Tenaciously TTC My journey through infertility

Flynn is in the last day of his first full week of preschool, and for the first two days this week, he made it all day at school without falling asleep. Yesterday he fell asleep 5 minutes before the day was over. Poor little guy. He is being such a trooper. Crossing my fingers that my gut is right about this program and that it will help him so much it will be worth his daily exhaustion. From day one it’s been much better than our ABA experience. And it has unexpectedly been great for the other two kids as well.

While Flynn is gone from 9am to 2pm, the reality is he’s really only gone during 2 hours of our normal waking time. Reminding myself of this makes me feel much better when I’m dropping him off in the morning and he’s crying and I’m feeling overwhelmed with guilt, wondering if he’s feeling abandoned. Though it isn’t as if he’s the one sleeping during nap-time anymore, it makes me feel better to know that if he weren’t there, he would be home sleeping during those hours, so he isn’t missing out on fun playtime with us.  Make sense?

Anyway, so those 2 hours that he’s at school and Juliet and Pacey are awake, are now for just the three of us. And I feel guilty that it is so much easier to do stuff with just two of them. At the park, I can manage two 2 year olds. I can go to Target and use the kid cart, or even just walk holding their hands…I don’t have to drag out the triplet stroller. And they are getting more of a typical experience. And when we are at home, engaging in activities that Flynn wouldn’t normally be interested in – like play-doh – I’m not splitting my time between playing play-doh with Juliet & Pacey and playing pegboard with Flynn. I can be fully engaged in just playing play-doh. 100% present. And that’s really cool.

Now please don’t understand me. I’m not complaining about the time when Flynn is here. And I’m not relieved when he isn’t. I miss him. I wish the separation wasn’t necessary. But he has needs right now that I can’t sufficiently meet, and at this time, this program which requires that he be away from us for a little while each day, is the right way to meet those needs. All I’m saying is, there is an unexpected benefit for Juliet and Pacey as well. That they get more focused time with me, that they get to experience some things that probably would have had to wait a little longer if I had all three of them all the time. And the fact that I get to do these things with them offsets some of the guilt that comes along with “leaving Flynn behind”.

Now I just have to make sure that we keep up family outings on the weekend, some Flynn-centric activities when he’s home with us, and figure out a way to get him some one on one time, too. Because he deserves to have some of those typical experiences as well.

You know, there are reasons why kids don’t come with handbooks. Because there just really isn’t any one-size-fits-all to most family situations. And every family is in a constant state of flux. You feel your way along, make adjustments as needed, learn to swallow the hard stuff, look for the silver lining in every situation, and do the best you can. Not sure what else you can do.

So, as I predicted, Flynn made it through the entire day of preschool yesterday, without falling asleep. Of course, he fell asleep in the car the last 5 minutes of the ride home, and was so tired, he didn’t even wake when I took him out of the carseat. I laid him down on the couch and let him nap for about 30 minutes. Unfortunately, I had to wake him or he never would have gone to bed on time. Took some work because he was so, so tired. However, he slept through the night without waking once which as of the past 2 months, is very near miraculous. And, I let him sleep in a little this morning while I got the other two kids dressed. Not as good as a full nap, but one way or another, we’ll find a way to make this work. 

It has been unseasonably warm around here. We’ve broken one temperature record already, and are slated to do so again this week. In the low 80’s one day this week. Thank goodness I already stocked up on some summer clothes for the kids. Have a load of t-shirts going right now. 😀

As we’re presently facing the reality of moving in the near term, it occurred to me how many preconceptions people have about certain areas of the world. Goodness knows I find myself believing stereotypes about the south, and feeling very nervous about fitting in there. And as we contemplate leaving California, I wonder how closely other people’s vision of it matches the reality of it. 

Like, maybe most people think it’s warm here all the time (ummm, it’ isn’t). That we all live close to the beach (nope). That we’re a bunch of bleeding heart liberals (well, me yes, but…have you heard of Prop 8?). Everyone is superficial. And we all must love it here because we pay so g’all darn much to live here.

Truth is, much of California is agricultural. And yellow most of the year. Without any view of the beach. The beaches are generally overcrowded so I personally would never consider a beach vacation in California.

