Being a Special Needs Parent is Exhausting

I know what you’re thinking: Yeah, kids are exhausting. Parenting is hard. Welcome to the club. 

What I really mean is, my kids are exhausting for me, a person with mental illness that is not yet controlled. That’s more accurate but not a very catchy title. Let’s just take a look at what parenting is like sometimes when mama or papa has a brain that won’t stop. Cuz let me tell ya, my brain, it’s a doozy.

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Can’t stop, won’t stop

First, for the biggest and most obvious example: babies. Everyone wants to look at babies. Touch the babies, talk to the babies, make the babies laugh, and then they ask the parent questions like, “how old are they?” “why are they not wearing shoes?” “do you have any more?” “can I hold them?” “can I move in and turn this anxiety attack into full on panic mode?”

Okay that last one doesn’t happen, but still. It is overwhelming. My doctor, upon first meeting me, diagnosed me with “a variety of anxiety disorders,” which kinda makes it sound like a fun pack of candy, except it’s just different ways my brain likes to screw with me. Anxiety disorder, panic disorder, social anxiety, agoraphobia, etcetera. Going out in public and dealing with strangers is hard enough for me, but I used to be able to awkward my way through things with as little social interaction as possible.

But then I had kids, and my children demand attention. My youngest, who is currently 16 or 17 months, something like that, is in the cutest stage imaginable. In public he will give people flirty eyes, he will wave and say hi, blow kisses, do whatever he can to ensure that everyone in the vicinity will come bow to his awesome adorableness. Honestly I can’t blame them. I made some cute kids. (Yes husband, you helped too blah blah blah.) But the whole time I’m just itching to get away and get home where no one will talk to me. Until the big kids get home.

Dun, Dun, DUNNNNNNNN.

Second example: when they come home from school, or *terrified gasp* are home for winter break! Or even worse, SUMMER BREAK. I’ve got to admit, I never understood why parents celebrated back to school time so damn hard, until I had kids myself who went to school. This shit is hard! But for me, I hate even saying it, but I feel like it might be a bit harder. One of my conditions is PMDD(premenstrual dysphoric disorder) and a major symptom is sensitivity to sound. To SOUND. I’m a mom of special needs kids with a sensitivity to sound. So at that time of the month I cannot bear to hear my own children talk to me. The constant singing, the fighting, the gazillion questions, and no kid, gazillion isn’t a real number. Do you guys know what comes after a googol? Or after a decillion? Too many questions!

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Sorry kid, can’t hear ya.

Speaking of questions, and whatever else I was talking about, have I mentioned that my daughter and I both have ADHD? First of all, I struggle with so many of the normal things that badass parents conquer every day. Things like getting the kids to school on time, remembering what time to pick them up, making phone calls to therapists and doctors and the worst of all, playdates. My kids school is pretty awesome, and the people are so sweet so I’ve never been made to feel bad, but let’s just say I’m the one parent they will call on a half day to remind me that it’s a half day. Because I have forgotten and left my kids at school one too many times. Oof.

Oh, there’s so so so many more examples I could go through, but honestly, I’m tired. You know, because three kids, and a brain that won’t stop. The point is, I’ve come to look at things a bit differently over the years. I often say that I am a special needs parent. Which originally meant I am a mother to children with special needs. But who are we kidding here? I’m the one with special needs.

I need my kids to be quiet. Not possible.

I need them to pay attention. Because I can’t.

I need them to not attract so much damn attention. But seriously kid, we all know you’re cute.

I have so many needs in order to feel like I am a good mother, but let’s face it, these things aren’t going to happen. So instead I rely on what I can. Lots of alarm clocks, prayer, meds, alcohol, more meds, the occasional mental breakdown. Parenting is hard. So hard. But parenting special needs kids when you’ve got your own special needs? Damn exhausting.

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Oh, and for any judgy Janes I’ll say it: It’s still worth it. 

The horror that ended my breastfeeding journey

Okay, so this post is a little late for me, since I stopped breastfeeding my third, and last, baby over 6 months ago. But I’ve learned something new that I wish I had known then. And holy hell it is insane.

