Friday, January 3, 2014

Finish line in sight but still out of reach

It hasn't happened that often but every once in a while someone will tell me "Welcome Back! Congratulations! I'm so excited that he's eating now!"
I don't know what to say.
It feels like it's one of those times when someone says "Hi, how are you?" but what they really mean is just "Hi".

Simon is eating. It's true. He has not had a tube feeding for over a month now. He has taken his meds by mouth for weeks and the only thing we have put through his Mic-Key is his appetite stimulant which in the next week or so, we will likely drop as well.

He has not lost any weight and this coming Wednesday he will step on a scale and hopefully have put on a few ounces as well.

And, dear friends, this is fucking hard. I am really tired and frustrated and am just trying to make it until Monday when Simon goes back to school.

We haven't spent this much concentrated time together since before he turned three years old and back then he wasn't the lovely and engaged five year old that he is now. He was much more agreeable and oh yeah, HE NAPPED!!

This part is even harder than in the hospital. It's just Simon and I. Jaime is back at work and we're still sitting down to eat 6 times a day. Some times it's great and there's no issue. Other times it's a battle just to get to the table.

When Jaime is home it's so helpful to have support but it's still me driving and setting/sticking to some expectations for Simon.

He's slowly settling in to being home finally (I love the holidays but am really glad they're over), and on Monday we'll have another transition to a new school and schedule. Hopefully this one will be the last for several months.

We've only had a few days here and a few days there that have been consistent in terms of location and daily activities and that's exactly what the team at CHOC warned us against as we were leaving; to get back to one routine as quickly as possible. We were in one place for 4 days and then moved into a home that was still under construction, went to countless holiday gatherings and had meals out, alone, and with dozens of people. Given the time of year and the work being done on our house I think we did the best we could.

I think this time is the hardest yet. The promised land is not only in sight, it's so close that I can see the details of our new life.

It's just like our build-out at the house. Simon's room is just about finished. The walls are up and painted. The closets have doors and the lights work. He's played in it and has begun to call it his own. We just don't have a bed for him yet and the curtains haven't been hung so he can't really 'live' in it and has yet to spend the night.

Simon is eating and we haven't used the feeding tube BUT he cannot be left to his own devices (unlike most other five year olds - said no mom ever). I know that most 5 year olds need some prompting around caloric intake AND this is different. We have a bevy of protocols and strategies that I must keep in mind, along with awareness around stamina and skills that most other parents only take to Defcon 1,2 or 3 tops.  We run a tight ship and sometimes find ourselves at levels unheard of....except by other tubie parents workin' the wean.

Once again, I feel so self conscious around my parenting out in public. My higher self knows that this is the path we are on and it doesn't really matter what other people think. My lower self cannot stop the wondering what people are thinking as I'm practicing our eating strategies in public (or even better not practicing our strategies but instead hand feeding my five year old or holding his cup for him as he sips from the ever ubiquitous straw.)

I'm raw. I need a vacation. I don't feel focused enough on the larger world to drive a car or make simple decisions like what bad television to watch after the child has gone to sleep.

We are so close.

Simon will go back to school, I will go back to yoga and housekeeping. Simon will get to have his own big boy bed this weekend and at some point sleep in it. At some point in the next couple of months, he will consistently eat enough food to thrive with a minimal amount of prompting and push back. At some point it will feel normal and Jaime and I will plan an overnight away.

At some point.
That point is not now.

This time feels so crucial and important. It's time to really integrate this eating thing into his day to day.
It still feels so strange and wonderful to say that.

Eating. I'm talking about eating. Something most of us do several times a day without thinking.
I haven't done that in years. That's thousands of meals that I've shared with Simon where there is an intense focus and bites and calories counted down to the single digits.

The team said to relax. Not every meal is a therapeutic meal. It's true. In fact yesterday was downright pleasant with only minimal requests to take a bite here and finish some milk there. The day before and the day after, however, were not that. It's not every meal and that almost makes it more exhausting. In the course of a meal I can feel the shift and sometimes we can come right back from it and other times it becomes a struggle to just get one more bite in. The next meal is usually better since it involves greater hunger but it's all exhausting. It hasn't helped that we're still on the same schedule with just 1.5 to 2.5 hours in between meals.

We've had amazing support with family already wanting to step in and give breaks/learn the ropes. I feel incredibly supported and still quite alone. How much of it is real versus in my head.....almost doesn't matter. Almost.

I know a change is going to come and Monday brings a whole 'nother level of normalcy. Mostly I'm just having a pity party for myself and wanting you to come along.

P.S. Jaime's birthday is on Sunday January 5th and since I can't get it together to gift her with the most romantic gesture ever, if you're reading this, then send her some birthday wishes and/or maybe a winning lottery ticket.

First day at home ready to eat in the new dining room

MM Gets a check up

Marble Fun with Cousin Charlie

Yes, that Simon going to town on a caviar and sour cream omelet!

Mishpacha! (Family)


Ellen Abrams said...

Sending love and respect and wishes for ease and well being for all of you. And rest. And an overnight away. How about a massage. I wish it all for you and then some.

ps. Happy Birthday Jaime.

Next in Line said...

Oh Laura..."I don't feel focused enough on the larger world to drive a car or make simple decisions like what bad television to watch after the child has gone to sleep."

That is bone weary tired. What an awesome amazing and completely mind blowingly exhausting time.

You are almost at Monday and it is going to take some seriously bad tv shows picked by Jaime before you are recharged again.

You two are quite the parenting team. I am so inspired and learn from you.

We are also a two mom family. I used to blog, but fell of the wagon. Thanks for sharing your story.

Anonymous said...

Sending love and prayers....that sounds really, realy, really hard.

I have different issues with one of mine, but feel your pain about parenting in public. My response to outrageous behavior is not typical, and I have gotten the hoary stares...and it's hard...but I remind myself that I am his mom and I know best, and that the hoary stare people don't know the whole story, and if they did, they'd be applauding me. And they'd applaud you, too, if they knew.

There are more of us underrcover parents of kids with special needs than you think - at least some of the folks are secretly praying, and supporting you, because I bet they suspect there is more than meets the eye to a 5 year old and a sippy. ESPECIALLY if they are themselves parenting a kiddo possibly on the spectrum - those kids may "look typical" to everyone except to the parents of other special kids.

Sorry...rambling. You are a great mom, and here's some prayers that you can hang on. And Happy, happy birthday to Jamie.

Anonymous said...

I have just read this entire blog from start to finish. I want to jump on 880 and drive from San Jose to Oakland just to hug two amazing mothers and one of the cutest 5 1/2 year olds I've ever laid eyes on. I've laughed I've cried...I'm in awe.

As you've said...much love