In southern California, which is totally different than northern California, the weather does tend to be a lot milder. Which gets really, really, really boring. I, for one, like having distinct seasons. Something that is hard to come by anywhere in California, unless you live in the mountains. I live in northern California, but really it’s the Central Valley, and we have two seasons: winter (which is mildly cold, occasionally wet) and summer (hot, very hot, and blistering hot). Spring type weather and Fall type weather (which are pretty much the same around here) each last for about 2 weeks respectively. 

Although I never technically lived in southern California, I have family down there, and I commuted to work down there for 3.5 years. So, while I never really become indoctrinated into the culture, so to speak, I have a fair amount of exposure.

I love San Diego. Love, love, love! But could never afford it. And I think in time the lack of clear seasons would wear on me. But there is a ton to do (including a seriously awesome, can’t be missed zoo!). As I said, the San Diego Zoo is a must. Also the Wild Animal Park. Check out Seaport Village in downtown San Diego and go shopping at Horton Plaza. There is a really cool old ship called the Star of India (I think, it’s been years!) that we visited many times when I was a kid. San Diego is a must see in California. 

The food in the Newport Beach/Costa Mesa area is phenomenal. So, so good. Never in 3.5 years did I have a bad meal. I lived at the Hyatt in Newport Beach for 4 days a week for 3.5 years and assuming nothing has changed, it’s a great place to stay. The shopping is supposedly great. I’m not a shopper, so I can’t attest to that. As far as living there? Couldn’t do it. That whole area is so uppity and superficial that I couldn’t stomach the idea of raising my family there. Crazy because I knew, and still know, lots of people in that area, and I love them, but their priorities and expectations, and their subtle airs…let’s just say our values are different. I love them just the same, but it just isn’t how I want to be.

Los Angeles is a complete pass for me. I’ve been several times, and I don’t ever want to go again. I get why people would want to visit it if they’ve never been, but I think it’s overrated.

Disneyland, by the way, is NOT in Los Angeles. It’s in Anaheim which is in Orange County. And, of course, you should go there. If you’ve been to Disney World, you’ll think Magic Kingdom because it mostly is, but it is slightly different and they do have California Adventure as well. I love everything Disney and since I grew up in California and have been to Disneyland many time over the years, it holds a special place in my heart.

Everything between Bakersfield and Sacramento is a pass for me. Grew up in those parts, and it’s just a big black hole. In terms of living there, unemployment is high, it’s miserably hot, it’s mostly agricultural (so many cattle farms it stinks to high heavenand I just don’t think it has much going for it except…Yosemite, of course, is in that area and is a MUST see. The one upside of growing up in Merced, the Gateway to Yosemite, is it’s proximity to…Yosemite. So I’ve been dozens upon dozens upon dozens of times. It. Is. Fabulous. 

San Francisco is something everyone should experience. Fabulous food, great culture, beautiful, historic…and expensive. And crowded. And hilly. Like my quads ache right now just thinking about it. It’s a miserable place to drive and even more so to park. I would never live there. Never, never. BUT, it’s one of my favorite places to visit. Fisherman’s Wharf is my favorite place in SF hands down. Walk around the shops, get a yummy bite to eat, do a ferry tour of the bay, go to Alcatraz, visit the aquarium, check out the sea lions. Then take a cable car tour of the city. Visit Golden Gate Park. Do a little shopping. Do the museums, especially the Exploratorium if you have little ones (even if you don’t, it’s so cool). Just remember that it’s freakin’ cold there, even during the summer. I think Mark Twain said something like “the coldest winter I ever spent was a summer in San Francisco” and he wasn’t kidding. The 4th of July fireworks over the bay are well worth seeing, but wear layers! And stay the night because the traffic is horrific whenever there is an event. Oh, and see a Giants game. That park is amazing! Oh, and the Haight! How I love the Haight, let me count the ways. Takes me back to my late teens and early twenties. If you’re looking for a good vinyl shop, the Haight is where it’s at. 

Lake Tahoe is, of course, phenomenally beautiful. I’m only about 90 minutes away in good traffic so I’ve camped there a fair amount over the years. In fact, my first honeymoon was there many moons ago. If you love the outdoors, it’s great any time of year. 

