What you can’t see

I took the kids to have their Christmas pictures done the other night. I’ve taken them to a portrait studio for Christmas pictures every single year since Big Man was a year old and the Princess a small infant. It’s just my thing…..I get pictures done. There are tons of photos of them all over the house.

I posted their silly picture to Facebook yesterday. Everyone was saying what a great photo it was. Here, I’ll let you see for yourselves:

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I think the thing about it that everyone loves is that Little Man just looks so happy. What isn’t in the picture, what you can’t see, is that ten minutes before this particular shot was taken, he was on the verge of a full meltdown, and had already kicked the wall twice. What you can’t see in this picture is that the Princess was really pushing back on having pictures done at all, much less the total lameness of Christmas pictures with her siblings, with a color scheme. What you can’t see in this picture is all the sighing and eyeball-rolling that had been going on for over an hour just before this shot was taken. What you can’t see is my stress, frustration, and worry. What you can’t see is me reminding Little Man to NOT make the creepy smiling face the photographer didn’t seem to notice in any of the other shots, like this one:

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What you don’t see, most of all, is me struggling to hang onto them being my babies for just one more year, for just a little bit longer. What you can’t see is that no matter what people post on social media, no matter how perfect a photo might make them look, there is life behind that photo. There are meltdowns, attitudes, general mayhem, arguments, sighing, anxiety.

I kind of shook my head at all the comments. How could they not see? I am THANKFUL for the comments. It is a great shot of my Herd. And I do love the photo. I just know everything that happened while obtaining that photo. I don’t mean to sound like a complete Grinch, nor that I can’t accept a compliment on a great photo of my three. That’s not my point at all. It was just a good reminder for me that no matter how amazing the photo, what you see in a snapshot of a single moment, isn’t all there is to the story, for anyone.

And just because I’m a shamelessly proud momma, here’s the one we had printed.

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Is it fair?

I was talking with a friend the other day about where Little Man will go to high school and how it might be if he goes to the same high school his siblings attend. I have a huge hangup over putting responsibility on them to take care of him and look out for him. They’ve had five and six years of being at a different school, without him impacting their school days, who they are at school. They didn’t ask for a special needs sibling. And I just get scared of putting too much on them where he’s concerned. But my friend said, “He’s their brother. It isn’t too much, it just is.” And then we both started to cry.

They’ve had freedom for a while…freedom from being the autistic kid’s sibling while at school. How will it affect them to have him on the same campus, especially when  he goes sideways (because he will), or decides to hide rather than go to class, or he starts crying in class, or runs out of class, or gets bullied? I won’t be there to buffer nor to manage him.

I don’t even know if this makes any sense, my fears and concerns. On the one hand, I would be so relieved to know he has people who know him and love him there on campus helping to keep an eye out. But on the other hand, ugh, the responsibility. They’re teenagers. They have enough on their plates without having to help him through each day at school. Would it kill their social mojo? Distract from their own priorities?

He has been around some of their friends. Most seem to take him in stride, but he can sometimes be a lot. He’s been fairly manic lately, swinging in seconds from really up, to really pissed off or sad. He’s loud. He’s  intent upon talking about what he wants to talk about. He still struggles with social cues. He wants to be part of things, but he doesn’t always know how to do that, and then sometimes being part of what’s going on is overwhelming to him no matter how much he wants it. Sometimes he is just the annoying little brother, which is normal, but which is also a little bit more difficult for him to understand.

I do, since Saturday, keep going back to what my friend said, “He’s their brother. It isn’t asking too much. It just is.” Sigh….would that this were all easier, and I didn’t have to even have much less process these worries.

Closer

Spouse and I have been married 19 years today. Go us! We have, as all other long-term married couples, been through it…ups, downs, sideways. We’ve had our share of not being even close to the same page. We’ve had seasons we were both so exhausted with just living there wasn’t energy or time for anything else. We’ve struggled, we’ve fought, we’ve battled our way through. He still makes me laugh. Still loves me. Still seems to find me somewhat attractive. And we both still choose each and every day to do what it takes to keep us, our family, together. He matters to me.

Parenting is rough on a relationship. We both bring our own upbringings to the table of parenting. We both bring our issues and insecurities to the parenting table. We bring all our wins in life, and all our regrets and wish-we-hadn’ts. That’s just the way of life. We do have different parenting styles…I am for sure the tougher, hard-ass parent. But then I’m around the babies more, thus I’m forced to be the enforcer.  When the kids were toddlers, he was very much the “let them eat dirt and cut each other’s hair off” parent. I was the rules, structure, routine, solid nap and bedtimes parent. We had lots of conversations about what to do, when we should allow the kids to do certain things, and so on. I didn’t think of it as a cornerstone of our relationship however. We just did it.

