Wednesday, November 3, 2010


Sometimes when I'm feeling really down and defeated, I go back through my own blog and look where we were a year ago.. or two.
Tonight I was looking for an old post (which I never found, btw) and was reading through some of my NICU days posts. I wish I could say they made me feel better. For once, they didn't.

What I found myself thinking was "man, that sucked." I was also surprised at how upbeat and energetic so many of my posts sounded. I didn't feel that way at all. But that's a story for another day. Today, I just kept thinking how I thought our eating woes would be over once he learned how. How naive, I was.

It's really amazing what a few days of poor eating can do to my psyche. Robbie moves along as energetic as always; a little crankier perhaps, but never tired. Instead it as though he is drawing the energy he needs from me, leaving me exhausted and broken.

It isn't just the eating. There are other things. Some family stuff that has too much backstory to explain, some work stuff that sound trivial when written out but adds to my anxiety level nonetheless. Yesterday Robbie bit me in the face. He was angry because I was singing along with the Backyardigans (he hates that) and his only solution was to lash out. Unfortunately for both of us, my face was the closest thing to his teeth.

It surprised me how much it upset me. I mean, yes, it physically stung for a while. He didn't break the skin but he did leave a mark. That, however, was the least of it. After he'd gone to bed (with a very sullen bedtime routine), I sat in the quiet and cried. Biting is such a typical 2 year old thing to do. Certainly for a 2 year old with a speech delay that keeps him from expressing himself with words. But it felt like pretty much the crappiest milestone ever. Biting is so.... so aggressive. How could my sweet little boy bite me?

His daycare teacher was unsurprised this morning. She thinks he got it from two kids in his class who "are biters." That was a little comforting, but also worrisome. I don't want him to be bitten nor do I want him to bite anyone. I'm hoping that improved communication skills will help. His speech is improving quite a lot the last 2 weeks. We've gone from maybe 40 words to a lot of parroting and spontaneous words. Tonight he pointed to me and pronounced me "Mama!" Man, that felt good.

I wish I could say it made up for the last 4 days of crap, but it didn't. I know it will pass. A good night's sleep would do me a world of good. But I'm writing this from my bed- my brain too swirled with thoughts to settle down.

All night long I ponder and research. I mentally calculate the day's calories. I double check product labels to see which crackers have the most calories. I triple check to make sure he hasn't been eating anything with hidden corn in it, wondering if that could cause the eating slow down. I wish for the billionth time that he could just tell me what he wants to eat. I sneak into his room and watch him sleep, his even breathing and peaceful face reassuring that he is okay for now.

I was reminded today of a time back in the hospital when my favorite neonatologist told me that he wished he had a crystal ball. I might not like what he saw in it, but I would be okay. He might tell me that Robbie would have 4 infections and go home a month after his due date, but after I was upset, I would accept it and go forward. He was so right. I feel that way even now.

If I had a crystal ball. If I could look ahead and see Robbie at 5 or 15 growing and healthy and happy, even if I also had to see ages 2 and 3 and 4 or even 12 & 13 of him underweight and still battling at every meal, at least I could mentally prepare myself for that journey. But there are no crystal balls in life. You would think by now I'd accept that.

I think most days I do okay. But days like today, I'm just tired. I just want him to eat and grow. I don't want to know the entire chemical composition of a miniature Kit Kat bar. I don't want fret about undelivered medical supplies or if the bruise on his back is from a normal play or if maybe it's a sign that he's anemic. I don't want to have to explain a second belly button to children or wonder if the mom at the next table is judging me because my kid is eating Raisinettes for dinner.Sometimes, it all just gets to be too much.

Becky emailed earlier to ask how I was doing. My reply was as simple as I could state it.

Burned out.


Sarah said...

Wow. Your life is nearly identical to mine. I was going to say a bunch of wonderfully supportive things but it's 4 a.m. I can only say I understand, and I wish you a much better tomorrow.

Erin said...

Two things, I am a LOOOONG time reader hardly ever comment though (I sent some blankets and stuff when you were collecting for the NICU). One you are an AMAZING woman and mom. I used your story as a reference for our preterm baby and everyone was amazed by you and our strength and how positive you were (I referenced some of your posts). Also I am understanding the frustration of a toddler that doesn't talk. I was so worried about his speech EVERYONE told me not to worry but I did so I called our state's early intervention team and found out his expressive language is at 11 months (he is 20 months) what a blow but I thought of you and how positive you try and be and that is what I am trying to do, so thank you.

Trish said...

erin, yes! I remember you donating. Thank you so much again!

I must confess, I feel guilty for having posted this whine and then you come and tell me how positive I am. I really wasn't feeling anything positive at 1:00 this morning.
I do my best. But some days it's just all so overwhelming.

Robbie's last speech eval, he was close to 28 months old and averaged out at 12-15 months on his speech eval. Receptive was 15 or more, but spoken was 12 or less.
We've definitely made improvements since then, but are nowhere NEAR where he should be for either his actual or adjusted age.
He currently gets speech therapy twice a week, once focusing on language, once focusing on feeding.
He also gets OT twice a month.
(This is all down since our last IFSP. He was getting Speech 2x, OT 1x and PT 1x each week. And developmental therapy 1x/month.)

We've definitely come a long way. But sometimes we just seem so far away from the goal that it's hard to tell.

Anyway, thank you both for your kind words. I appreciate them.

ggop said...

Trish - I just kept nodding and relating so much to this post. From NICU to speech delays to feeding issues. My son's feeding issues are nowhere as complicated as tube weaning etc. Still the whole getting bogged down and tired bit resonated with me since its one of those weeks here too!

You soldier on tirelessly but all I wanted to say is I'm glad you vented! The bar keeps getting higher for evals and though Robbie is making so much progress it is still a game of catchup. :-|

I'm rooting for you because you give me hope!

Miracles Happen said...

I have a 25 weeker who is now 5. Every appointment for the last week has been reminding me that we are to little. We did not have to tube our son though some days i wish I wouldn't have fought it so hard. Even at 5 we think calories but I no longer write it all down. I realize that one day he eats way more than he needs the next night he eats nothing. He doesn't drink anything that isn't fizzy. It is the hardest thing in the world.

The crystal ball lies. Even if they say things are fine we find we still have an up or a down even if we know the end result. Things still take our breathe away when we least expect it. Things still make us sad. Other things make us happy and yet the crystal ball forgets to tell us those parts.

Good luck

Two Hands said...

Sending you my love and prayers for a better tomorrow and an even better one after that.

Anonymous said...

I have a 2 year old. His speech is fine and he is a biter. It's a two-year-old thing. He keeps biting this one girl at daycare and I have apologized to the mom. It's demoralizing and embarrassing. Luckily (I guess), she also bites. Terrific! *shaking head*

Anyway, I just wanted you to know that it's normal. Hang in there. Robbie is still beautiful and all yours! I find that I always love my child, but don't always like him. Sort of how I feel about my husband...! Just kidding...sort of!

Searching said...

Sending you some calming zen and prayers to just get through the day.

Laura said...

You know, even though I got to make the fabulous post yesterday about weening the boys down on their formula through the pumps, I can tell you and know that you and Becky understand, that as wonderful as it is I am freaking the hell out about it. I'm so exhausted and frustrated and overwhelmed by this, our biggest feeding challenge yet. And now 24 hours later it has been a terrible eating day for the boys and I don't know if it's because they are hungry and don't know how to deal with it, cranky because of the Periactin, picking up on my supremely high anxiety and panic, or just a fluke. Probably all of the above. In any case, your response to Becky's email... that's me too. Hang in there. We need a whole lot more sleep.