Cinco De Mayo Dump

Six years ago today, we walked out of the NICU with Elias buckled in his first car seat, a portable oxygen tank attached to him, and the false belief that we were leaving the medical world behind.

Going home to a normal life. A family like the one we dreamed about during my six months of pregnancy. Before the sky opened. Before fluorescent lights replaced my darkened womb. Before I understood that parenthood is not a romantic comedy where everyone laughs on cue.

I'm emotional tonight. And I'm not sure exactly why. We had a good day: Olive actually napped for almost three hours, Elias didn't resist going to school, we celebrated with an early dinner at Don Jose's with Cuzuncle David topped off by a walk around University Lake, and Elias fell asleep before 8:00. 

I should be snuggling on the couch with Nick, enjoying some quiet time instead of sitting here mining my mind. But I can't relax.

I guess I'm just feeling exhausted by the never-ending list.

There will always be more to do for Elias. Always.

And yes, he has come so far and I celebrate this, I do, but some days the details left undone defeat me.

Some days I don't want to change his diaper. And I don't want to feel guilty for not making him practice pulling his pants back up himself because some days it just takes too damn long and I'm not always patient.

And its hard to watch him struggle.

Hard to wait.

For years I've nurtured a secret fantasy that someday outsiders would meet Elias and never guess his history. Just another kid running across a field. And sure he runs with his canes but his blue forearm crutches practically shout: "Look at me I'm different!"

And then when he doesn't look at you or answer your question on the first beat, or second or third, well then...

And this is my story too.

And some nights I just need to cry.

I don't think it helps that I read a draft of his IEP Amendment for our meeting tomorrow. Even after six years of practice, I still break a little when I see his issues spelled out on paper, broken down into measurable goals.

I mean don't we all have shortcomings?  Why all the bloody paperwork for a six-year-old boy?!?

And yet before I even finished typing that sentence this other voice said, "Because he needs support and this is how its done."

I'm sorry for this dump of a post on a day I should be rejoicing about the miracle that is Elias but you caught me on a hormonal surge, a high tide night, and I just want to claim my own island in the sea.

A place where no one is compared or charted or measured and everyone laughs when they damn well please.

Is that too much to ask?

Comments

[niksmom]

It's not only NOT too much to ask, but a welcome bit of company on the neighboring island. There are days, seems like a lt lately, when I just don't have the endless patience and the boundless knowledge of how to handle things and I fall apart. I don't enjoy it but at least I know I'm not alone. Neither are you.

And, yes, our boys are amazing and HAVE come so far. But some days? HARD, just hard. Sending hugs and prayers and hopes that a new day brings more hope and patience for both of us.

[Jessica]

I think you are aloud to have days like this. We all are. Even with Olive you will have days when you focus on how far you have to go. Even when children develop typically there are still things that they are not the best out. They all have things they just can't do and although you try to focus on the positive some days you gets dragged down by the things they can't do.
Most days though you focus on what he CAN do and that what helps you get through all those things he can't and face all that paperwork and those labels.
A world without labels would be GREAT. I truly think that we could gt there AND still give kids the support they need. People always look at me funny when they ask me what kinds of kids I have in my class (meaning of course their labels) and I don't know. I can tell you what each of them can do, what each of them is working on in the short term and in the long term, what they like to play with, what they like to eat, what makes them mad, the list is endless, but their label I have no idea. I can look it up as course, but really their label doesn't tell me much about them. Nor, will it tell someone who just met them about them. They need to know the things I know. If we lived in a world where EVERY kid was looked at on terms of who they are what they could do and what they needed help with Elias would be just like the others. He would have his strengths celebrated and his needs met and so would they.
Jessica

[Sarah]

You are so entitled to days like these and I think that all parents have them. I have 2 little boys you have special needs not as severe as Elias, but one was quite speech delayed and has sensory processing disorder and the other I am still trying to get diagnosed...lots of sensory issures, speech delay, stimming...possibly on the spectrum. There are days when I don't want to force him to dress himself either to strengthen his fine motor skills, and I don't want to have to brush his skin 5 times a day and go to thie evaluation and that evaluation and listen to the experts put him into a neat little box with labels that make him sound like so much less than he really is. I get where you're coming from and I think that your road is much harder than mine. I want that normalcy too. I want to be able to do normal things like go to children's birthday parties without my child being in hysterics because he is beyond overstimulated. I am sick of feeling guilty too. So just know that you're not alone. Whether you're a parent of a child with special needs or a typically developing child, I think that we all have these moments. Thr overwhelmin responsibility of it all just crushes us every once in a while, but you are so strong. You will bounce back....we always do because they need us to. Just know that you're not alone and don't feel guilty for having normal human reactions

[Ginny]

You are allowed to have days like this. We all are, no matter our circumstances. You're not alone in feeling overwhelmed - and you are strong enough to remain the amazing mom you already are.

