drunk.  (im not really drunk...  maybe a tiny teeny bit) 

so if any of you are my facebook friends, then you may have noticed that the candle profile picture is back, and when its back it means theres been another death in our duchenne family.  and although I may have never physically met this family, there is still such a connection...  you already have such  a deep connection.  I don't think I know any other person in my 'real life' that has a child with a terminal illness...  and knowing something like that definitely connects you to someone else that knows something as terrible as this.  it is an awful thing to know.  I truly do not wish it on anyone...  back to the point, a 10 year old boy died today due to respiratory failure because he had the flu.  the flu.

 his poor little lungs weren't strong enough to handle the flu.  that is so scary.  it makes me question everything.  I want my son to enjoy everything he can in the time that he has here, but at the same time, I am now questioning my decision to let him go to the Christmas parade last weekend in the cold, and letting him play outside in the snow today...  just 20 minutes outside and he was exhausted.  all that gear to keep him warm made his muscles work twice as hard just to move, if he fell down he couldn't even get up on his own...

so whats more important?  letting him have as much fun as possible while he can, even though it might be shortening his time in some way, or protecting him to the max to keep him here as long as possible?  its such a tight rope walk...  you need to stay balanced...  you protect a little too much, you feel bad and need to correct by leaning toward the other side, let him do something that you maybe regret later, correct again by keeping him from something else.  I hate this.  I hate having to over analyze everything I do, everything I let him do... 

I realize Im rambling...  it happens when im upset.  I try really hard to stay upbeat, but sad news like the news we heard today just makes it so hard.  10 years is far too short a life to live...  im sure his mother and father are grateful for every moment of it, but im sure they also feel cheated...  shortchanged.  its not fair.  not that I wish I could trade situations with anyone, I would never trade one single moment ive had with finny, but I would do absolutely anything else to change our situation.  I would do anything to make him healthy. 

hug your kids.  and even if they've been absolutely crazy on this second snow day and youre ready to pull your hair out and send them back to school, give them a little extra love that 10 year old Nicholas Williams' parents cant give their son tonight... 

Nicholas...

sorry for the tipsy, depresso rant...  just needs to happen sometimes.  what else is the internet for?  ;)

wishful thinking.

update time:

since my procrastination and forgetful self has not updated and we have visited both the MDA clinic and the genetics dept again at Childrens, I will now enlighten you all with results of the previously mentioned appointments.

MDA clinic went well..  basically they check him out and as long as hes not declining, that's good.  I know that sounds awful, but that's all we got for now, no cure = keep on keepin on until something bad happens.  I am in the process of making a ton of follow up appts with cardiology (we see next week), bevhavioral development (we see in January), and neurology (still no appt, but our fantastic geneticist was going to put in a call last night, so I expect to hear from them today...  that man has got pull with just about everyone).  still no orthotics which is awesome since my baby man is not a fan of anything on his feet, and no physical therapy for now.  I am supposed to take him back in for an evaluation soon, so well see...

Genetics also went really well.  our dr is the best, and feels that finley is doing really well and reinforced that if he didn't know anything was wrong with him that he would think fink is a normal little boy.  we basically went over all the history of everything that's ever happened ever...  ugh, that's what it feels like anyway, if you could see my childs medical records, you would think he is an 87 year old man...  it is far thicker than any 2 year olds medical file should be.  we talked about possibly doing some more genetic testing to find out more about his microcephaly but since hes cognitively doing really well, our dr doesn't think that we need to necessarily to do more testing at the moment, if something changes, or one of our other one million specialists pushes it, then we can always come back, but for now were gonna let my little finny be normal for a minute.  no more MRI's or blood work...  as long as our upcoming three appts don't request it.

yesterday we also plotted all of finnys growth out on his chart so we could see how hes doing compared to previous visits, and the growth curve for his head measurements is actually going up!  most kids I guess start to even out right about now and stay on the same track, finnys is movin on up, which is awesome.  and in an effort to convince myself that finny is more normal than he seems medically, im thinking what if some higher power gave finny his giant birthmark and his tiny little head to force me to take him to all of these specialists...  I mean, that's the only reason we got referred to genetics at all, if we hadn't been, we still wouldnt know that he has duchenne.  I guess maybe we would've because im a crazy person, but I think it would've been a lot harder for me to convince anyone that something was wrong.  so now that we have the DMD diagnosis, his little head is gonna grow, get out of that microcephaly range and it can be one thing to cross of the list.  wishful thinking.

ok, so that's it for now.  I gotta get my littles up and ready for school...

but a little cuteness for your morning...  dr. finny

one request.

I have a friend in the UK, her son also has duchenne.  he's older than finny, so they have a lot more to worry about right now than we do.  she recently wrote that they got some alarming news about his heart, and for those of you that don't know, heart conditions with DMD boys tend to be the reason they don't live as long as they could...  so any mention of a heart condition or problem definitely freaks a DMD parent out.

anyway, im trying to write something encouraging to her, I tell her that shes doing the best that she can for her son and that's all you can do...  and literally, that's ALL you can do.  theres nothing else.  I wanted to write 'itll get better soon,' 'keep up the faith and things will start to look up,' but you cant say any of that to a DMD parent, because things will not get better soon, and they wont start to look up.  in fact, things will only get worse.  as a parent of a child with duchenne, you will watch your child deteriorate right before your eyes and there is NOTHING you can do about it.

this isn't a 'pity me' post.  this is a request.  if youre reading this, you know us or you know someone else with duchenne and you stumbled upon my blog with its hundreds of duchenne related tags.  Either way, im pretty sure you are connected to DMD in some way. 

my request is this:  tell someone today about duchenne.  you can show them this video parent project muscular dystrophy vid or you can send them to my blog, or just tell them that there is a rare fatal disease out there taking the lives of young boys and theres still no cure.  we need more awareness.  we need a cure.