Santa Cruz and Monterey are very different, within driving distance of each other, and both have lots of great memories for me. My mom’s family is from Santa Cruz, and while I was born at an Army hospital in Monterey, I was brought home to my uncle’s house in Santa Cruz. We didn’t stay long, but I visited many times a year until I was about 10, and because I’m so nostalgic about it, I’ve gone back a lot even though I no longer have any family there. 

In Santa Cruz/Capitola, you have to go to the Boardwalk which is a small beach amusement park. The beach is overcrowded most of the time, parking is expensive and sometimes difficult, but it’s worth it. Check out the Mystery Spot. Go downtown and walk the shops. 

In Monterey, hit the aquarium, 17 mile drive, and Dennis the Menace park. Best. Park. Ever. Like ever. Did I say ever?

I could go on and on. Take Pacific Highway 1 all the way up the coast. Camp (Russian Gulch is wonderful!). Check out tide pools. Go on beautiful and inspiring hikes. Visit centuries old redwoods that are taller than anything you can imagine. There really is a ton to do and see in California, and there are many parts of my state that are so beautiful I can’t put it into words. It’s too darn bad that it’s so expensive, and that all the places I want to live are even less affordable than the places I don’t want to live (and still can’t afford!).

Anyway, I feel I have once again sort of meandered off my chosen path so…I’m going to walk away while the going is good. Just don’t forget, there are way more cows in California than there are nice beaches. 😀

You know, I never really know how to title these posts. Seems like it’s supposed to be short and descriptive and meaningful…and I’m just not ever really happy with what I come up with. Ah well.

So it’s been a few weeks. PB went back to work Feb. 28th, and I’m back to being a full-time SAHM. I’m feeling good, back into the groove mostly, normal amount of exhaustion. Feels good to be back at my “post”.

Flynn’s preschool has been interesting so far. I’m confident it’s a good fit for him, it was just sort of a weird time for him to start. For one, I had my surgery. Then he went through a part-time assessment period for two weeks which was followed by a holiday week, so he didn’t get to transition straight into full-time (9am-2pm). Then he got sick, so he missed a few days. Then he got sick again, and missed a few days. And I’ve had to go get him a few times because he fell asleep…which is really no surprise given that he’s only two years old and he’s going from 9am to 2pm and they don’t have a nap time so…he now has to go without a nap 4 days a week. Which is crazy because he’s a huge napper usually. So, he hasn’t made it a full day yet. Crossing my fingers today will be the day. He seems to be on the mend, and he slept ok last night so all signs point in the right direction.

Pacey is going through a phase where he has to kick in his crib for 30 minutes before he goes to sleep at nap time. It drives me up a wall. I wish I could wear ear plugs because it really makes me want to scream. Especially on the three days when Flynn is home and trying to nap in the room next to him. Most days, I have to choose who gets a nap…Pacey or Flynn. I wish we had three rooms that were soundproofed. Seriously.

In other news, I think I have mentioned before that we have no intention of staying in California. We’ve been waiting for SS to graduate high school (though if a once in a lifetime opportunity came up earlier, we would have worked something out). Well, she graduates in June (fingers crossed). We’ve actually had two serious opportunities come up, one fell through back in December, the other is still in the works, but looking iffy.

Truthfully, we want to get to the East Coast. We’d prefer the northeast, but right now the opportunity we’re looking at is in Atlanta. Really not on my list, but the company is huge, PB’s really good longtime friend works there, they pay very well with great benefits, and the cost of living is pretty great compared to where we are at now. However, services for Flynn aren’t likely to be as good as what we’re used to. And the weather…oh my. Part of the reason we want to get out of here is to get away from the heat, and Atlanta would be the heat we’re used to plus humidity. Ugh. Frankly, if I’m going to live with the bugs and the humidity, I’d MUCH prefer Florida. But I digress…

Anyway, the job hunt has been painfully slow. Lots of jobs to apply for, but it seems like the minute they see we’re in California, they ditch us. It would be nice if they’d pay relocation, but we are ready and able to pay for our own move. We just need a job before we can do it! We’ve been looking in Pennsylvania, New York (not NYC), throughout New England, even Maryland and D.C. area. I know it could take awhile, but honestly…we’re feeling really pressured to get this train moving.

