Seizure/Sympathy Awareness

Malachi has an in-home 48 hour EEG this week. Our guy hooked it up around 11:30, so we spent the afternoon out and about to kill some time. As usual, I was struck by how different people looked at us. Sad eyes and sympathy everywhere you turned.

The machine is sort of obnoxious, and the back looks very robotic. It looks like a lot more than what it is. Plus, he had this sweet Ana and Elsa backpack to carry it in (because we have no other small backpack) so maybe he was getting some sympathy for that instead.

I always feel odd after going out in public with the machine. The very first time I thought “wow, so this is what it feels like for the world to believe your child has an injury”. The first time it felt kind of nice to get sympathy stares instead of people looking at us like we are odd. Or someone asking him a question and thinking hes rude for not answering.

Except my son is sick when he isnt wearing the machine too. The machine is to monitor how many seizures he is still having so we can adjust medicine.

When we first found out that Malachi was having seizures, there was a lot of guilt. Why hadn’t we caught this before now? All the times I had sat and wondered what was causing these behaviors, all the times we strapped him into sensory devices, the time in his short stint at preschool when they strapped him to a chair (i pulled him after that), all the times I became frustrated over his hyperness and lack of sleep. All of that guilt hit me pretty hard.

That entire time, it was seizures. The seizures on the EEG correlated with the extreme hyper episodes, and also with the night wakings. The dramatic decrease in hyperness once we started treating the seizures was unbelievable. Nothing he had ever done was his fault. It was medical.

When you think of a seizure, what do you think of? Someone on the ground convulsing? Someone becoming unresponsive for long periods of time even if you pinch them? That’s what i thought too. The fact is, seizures can present themselves in a multitude of ways. You could actually have a seizure while talking to someone and neither of you know it happened. Some seizures present themselves as the person just aimlessly waking around the room. Sound familiar?

This is why it is important to show sympathy to all children. If we would have locked Malachi in his room amd let him cry to sleep, he would have been in his room having seizures alone. If we would have continued preschool, he would have sat in a chair, strapped in, having seizures.

Realizing that so many kids probably have undiagnosed epilepsy, or that kids cry alone in rooms seizing, or even that kids get spanked from behavior that resulted from a seizure, is a really heavy emotional load. It could happen anyones child, it did happen to mine.

Please always give your children the benefit of the doubt. Dont let society tell you your tiny child who functions on basic biological needs is trying to manipulate you. Always assume they are, in fact, crying for a reason. If your child has behavior that seems out of their control, please demand an EEG. Seizures are so misunderstood. Some kids go years undiagnosed, don’t let your child be one of them.


Getting Out Of Limbo 

One of our favorite past times is going in our bedroom in the dark and playing with flashlights.  Malachi and Olyvia like to shine them on the wall and make movements with their shadows. When Malachi isn’t flaring, he sometimes will copy my bird shape with his hands. He will hold the flashlight facing the wall while we make cool puppets. Both kids really enjoy playing with flashlights,  and it’s fun to have an activity we can all do together. 

When Malachi is flaring,  he will ask to play with the flashlights,  but when we go into the room and turn off the lights, suddenly Malachi isn’t shining the flashlight at the wall anymore, he is laying on the floor humming and shining it directly in his eye. He is obsessive about this, and no matter how many times you redirect it goes right back to his eye. We have to end the flashlight game early, because he can’t control his obsession with shining it directly in his eye. Both kids are crying.  Olyvia is crying because she doesn’t understand why just a week ago we could play the flashlight game and it was fun, but now this week we cant.  Malachi is crying because he doesn’t understand why last week he had so much self control and now this week he has none. So then he resorts to stimming to cope with the fact that he is randomly out of control of his body and doesn’t understand it, and can’t ask questions.  

We have mistaken a serious illness for autism. Malachi’s immune system doesn’t work right, immunocompromised if you will, so there are triggers that cause his immune system overwork and attack his brain. We beleieve chronic undiagnosed strep is a huge trigger, but it could be anything. Pollen, mold, certain foods, a plethora of viruses that never left, dust, bacteria, anything at all that could potentially hurt a weak immune system. 

