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.

The Other Side?

For the last few weeks, I’ve been haunted by fearful thoughts. If I’m honest, I’ve had these fearful thoughts for four years, ever since the first time Little Man told us life was too hard, hurt too much, and it would be better if he were dead. Once someone you love tells you those particular words, and has a plan for how to go about it, you never, ever forget. It’s always there. It can’t be un-said. It can’t be taken away.

We talk frequently about “getting him to the other side” of growing up, getting him to adulthood, when maybe he will better be able to use all his tools, when life and all that comes with being a kid/teen are just easier. I want so badly for life to be easier for him, or at least for him to be able to do it better, handle it better. I keep hearing if we can get him to that point, it will be easier. He will be more capable of processing, dealing, tolerating.

But can we get him to the other side? Ever since the first time he talked about ending his life, I can’t get past the fear we’re never going to get him there. Every time he gets in a dark place, I am terrified. What if it’s today? What if this thing is that last thing, the one thing that is just too much for him? I am fearful every day. It’s always there, even if I’m not specifically thinking about it, I can almost just feel this layer that won’t go away.

Can we get him to the other side? What is the likelihood? And what will it take to get him there? How many times do we have to go into emergency mode? How many phone calls will I get from school? We check in with his psychiatrist every six months. He has been and will be seeing a private therapist. We monitor medications and any changes that might need to be made. We make sure he knows how much we love him, how much our family needs him.  I’m always afraid it isn’t enough, and then sometimes I get angry when I worry it isn’t enough. Aren’t we enough for him to want to be here?

He is okay now. He’s come out of that place he was in a couple of weeks ago.  He’s smiling, laughing, engaged, content. His outbursts and meltdowns have gone back to normal level. His tears and depression have gone back to normal levels. But that level of fear in my heart remains.  Can we get him to the other side? What will it take to get him to the other side? Are we enough? Is what we’re doing enough? And will this fear ever go away?

On Notice

My dear, sweet family….I love you all like crazy. I love being a mostly-stay-at-home mom. I love doing things to make your lives easier, and getting the things I know you like. BUT,  you are hereby all on notice of the following (frustrated momma rant comin right up):

  • I do not sit around all day waiting for one or more of you to call or text me, asking me to bring you something, get you something, do something for you. I am generally pretty busy all day.
  • If you need something for an assignment, class, project, meal, or sports team, I need a little bit more than 24 hours to get that handled for you.
  • I do have a job. Sometimes, I will not be home, won’t be able to answer my phone, won’t see your text until I’m done working.
  • CLEAN  UP AFTER YOURSELVES!!!!!!! The floor, kitchen counter, family room, and stairs are not your personal dumping grounds. Put your shoes in your bins or in your rooms, put your dirty uniforms and socks in the laundry room, put your books on your desks, your papers in your backpacks or desk files or your stack, put your towels in the laundry or in the buckets by the pool, throw away your food trash, put the milk back in the fridge, don’t get a new cup every single time, don’t leave your dirty cups all over the counter, put your snacks back in the pantry, put your dishes in the dishwasher. You are all FULLY CAPABLE of these simple tasks, trust me.
  • I really hate to nag, but I will nag if I must to get you to clean up after yourselves and do your chores. But please don’t make me nag. It makes me unhappy. Ever heard the phrase “happy wife, happy life?” Same goes with happy mom.
  • If you notice we are running out of something, or have run out of something, don’t wait until just after I’ve gone to the store to tell me. Write it on a sticky and put it on my computer, or put it on the whiteboard. Although the grocery store employees get concerned if they don’t see me at least a few times a week, they also start to look at me like I’m crazy if I’m there every single day. Boys, if you run out of shampoo or soap, please tell me….don’t just keep showering without washing your hair or bodies (yes, this has been known to happen).
  • Because I work, I’m sometimes not home in the evening. It doesn’t happen often, but it does happen. When it happens, please do not text me asking me what’s for dinner. Kids, this particularly applies if dad is home. But you’re all capable of opening the fridge/pantry and finding something to eat. I know all of you can cook to one extent or another. Part of me having a job is you all working it out when I’m not here. You can do it! Oh, and just make sure you clean up whatever mess you make – that’s part of the deal. If I have to work AND clean up your mess when I get home, I’m going to be a wee bit cranky (read: there might be some heavy sighing and cabinet slamming).
  • There’s a calendar on the wall for a reason. Almost everything is on there. Look at it, remember it, tell me if something changes, or you need something added.
  • I do the best I can, but I do sometimes forget something you’ve told me. I might ask a couple, or even a few times, especially if it’s a busy work week. Please be patient with me. I’m so not perfect, but it really isn’t fun to be reminded I’ve failed. Put a sticky on my computer. Or text me. Or email me.
  • Don’t take, use, or eat anyone else’s stuff without asking. And when you’re done with it, put it back (except for food you’ve eaten – we don’t need to see that again). Candy, charging cables, and headphones are not fair game.
  • I am NOT in charge of knowing where ALL of your stuff is. You can ask me if I’ve seen it, but it’s not my responsibility to keep track of everyone’s stuff. I have enough trouble keeping track of my stuff.
  • Looking for something means actually looking for something which means moving things around in the fridge/pantry,  and actually walking into a room to search