Breastfeeding can be the most wonderful, fulfilling act in motherhood. The bond with your baby, the way they look up at you with all the love in the world while they nurse. The way they squeeze your hand and smile with milk dripping down their chin. The way they decide then and there that they want to grow up to be acrobats in the circus and start practicing in your lap, still attached to your nipple. Wait… That last part isn’t wonderful or fulfilling.

There are some real downsides to breastfeeding. The judgements and scrutiny about every single decision, cover on or off, how long should you do it for. Everyone has their opinion and people love to make mothers feel like shit for not following what the masses feel is best. That’s only the beginning, and the type of thing we unfortunately see all the time. I found out first hand that it can get a lot harder than that.

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Due to fear, I failed at breastfeeding my first. The doctor insisted that I NEEDED to supplement with formula and once I did, my baby was no longer interested in nursing. But with my second, I had done my research. I ignored my pediatricians formula pushing and went for it on my own, and I ended up nursing my baby girl until she self weaned at 16 months. And I loved it. Obviously there were baby acrobatics and the judgements for going past a year and all that garbage, but I was happy and proud. So once I had my third baby, I was sure it would go well. Why wouldn’t it? I’m no rookie mom anymore! I know what I’m doing and this is going to go great.

I started my breastfeeding journey again, and this time, life was determined to knock me down a notch and show me how hard things can really be. Things seemed fine at first. Baby latched on right away and seemed happy. But before we even left the hospital, I was already starting to worry about his feeding schedule. He seemed to try so hard that he would fall asleep. Then wake up a bit later, nurse himself to sleep, and on and on and on and nothing ever seemed to be enough. He had lost weight after birth, like babies always do, but he was taking way too long to gain it back. I supplemented with a bit of formula to make sure he would get enough to grow, and I figured that once he got a bit bigger, he would get better with nursing.

That wasn’t happening. Finally, the pediatrician took a closer look and noticed that he had a tongue tie. It wasn’t severe, but it was enough to make nursing difficult. They recommended I get it snipped. I was so hesitant because it seemed so scary and honestly formula isn’t a bad alternative anyway, but this was my last baby. I wanted that bonding, and I was determined to make it work. So we went and got his tongue tie snipped. It was so fast and he cried for maybe 2 minutes before nursing again and it was such a relief.

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So at about a month old, he was finally nursing long enough and strong enough to get as much as he needed, and I slowly weaned off the formula. I baked lactation cookies and drank beer and tons of water and got my supply up and I was so proud. Again, I got a big head and figured we’d be fine now. I’d nurse until he was a year and a half! Maybe even longer, who knows! And things went really well for a while. They really did.

Until he got his first tooth. I don’t know if it was just teething, or if maybe my supply dropped and he was frustrated, but the booger started biting me. He was only 4 months old, and I just couldn’t give up so soon, so I tried to hang in there. But he got another tooth and the biting got worse. I pride myself in having a high tolerance for pain. After all, I birthed all three of my children naturally, without any drugs or help at all. I figured I could handle some biting.

But I couldn’t. My body started reacting in ways I couldn’t control and it was overwhelming and scary. Every time I needed to nurse, I would feel like I was punched in the gut. My stomach would drop and my heart would speed up and no matter what I tried to do to calm down, it just got worse. I would latch him on, cringing the whole time, and then yank my breast out of his mouth if I thought he might bite or if he was almost done. This continued for over a week, and my reactions got worse. I became nauseous, and I was basically having a panic attack every time he nursed. Sobbing and everything. I just got these intense waves of fear and depression and it scared the hell out of me.

I felt like I was going crazy.

After a very emotional outburst, my husband convinced me that it needed to stop. I was a wreck and only getting worse, and with my mental health, we need to avoid as much bad as we possibly can. So I made the decision to pump instead. I did that for as long as I could, supplementing formula when I couldn’t pump enough. And for a few months, I made it work. Every week I was getting less and less from pumping and I was supplementing more and more formula, until I decided it was time to put the pump away forever. And honestly, I felt so free.