When he isn’t flaring, Malachi is the sweetest kid on earth. He cuddles, plays appropriately with all of our toys, laughs with Olyvia, sleeps well, rarely stims, pays attention to what we are doing,  and will even occasionally try a food he hasn’t in a while. A lot of times I will say “I swear if he was talking I’d say he’s typical right now”

When a trigger is present,  (which is frequently because we just started addressing infections and paying attention to patterns) Malachi loses control of himself.  He can’t sit still, he obsessively eats non-food items (PICA), he pees frequently, his SPD is really severe so he acts like his clothes are burning him and he can’t keep them on, he refuses to eat most things, he has a hard time falling and staying asleep, he gets terrible stomach and head aches, sometimes when he pees he acts like its burning him, sometimes he gets so worked up he accidently will bite one of us.( That’s the worst, because he acts ashamed afterwards because he doesn’t have an aggressive bone in his body) He literally turns into a completely different child over night.

Sometimes this lasts days, sometimes it will last a week or two. Our life has to flip flop, because things we could easily do the week before, we cannot this week. I can’t stand leaving the house while he is in a flare and people acting like he’s crazy,  or out of control,  or weird.  He cannot control himself, his immune system is attacking his brain. He needs love and he deserves pity, not repulsion.

We have become withdrawn, because we have to find out what triggers him to have these reactions so we can give him proper medicine. I believe his initial onset of PANS/PANDAS was before he was able to talk, and he has been progressing/regressing on and off with the triggers ever since. Now I feel he knows what he would like to say, just isnt sure how to make himself say it; his body doesn’t cooperate. Now that he is older and more aware, I think there is a lot of anxiety for him when it comes to talking. We set up a mirror in the living room and I see him mouthing words to practice often. 

Unfortunately, he is not speaking yet, which means we have to observe him and record everything if we are ever going to find his triggers. We have to heal every health issue we can find, because he cant tell us he has a stomach ache. He can’t tell us he has a headache. 

We are working so hard. Justin works hard to provide for us and then comes home and jumps right in with me. We stay home most of the time and try to be as relaxed as possible. Olyvia is quite mature for her age, and her and Malachi have a pretty decent relationship. It helps we stay together as often as we can. We actually have a lot of fun together most of the time, it’s just the flaring that is difficult because it is the most depressing thing I’ve ever seen and we feel horrible for him.
This is one of the most unorganized blogs I’ve ever written, but also the easiest way to tell everyone that cares why we are keeping to ourselves a lot right now. Sometimes I feel like I’m treading water in the middle of the ocean, but I know we are so close. Since we have started treating the strep with antibiotics we have seen a lot of improvements in him. I know that we will continue to see more! 
Thank you all for the support.  💙

Phase Two

It’s been a while since I’ve written a blog that is strictly a Malachi update, and I thought now would be a good time because we just had a doctor’s appointment with our neurologist and learned a lot more information.

It seems we have made the transition from “biomedically treating autism” to “there is something  actually seriously medically wrong with my child “. Before, my understanding was that autism had a lot of underlying contributors, so you just work at them one by one and you see what makes a difference and what doesnt. Some parents start probiotics and their kid begins to talk. Some stop gluten and their kid quits stimming. Some parents begin B12 injections and their kid loses a diagnosis. The underlying cause is different for everyone,  so essentially you treat each thing and see what improvement you get until they are healed. Some people do testing, some people purely go by Behavior. There is a science to this, and it isn’t made up. 

So we were doing all of these things with Malachi, and we started to see a lot of improvement. It seemed that he was following directions and he seemed generally happier than he did when we started. (Which I now believe was mainly due to the change in his diet.)  He also would say a few words here and there , and he was really progressing in therapy.