Whew…okay…I think my rant is done. Any of you moms out there ever gone on strike? I’ve considered it a few times, but I’m more worried my need for order would override my need to teach my family a blessing (lesson).

“Empties”

I started watching the Netflix series, “Atypical” last week. If you haven’t seen it yet, check it out. It’s really good. It’s about a family with two teens, one of whom is high-functioning autistic. Sounds dark, but it gives a great perspective on the reality of life with a high-functioning ASD kid.  It is actually funny, while at the same time, it can be gut-wrenching, particularly as the mom of a high-functioning, ASD teen. It gives me hope for his future as well as makes me aware how long and difficult his struggles will be.

Episode 5 about killed me the other day.  I had to stop it at one point – the neuro-typical daughter was talking about what life was like as the sister to an autistic person. She explained that when she was younger, she would hear her mom talking about her as her “NT” kid (neuro-typical)….She thought her mom was calling her an “Empty” and it made sense to her, because she felt she had to empty herself out in order to make space in their life for her autistic brother, the brother who took up so much space in their family.  I immediately started crying.

Little Man was diagnosed relatively late, at eight years old, but I still feel his diagnosis and subsequent therapies, etc took over our lives to a certain extent. We didn’t stop living, didn’t stop activities for the other two, but Little Man’s autism consumed me, especially emotionally.  One of my biggest fears has been how his autism affects them, what it does to them, how they feel about it.

Big Man and the Princess have not been at the same school with Little Man for years. It’s been five years for Big Man, and four for P since they shared a campus with him. That may change next year, as one of the options on the table for high school for Little Man is their school…..the public, traditional high school just down the street.  We’ve talked extensively about the possibility of him going there…..the worries of him being able to navigate the campus, deal with the number of students, handle the homework load, much less the possibility of being bullied, his differences so obvious. They’ve said they would help him, that they and their friends would look out for him. But what level of that is appropriate to expect of them? At what point do they feel they have to become “empties” so that he might be safe and successful? What is too much to expect?

We may not have to face this issue to the extent I worry about it. Time and his needs may find him at a different school entirely. They are still, however, his siblings. The day-to-day reality of that still weighs heavy on my mind. At what point do they feel they have to become “empties”? I hope I never intentionally lay that expectation on them.

The Year of the Choice

I remember this point three years ago, when Little Man had just started his last year of elementary school. I remember the anxiety I was beginning to feel, knowing we would have to make the decision during that year where he was going to go to middle school. He was in a pretty good place that year, but I was terrified of what was coming, terrified of messing up and making the wrong decision, terrified of the new big bad world he would be facing and its potential for total disaster.

