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.

thought purge.

now that we're not going to the dr constantly to check on this or that with finny and its not absolutely in our face all the time, I feel like things have kinda gotten back to normal.  its not on my every thought, and sometimes I even forget that theres anything wrong with him.  hes just such a sweet fun kid, he seems totally normal.

but then there are days like yesterday.  for some reason that nasty little part in my brain that makes me have sad, awful thoughts was working overtime...  I don't know why, things have been going well, he hasn't had any major falls, he hasn't seemed overly tired.  but maybe that IS why.  I let myself forget and some jerk part of me wanted me to remember, and it was definitely out to get me with a vengeance.

it felt like any random thought having nothing to do with his disease, or even finny himself brought my thinking back to him and how he wouldn't ever get to experience that, or that he wont be around for this...  its awful.  im pretty sure I was on the verge of tears no less than 13 times yesterday.  and no matter how down you feel, you gotta plaster that smile on your face...  it doesn't help anyone if youre sad all day.  not you, not your kids, no one.  you gotta be happy happy happy.

 

 

I don't even know what my point was in this post, I guess I just needed to ramble...  and sometimes the rambling helps get those thoughts outta there, and since ive already cried once today, before 6 am, apparently a thought purge was needed. 

 

I hate that my son is sick.

I hate that I feel like its my fault.

I hate that hes gonna miss out on so much.

I hate that we have to watch him get worse.

I hate duchenne.

 

BUT...

I love that little finny more than anything.

I love that we were blessed with him, I truly believe that no matter what, he was meant for us.

I love his sweet nature.

I love that he is on the go ALL THE TIME, he doesn't let anything slow him down.

I love his hugs so so much.

I love the relationship between ashey and finny.

I love that we have such a great support system.

 

ok I feel better now, so if you read this, don't go hugging me or giving me that look...  you know the one...  I just needed to vent.  now im gonna go get my boys dressed because I promised to take them to get donuts before school.  and those sweet little faces covered in frosting will definitely make me smile. 

 



happy unicorns.

so this weekend the sis and I took the boys out to eat...  we got there around 4ish, so lunch rush was well over and we still had a bit of time before the Saturday date night craziness started.

when we got there, the restaurant was almost empty, which is definitely a good thing when youre taking toddlers out.  anyway, my kids were actually being good, which is not necessarily always the case.  im not saying there were angels, because lets be honest, theyre still toddlers and toddlers are not known for their maturity and patience.

so the finkelstein is super happy and definitely expressing his happiness, in such ways as greeting everyone that walked into the section where we were sitting, laughing (probably a little too loudly), singing with his brother (again maybe too loudly) etc.  and while I know he was probably being too loud, it was also happy noises...  he wasn't screaming and crying, he wasn't having a temper tantrum, he wasn't throwing food everywhere, he was just really happy.

when were almost done with our dinner, a couple at a table near us is almost done as well, our waiter asks them if theyd like to see the desert menu and the woman says (maybe too loudly) that she cant stand that kid one more minute, clearly indicating my happy child. 

at first I was kinda embarrassed, I guess just my gut reaction, but then the more I thought about it, I kinda wanted to punch her in the face.  and I wish that I had said something to her...  who doesn't like to hear happy baby giggles?  I would totally understand her irritation if he had been having a fit or something, because I cant stand that either, and Im a mom of two toddlers.  but complaining about a happy kid?  and once I got angry I totally wanted to pull the special needs card just to make her feel like a jerk...  not that fins special needs really do anything to make him be a little extra loud, BUT my kid does deserve to be happy and to be able to express his happiness, and he shouldn't have to feel bad about it. 

so of course I started thinking and over thinking, and I just think its crazy that people expect things to be perfect and just the way they want them to be at all times.  life is not perfect.  things happen beyond your control and the way you react to them is what shapes how your day, your week, or even your life go.  she could've easily turned her head and just said hello to finny, his smile is infectious, she would've smiled back and then maybe she would've been a little more tolerant of his happy overzealousness.  you know, I could totally cop an attitude about the hand we were dealt with life and finnys disease, but what good would that do?  id be a grump, id be a bad mom and wife, and it would be my own fault that im not happy.  but sometimes, if you just force yourself to smile, things don't seem quite as bad.  im not saying im happy unicorns and optimistic rick all the time, but I do try.  and I will say that if life is some sort of competition, on Saturday I totally won. 

                                                                         totally won.

werk it.

clearly its been a slow couple months in the krade house since I haven't updated anything since august... 

in reality, weve been super busy and im just a slackery slacker pants that has not taken the time to write anything about my sweet boysicles.

medically everything has been good!  finny had his MRI last month and everything looks good, so unless something drastic happens I think well be MRI free for at least a couple years.  woohoo!  we go back to the MD clinic next month for a check up, but im not expecting any new news... 

all other parts of life have been crazy!  I got a job!  im teaching preschool where I enrolled ashey, finnys there too of course.  it was pretty rough in the beginning, as I had been preparing myself to be apart from ashe for 3 half days a week and thinking id have all this one on one time with the finkster...  so it was a big jump to being away from them both 5 half days a week!  but its really been awesome, finnys teachers are so great with him, everyone knows about his issues, and if they are ever worried about anything they just bring him straight to my classroom to check him out, I really cant think of a better situation...  aside from winning the lottery, getting to stay home with my boys again and hiring private tudors and then somehow also getting them to make friends while im around without seeming like the weirdest creep hover mom of life...  ha!

but the kids have adjusted really well, ashey is still super shy if any new adult comes around, but he loves his teachers, finny definitely is a fan of everyone in his class too, and I absolutely love that they quietly sing their little songs under their breath while theyre coloring or checking out a book or something... it. is. so. cute.

ok so theres my quick update before I have to start the morning rush of getting two toddlers dressed and ready and praying that they stay somewhat clean while im getting myself ready, and then hoping that we make it to school without either one wiping toothpaste, food, or boogs on my shirt.