It was frustrating though, because we would see so many improvements, but then suddenly we would have a week where it felt like we jumped back two years. He would be stimmimg more, would refuse to do things in therapy, would become obsessive over Sweets and his iPad, would virtually seem like we couldn’t reach him. It was here that my PTSD would kick in, and I would start freaking out thinking that we haven’t even done anything and that something we were doing was causing him to go backwards .Then suddenly it would go back to normal and he would act fine again. So then I would think okay, it is working maybe this is just die off maybe this is just part of the process. Then sure enough, we would go backwards again. So this puts a lot of emotional strain on us and our family. Thinking your kid’s getting better and then he regresses, then you think he’s getting better and then he regresses. It’s really hard to know what the right route is to take, because I have a good understanding of what we’re doing, but at the end of the day the thought creeps and that I’m not a doctor. But unfortunately trusting a Dr is mainly what got us into this situation in the first place, so I have to be my child’s advocate and I have to be as knowledgeable as I possibly can be. Which is where google, Facebook groups, and friends of mine come in.

Then, just when I was about to lose my mind and I wasn’t sure what to do, Malachi had his first grand mal seizure. We took him to the ER and found out that he had high amounts of brain activity on his EEG. Then, we started dealing with epilepsy. Initially we believed that was his first, but upon further research we found that he probably had been having seizures for a long time that we weren’t aware of. There is a type of seizure called an absence seizure, where the person can simply stare off into space and be having a seizure. Actually, if you research types of seizures there are a lot of different kinds that a child could have that you would not even know about. Which, with a child who is nonverbal, that could be easily missed. So we started him on a seizure medicine, and we got an appointment with an integrative neurologist in Pontiac. 

So they did a bunch of blood test, and sent him home with an EEG strapped to his head that we kept on for 24 hours. Today we went back and got the results of everything and now I finally have an understanding of what is going on with Malachi. 

Sometimes in the evenings Malachi will randomly get extremely hyper. I’ve tried limiting the TV or leaving it off entirely, I’ve tried doing quiet play, I’ve tried making sure he eats no sugar whatsoever after a certain time. I’ve tried to swing him in his therapy swing, I’ve tried weighted vests. We have tried melatonin, nothing has worked. Then also, sometimes he will jump up in the middle of the night between 1 and 3 a.m. extremely hyper when he didn’t even go to bed until 10 the night before. Which obviously is not enough sleep. Again, nothing we did made any difference in this. Blackout curtains, fans in the room, White Noise everything you can think of. Today, our neurologist showed us on the results how at those times when he had the EEG on and those things were happening, his brain activity was off the charts. I could see on the results normal brain activity all night long and then suddenly at 1 a.m. it was all over the place.

What this means is, Malachi has a genetic susceptibility that causes him to have a weaker immune system. So at some point in his life he contracted a virus that he couldn’t get rid of. The virus may not show any obvious signs that it is there, his nose doesn’t even run when he has a sinus infection, and it flares up at random times, causing his immune system to overreact, attacking his brain. Which is where all of this increased activity comes from, And also why it didn’t seem like anything we were doing was working, because nothing was getting rid of this virus. That’s where the sensory processing disorder comes from, and that’s why it waxes and wanes. 

Right now we are not sure what the virus is or how we are going to treat it. The first thing is to stop the abnormal brain activity, so it doesn’t result in more seizures. To do that we have to increase his seizure medication. Also, to clear out his sinuses because there’s probably lots of stuff that’s stuck in there that’s been there for quite some time. We’re stopping most supplements, and adding a couple different ones. Just to get him to be sleeping better and get him in a good mood so we can begin treating him.

Do I think everything we have done up until now was a mistake? No I do not. I just think that maybe it wasn’t as effective as it could have been, because the underlying virus does not allow his immune system to get better. So, we must get this brain activity under control before we can heal him. Which is what we are going to begin doing. 
Do I still feel vaccines played a large role in my son’s autism? Of course I do. Weather the virus came before the vaccines or not, his immune system was weaker and we didn’t know. Which means that he wasn’t able to handle the insult the vaccines had on his immune system. Whether it was busy fighting a virus and that was why, or whether it was just too weak to begin with, he had reactions to the vaccines because his immune system couldn’t handle it like a normal person. Every single insult he has ever had to his immune system since then has made his health worse.