Sixth grade was BRUTAL. We knew it would be, no matter where he ended up. The magnitude of change moving to middle school guaranteed stress, anxiety, meltdown, regression.  I don’t doubt the decision we made as far as where he goes to middle school – it is the perfect place for him. We’ve watched him thrive in the last year, and feel confident he will continue on that path this year. That’s not to say he’s without issues.  He’s been pushing back on doing his work, and on doing his work to his full ability (he’s a brilliant boy).  He’s gotten a little lax, a little lazy.  And, I’m not gonna lie, he sometimes uses his ability to manipulate to get out of things, or delay. So we’ve brought the hammer, because we know we have to prepare him for high school and the expectations that come with that level of education.

I’m trying desperately to stay in this moment, to just relax and enjoy the good place he’s in. But I can’t help the thought from hovering…..we will have to make a choice at some point this year where he will be going for high school. Thinking about any of the options brings a rise in anxiety level for me.  The school the older two go to is huge, and it is traditional….moving classes, big campus, PE for Freshmen, homework loads, etc. I fear the potential for bullying is too big. I get palpitations thinking about him going from class to class, much less making it through every class every day (they block, so Tuesday – Friday, classes are 90-ish minutes long). I panic when I think about him even knowing what his homework is, much less getting it done. And don’t get me started on PE – that’s been the bane of his existence since first grade.

The PBL/math and science high school would be a good fit, but it’s different. He wouldn’t be with his siblings.  And its location requires navigating morning rush-hour traffic in addition to the usual drop-off/pick-up mess. Yes, that one is on me – it’s SUPER inconvenient. Then there are the other options – Classical, Charter, home school (which, quite honestly, isn’t really on the table at all). So. Many. Choices. So much pressure and anxiety.

He goes back and forth between wanting to go to the math & science school, and going to the school down the street with his brother and sister. His class will do high school visits around town in October or November. We have his IEP in November, and a representative from his “home school” will be there.

I feel like I need to meet the special ed teams at each school on the table. I need to know we can work together, that they will have his best interests at heart, that they will protect him, that they will help us get him to the goal of a full diploma with as few disasters along the way as possible.  We  need a school he will keep receiving the services he needs, and that will accommodate him in his particular form of special.

See, this is where I spiral. I’m really trying to focus on the fact he’s in a good place right now, and not stress about what’s coming next year. At the same time, I know how quickly time passes, and that we will need to start these discussions with his teams sooner than later. We basically have about two months to live in the now. Then, we will have to face the year of the choice head-on.

Hey, they’re still alive, aren’t they?

When the kids were little, I learned it was okay for me to take time for myself. It was necessary to maintaining my sanity – those once-a-month bunco nights, book club, the occasional GNO….When they were older, I started to take weekends – scrapbooking retreats and girls’ getaways. Every time I came home though, I felt I was being punished for having had the nerve to go out/away. The house would be a total disaster – kitchen covered in food and dishes, cups everywhere, everything anyone had worn while I was gone tossed wherever, shoes and blankets all over the floor. I’d cry and yell in frustration. I’d bang things around, making sure everyone was aware I was unhappy with the state of our home. It didn’t make anyone feel any better.

Years passed. I continue to do book club, Girls’ Night Out, weekends away. Sometimes when I come home, they’ve taken the time to clean up, knowing it will ease re-entry for everyone involved.  Sometimes it’s a total disaster. I never really know what I’m going to get, but even if it’s relatively clean, it’s not how I would do it. Counters aren’t wiped down. Blankets aren’t folded on the back of the couch. Shoes aren’t in their baskets. There are likely towels hanging over the chairs in the backyard. The dishwasher isn’t loaded the way I load it (and everyone knows the moms load dishwashers the most effective, efficient way possible to make the most of every inch, right?).  The trash and recycling bins are probably overflowing. Floors likely aren’t swept. I’ve learned to let it go.

Hey, the kids (and pets) are still alive, right? They’ve probably been off-schedule, the boys likely haven’t taken their meds every day. But they’ve been fed. They’ve probably done some fun stuff with dad. They got a break from the way mom does everything. No, it isn’t the way I do things, but everyone is still intact, and the house can be put back to order.