What really got me, was that about a year later, I learned about something that sounded very similar to what happened to me. It’s called D-MER, or Dysphoric Milk Ejection Reflex. It seems to be tied to the sudden decrease of dopamine in the brain during letdown. Most commonly used words to describe it are: anxiety, sadness, dread, angst, irritability, etc, etc, just a wave of all negative emotions. Although anyone experiencing it would experience it a bit differently, it’s the same underneath. And it is devastating. I think my anxiety disorder made it a lot worse and made me fear the crushing wave that I knew was coming. At the time, I thought I was just majorly overreacting to being bitten, which is bad enough to experience! But I felt so weak and couldn’t understand how a little pain could make me feel so low.

The worst part of all this is how alone I felt. I had never heard of anything like this before. I even read a bunch of pregnancy and baby books cover to cover(years ago) and I do not remember ever hearing about this. And it kills me to imagine other women going through it, thinking they are going crazy, or thinking they are failing their baby, that they’re a bad mom, and none of it is true!

I hope my story can reach at least one person who needs to hear it. Because I wish someone had told me.

 

Adulting with ADHD

First, I must warn you. This is not going to be a “how to” post. This is going to be a “this is so hard” post. To commiserate. No advice here. Sorry. There’s probably plenty of other ADHD bloggers with their shit (sorta) together though so… Okay, moving on.

First of all, I wasn’t diagnosed with inactive ADHD until I was 26. (It’s all classified as ADHD these days. So basically, Inactive means that the hyperactivity is in the brain, and Active means the hyperactivity manifests physically as well.) That means I struggled with school and life and everything for a long time and I never knew why. I’ve always had that there’s something wrong with me feeling and who would have thought that finding out that there was, in fact, something wrong with me would make me feel better! Well, not better, but understood I guess.

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Why? Because it erased my fears that maybe there was nothing wrong. Maybe I was just lazy. Maybe I was just kind of a waste of space. A waste of breathe as a person. But no, a diagnosis meant there’s an actual problem, and if not fixed, can at least be managed better than stumbling my way through life because my sense of direction has failed me again.

I can’t think of a single area of my life that my ADHD doesn’t affect. As a kid, I missed birthday parties because I totally forgot about them. I got bad grades on projects because they seemed so overwhelming that I procrastinated and then had to cram in a weeks worth of work into a few hours. Getting older didn’t change any of these things. What changed was the impact of my highly irritating quirks.

Now, instead of forgetting birthday parties, I would forget about a shift at work and arrive super late. I actually missed out on a job because my sense of direction failed me in the biggest way and I never made it to orientation. I get overwhelmed by bills and often pay late because I procrastinate on those now. And the brain fog? Well, let’s just say when other moms started talking about “mom brain,” I didn’t know what they were talking about because I have always been like this.

Forgetful. Absentminded. Lost. Overwhelmed. I. Am. A. Mess.

I can’t seem to finish a single household chore without getting distracted and starting on another. And believe me, getting much done at all is hard enough. Seeing a mess makes my brain shut down and not want to do anything at all. My view as I’m typing this is a desk with a billion unsorted papers scattered everywhere that I’ve been meaning to get to for…. forever.

And with my kids… Sometimes I’ll have to ask them to repeat themselves more than once because I just couldn’t focus on what they were saying. I am completely useless with my sons math homework because math has always been like an alien language to me. Recently, I missed an important doctors appointment simply because I forgot about it. And don’t even get me started on where my keys are because your guess is as good as mine. And biggest one, I am the worlds most annoying fidgeter. I think my ADHD pairs up with my anxiety on this one and I drive my husband crazy with my leg twitching and awkward hand movements and inability to sit still without moving my foot or my finger to trace an object across the room.