Either way we’re not giving up the fight. Right now, getting him healthy is what’s most important. Which is why we decided to put off therapy, and even School. Keeping him home with me and keeping him comfortable while we treat him is the best thing for him, we believe. Also, it just gives me the chance to be a mom again and take care of my kids. Play with them, do normal things instead of running around all the time. Take a step back while we address Malachi’s health, and possibly mine too. 

One thing that I want to reiterate is how important it is to trust your instincts when it comes to your children, and never be afraid to dig deeper. We didn’t know Malachi had a weak immune system until it was too late. If your gut tells you there’s more to what your doctor is saying, dig deeper. Don’t let someone tell you that using Google is stupid. Don’t let someone try to convince you to just listen to your doctor and not research yourself.  Every single thing you do matters. Don’t let society, or anyone else, tell you how to care for your kids. Love them, advocate for them, and let them be who they are. 

Until next time …..💙


I’m Sorry 

I’m sorry we didn’t make it to your kid’s birthday party. 

We had full intentions to go, honest . Except the night before Malachi or Olyvia (or both) took late naps after a long day of therapy and were up until midnight bouncing off the walls. Justin and I probably spent the entire night shooting dirty looks at each other if the other one so much as looked like they were even trying to sleep.

Then, because of whatever reason, the morning of the party one of our kids was up at 6 am. (After staying up until midnight,  mind you). So, not only are we operating on very little sleep, but now we are also stressing out because our kids didn’t get near enough sleep which will either result in them eventually losing it or another late nap. Which means repeating that entire night, again. 

Not to mention, my kids and I all have celiacs disease. Which means even little amounts if gluten really messes us up big time. So worrying about what is going to be available to eat is huge. Sure, we bring our own stuff everywhere we go and we don’t expect anyone to make us anything special, but will there be a massive tray of cupcakes sitting at a table that’s eye level to my son? Will I spend the entire hour or two that we are at the party trying to keep him away from the cupcakes? Because most likely that is the case. And I’ve dealt with it at enough birthday parties to know that I’m really not trying to do it again.  Especially after a late night/early morning. 

I’m Sorry we didn’t make it to the family gathering 

Let me start this one off by saying that, contrary to what a lot of people may believe, we really truly want to attend these gatherings. It isnt some ploy that we come up with to get out of socializing because GOD KNOWS WE NEED SOME FREAKING SOCIALIZING. 

However,  I have also been to many family gatherings and I know how these things work for us. People try to talk to us and we have to run away after half a sentence because one of our kids is, again, going for the cupcakes (or whatever desert you can think up). Or running out the door. Or trying to tip over the tv. Or falling off the table and bashing their heads. Literally Justin and I have to each take a kid and chase them around the entire time we are there which means zero socializing and a lot of physical activity. Why? To make an appearance? So people know that we were there? So they can get a glimpse of our kids? 

Here’s an idea come over to our house. Then you can see the kids in their own environment and they probably will actually pay attention to you. Then you can actually have a conversation with us instead of watching us chase them around or hold them while they cry. It’s miserable for them, and it’s miserable for us. 

Also, Justin works. He works a lot. (Somehow he works a ton and it’s still not enough but that’s another blog post) sometimes if we want a whole day together we have to request it off. A lot of times, we can’t afford for him to request it off. Most of these events he has to work. And No. Way. In. Hell. Am I doing everything I just mentioned alone.

I’m Sorry I Finally Quit Putting Up With Shit From You. 

If you are one of these people,  I apologize. I spent my whole relationship with you putting your feelings ahead of my own. Forgiving you for lying amd manipulating. Forgiving you for flaking when I needed you most. Putting up with dramatic situation after dramatic situation because I really cared about your well being more than my own. I really was willing to let you suck the life out of me if it meant you were okay. 

Well, this year I realized I need to be well In order to run a happy, successful household.  This last year I’ve stood up to the masses. I’ve stood up to doctors. I’ve been looked in the face and told that my son’s medical care was not good enough and that I was “confused “. I’ve chosen a path that is so overgrown that i need every ounce of strength I have to get through it. 

Which means there is no room left for you. 

You we’re sucking valuable emotional strength from me that I need to emotionally support this family. I spent a lot of my life loving you and trying to be there for you, and I just can’t any longer. 