You think just having kids itself is a game-changer, and it is. But – and I’ve said this before – it’s nothing compared to parenting teens. Now that is a serious game-changer. I’ve seen it tear apart more than a few relationships. It is so hard (unless you don’t care about your kids, who they are, and who they’re on the road to being….then I guess it wouldn’t be that hard). There are so many bigger things to worry about, think about, deal with, face when your kids are teens – driving, friends, parties, boyfriends/girlfriends, phones, social media, not to mention those big scary possibilities of drinking and drugs.

I’m going to say this….parenting three teenagers has truly brought Spouse and I closer. We talk more. We have to talk more. We continually check in to make sure we’re on the same page. We keep each other in the loop. We discuss how to handle each new thing that comes up. As difficult as parenting teens is, it has had this side-benefit for our relationship.

The other thing we’ve realized is we have more time for us. We now have two full-fledged drivers in the house, besides us. We’re no longer spending hours and hours every weeks getting kids to and from. We also don’t need sitters. They’re even savvy enough to go get their own dinner at a local restaurant if we leave them money. It’s so freeing! And we realize it is very important for us to spend more time on our relationship, because in a few years, all three will be out of the house and off to college or life, and it will be just the two of us again. We need to know how to do that.

Yeah, closer. That’s the way it should be, isn’t it? Happy Anniversary to us!

“You should just be grateful”

I was talking with another preemie mom this morning about our precious gifts, the NICU, how terrifying and devastating and overwhelming it all was. She said that someone had told her, once she brought her daughter home, she should “just be grateful.” What in the ever-lovin? But yes, I’ve heard the same. I should just be grateful – my son is here. He dodged pretty  much all the bullets. He’s amazingly perfectly normal and healthy. Damn right, I’m grateful, every single day. But I’m also sad, heartbroken, guilt-ridden, maybe a tiny bit angry still for all we lost. Don’t ever tell a preemie parent they should just be grateful. You have zero clues.

Seventeen years later, I can still cry over his photos. I can, and do, still frequently cry over all he’s able to do. Every milestone is that much different because I  know very well what could have been, what probably should have been. I pull out his first hat, and am just stunned that it once was too big for him, and my fist barely fits into it. I see his first diapers (clean ones of course) and know they’re the size of a credit card. For real. I remember clearly how it felt to hold two pounds in my hands.

I think about the new mom that I was…..wheeled past the registration desk and all the people waiting in the ER, straight to Labor & Delivery, where I nearly fainted to hear his heartbeat on the monitor, so sure I’d been he was already dead inside of me. I think about all those stats they threw at us each day – his prognosis for survival, then his prognosis for survival without lifelong debilitating disabilities. I think about how much pain I was in, running a 104 degree fever for 16+ hours, knowing there was nothing we could do and that he was safer outside of me. We saw Wonder last weekend. That moment they whisk the baby out of the delivery room, no words said, just silence when there should be joy and laughter and the sound of a newborn crying, I started crying. That’s what it was like. That god-awful silence…..I hate that memory. I hate no one even told us if we had a boy or a girl. I hate that I know how many grams he weighed when he was born (under 1000). I hate that a hospital-grade breast pump was rolled into my room not two hours after giving birth – it became my companion for three months, every two hours. I hate I didn’t even know how to find my son in the NICU when I was finally released. I hate that I went home every night from the NICU to sit by an empty crib….a crib that waited 93 days to be filled.

Don’t tell me I should just be grateful. I am grateful. But I also hurt, I also grieve what we lost, the horrible things we faced that no parent should face. Don’t ask me to be grateful for that. Please. I wouldn’t wish prematurity or the NICU on my worst enemy. I’m grateful – my beautiful, precious miracle child survived. That is amazing. He is a joy. I am thankful and very aware our blessings. But dammit – nothing, no amount of time, takes away the scars from that experience.

IEP processed

Little Man’s annual IEP meeting was almost two weeks ago. It’s taken me a bit to process, mostly because I had other things going on…work, a trip to see my parents, Thanksgiving….I had to process it all anyways. I had to go back through the details, not in-the-moment.

Someone asked me about it, what happens, how did LM handle being in the meeting. I explained, “You spend the first five minutes hearing the ways your kid is amazing and how he’s improved. You spend the next hour discussing all his deficiencies, and making plans to help him.” Truth. That’s what goes on. You know what? I almost hate those first five minutes more than the rest of the meeting. Look, I know all the way he’s amazing. I have to make myself focus on those amazing qualities in the moments he’s completely falling apart, or pushing me over the edge, or having the mother of all meltdowns on the sideline of  his soccer game. He is amazing, brilliant, beautiful, witty, funny, empathetic, entertaining, cuddly, loving, and just….amazing. I’m his mom. I know this. I know they know his abilities, his strengths. It just always makes me feel like I’m holding my breath waiting for the “but…..”

