Laura gives a much more personal account of all this HERE.
Laura called me as soon as she arrived at the feeding clinic on Thursday morning. Ira was not happy. The honeymoon was officially over. I’m glad we had two days of bliss to begin with but Ira’s no dummy. He realized in the car on Thursday morning that we were serious about this eating thing and he didn’t like it one bit. According to Laura, he cried the final fifteen minutes in the car. And for parents who aren’t used to hearing (like seriously hearing) their child cry, well, it was a big deal. And things didn’t necessarily get better throughout the day. Honeymoon periods are nice, aren’t they? But they eventually come to an end.
In related news, Laura sat down with the feeding clinic team on Thursday afternoon to talk about goals. The team was very frank with Laura and how they thought things would go down with Ira. According to the team, Ira’s got a long way to go. Therefore, it will be a long time before Ira is eating like typically developing children his age. With the help of the team realistic goals were set. As I can discern we’ve got two goals: One, hopefully we can get Ira to eat pureed foods by the end of the feeding camp. And, two, by eating I mean getting about an ounce of food into him at each meal. In other words, most of his nutrition will still come from tube feeding. This was the realistic wake-up call we needed to hear.
That news was a bit jarring and was hard to hear. We had our hopes up and so it was hard not to hear that news as bad news. On the other hand, that’s a step in the right direction so we’re ultimately happy about that. It’s just that we were hoping to shoot for the moon with this eating thing!
But to counter that news was the news that Ira got a spot in a school that Laura and I have been very impressed with. Ira will be going to a YAI school in Manhattan called Gramercy. We’re so excited about this because it’s a top-notch school with tons of services. And they seemed really excited about Ira fitting into their program.
Back to the feeding clinic, the commute is crazy. I’m wondering how some of you do that day in and day out. How do you do an hour commute one way every day? How? Doesn’t it suck the life right out of you? Is it worth living that far way from you job? I’ve heard people say things like I spend my time in the car winding down before going home to the family or I make use of that time listening to edifying radio programs or the silence in the car is good for me but every day? I’m not buying it. Someone enlighten me. Why are Americans commuting such long distances every day of their lives?
Welcome to the blog of Joe Hays, minister for Christ's Church for Brooklyn. We are a loving community of believers who seek to be the hands and feet of Christ, in service to our neighbors in Boerum Hill, Brooklyn and beyond.
Congrats on finding a school! YAI does alot of good things for people. One of my professors in graduate school was the executive director (or something like that) of YAI, and you could tell by the things he taught and advocated for in our class that they are continually working for the rights of people of all ages with disabilities of all kinds.
The commute will never be great, but there are ways to make it better. On a schedule, you get to know which cars fill up the fastest & where you can get a good seat (or the seat closest to where you’ll exit). And if you can get ‘into the zone’ (I never used headphones, but mp3 books are apparently perfect for commutes), you can always pleasure read or do your bills (like I did). Joe, I know how you’ve been meaning to ask Laura to teach you to knit…you could start a scarf as well. What better way to break the princess paradigm for your daughter!
When I first started teaching, I commuted from College Station to The Woodlands. I usually pulled out of my driveway around 6:45 and pulled into the parking lot between 7:45 and 8:00. In the afternoons, I would leave school around 3:30 and was easily home by 5. The only thing that bothered me about it was the gas. In the morning I was still waking up. I had time to listen to some music and get my thoughts toogether about what I was teaching that day. In the afternoon, it was like coming home and being able to just sit and relax for an hour. The difference, though, between my commute and other commutes is that I didn’t sit in any traffic. Traffic actually drives me bonkers. No traffic? I’m content.
Let the feeding clinic set their “realistic” goals if they want to. You guys know what to expect from Ira. You guys have witnessed some of the most amazing miracles with your beautiful little boy. They may know from their experience with other children but they never met Ira Hays before!
I agree with Carrie!!!
You have followed John’s story for a while now. Look how far he has come feeding, he is now chewing his food. However, he still cries when I put him in the high chair…
Take it one day at a time and have patience. You all will get there, your a strong family! Ira is a strong little man and has his own ways.
Keep living the dream and fightin the fight!
what I hear most often to justify a commute is that housing is impossible to find — which I think is crap. It is just that people want to have big new houses and to do that semi-afforadable, you do have to head for the burbs. But how many of our parents grew up in 1500 sq ft or less with several kids and turned out just fine? I know my dad did…..it’s all about the choices.
I’ve been praying daily for the right school for Ira. Every time I feel as if God’s not listening, He comes through with an amazing miracle. Lately they’ve all been about Ira!
Praise God.
Catch up on your listening and download some books/podcasts from iTunes. Maybe you can download some Sesame Street for Ira!
We’re a 30 minute rural commute. I would drive an hour to work so that I can live where I do. We don’t have a big new house. We have a very old house. Built in 1904. OLD. But if you were here, you wouldn’t even ask the question, “Why?”
We take so much for granted. Like swallowing. And crying. Lifting Ira up a little higher…
It’s a complicated question. For us the commuting has to do with the fact that we have a two-career marriage with two very specialized jobs. An hour each way for each person is doable but not fun. We have been doing 45 minutes each way for him and 30 minutes each way for her for 5 years now (not counting the 9 months I commuted back and forth to Atlanta every weekend, which was 3 1/2 hours one way PLUS an extra rent check). This particular mix works relatively well for us because he hates traffic but is driving against the traffic whereas she is willing to sit in traffic as long as the total time is less. Realistically, it is very unlikely we will ever find a situation where we will both have jobs in our current fields close enough so that we could get it down to just one commute. (Before we moved to this house, he was 5 minutes away from work but it took her an hour and a half each way, most days. This is why we moved here, to split the commute.) You do what you have to do. It’s not that we have to have a big house or a new house–we have remodeled two old houses, we just didn’t get to stay in either one of them.