Mom-Meltdown

I am the worst housekeeper ever and completely unreliable in planning anything or getting anywhere on time. And believe me, it annoys me as much as it annoys the people around me. But I know now that I’m not alone. I’m not just lazy and useless. I have an actual medical diagnosis to explain why my brain is the way that it is. Hopefully soon, I’ll even have a fancy new prescription to change my life and make it better.

 

Pain and Parenting

A lifetime ago, when I imagined my life as a mom, I honestly thought I would be the most soft, loving, nurturing mother there was. And three kids later I am those things, when I can be. One thing I didn’t factor in, that I never would have imagined would play such a huge role in my life, was pain.

Like it or not, I’m a different person when I’m hurting. I have much less patience, less focus (which is pretty scarce to begin with, thank you ADHD), I get irritated easily and I’m much more likely to raise my voice. None of that really screams soft, loving and nurturing.

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As I write this, I am bundled up in my biggest blanket, desperately trying to stay as warm as possible while I take my painkillers and pray they kick in before my kids wake up. Winter is coming, and besides being a pretty awesome GOT reference, it rings true for me in acting as a warning. But instead of whitewalkers, winter brings me a promise that I will hurt more. The colder it is, the worse it gets. And if there’s rain or snow, that’s when it’s at its worst.

And although I know that kids are resilient and forgiving, and I apologize often when I get too angry, that’s not enough. They may forgive me, give me hugs and kisses and tell me they love me. But their behavior changes. My daughter is very sensitive and gets even more so during these times. My son expresses it outwardly, in explosive behavior. When upset, he screams or throws things, runs out of his classroom at school. Once in a while he will even hit another classmate or his sister. And although some of all this is because of my sons autism, and my daughters ADHD, I know I can’t lay the blame solely on that.

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I’m constantly trying to be better, but the mom guilt never ends. So tell me, if you deal with any sort of chronic pain, how does it affect your parenting? And if you’ve got any tips, feel free to share with the class, because I am very much still learning.

 

What Animals Mean to Me as Someone with Mental Illness

Ever since I could remember I have loved animals. And I wasn’t picky. I loved my childhood dog, but I obsessed over the wild and spent many years longing to move to Australia and marry Steve Irwin. (I was a kid, don’t judge me the man was amazing.) I would daydream about catching snakes and wrestling crocodiles, nursing a baby kangaroo back to health or pulling over on the side of the road and checking a dead possum to see if it had babies in its pouch, and you guessed it, saving the little guys. I know that seems extremely specific but it happened in one of his episodes…

As I got a little older, I started begging my parents for pets. I had a parakeet, then a hamster, and then my parents were fighting so bad the pets stopped for a while. After the divorce and years later I convinced my mom again and got a mouse, then later still a cockatiel. Only one of those pets died, the hamster that was probably already sick when we got him. But the rest, I was forced to give them all away at some point. It broke my heart each time.

So I went in another direction. I don’t remember which animal started it, but I turned myself into an amateur wildlife rehabilitater. From my early teenage years, then moving out of my moms house and in with my grandma, up until I was engaged and ready to move out, I took in whatever needed help. I mean, I’m not in Australia so there was nothing too crazy. Countless baby birds, a mourning dove with a hurt wing, a baby crow that was sick in some way, a baby raccoon, baby bunnies, and a baby squirrel that gave me a reputation at the ASPCA when I took him out of his cage to kiss him goodbye before turning him in. (Whenever I turned an animal in, it was because the SPCA or the vet had found a real, qualified rehabber to take care of them.)

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But to be honest, I didn’t only do this to help the animals. I did it for me too. Caring for animals is the most natural therapy for me and it helped me through years that I didn’t even realize I was not okay. And when that all stopped, because I started having kids and needed to focus on them, I didn’t even realize how much it was helping my mental health until it was gone. It felt like a huge part of myself died and I have gone without therapy for a long, long time.

Now, my husband and I rescued a giant German Shepherd who was sick and weak and sad, and he has grown into a happy, and very anxious, beautiful boy over the last two years since adopting him. He’s mamas big baby and I love him to pieces. And I gotta say, shoving my face in his fur and loving on him when I’m down really does help. So much.