So yes, he’s doing better with his collaborative work, although he still needs work. Yes, he’s very creative. Yes, he’s gotten better at communicating his needs. Yes, he has become a mentor to kids in younger grades working with the 3-D printer. His writing has improved. Can we please get to the hard stuff? The stuff we really need to talk about? The things we need to work out?

I knew he’d avoided going to class for some time when he was dealing with some bullying and then his perception of everyone around him – and their actions – went sideways. I didn’t realize he’d hardly been in class for nearly a month. His grades suffered accordingly – but WTH? Nearly a month not going to class? This is a small school with a small campus. There isn’t really anywhere for him to hide. I do know we dealt with the headaches and stomach-aches for over a week. I know he spent a good amount of time in the nurse’s office. But really, nearly a month hardly being in class, because he wouldn’t go. He ended up with two F’s, three C’s, and one A on his report card. My kids have NEVER gotten an F, much less two, on a progress report much less a report card.

The adaptive PE teacher on consult for him told us she’d have to hunt him down most days when it was time for PE. Again, WTH? They shouldn’t have to go look for my kid. He’s 13  years old.  He’s an 8th grader. The school is small, the campus is small, but you had to go look for him? Then he wouldn’t cooperate nor participate much of the time. So our PE goals remain intact. Get to PE, and participate to a percentage level.  He has a new sheet he has to fill out in which he earns points for showing up, participating in the activity, or running.

Most of his goals remain the same…..working cooperatively and successfully in groups, getting his work done, staying in the classroom, self-management, responding appropriately, stating verbally his feelings and needs, and showing up for and participating in PE.

I do feel like it is a team. We all want what’s best for him, and to best prepare him for high school and beyond. Then we had to start talking about the transition to high school. No, we haven’t decided where he’s going. We have narrowed it down to a few schools, one of which is very difficult to get into, one of which is lottery, and one of which is down the street.  The rep from the traditional school down the street was there towards the end. We had to talk about what potential issues he might face at that school.  PE is a big issue. I get massively twitchy when I think about it. I can’t picture him having to dress-out, in a locker room with a bunch of other, neurotypical 13 and 14 year old boys, can’t picture him participating, or possibly even showing up. I worry about him showing up for any class after the way this Fall has gone.  We won’t even discuss homework, or him staying in class, or him even looking like a typical student.  I just can’t.

I wasn’t entirely impressed with the HS rep. Her responses to some of our requests, and some of his particular issues, almost made it sound like she’d never had to manage or process a kid like mine. Didn’t give me much confidence. I know she won’t be directly involved in his day-to-day if he does go to that school.  We asked about preferential period selection for PE. She’d never heard of that before. We asked about supervision or a different changing location, or only changing his shirt rather than his entire outfit (he wears sweatpants most days anyways), and she responded as if no one had ever presented those options before.

Here’s the deal – he WILL get a full high school diploma. He’s capable. We will not settle for a certificate. That’s going to stand no matter where he goes to high school. Maybe that’s a lofty goal that is going to take a ton of work, a lot of meetings, and a billion emails and phone calls. Whatever it takes, it is going to happen.

So, back to the IEP meeting…..I left kind of numb. There was too much to think about, too much to process. There are many good things he’s done, many great ways he’s improved. There are many things he needs to work on. There are things to be concerned about. My stress over the high school selection, and how he does in high school is straight up through the roof.

One day at a time right? Be where we are, deal with where we are. What’s next will happen when it happens. How do I feel about this IEP meeting? Well, I’m good with the goals we set. I’m not sure how much success he will have achieving those goals within the next seven months, but that’s not really the point, right? The point is that they’re goals for him to work on, for us to help him work on, goals to help make him successful in school, in life. Good did come of it in that it led to good discussion, and Spouse was involved. We have had multiple discussions with Little Man.  He is mostly staying in class. We’re working on the rest. He’s a brilliant boy, with a brilliant mind. Someday, the world will be built for him, he will find his people, his corner of success in his way.

We have things to think about, more meetings down the road, particularly once we decide where he’s going to high school. For now, I’m going to take a deep breath, and be happy I don’t have to think about IEP’s for a little bit.

Almost forgot….How did Little Man do, participating in his own IEP for the first time? He didn’t want to go, and he did push back all the way up to the point of walking into the conference room. He didn’t say much, and we did have to tell him a few times to sit up, get his head off the table, but he was there. He didn’t yell, he didn’t complain, he didn’t growl.  He was there until we started talking with the high school rep and released him to go hang out with his friends at the lunch tables. He did it.