I’m sorry I didn’t answer your call

These days Malachi is beginning to imitate Olyvia. Which is awesome!!! Except Olyvia is in a very serious attention seeking stage. She’s going through a lot of heavy emotions, and she really needs a lot of attention from me, and she really needs a lot of help working through those emotions. So my days consist of her constantly testing the waters. If I even take my attention off of her for a few minutes, she’s doing something naughty to try and get it back again. I know this is normal, because I remember Malachi going through  the same stage at the same age. However, now that she’s doing that and now that he’s starting to imitate, he is also doing all of these attention-seeking behaviors. So in reality it’s like having twins.

Which means talking on the phone is quite literally impossible most of the time, and honestly I feel bad doing it. I spend so much time on the phone with doctors, giving and measuring supplements, organizing and prepping food for special diets, doing dishes because I cook everything,  and attempting to maintain a relatively clean house that I feel guilty being on the phone ! All of those things I must do and giving them attention while doing them is pretty difficult. So ignoring them even more while I’m on the phone with you is not something that I’m going to do. Not often anyway. 

I know that it may seem like Justin and I have became completely unsocial in the blink of an eye. I know it may seem like our absences are “convenient ” or “planned”. What you must understand though, is nothing about our life is convenient or planned. We changed quickly because our life changed quickly. And all we’re doing is trying to manage it the best we can. Please know that we do feel guilty about the things that we miss. We do feel guilty about all of the decisions that we make that may negatively affect someone outside of our family, But also know this: our family must be our number one priority at this moment in our life. Maybe one day we will be able to do all of those things again with ease. Maybe one day we’ll be Social Butterflies like we both secretly long to be, but at the moment our place is here at home. 

As always …..💙💙💙 

My Exitus

Last year we were rocked with the news that our child was sick. We grieved the loss of the life we always thought we would have, while trying to adjust to a new one. I learned a lot about myself last year, but this year, I’m learning a lot about you, society. 

My son is non-verbal, which means that he does not speak in words like you or I. I have learned that, to society, this means he simply has nothing to say. Furthermore,  people believe it must mean he has no significant thought processes, no yearning for communication.  This couldn’t be further from the truth. 

Society has became so busy, and so reliant on speech and media alone, that we have lost our ability to pay attention to detail. You say my son is refusing to communicate with you, but while you were on your phone you missed the eye contact and half smile that spoke a million words. While you were busy talking to someone else, you missed my son say his own form of a word.  You missed that he was looking at you and trying so desperately to tell you something.  While you were busy trying to snap photo after photo,  you missed that he looked right into his sister’s eyes and smiled. 

All we are is media. I’m guilty of it myself! Facebook is set up so that we are able to see whatever we want to see. If we are curious about war and politics,  that’s all our feed is filled with. If we are into debating vaccines, that’s all our feed is filled with.  As your interests change, so does your feed. You become angry and hostile about things you want to be angry and  hostile about. You literally create your own world, we all do, that we believe is truth. Then, we get caught up in it. 

Children are so primal. They learn so much about the world before they ever even learn to speak. They learn quickly that we always have a phone attached to our hand. They learn quickly that, to get us away from our phone, they must act out. They must misbehave to gain attention that we should give them without question, but don’t because we are sucked into media instead. Our minds are clogged with the the five different conversations we are having on messenger.  We are trying so desperately to be polite and social and converse with our friends online, we snap at our kids for trying to play with us “because can’t we have just a little time to ourselves?!” In reality that time is all day. That conversation drags,  all day. 

For what?! Why? For us to be stuck in a world that we create? For us to be in constant communication with people that we barely know while we ignore the ones closest to us? We operate under the guise of “advocacy” and “sharing and gaining knowlegde”, but for what price? Is our hunger for more and more knowledge really worth the strain it puts on our relationships? Is it really worth what it is doing to our kids? 