Lately I’ve been in a depressive episode, and although I’m medicated and functioning well, I’ve been finding it hard to be truly happy and care about much of anything. Until I finally convinced my husband to let me get another pet. And ever since, I have been going nuts finding a tank and supplies and contacting a rescue group and it’s all made me so happy. And now that I’m just about done, and almost ready to go pick up my new friend, I’ve realized that this is what’s been missing in my life for so long.

So it’s time. I’m starting over, and sticking to pets for now, but this time no one will be forcing me to give my babies away. The rehabbing will wait until my youngest is older and I’m certified to do it the right way, but that’s okay. Because I’ve finally remembered my first therapy. My best, most natural approach to happiness and good mental health. And I am finally so excited to see where the next few years take me.

Halloween and special needs kids

I’ve heard so many grievances about kids and Halloween for years now and honestly I just don’t understand the big deal. If they’re a kid and they are trick or treating, just give them something yummy, a smile, and move on with your life. Same goes with teenagers because come on guys, they could be out making some terrible life choices, but instead they are holding onto their childhood a bit longer and participating in something innocent. Don’t complain.

But my major issue surrounding adults and Halloween is that everyone tends to forget about the special needs kids. Halloween can be hard for them. The scary decorations, the bright jack o’ lanterns, greetings from strangers and the excitement of all the other kids running around. Even just at home it can be stressful.

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I remember a few years ago, my husband and I didn’t feel like our son was ready to go trick or treating and he agreed. We still bought candy, gave him some, and dutifully answered the door when kids came knocking. But it was too much. After a while our son was visibly agitated and started melting down every time someone knocked on the door. He was looking outside and seeing all the scary costumes and with each knock he was getting more and more overwhelmed. So I wrote a note, telling kids to take a piece of candy and have a Happy Halloween, and I left it outside with the bowl of goodies. No more knocks, no more anxiety. (Believe me I was having just as hard of a time as he was. Anxiety disorder + people knocking on your door nonstop = bad news.)

The next year, he still didn’t seem ready, so I was prepared. I printed out a cute little poem about how our little pumpkin was autistic and got scared of the loud noises of Halloween. I asked for no one to ring our doorbell, and for them to enjoy some candy, and again have a Happy Halloween. And this time, it was better. No one knocked. No one rang the bell, and when people say the sign, they quieted down a bit. And this time, my son looked out the window and watched the trick or treaters walking down the street with curiosity mixed in with the anxiety.

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Last year, when he was 6 years old, was our first year trick or treating. We put out our bowl of candy and set off on our own adventure and honestly it went well. We got a few people asking what my son was dressed up as (he wasn’t because he didn’t feel comfortable in a costume), which he got upset about, but our daughter, 4 at the time, was quick to step in and distract people with her sweet charm and adorable Sheriff Callie costume. So all in all, it was a good night. My buddy was polite, and most of the time said thank you without being reminded. He ran to each door with excitement and didn’t complain about what he got. I was so damn proud.

But I know in a different area it could have gone different. I’ve heard stories of adults demanding to know why the child wasn’t wearing a costume, or getting angry when the kid wouldn’t say the right words, or wouldn’t talk at all. Kids literally being bullied by adults for not behaving the way they’d expect a “normal” kid to behave. And that is unacceptable.

These kids might not be comfortable saying trick or treat. They might not be in costume. Costumes are itchy and different and different is hard. They might not be able to look you in the eye. They might forget or be too scared or shy to say thank you. They may get upset that the candy you give them is something they don’t like. But guys… This is not their fault. It’s not about you in any way and it’s not personal. They’re just kids, trying to enjoy an innocent tradition, just like other kids their age.

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So remember, the kid who won’t look you in the eye, or say trick or treat; the kid not in costume, or the one having a meltdown instead of going door to door, they’re all so special and they are trying so hard. And they deserve a good time just like everyone else. So give them an extra smile, don’t put any pressure, and if they aren’t in costume, don’t mention it. Just wish them a Happy Halloween. It might not seem like much to you, but I guarantee you, their parents will notice and it will mean the world to them.