Dark Places

November is Prematurity Awareness Month. I’ve been participating in a 30-day photo challenge, with a list of photos from our NICU time….everything from photos of him with all his tubes, to his feedings, first outfits, and so on. It’s been something of an emotional haul, going back through his baby scrapbook and all the other photos we have from those 93 days. Most days these days, I can recall his early birth and NICU time without getting caught up in the horror of that time. I have a normal, healthy 17-year-old young man. I have much to be thankful for, and he miraculously came out the other side, so those bad memories can take a backseat for the most part.

Here’s the thing….once you’ve lived that, you’re changed forever. There are deep scars that remain. And once in awhile, something will happen…a song, a sound, a smell, a photo…will take me right back to that time. Once in a greater while, something will really get to me, and I go to those dark places I rarely allow myself to go. It’s like a punch to the gut, my breath catches, and my heart races with grief and fear.

Those dark places are pretty intense and painful.  I hate that I fully believed my son was already dead the minute I saw that toilet full of blood. I feel I’d lost faith in him, his life, his will to fight. It messes with my mind, brings up all the what-ifs, should haves, could haves, would haves.

I was away from him for five days following his birth. God those days haunt me. Logically, I know it was completely out of my control, and it could have been so much worse. There was one point, due to the need to properly treat the severity of my staph infection, the doctors discussed keeping me where I was for four weeks so they could monitor my recovery closely and administer the strong antibiotics I needed in a controlled environment. I can’t even imagine what that would have been like…four weeks locked up in that hospital, ten minutes away from my son’s hospital, unable to see him. As it was, five days nearly drove me insane. I wasn’t there for him. Spouse saw him, touched him, held him, knew how to find him in the NICU, knew his doctors, knew the routine, knew what our son’s face looked like. Spouse had to show me all of that when I did get out. I still feel guilt over that. Stupid guilt, yes, but guilt nonetheless.  I hate those five days. I hate how they make me feel when I let myself go to this particular dark place.

When I did get out of my hospital and went to his, they could have told me any boy in that NICU was mine and I would have believed them. I had only seen him for a few minutes before he was transported to his NICU. Most of his face was covered in tape. I hate knowing I wouldn’t have recognized my own child if  you’d lined up five boys in their isolettes in front of me.

I didn’t spend 93 days and nights in the NICU with  him. The world continued outside, and I was encouraged to take care of myself…..go home at night, get rest, do life as much as possible. I dreaded leaving him every evening. I hate that I left him to the care of doctors, nurses, and machines while I went home and did normal stuff….bought groceries, made meals, cleaned the house, fed the dogs and cats, watched tv, and slept. I hate that the world went on, that I participated in any “normal” while he lay there battling to live.

There was one point he was developing an infection of some sort. They needed to do a clean blood draw, and then transfuse him. I broke down and fell completely apart. He was maybe three weeks old. I’d only been in the NICU for a little over an hour that day, but I left. I couldn’t take it. I could see his tiny face, red with anger and hurt. I could hear his muted cry, and I couldn’t take it. I went home and just cried…I’d failed him again. I wasn’t there for him again.

See…..dark places. They, as much as anything else, are a part of premature birth. It is rare I let myself go to these dark places. They are my worst memories, my worst fears, my deepest pain from his prematurity. They shouldn’t matter anymore, shouldn’t affect me anymore, but they do……very rarely, but they do.

Why now? Why wait so long?

I am the victim of sexual assault. It was a long time ago. No, I never reported it. Why? Well, I felt like it was somehow my fault, that no one would believe me, that he would deny it, that I would be humiliated even further. I blamed myself for putting myself in the situation that enabled him to do what he did to me. It took years for me to even acknowledge it was sexual assault, much less deal with the emotional fallout, and trust me, there was a LOT of emotional fallout. It’s not something you ever get over or forget.

All the reasons I never told anyone are all the reasons these women, and men, coming forward now to report sexual assaults, abuses, and harassment rather than years ago when they happened. And all the people pushing back only reinforce the rightness of their silence in the victims’ minds.

I’ve been filled with righteous anger the last couple of weeks at the insensitivity towards these victims, the ignorance of the naysayers saying they must be lying, or that they waited until just this moment to “ruin” the abusers’ lives. They have no idea how much these victims have suffered, how their lives have been ruined. That disbelief, that pushback is exactly why victims keep their mouths shut. Reinforcing that only does more damage, makes them believe maybe it didn’t happen, maybe it wasn’t what they thought, maybe it was their fault and they asked for it.

So stop asking them why now, stop questioning their motives, their motivation for coming forward now. Listen to them, support them, let them know you believe them, and it isn’t their fault what happened to them. Asking “why now” just makes you part of the problem, adds to the rape culture that exists in our world.