On Giving Myself Permission

It’s time to be brutally honest, here.  Having a child with special needs and/or delays… is hard.

Not every day is full of victories.  Some days are full of mom and dad just counting down the hours until bedtime.

Sometimes dealing with your day means letting your child stare at an iPod because it keeps him happy and occupied so you can load the dishwasher, or drink another cup of coffee, or have a grown up conversation with an actual adult.

Sometimes i don’t visit friends because the prospect of packing up my children and getting them organized to go out is too much work, because the idea of having to carry around my 28lb child already makes me exhausted, because having to fight over everything with the older one seems like more trouble than it’s worth.  Sometimes you let the children watch tv instead of playing outside because you just want the little one to WALK ALREADY and you’re tired and even though you feel like a terrible parent, you eat chips at salsa at 10 am because it’s generally frowned upon to be wasted when caring for small children and emotional eating is better than emotional drinking at this point.

The worst part is that none of this is their fault.  The worst part is that even though you KNOW this, sometimes you feel like it is their fault.

Having kids, in general, is hard.  Watching kids who are the same age or younger than Ozzie run around and play and skip and jump and talk and eat french fries and be independent is really hard.  A friend of mine also has a child with some special needs… and sometimes she is jealous of the things that Ozzie can do.  She reminded me that sometimes it’s okay to cry and to feel like you’re doing a shit-poor job of parenting… as long as it doesn’t last forever.
It’s okay to be sad, or tired, or exhausted.  It’s okay to tell someone, they aren’t going to think you’re a terrible person, instead maybe they’ll just think that you are on the brink and need support… and it’s okay for us Special moms to NOT be super heroes all the time.

This is a hard lesson.  One i suppose i need right now. Days like today are few and far between, but they are never easy.

update:
Sometimes, i have amazing friends, and they bring me cakes. ❤
cake

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Teething Blues

Y’know, i’m really trying to make sure that this blog is not all ‘woe is us’… but just for a minute, can we ‘woe’?

Every parent who’s ever gone through the teething process knows…TEETHING SUCKS!

Feverish, cranky babies who get the poops and the bum rash and chew on whatever’s around them… and drooooooooooooooooooooool….

Yeah.

Let’s talk about drool.

::throws her hands to the sky and screams:: “CURSE YOU DROOL!!”

Imagine, for a minute, that you can’t really swallow your own saliva.  Go ahead, try it for a bit – i’ll wait…

yeah, it’s pretty gross.

This is what Ozzie deals with on a regular basis, add extra saliva from teething and what do you have, besides a lot of wet shirts?  Choking hazard!!

Because Ozzie’s life will include obstacles like teething and general sniffles – which brings things like drool and/or snot or any tiny bit of added mucous or moisture, we have been equipped with a suctioning machine which looks similar to this:

with this bad boy we are able to ram insert a very small tube down his nose or throat so we can suction out any phlegm or mucous or extra spit.  If you would have told me five years ago that this type of procedure and machinery would be part of my daily life, i would have laughed in your face.  I was a Music Major in University…. sigh.

The suction machine has been a life safer, figuratively and quite possibly literally.

Today, after suctioning a very drooly and cranky Ozzie, Brad said he couldn’t wait for ‘this stage’ to be over…. the stage of paranoia where we worry every minute that he is going to choke or aspirate (which means inhaling a foreign substance into the bronchi or lungs, just FYI).  I replied; “yeah, it would be nice if we could enjoy his baby stage a little more”

And the teething process goes on…

He has TWO that have cut through – however, it’s one on the bottom and one directly above it on the top… which he loves to grind together…. which makes his mama want to gag every time she hears it (which is all the time, every day – in case you were wondering)

WOE is us.  Woe.

But on the plus side: He had his check up with his Pediatrician yesterday, and she is very impressed with his progress developmentally – and with his breathing (the last time she saw him, he was on Oxygen in the PEDS Ward with Pneumonia).

So that’s what’s up with us… keep on Keepin’ on, baby.

November Fourth

Day 19 in NICU, still no end in sight.