Why I willingly gave up bus privileges

As of a few days ago, I am officially a school drop off line mom. And I’m good with it. I really am. Here’s why.

Last year, my son was in first grade, loving school and learning enough to make his mama feel a bit dumb. But, as with most kids with special needs, things weren’t that easy. He had a lot of behavior issues in and out of school and they weren’t improving much. Especially on the bus. The school he goes to is 15 minutes away from our house, so the school was adamant that he take the bus. Partly for some sense of routine, partly because this is an amazing school and they want to make things easy on the parents if they can.

But things weren’t great. The bus driver was nice, the bus aide was a total sweetheart, but they were no match for my son. He would throw things, get up and try to move seats or cause trouble, scream and hit the aide if he got upset. So the school timidly approached me about getting my son a harness. If you don’t know what I’m talking about, imagine the kind of harness a dog might use, except instead of a leash on the back, the back would be strapped into a special seat belt attachment on the bus, so my son wouldn’t be able to get up during the ride.

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I think many parents would say no, and I could tell that they were expecting me to be upset. But if he needed this to stay safe on the bus, and keep everyone else safe, then I wasn’t going to complain. So we got the harness.

It didn’t help with his behavior though. Last year was a struggle, and he was written up multiple times, although I know they hated doing it. And this year? We tried to start off school with no harness, to see if he could handle it. He lasted three days before we all agreed to put it back on. But his frustration with the bus was becoming worse and I was starting to see that his behaviors were not just out of nowhere. I started seeing patterns, and reasons why he would get upset. If the bus changed, if it looked a bit different, if the driver or the aide was out and someone new was there, if another kid wasn’t on the bus like usual; there were a million variables that seem small to us, that bothered my son in a profound way. And they were not anyone’s fault, or in anyone’s power to fix.

The only solution I could think of was to ditch the bus completely. I might not be the most organized person, but I’m Mom. I don’t get sick days, so I would be the one there to drive him every day. In the same van, in his same booster seat, with the same kind of music, and his sister next to him. And, better yet, no harness.

So yeah, it takes a full hour out of my day to drop the kids off and pick them up later, but if it helps my kid, I’m good with that. I really, really am. This is why I became a stay at home mom; so when my kids needed me, I would always be there. And we are already seeing an improvement in his mood and behavior in and out of school, so I know I made the right decision. In the end, all that matters to me is my kids and how they feel. And he’s already feeling much better.

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Ain’t no rest for the anxious

Sleep. That elusive lover that taunts us all day and hides from so many of us at night. As someone with depression, ADHD and a general tendency for laziness, I enjoy my sleep. So much. But it was only recently that I realized how important it is. And oh, does it feel good.

I don’t remember when I started having nightmares. I think I’ve always had them at some point, but they used to be infrequent enough that I’d just complain about a bad night and stick that IV of coffee in and go on with my day. Just kidding, I don’t do an IV drip of coffee. That’s crazy. I inhale it, obviously. 

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Anyway, some time in the past year, maybe two years, I don’t know, the nightmares kicked up. I ended up having so many that I was woken up all throughout the night, heart racing and mind reeling. And this continued for so long that they stopped truly bothering me. I’d wake up with these horrible images in my head, and instead of being afraid of going back to sleep, I’d just mentally shrug it off and snuggle back into my pillow, only to slip right back where I left off and continue on with the murder camp or zombie apocalypse or whatever hell my brain had conjured up that night. 

Through all this time, I thought my sleep was good enough since I was technically in bed for 6-8 hours. I thought that was pretty good. But I realized that it had been months since I had lost a single pound, all the while on a keto diet that had previously helped me lose 40+ pounds. I wasn’t screwing up my diet, so why couldn’t I lose weight? Add in the fact that I was permanently exhausted, and my husband and I were worried there was a problem.  He was convinced that my thyroid was failing. 