[Deidre]

Christy, life's hard. Not all the time, but a lot of the time. We're allowed to acknowledge that, to have moments/days where we feel overwhelmed by just how difficult it is to live in this world. I try to give myself a day, or at least a couple of hours to throw myself a pity party when I'm tired of being so Pollyanna. Sometimes I think I should have hats and buttons made, "this is rough" "I don't want to do this anymore", "this sucks". I try to pick something indulgent to lose myself in, a funny movie, cheesy book, chocolate, and just wallow. I let myself cry, complain, and just feel sorry for myself. Acknowledging that things aren't as easy as I would like or haven't turned out as I'd imagined. And then I dust myself off, put my big girl pants on, remember how fortunate I am and move along. You're allowed. It's healthy. Of course you can't stay in that place and no one wants to, but it's normal to go there and to just give yourself a break and a good bit of rawness. Give yourself space to honor that things didn't turn out as you had imagined. Space to say that just because you wish things were easier doesn't mean you don't love your life. As Elias and Olive grow they'll come to this place as well, maybe they won't get into the college of their dreams, or they won't make the sports team, or the cute guy or girl breaks their heart, or a difficult IEP, or the million other things that can lead to disappointment, or anger, or sadness, or all of the emotions that make up the fabric of our lives. Give yourself the same compassion you will give your children. Throw yourself a pity party, make a cake, make a copy of Elias' IEP and burn it, rip it up, throw it across the room, do what you need to do. It doesn't make you a bad person, bad mom, bad wife, it just makes you human. It's so hard to not get caught up in the measures, that's what we're trained to do right? What grades did you get, what is your GPA, how much money do you make, what is your BMI, BP, cholesterol, what is your credit score, your country's GDP, what are the crime stats in your neighborhood, your pass completion rate, how many goals did you score? We are such a measurement society. I don't know a lot, but here's what I know. Elias was born under 2lbs, and you were told "He is alive but I can't tell you if he will live." He's now a willful six year old who can write his numbers and run down a hallway. I know he's not where other six year olds are in some areas, but in all honesty, there isn't a day that goes by that I don't read your blog and think, "holy shit that kid is a miracle". They don't put that down in IEP's, there isn't a doctor who will say, "We didn't think he would make it and now look at him go." Hang in there, you're doing great. Elias is doing great. I'd give you both an A :).

[fleming]

I feel the same way today......I'd like parenthood to be like a doubles tennis match where you play net and your partner hits ground strokes and at the end you are declared the winner. There is no winner in this game, no finish line and sometimes it feels exhausting. Reading your post I wonder, if my child doesn't have an IEP am I still alllowed to be frustrated? Bummed by the teacher remarks about what I consider to be spirit and they find "disruptive"? I need an island today too.....Let's both give ourselves that and swim to shore tomorrow, ok?

[Kathy Sue]

You are entitled to days like this, as everyone has said--all children are challenges, but parenting a child with special needs is harder. My hat is off to everyone who parents a child with special needs.

That's why services are there for parents with special needs. Everyone needs respite sometimes. And everyone needs time to enjoy their children. Summer is coming. The pace will be slower. Just a few more days . . .

[DiVaughn]

I think the "sprung from the NICU day" brings with it a ton of "what-ifs" every year, and just by the nature of it being an annual thing, it's going to grow and change. Nobody's going to blame you for mourning the "what-ifs", and I don't think any of us who've been through it will begrudge you a little hormonal wallowing. Looks like you even had company on your island. And you don't always have to watch him struggle, and you don't always have to read that beast of an IEP the same day it comes home. Because although he DOES need support, and this IS how it's done...there's also a time & a place to rejoice in how far he's come. Our IEP team always ALWAYS lists Evan's strengths whenever and wherever they point out a deficit...and if they forget they call me back and rave about him in person. It's a great idea, and I think it should be a best practice. :)

[Christy]

It sure does help to know I'm not alone because as much as I want my own private island without comparisons I want and need company and your words always make me feel less isolated in my challenges!

And Flem, IEP or no IEP you have every right to feel frustrated, and lets stay on our islands a few days more, I'm not quite ready to swim to shore.

[fleming]

perhaps mother's day would be a good reason to return....