The kids may be only two, but we want to move somewhere and rent for a year to get a feel for the area, and make sure that the services are adequate to Flynn’s needs. Also, we want to give ourselves time to make sure we’re in the right location overall, and our goal is to be settled somewhere, owning a home, by the time the kids start school. That time is going to go quickly. If we stay here, we aren’t going to be able to own a home or provide the kind of life we’d like for our kids. And I don’t want to rent for the rest of my life. So, we keep trudging along. If you happen to know of any great IT jobs on the East Coast, feel free to let me know. 😉

Since I’ve been “on leave”, I’ve been reading, catching up on television, practicing knitting (I’m teaching myself with the help of books and YouTube how-to’s), and expanding my crochet horizons.

My grandmother taught me the basic stitches of crochet when I was about 10. Over the years, I’ve picked it up from time to time, doing really simple (really simple) afghans. Once I finished a project (if I finished), I’d get bored and not pick it up again for a few years. But last year, I picked it up again, and really fell in love with it. And, I decided to push myself and try some more complicated pieces. Free time isn’t something I have a ton of, but I’ve found enough to complete two ripple afghans for our living room, a HUGE shell afghan for my brother’s wedding present, a granny square baby blanket for PB’s best friend, and during this downtime, I tackled hats.

Turns out, I love working in the round and once you understand the basics of something, you can really stretch and get creative. I made PB a beanie, then made the kids one, made a crazy owl hat for the kids, and then I found a hat online for Dr. Seuss’s Thing 1 and Thing 2…and of course, I had to make a Thing 3, as well. Truthfully, I was really proud of myself. They came out so cute! (see pics below)

Anyway, I think lots of people find these crafts to be sort of old-school, maybe even grandma-ish, but that’s part of why I love it. Because my grandmother, who passed 14 years ago, was a very important part of my formative years, and I find myself thinking of her often when I’m working on something. Perhaps it’s silly, but I feel like I’m sharing something with her, even though she’s not really here. This is something she loved to do, and I love it as well, so it’s connecting somehow.

Also, I’ve always had a strong desire to be creative. Creative is not a word I would ever have used to describe myself. Perhaps I’ve attempted to be creative, but never felt like it was an innate part of who I am. With this, I can learn a technique and apply it with broad strokes to create something that’s uniquely me. And it’s a creative skill, so it has practical applications which makes this pragmatic Capricorn even happier.

On a completely different note, everyone in the house is in some state of sick. I think we’re heading into week 2 of our cold epidemic. Juliet, as usual, started things off with a runny nose and a horrible cough. She is on the mend. Flynn has the worst cough ever, but he’s breathing fine, no cough, and his appetite and sleep have returned to normal. Pacey’s cough lingers, his nose is getting better, and he’s in better spirits. Paul was miserable for about 3 days, but seems to be doing a lot better. I was the last to get it, and am in full-blown cold mode at the moment. Anything that can be congested is, runny nose, my face hurts, my head hurts, my ears are all plugged up, everything tastes crappy, so, so tired. But no fever. Probably doesn’t help that I got it while my body is still busy healing other things. Ah well, this too shall pass. The upside is, Paul is already home taking care of the kids, so I can rest as needed.

P.S. I’ve been trying to get pics of all the Things in their hats, but with the illness around here, no one has been game, but Pacey.

Pacey (baby A) modeling his Thing 1 hat

Pacey saying “cheese”

Yeah so, I think about writing every day because, let’s face it…for the first time in a long time…I’ve got nothin’ but time. I imagined this recovery period to be something quite different than what it has turned to be. Not being in full control and struggling with that, I expected. Ditto for not being primary caretaker of my kids (and really, really struggling with that). Those two things are much more difficult than I anticipated, but what can you do? I did imagine an upside. Being able to devour a book in one sitting, for instance. Top that. Being able to read maybe a dozen books or more during this 6 week period of uselessness. Catching up on blogs, and getting back into the blogging groove. But what happened instead is…I’m going crazy with boredom.