So I saw a doctor, got some blood work done, and talked to my psychiatrist in the meantime. They both asked how I slept, and both times I said something like, “Good. I mean… I do have a lot of nightmares. They wake me up a lot. And pain wakes me up sometimes… But I mean otherwise….” Both doctors, without even knowing of the other, told me the same thing. I needed better sleep. Not more hours, just better sleep. 

In the end, my blood work came back excellent, besides telling me that I am anemic, which explains part of the exhaustion, and I’m working on that through diet and iron supplements. But the major factor here came down to my brain. My psychiatrist gave me a new prescription for an anti-anxiety med and told me to take one every night right before bed. And both doctors also told me to take melatonin to make sure I’ll sleep.

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And the craziest thing happened, I started sleeping better. My dreams are still weird as hell but they’re no longer nightmares, and no longer wake me up. And I swear, as soon as I started sleeping actual REM sleep, I started losing weight again. One of the doctors, I don’t remember which one, maybe even both, explained that it doesn’t matter how many hours you’re in bed. If you keep waking up and you never actually get into that deep REM sleep, you will not wake up rested. Your body doesn’t just need you to be in bed. It needs the good stuff. 

And who’d have thought my brain would have been the culprit for all this!? Oh, that’s right, all my doctors. I should listen to them more. 

Miscarriage and Marriage

It’s been 6 years. I still remember that time of my life very clearly and it still kicks me in the gut. But October is the month to talk about it. So I’m going to join the brave souls who are speaking up. I’m going to talk about my miscarriage.

I don’t remember the details of the beginning. Like the day I took the test. I faintly remember that the line was not strong, but it was a line, and I was thrilled. I estimated that I was probably around 6 weeks or so, so I made an appointment at a local clinic since we didn’t have insurance and they’d help with the first ultrasound. That two weeks could not come soon enough.

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I had all the same symptoms as my first pregnancy, but much less subtle. I thought I was lucky and I’d have it easy this time. I was smug. But then the big one, the nausea, started to taper off. I was happy it did but it scared me. That was when I first started wondering. But still, I pressed on and counted down until I could see the little bean for myself.

The day came. My husband was running late so we met up at the clinic, me toting our one year old. They had me take a pregnancy test, just to make sure they wouldn’t be doing a free ultrasound for nothing I guess, and it was faint again, but still positive. So into the room I went. I stripped from the waist down and relaxed myself as the doctor inserted the wand, happily chatting and looking for what we were there for. Then she stopped talking. The smile on her face faded, and the hand that was reaching out to turn on the sound stopped and pulled back.

“I’m so sorry, but I’m not detecting a heartbeat.”

The next few minutes she gently told us that the fetus was only measuring at 6.5 weeks and she didn’t know how long it had been since…. She mentioned going to the hospital for a D&C if my body didn’t let it go naturally soon. I didn’t hear most of that. I was too busy trying to breathe and control my heart rate so I didn’t lose it in front of a stranger.

I barely made it out to the car, tears falling as I strapped my son into his carseat. Turning to my husband, I looked him in the eyes and lost it. Full on panic attack in the parking lot of a pregnancy clinic. My husband tried to calm me down for a few minutes, and then said he would meet me at home and he left. He just left. I sat in my car for I don’t know how long crying and thinking that it couldn’t be real, and how my husband just LEFT me there and….

I was a mess.

Turns out my body held on just long enough for me to get that ultrasound picture, and that night, the process started. I couldn’t deny it any longer. I was having a miscarriage. Me. This doesn’t just happen, right!? I must have done something wrong or not done something I should have done or… I didn’t know what to blame or what to think. In my grief, I got more and more angry, and in the end I found somewhere to direct my anger. My husband.

While I was spending every spare second thinking of what might have been, crying my eyes out and longing for answers, my husband just went on. He went to work the next day, the gym a little more often than normal, and went to bed early. He was avoiding me.