I got home from my weekend in Chicago yesterday. I’d been gone for five days. The house was a DISASTER of the first order. I was so tired, and my luggage had been put on another, much-later plane than mine, so I was dealing with that too. I walked in the door, happy to be home and see my babies. I saw the mess, and sighed. I gave the boys a hug, greeted the fur herd, dropped my bag, and set about putting things in order, my order. But I wasn’t mad. It is what it is. I had an amazing weekend away. My kids had a great time at home (well except for the part both Big Man and the Princess’ phones took a dunking and had to be replaced). And hey, they were still alive, right?

Rollin

Holy wow – After that ridiculously long countdown to real summer, we have just two weeks before the Herd heads back to school. (insert bad words here) Where in the ever lovin where did summer go?

We’ve had an incredibly busy, super fun summer, but it has flown by. We’ve rolled from one thing right into the next, or at least I have. School finally ended for Little Man. The following Monday, he started tech camp. Big Man and the Princess were never really “off” as – I may have mentioned this before – high school sports continue to practice through summer. The last day of tech camp, we went to the showcase presentation, and then hit the road for Palm Springs. We spent four glorious days poolside, hanging out with our friends and neighbors who joined us, eating, drinking, sunbathing, reading, playing games, and golfing.  It was HOT, but we don’t care when we’re there. We’re in or right next to the pool all day long.

I was home for 1.5 days, then left for my summer scrapbooking retreat in  Big Bear. In four days there, I managed to finish my 2015 book, as well as our Spring Break Utah trip book. (pats self on back) It was much-needed momma time with friends. We walked by the lake each morning, talked, ate, laughed, and scrapbooked. The only bummer was our usual massage therapist wasn’t able to be there due to injury. I’d so been looking forward to that 90-minute massage. Sigh….other than that, it was a beautiful weekend.

After Big Bear, I spent three days running around like a crazed person, getting the house ready for a cousin invasion. Nine of them began arriving on Wednesday. They trickled in until Saturday, when we had everyone here. Did I mention that was also recital weekend? Yeah, that. We had five fun-filled, busy days. Oh, I won’t lie – we did take plenty of time to sit in or next to our pool, but we were definitely on the go for much of the time.

The day after cousins left, my bestie and her four teens arrived for a week-long visit. We didn’t really stop from the minute they arrived, but oh my…..so much fun! We forget how awesome our city is until people are here and we’re taking them all over. We hit Mission Beach, they kayaked La Jolla Cove, we went to the movies, spent a day in Coronado (on the beach and at the beach bar at the Hotel Del where there was a Norman Reedus (aka Daryl from Walking Dead) sighting (it was ComiCon weekend in San Diego and a bunch of stars were staying at the Hotel), watched the ponies race in Del Mar, golfed our club (K and I rode along while our spouses golfed), went wine tasting in Ramona (you get premium service when your FIL is the President of the Ramona Valley Vintner Association), and took in a Padres game. Yes, all of that. The day they left, I had a work event. I got home that evening and absolutely crashed.

This is the longest break we’ve had all summer……and I leave tomorrow for five days in Chicago. More fun…..a day a Lollapalooza, some beach time if the weather permits, and a Cubs game, not to mention more time (sans children this visit) with the bestie! Then I’ll be home for two days before we leave for a long weekend at my parents’ in Phoenix. We’re home from that trip for two days and the kids go back to school.

Are you tired? Cuz I’m tired. We’ve blasted through this summer, rollin from one fun thing to the next. I think I need a summer to recover from this summer. We’ve had pool time, bbq’s, baseball games, beach days, and movies. We’ve spent time with family and friends. We’ve soaked it all in, taking full advantage of every minute. I can’t believe it’s ending in two weeks, and we’ll be in for another long haul of a school year. I’ll put the pool towels and basket of sunscreen away, tuck the beach chairs onto their hooks in the garage, stow the cornhole game in its case, and say goodbye to summer 2017.