It’s amazing how everything sounds so much better when you can’t have it. Oh, I wish I had an entire day to just read. An entire day to catch up on the t.v. shows I never get to watch would be such a dream. And actually, probably if I did have just one day to do either of those things, it would be more enjoyable, but the reality is…I miss my kids. I miss being an active participant in my own life. And I feel so separate right now, that I started out thinking I have nothing to say because, really, what’s going on in my life? Now that I’m writing, I guess maybe I do have something to say…though I can’t speak to how interesting it actually is. 😀

Flynn started preschool last week. It’s actually an assessment period so for the first two weeks, he goes only two hours a day. The first two days were great. He didn’t cry, and the second day he actually dropped my hand and started running towards the door as soon as he realized where we were. Then day three. He cried. And cried. And cried. Day four? The same. Maybe he was a little burnt out. More likely, he wasn’t feeling well but we didn’t know it because his cold was just starting to kick in. Either way, it was a rough two days.

Now the whole house is sick. Juliet started it, then the boys got it. Now Daddy and I have it, though he’s got a head cold, and I have a chest cold. The kids have both. They aren’t necessarily out of sorts, but they are certainly more reactive and wear down easily. I took Flynn to preschool yesterday (it’s called JumpStart, so I’ll probably to start referring to it as such), and thought we’d see how it went. It was better than the end of the previous week because he’s feeling a little better and he had several days off. But, as we were leaving, his teacher told me that they had enough info to design his “plan” and if he wasn’t feeling well today, I could keep him out without worrying about it impacting anything. So I did. Probably he could have made it through, but he’s two. If they’re done assessing him, why not let him rest some more and get back to himself.

It’s always so hard with little ones. They can’t verbalize how miserable they actually are or say that they need a break to rest. At home, this isn’t as big a deal because there aren’t a lot of expectations or demands on them, and if they feel like grabbing a blanket and laying on the couch for awhile, they can. But once school or therapy comes into play…if they are really sick, you just know when it’s time to take a few days off. But with a cold, which can last weeks, and which can show up again days after they got over the last one…if he were in kindergarten, you couldn’t just pull him out for weeks on end until the cold passed. You’d keep him out for a few days, at the worst of it, and then he’d have to tough it out for the remainder. But he isn’t five, he’s two. Then again, he’s going to JumpStart because he’s autistic. The poor kid is going to school very early so that he has a chance at being mainstreamed successfully, or even just having a shot at being successful in a special education classroom down the line, so…it isn’t like keeping him home from daycare either. Ah, well. All you can do is go with your gut, right?

As for me, I’m making my way through this weird period of my life as best I can. Looking forward to resuming my normal life when hubby goes back to work on the 28th (that’s two weeks from tomorrow) while conversely worrying about whether or not I’ll have the energy that I need and whether I’ll be able to temper myself so that I don’t end up having repeat surgery. Because if I undo anything, any repairs will have to wait. We’re out of sick and I refuse to use up anymore of my husband’s vacation time…not that there would be enough left anyhow…and I refuse to dip into what little savings we have. So, careful I must be.

And that’s where I’m at. Rambling, as usual…but apparently, never lacking something to say. A lesson I’ll learn eventually, I suppose. 😉

As I mentioned before, I thought this downtime after my surgery would be a good time to start blogging again. That said, I wasn’t sure how much I would actually blog or what exactly I would write about. I didn’t think that it would be anything particularly intense or deep. Mostly updates on the kids.

But this recovery period has been hard. Not physically, but emotionally. Because I went from being my kids primary caretaker to someone who barely sees them. From the person who ran our household to someone who needed to be taken care of. I can’t even pick up my kids for goodness sake! I feel like a burden and I feel useless and I miss my kids and being a functioning member of our family. This, my friends, is no vacation.

That said, I do have time to read. Lots and lots of time. I’ve already plowed through five books, and am now quickly working my way through a sixth. But this book is about another family’s autism journey and while I’m loving it, I’m not sure it was the wisest choice given my already precarious mental state right now. Sigh.

So, I think that book is why I wrote what I did yesterday. Because most of the time, I move through every day trying to do the best I can for my kids, and trying not to focus on how hard it is sometimes. It’s important to me that I not spend time worrying about the future or feeling sorry for our situation or feeling bad for Flynn. Sometimes I don’t even have to try not to. I just don’t.

I do, however, spend a fair amount of time beating myself up for not following a traditional path for Flynn, for taking my time in finding a good fit not just for him, but for all of us.