The more time went on, the more angry I got with him until I almost hated him. That was our baby, how could he be okay!? We grew further and further apart and neither of us seemed to have any desire to fix it. I don’t know what stage of grief I was at, but at some point I fell into a deep depression. The more I hated my husband for not caring, the more depressed I got, but every time I got a little lower, I started to feel a little less. I was starting to feel everything less. Less angry, less sad, less happy. It was all just fading away and I welcomed it. 

Then I finally got the perspective I needed. I overheard my husband on the phone with one of our church pastors, telling him that I was pregnant. I stopped where I was, out of sight, and listened. He told the pastor that we had lost the baby, voice breaking on the word baby, and then he started sobbing. It took him a few minutes to get himself together to finish the conversation and I spent that time in a whirlwind of emotions.

There was anger: How can he talk to the pastor about it but not ME? It happened to both of us! I’m the one who physically lost the baby!

There was confusion: I didn’t think he cared at all, why is he crying now?

There was relief: Maybe I’m not the only one mourning.

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And finally, it hit me. He had been mourning the whole time. He was just as broken as I was. But despite the stereotypical manly vs womanly ways of showing grief, we had different childhoods and upbringings and his way of dealing with something that hard, something that could break him, was to turn it off. He needed to not think about it. He needed time to process it without pressure and without guilt. And I had not given him that at all. All I had done was make him the bad guy in a situation where there was no one to blame, and no winners. We both lost something huge, and I got angry because my husband didn’t grieve the same way I did. I felt like the worst person in the world. 

So I went in and just sat in his lap and hugged him. We cried together, and I don’t remember if we talked at all, but I felt a change then and I hope he did too. I wasn’t angry anymore. From then on, I took his cue and I didn’t talk about it to him. I knew he needed time, so I let him have it. 

And we did talk about it eventually. When he was ready, we talked about whether we thought the baby was a boy or a girl, and agreed we both thought it was a girl. (It was way too soon to tell, and we went with our gut, that’s all.) We gave her a name and I often visited the spot in the backyard where I buried her. 

Now, we can almost talk about her without tears. Now we imagine her waiting for us in Heaven, and we have imagined what she would look like today. I think she would have had curly light brown hair like I did as a little girl, blue eyes like her daddy, and the cute little button nose that our next daughter has. Her name is Kaelyn Anne and we will never forget her, even though our time with her was short. 

But the message I want to get across specifically is this. Going through a miscarriage is one of the worst things someone could ever experience. Don’t do what I did. Don’t shut out the person in it with you. And remember, people grieve differently. Respect that, both of you, and stick together. Your marriage deserves that. You deserve that. And you are not alone.

Advice for the new special needs parent

So you’ve just gotten a diagnosis. You might be scared or worried or just blank on what to do or where to go from here. I’ve been there. Three times. I get you. So let me help.

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First and foremost, breathe. Your child is the same child they were before the diagnosis and getting that diagnosis is a good thing! Because now you know more and that means better understanding their struggles and their quirks that may baffle you.

Second, your child being “different” is not a bad thing. Things might be hard right now, but as they grow you will find things about them that you love ferociously, and in doing so, realize those things are part of their diagnosis. Part of them. We don’t love them in spite of the diagnosis. We love all of it.

Also, don’t buy into the whole “treasure every part because they grow up so fast,” BS. It is okay to get frustrated. It’s okay to get overwhelmed.

It’s okay to say “I love my kid. But I do not love meltdowns.”

Finally, take every part of you that cares about what other people think of your parenting, and throw it out the window. Your parenting will not be the same as neurotypical parents. Sometimes taking advice from people who are in different situations, although well intentioned, can cause your child and your family more grief and trouble than following your gut.

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YOU are the parent. YOU know your kid. Listen to experts and doctors and go for therapies and all that, but not blindly. There are tons of resources and many adults who used to be that special needs kid who can give insight on what was good and bad for someone like them.

And mostly, breathe and hug your baby. Whatever their diagnosis is, there’s always something beautiful in it that just adds to the wonderful person they are already turning into. There’s a ton of us going through the same thing. You are not alone. And we got this. 🖤