I kinda wanna talk about it, i kinda wanna scream from the rooftops; WHY ME?? i kinda wanna crawl into the fetal position and hide in my basement until Ozzie comes home…

I want to tell you everything, and i want to tell you nothing.

I want to cry, and I want to stop crying.  Every day, i’m so sick of fucking crying!

Brad and i are keeping a lot of things to ourselves right now, because there are a lot of uncertainties – and mostly i don’t feel like fielding the same questions every time i see or talk to someone.

My mother in law came by the other day because Cedric was sick and couldn’t go to daycare, so when she arrived, she looked around the house and said: “What’s bothering you the most?” and i said: “That Ozzie’s not at home.”

My house, it’s a disaster.
My body is tired.  My heart hurts.  I feel, everyday, like a part of me is missing, because a part of me is in a little plastic box in NICU.

I want a break.
But i can’t take a break.  I can’t justify not going to the hospital when i’m perfectly able to.  But also, not seeing Ozzie for even one day would be more painful than i can bear.  So, every day i drive 20 minutes across town, battle all the construction in the hospital parking lot, walk up the stairs to the 3rd floor because i can’t be bothered to wait for the SLOWEST ELEVATORS OF ALL FRIKKIN TIME!, and then i sit.  I sit and i hold Ozzie for as long as i can stand it before i have to either pump or leave.

And he’s so little that there’s really not a comfortable way of holding him for that long… so my back aches from the chair, my butt hurts from sitting so still for so long, my shoulders hurt from holding him close, my neck hurts from straining to look at him while i’m holding him… my breasts and nipples hurt from constant pumping – and or waiting too long to pump because i just can’t put him down and think “Just ten more minutes….just ten more minutes” until i’m about ready to burst.

Then i come home and give all my attention to Cedric who is super clingy right now because he’s been sick…again…. And i’m doing everything i can to not get sick myself because staying home is not an option for me…

Brad is working, being superdad, and trying to put the house back together now that we finally have our carpet in our rumpus room… and on top of everything our car is probably going to be written off because Brad had a bit of an accident last week when we had all that freezing rain… because we don’t already have enough on our plate.

We made the decision to try to find our cats Kozmo and Cinda new homes, and neither of us wants to actually think about putting them up for adoption – but Kozmo is not adjusting to life with children – he took a few unprovoked swats at Cedric in the past little while, and we’re starting to wonder if Cedric might be a bit healthier without the cats around.  Now with TWO preemies to think about, it’s time to part ways with our feline babies.  SAD! CRY!

November, so far, has been full of mostly suck.  I would like some goodness please, universe, and i would like my baby home.

November First

I have a confession to make: I am trying very hard to handle everything, but i don’t think i’m doing very well.  Ozzie is STILL in NICU.   I know that every baby is different, and i really shouldn’t be comparing Cedric’s time in NICU to Ozzie’s, but it’s hard not too.

Cedric seemed to have it all together, he was just small.  He was out of NICU after 18 days, and here we are with Ozzie – on day 16 with no end in sight.

I know that the hospital is the best place for him, but my heart hurts every time i leave him there… I’m usually there for five to six hours, but it seems like it’s not nearly enough!  like i could be there more, even though i can’t do much but hold him, or stroke his head.

This go around – it just seems like there are so many more things to deal with… And on top of a teeny tiny baby we have a very confused two year old – who kinda gets that his little brother is here, but it’s tough because he can’t go in to see him.  He’s seen pictures, but that’s about it.  It’s tough.  All he really gets is that he’s being dropped off at grandma and grandpa’s more than normal, and that his mama time has been seriously depleted.  And that breaks my heart – i know that i have TWO little boys to take care of, and its hard not to feel like i’m letting one or the other down.

Mostly, right now – i am sick of talking about it.  I feel like everyone i talk to expects me to break into tears, and they all ask the same thing, i’ve almost got it down to a science of not actually talking about it:

“how’s Ozzie doing?” and i always say the same thing: “Oh, y’know… sleeping, growing”

“How are YOU doing?” “Oh, y’know, as good as can be expected”

“How are you guys holding up?”  “Pretty well.”

it’s not that i don’t appreciate all the thoughts and concern, i really do.  But repeating the same story over and over again, with someone new every day, it’s just too hard.