The thing is, things change all the time. In terms of medical advances, I mean. Especially when it comes to autism. They really just started making major headway in the past decade or so, and things that were once deemed the end-all-be-all are turning out not to be so for some families. But while new therapies and programs are being developed, adoption and acceptance are slow. And if you jump into the “support” side of autism, you find a lot of judgment. Tons and tons and tons of it. For many of the mothers on the support boards, there is only one way to deal with autism, and if you don’t follow that path you are a bad, selfish, neglectful mother. Hardly what I would call supportive. It is not at all like what I found with all of you, or even on the Resolve boards, while I was going through my infertility battle.

In the midst of all this information (there is SO much), the opinions of all the specialists (developmental pediatrician, developmental psychologists, early intervention specialists, neurologist, regional center administrator, soon the school district), and the other “autism mothers”, it’s hard to wipe away all of the crap and get down to what is right. So you sort of forge forward and hope that things will be come more clear as  you move along.

So, we followed the recommended path, even though it didn’t feel right to me, and we ended up really miserable. Now, we are following an alternative, but still recommended path, and I’m nervous because it’s not what we would be doing if we had all neurotypical children, but just like I had to throw out a lot of preconceived notions about child-rearing when I had triplets, I have to accept that what I expected has been turned on it’s head and we have to react accordingly. But, I do feel better about it than the first choice, so…here we go. (More about that later).

Anyway, I’ve once again gone on and on and on. You’d think I’d been gone for awhile or something! At some point, I will move on from this topic, I think. But for now, I think I have to work through it here. So please bear with me.

For those who haven’t noticed, I’ve moved. Yup, I decided to stop paying for self-hosting because, frankly, I wasn’t enjoying the benefits anymore. So, while I have retained the domain www.tenaciouslyttc.com and it should, in theory, forward to my new address, to be better safe than sorry, my direct address is www.tenaciouslyttc.wordpress.com. If you have linked to my old home or have me in your reader, I would fully appreciate it if you would update it…assuming, of course, that you want to keep reading. Thanks!

Lots of parents envision their children’s futures. They imagine them going off to college, finding a fabulous job, meeting the right person, getting married, having kids and basically having wonderfully successful lives (standard societal definition, mind you; not necessarily mine). Some parents go so far as to envision their children going to a certain college or perhaps getting into some fancy schmancy preschool, taking ballet at 2 and mastering multiple foreign languages. You know those types, right?

And I’ve always prided myself on not being that type. On being the kind of parent who lets her kids paint with broad strokes, try things on for size, and figure out who they are without feeling too much pressure. Do I think they need to go to college? Yes. Does it have to be Harvard? Absolutely not. Do I care if they wait tables for a living? Not if it’s what they love. And I still expect them to be the best-educated waitress in town. As for relationships, marriage, kids…their bliss is their bliss. If it’s healthy and they’re happy, so am I. Period.

I think when most of us enter parenthood, we assume certain things. That our child will be healthy. They’ll crawl, walk, run, talk, learn their ABC’s, make friends, go to school, go to dances, fall in love, have their heart broken, find a passion for something, face a truckload of choices, and forge an independent life for themselves in the wilds of the adult world. We take these things for granted. These things happen to everyone, right?

While I was pregnant with the triplets, I imagined losing them. I imagined delivering too early and all the complications that could arise from that. When they came into the world healthy, I worried about RSV because they were so little. When that passed, there really wasn’t much else to worry about. I mean really, who sits around with three healthy children and worries about childhood diabetes, leukemia, or cancer? Or autism? Unless you have a family history, probably not most.

When my suspicions about Flynn having autism were confirmed, I hated feeling like, all of a sudden, nothing was a given. None of what I listed above was guaranteed for my son. It still isn’t. And every time I thought that (actually, I still think it), I would kick myself and say “The parents of neurotypical (NT) children don’t have certain outcomes either, they just think they do. So we’re still the same.” But you know what? We aren’t.

Having a child with special needs completely changes your perspective about the future – the child’s future, the future of your other children, your own future. If you’re lucky, you are able to stay hopeful and focused, and I have. But you can’t just stick your head in the sand and assume things anymore.

I hope my child will talk some day. Or at least find some way to effectively communicate. But I can’t assume he will. I can arm him with the best therapy on the planet, but no one can guarantee me he’ll talk some day. He’ll go to kindergarten for sure, but will he ever be mainstreamed? I hope that my son is intellectually able (and I feel strongly that he is), but I can’t assume that he is…and I won’t know for at least three more years. I hope that he will be able to live independently at some point, but the statistics, even for high functioning autistic adults…not so good. So I hope and hope and hope, but I can’t assume. And I have to prepare for things that most other parents don’t. Things most parents don’t even think about.

