games and painting...

My dad rarely goes shopping and usually even grocery shopping is out of the question. So it was a happy surprise when I learned that he went to Heinens and chose my cake decoration: Sierra, Mother of the year!  I don't always feel like "mother of the year" but it's definitely been a hard year, full of learning and coming to grips with what our present and also our future holds for our family and specifically, for Isaac. 

p.s. My parents gave me that gray sweater for my birthday. I said I was going to wear it every day this week...don't worry, I changed my mind. 

Could Isaac and Isabella look any weirder? Look alive, you two!

I love to play games, but after you have kids, games go out the window. Bananagrams is one that I have managed to play with Isabella because I just give her a pile of letters and then I work on my own crossword. Jesse and Josh weren't so accustomed to playing this game with Isabella and it was probably the most comical game of Bananagrams ever, since Isabella insisted on sounding out every letter. So we randomly heard: buh buh buh B! ssss sssssss ssss S! ooooo oooo oooo O!  I won the game. Just in case you wanted to know.

I promised Isabella we would play at home...

Obviously she had to wear her Christmas dress two days in a row. I didn't care enough to battle it out. Especially since I met Sarah at the library two days in a row and later realized I'd worn the same exact outfit both days.

A friend from church who also takes her son to the same physical therapy office, and who has listened to me cry as I've expressed how much our life has been changed by Isaac, recommended a really wonderful book: Unexpected Journey: When Special Needs Changes Our Course by Joe and Cindi Ferrini. I just got the book this week and can't stop reading it (even Walter is reading it). It's an amazing confirmation for everything we've been feeling and thinking.

"No one would ever love him the way we do, but in my "real world" I was panicking. I was afraid. I doubted my ability to go the distance with a son who was retarded, mentally handicapped, or developmentally disabled--whatever word was currently in vogue." I know that we can go the distance with Isaac, but sometimes it so exhausting. And honestly, we have it a lot better than other people I know. His health problems are manageable and though next week he will have his fourth surgery, I know someone who's son is on his twelfth surgery. So yes, even though this is not the way I want it to be, we are blessed, regardless of this situation.

The other day I met a friend for coffee and she's been helping me with Isaac and offering support and ideas since she works with children who have autism and has also worked with children who have other developmental delays. I told her that things are going really well and that I think Isaac is making a lot of progress, but it's still so hard for us to see kids who are younger than Isaac, passing him up. I don't think it will get easier, but she did say that it's good for Isaac to be around "typically developing" kids and it's also good for me because it's easy to become complacent in the present situation and just think, "oh, we'll never get there or, what's the point in trying...etc". But she said that we have to remember that we will get there, it will just take more work and more time.

I will admit, I think I overestimated when I said that would be walking by Christmas. I'm just going to change that to by the time he's two and a half or three, he will be taking forward steps. For now, we're really excited and happy with the side stepping in both directions and that fact that at times he is sitting up straighter and at nineteen months, he finally learned how to roll over!

Isaac has a multitude of appointments this month. In fact, he has at least three appointments every week during the month of December and at this point, I'm avoiding January. Actually, I'm dreading January. It feels like we just caught up on medical bills and now our deductible will start all over again. I think I'll avoid celebrating New Years' Eve. The good news: I recently found out that insurance may cover othodonture for kids with craniosynostosis....AWESOME!!! Especially since Isaac will need some crazy intense mouth work.

Look who's getting stronger (and taller and maybe even gaining some weight)!

Stella, please, make yourself comfortable...

Mandatory princess tea party...

Painting ornaments. Isaac's method was, "less is more" (his bird didn't end up with much more paint on it than that)...

Fine motor skills? Not a problem. Right on track!

And so it begins: "Mommy, when  I grow up, I want to be a mommy, and I will never ever, ever, EVER, make rules." What she doesn't know, is how few rules we have compared to other people.