Monday, October 3, 2011

Stepping on my soap box...

The problem with being the photographer in the family, is that you're always behind the camera and it looks like your children don't have a mother. I actually prefer being behind the camera. My sister is definitely more photogenic than I am and for my entire life everyone has said, "oh Jesse, you're so beautiful, you look so good in pictures, you're so photogenic..." blah blah blah... Sorry Jess, I promise I'm not jealous. 

Every once in a while I have to demand that Walter take a picture of me with the kids. I promise, I read to them, I play with them, I cook with them, we run around the yard wouldn't know it though just by looking at pictures. 

Here are some very "flashy" pictures (don't worry, I have my clothes on, I just meant that I committed a camera crime and set it on Auto...gasp)...

Isaac is all about sticking out his tongue...

Isabella wanted to take a couple pictures...

For anyone who isn't my friend on Facebook (and should be) here are Isabella's latest and greatest quotes:

"Mommy, who were you talking to?"
"I was leaving a message for Sarah"
"Well, what were you sayin'"
"It was a message for Sarah, not for you."
"Well, just tell me what you were saying!"
"Isabella, it's none of your business!"
"Well, sometimes, Sarah is my business. Trust me."

"Isabella, why is this toilet paper wet?" " kinda just got that way."

"Isabella, I want to know why you don't wipe when you use the potty." "Well, then I have time to go play."

Isabella to Walter: "You're right, that's very tricky for your little child."

"Isabella, those shoes are too small. How many times do I have to tell you that?"
"Like, thirty times."

This week Isaac decided that food, Cheerios in particular, are not nearly as frightening as he previously thought, and actually managed to eat one with minimal gagging and choking and with very good recovery. A couple days later he changed his mind on the whole food thing, and sat in his high chair, with his mouth hanging open for fifteen minutes without swallowing the puree. Yep, he's stubborn. 

As a result of his very slow growth and the fact that his GI doctor was not impressed with the fluid intake progress we've made, Isaac is scheduled to have surgery to put a g-tube in place. We've been thinking about this and discussing it with his doctors for a very long time, so it doesn't come as a surprise and we actually feel very confident that this is what he needs. By no means will this be permanent. The goal is to get him to eat (happily) by mouth and hopefully, with tube feeds in conjunction to oral feeds, some of the pressure to get a certain number of ounces in him per day orally, will be lessened. This will give us an opportunity to spend more time working with finger foods and textured purees. 

My entire day is consumed with thinking about feeding Isaac. And if we're out of the house, he refuses to eat. And if he is having a crabby day, he refuses to eat. His arms are getting stronger, which I guess is a good thing, but he is very good at clamping them over his face so that we have a battle for just about every sip of milk. Thanks to the movie Toy Story, he'll drink relatively well. I think I've seen all three movies in fifteen minute segments about a hundred times. A few days ago Isabella was playing with some toys in the hall and said, "you saved our lives, we are eternally grateful." So yeah, she's seen the movies a lot too. 

I would like to step on a soap box for a moment and just say that there are a lot of things each of us takes for granted. I know for a fact that after a trip to a new hospital this morning, to meet with Dr. Crowe, a geneticist who has studied 9p deletions, I have taken for granted the efficiency and overall appearance of the Cleveland Clinic and University Hospitals. I definitely took for granted that I never had to spoon feed Isabella. And to this day I don't understand why parents torture themselves with spoon feeding when in most cases, it's completely unnecessary. Anyway, I've been thinking a lot lately about how a baby is born and eats, babbles, learns to sit, learns to stand, pulls to stand, sits from standing, etc...with very little instruction on our part. All of this just happens, and that's the way it's supposed to be. Now I know that it's not always that easy. I know that it takes a lot of work to get a baby to make sounds they're supposed to be making by eighteen months. And that to build muscle tone that isn't there, that is supposed to be there, takes a lot work. And all of this is so very exhausting. And it's definitely given me some new perspective on how all of these stages in development take place. Maybe we cheer louder now, when a milestone is met. I definitely get tears in my eyes, when Isaac walks along the couch, and when he ate a Cheerio, well, that was simply a miracle. We take for granted that our baby eats, sleeps, and poops. This means they thrive and that they are happy. When someone like Isaac abhors the most basic functions that keep him alive: eating, sleeping, pooping, well, it's tough, and I never thought I would be in this situation. I never thought I would be the parent of a child with special needs. But I am. And I'm proud to be Isaac's mom, and I know we'll be okay. I know that these years feel long but one day we'll look back and it won't seem so bad. I've been grieving that this is the way it is. I love my son, but this is not the way I wanted it to be for either one of us. That probably sounds really selfish, but it's the truth. So the next time you watch your toddler eat, or see them walk across the room without thinking, cheer them on, because it's pretty darn amazing.


  1. good post, you may want to talk to a professional photographer about getting some pictures done, gee if you only knew one...

  2. <3
    The last picture of Isaac and you is so sweet :)

    I loved this post. Watching you and Isaac work together is so amazing. I cried happy tears right along with you when you told me that he pulled to standing, and then that he took steps ~ I know how hard you've been working and it is paying off! Isaac is an awesome little man and he is blessed to have you as his mom.

  3. I can't imagine Isaac in better arms than yours.

    I didn't ever expect to care for a child besides my own as much as I do for Isaac. He's such a cool little man. I'm blessed to share in your joy and grief, albeit only at 0.01% of what you and Walter experience.

    Oh, and you and your sister are practically twins so stop this nonsense about not being photogenic!

  4. Fyi my chin is not photogenic :)