While I didn’t forget the big NINE month milestone last Friday, it’s been a rough week. Who am I kidding, it’s been a rough nine months 🙂
Before I get too far, I should celebrate the big milestones we’ve had this month. Luke can now sit, unassisted. Holy smokes!! He’s rolling one way, belly to back. Clapping. Saying ‘da-da’ (they get all the credit). Playing unassisted for a good hour or more. Reaching for toys and pushing himself back up to sitting. And I think we might’ve hit the 13 lb mark. Socially and cognitively, he scores right on track, at 9 months. Gross motor, he’s at the 6 month mark. ECI has been coming out every other week and we’re seeing some slow progress. For all that, I am thankful beyond words.
Now for why we’ve been off the grid. I won’t bore you with all the details, but most of the lack of patience, lack of energy and lack of doing much else stems from the fact that Luke is not sleeping. Now, pre-Luke when I used to say that, what it really meant was…
a) his morning or afternoon nap wasn’t as long as it usually is
b) he didn’t take a morning or afternoon nap
c) he woke up at 6am instead of 7am
d) he woke up in the middle of the night and I had to nurse him back to sleep – 30 minutes tops
Strike up the pity party band, right?!?
Today it means he’s really NOT sleeping. We had him on a pretty good schedule prior to his spine surgery. Then, the hospital totally jacked with that slice of heaven and when we got home, we decided to go cold turkey, break all our bad habits and get him sleeping in his crib. It was hell for 10 days. But, we were on a good track and then came the ear infection. That was hours and hours and HOURS of screaming. Usually from 10pm until 3 or 4am everyday. With no naps during the day. Sigh. Then we got that remedied, sort of and then it came back. Then came the belly pain and more antibiotics. And so it’s been for the past month, the hours of screaming. We get him to sleep, lay him down in the crib and the instant his head hits the sheet, he’s all screams.
I’m not asking for advice. Luke is complicated. I just need a place to vent and document just how bad it really is. Experience has taught me that when I look back on this, I’ll say, “Oh it wasn’t really that bad.” But today it is.
Trust me, we have tried all the tricks. We’ve thought of all the scenarios: ears, belly pain, separation anxiety, developmental milestones, stubborn ass, you name it. Yes, it’s a phase and it will pass. But, with Luke there is an element of worry that I never had with the other children. There are the questions…
Is he really just wanting to be held, or does he hurt?
Is his belly distended? Did it look like that yesterday or are my eyes playing tricks on me?
If I let him cry for a half hour, how many calories is he burning that he just gained?
And so, so, so many more.
By nature, I’m a mild worrier. I freak out sometimes. I take things for what their worth and then sometimes blow them completely out of proportion. Sometimes I’m calm. Sometimes I’m rational. Somedays it’s just hard to know how to balance on the line of “worry worth calling the doctor” and “normal kiddo behavior.”
A couple of nights ago, I made the mistake of googling NEC. Bad, bad idea. You see, finding another mom who’s had a baby survive surgical NEC is practically impossible. It’s like finding a needle in the haystack. Right now, it’s hard to decipher it all. It’s hard to set aside the worry and trust in a greater plan.
A sweet friend of mine told me something yesterday and it’s really given me pause to think and reflect. She has a son with special needs. They adopted him when he was two. That boy has endured several brain surgeries (major ones), lots of scares, ER visits, specialists and the like. For what it’s worth, I think Angela is a saint…and a very wise mom. Her miracle boy is also a stubborn one. In her wisdom, she listened to me vent and then she said this: “Luke has endured so much and has been such a fighter. He may just be fighting you on this because that’s his nature.”
In all these years we’ve known one another, not only did that perspective give me eyes to see my own son in a different way, but it gave me eyes to see all other children with special needs through a different lens. Sometimes we’re quick to judge, aren’t we? The life story we all carry around has a lot of chapters. Shame on us if all we do is read the cover.