One year

The anniversary of Seth's diagnosis was about two weeks ago...I meant to do some big profound post, but the only thing I could think of was, "it sucks."  Because really-that's all there is to it.  I try to stay positive and hopeful about new treatments coming down the line, but when I'm starting to see little signs of weakening and decline, it definitely jerks me out of the happy place.  If this medication doesn't get approved within the next six months to a year...he'll probably still benefit, but I just would like to start slowing things down right now. 

A strange thing-in the space of two days I met two families with older boys with DMD, one of which lives on our street.  I had heard that there was a new third grade teacher at Seth's school (not new, just moved from another one) who has a teenage son with DMD.  There is a family that moved in maybe two summers ago that I knew had a boy in a wheelchair, and after Seth's diagnosis, I wondered if he did have DMD, but didn't see him much.  I saw him last week and thought for sure he did, so later his mom was out and I went and talked to her and it's the new teacher!  She is a very positive person-she said that of course she gets mad and discouraged, but she just keeps telling her son that there is going to be a treatment, a cure, and he is going to get out of that chair!  I admire that-I don't know if I'd already have to feel like that, or if it will come later...I want to be positive.  But at the same time, I want to be a realist because at some point reality is going to slap you in the face no matter how positive you are...I guess it's all a matter of how you deal with the reality.  And I would never be one to think that somebody isn't dealing with it the *right* way, because everybody experiences it differently.

Ok, so then two days (or was it even the next day?) later I was with the kids at an ice cream place and a van pulled up and I could see that there was somebody in a wheelchair in there, and when I looked closer I saw another one and then I thought to myself, "no way."  But sure enough, the boys got out and I was pretty sure they had DMD too!  While the mom was putting the van back together, I went and talked to her (honestly, I would never do this normally-I don't generally go up to complete strangers!).  Her sons are 15 and 20, and she said the younger one was in a chair by 9, and the other one walked till he was 12-and he definitely looked better even though he was older.  She said Seth looked pretty good and that her younger son was already really weak by Seth's age, so I guess that's somewhat encouraging.  What WASN'T encouraging was what the older one said when he found out Seth had DMD.  He said, "I feel sorry for your son."  Okaaaay.  Nothing like putting it all out there, right?  Anyway, we didn't talk too terribly long, but she took my phone number, so hopefully she'll call.  They live in Hudsonville, which makes it even stranger that we were at the same place at the same time...perhaps coincidence, perhaps not. 

So.  That's my big one year post.  It has been a hard year, but at the same time you do get to a new normal and there are always every day things that need to be done, and the kids are still fun and frustrating at times and everything every other kid is, and life goes on, even when I just want to put the brakes on it for five seconds.

Adolescence

That's what the puppy book calls this stage:  "When you and your puppy reach the budding adolescent stage, you may feel like hiding in the closet......Your puppy won't listen or respond to known directions.  He bolts, chases, and nips at everything that moves.  He demands your attention and barks when he doesn't get his way.  He insists on being the center of attention every moment of every day."  It's like they are living in our house!  Spooky.  I'm glad I read that though, because I was starting to think that maybe his true personality was coming out and that he really WAS a butthead.  Now at least I know it's a phase and eventually it will pass.  If I don't pack him up in a box and ship him off somewhere first.