Please don’t misunderstand. I’m not jealous. I’m not angry. This isn’t a vent or a pity party. And truthfully, I don’t feel like I’m adequately conveying what I want so desperately to convey, so I totally get it if it’s misunderstood. It’s just…people don’t like to talk about autism. They don’t know how to react when you tell them your child is autistic, even if they know you. And people tend to think that telling you “He seems perfectly fine to me” somehow makes you feel better. Really, I think it makes them feel better, but in reality it’s kind of dismissive. No, autism isn’t fatal. But it isn’t a walk in the park either. I think there is value in respecting each other’s struggles, don’t you?

Pretending we’re all equals, carrying equal loads, living lives filled with equal opportunity, that’s all kind of head in the sand, Wizard of Oz, la la land BS. We are all different. Some of us more different than others and it’s what makes the world interesting and beautiful.

My son is very different. And there is so much about him that is fabulously awesome. When he smiles, his entire being lights up. SS says all the time that he smiles with his whole body. He’s a great snuggler, has the most fantastic laugh, and is brilliant (if not a little obsessed) with puzzles. When he is interested in something, his focus and patient persistence are amazing. I love Flynn as he is, and I wouldn’t change a single thing about him. But, as I said, he’s still different. And we’re different. I have to worry about things that most other parents don’t have to. And that’s fine. I mean, it’s hard, but it’s fine. I don’t want or need pity. Acknowledgement and acceptance. Maybe a little understanding. Definitely don’t like his diagnosis being swept under the rug as if it’s no big deal.

Still I feel so inadequate in explaining this. The reality is, I felt the same way about infertility. I wanted real support not cheerleaders. I didn’t want others pitying me, but I wanted them to understand what I was going through, that it was hard, to respect my struggle, and to realize that trying to relate their own TTC experience (completely devoid of infertility issues) didn’t a) make my problem go away or b) make me feel better. Maybe that makes my point a little more clear?

I guess, really, it’s about respect and understanding and honesty and support and acknowledging that some people just have a heavier load. Certainly there are others who have a heavier load than I, and I hope that I’m able, at least most of the time, to be cognizant and respectful of those differences, and that I never say or do anything to minimize what they’re going through. Because I know from experience how it feels to be on the receiving end of that. To have your reality dismissed out of hand. It hurts. That’s all I’m sayin.

Surgery has come and gone, and as I warned you, I am going to attempt to write a little something despite being medicated.

The surgery went well. Before I went in, there was a list of procedures they were going to do, and an equally long list of things they might need to do (but wouldn’t know until they got in there). In the end, they did everything on both lists except taking my ovaries. Although not having a uterus means I will no longer have a period (yeah!!!), menopause is not something I wanted to deal with right now, so I’m glad they stayed in.

The surgery took the full 4 hours, and I bled a lot more than they expected. My mom said they were talking transfusion at one point, but it didn’t happen. And they sent me home on schedule, so all is well.

Now it’s Sunday, 4 days after and every day has been a little different. Half way through Thursday, the anesthesia fog finally wore off, and I felt I had better control of myself. But once the fog lifted, I was bored out of my mind. At first I had a catheter and couldn’t get out of bed (not that I would have wanted to, ouch!), and my mom was coming in and out going to appointments of her own, so I had packed things like books, etc. none of which I could get my hands on. So I slept. Which is probably best.

PB was home with the kids. To date, we’ve only left the kids with my mom once, and only for an hour after they went to bed. So, it made the most sense to have her handle me and PB handle the kids. Perhaps an odd arrangement, as for most it would usually be the reverse, but it’s what we were comfortable with.

Now I’m home and my pain is under control. Moving around a bit (shuffling to and from the bathroom). Sleeping a lot still. Shocked at how exhausted and easily worn out I am. Anyway, enough of the surgery business. I’m at home recovering. PB has taken medical leave to take care of me and the kids. All is good.

I was going to write about Flynn going to preschool in a few weeks…but all of a sudden, I can’t think straight anymore, so…I shall return. 😀