We are addicted. All of us. We share every waking moment of our kids and our lives on media so that we get likes and comments. We all have our heads bent down staring at our phones, watching YouTube videos while the world around us deteriorates and we dont even notice! We post about wanting to help the world and wanting to spread awareness for certain things,  but what are we actually doing to help? How can we be helping when our heads are in our phones?  

Our houses are messy because we read blog after blog about how it’s “Okay to let the house go” because we just have “no time with the kids” but what if you took all the time you spent on your phone in a day  and spent that same time cleaning? Your house would be organized and in turn you would be happier. 

Why are kids entitled? Why is this generation of children the “worst we have ever seen”? Everyone cries that we don’t spank them enough and that’s the problem,  but I beg to differ. The problem is,  they are ignored. They don’t know how to be social because no one has ever taught them.  They have grown up attached to media! Parents want to be on their phones, so they turn on the tv for thier tiny babies and then eventually buy thier kids their own phone.  These teenagers have grown up living in their own social media world that they have created

 What if, instead of arguing on Facebook, instead of replying to comments,  instead of checking our Instagram feed, instead of texting all day long, we took all those oppportunities to teach our kids? What if we had all that time to clean and organize our houses? We could take our two year olds and give them a broom and take a half an hour to sweep the floor. Instead of having five quick minutes and then yelling at them for getting in the way. 

I love updating  everyone on our family. People care, and I love that.  However,  I’m sick of people just caring online. What about in real life? What about coming over and seeing for yourself? I’m done with it. I want to go back to the basics. I’m trading in my “smart” phone for an older phone. We are going to eventually acquire a computer so we can have access to the internet once in awhile, but not at our finger tips. Unplugging is the only way I feel we could ever truely be happy. The only way I can be the absolute best parent I can be. The only way I can give my family the attention they deserve. 

If you are curious about how we are doing, schedule a time to come over! Call me. I want to communicate a more natural way, and trust me I want my kids to be social 😉 

I think people are amazing, I just think we have lost our ability to be free. We are bound by media and it’s impossible to live our lives. Let it go. Let yourself be free. 💙

To the House (and Woman) That Built Me

For so long I have wanted to give you the credit that you deserve for the impact you have had on my life. The part you played has always been silenced so we could appear to be a “typical” family. I have never publicly given you gratitude for what you have done for me for fear of hurting the feelings of others. Today, I am giving that to you, Granny. 

You cared for me as if I was your own from the very beginning. All of my favorite memories of my childhood were with you and Pa. Camping on the infield, pulling sleds behind the fourwheeler, running wild in the field without shoes. I remember when I was young and we lived with you, I would watch my mom pull out at night in my own bed and then sneak into bed with you. I had a different life than most growing up, but I always knew I was loved, and that is because of you. 

I remember when all the cousins would come over and stay the night, and you would make us all a huge breakfast in the morning. I remember when we came in from sledding you always had brownies and hot chocolate ready for us to eat. I remember being so terrified of Pa’s speedboat that we would just float all the way from the boat launch to the island. You guys would do it with smiles on your faces, even though I knew you were dying to go faster! I remember trips to cedar point, and Pa carrying me through the haunted house when I was way too big to be carried because I was terrified but we had to go through. I remember when I was young I was afraid of everything, particularly being alone, and you guys never left me alone. Ever. 

Granny, you are the single only person in my life who has stuck by me the entire time, no matter what.  Since the beginning, it has always been you. No matter what I did, or what I said, you were always there to cheer me up. When I ran away from my mom’s house at 17 you supported me because you understood. When my relationship didn’t work out you were there with open arms and a bed for me to sleep in. When I took too many ativan and ended up in the hospital, you nursed me back to health on your couch for an entire week. I rememeber that was always Pa’s dinner spot on the couch, and when I woke up in the middle of my stupor he was eating his dinner next to me on the floor. 

I remember when my drinking was at its lowest point, you always were checking up on me. You called me an obnoxious amount of times when I wasn’t home, even though I told you not to. Even when I was mean and yelled at you, you still called me to make sure I was okay. When you found all those empty bottles of whisky and vodka under my bed, you didn’t yell at me, you didn’t kick me out. You just picked them up, threw them away, and listened to me with an open mind. Then you offered me your car to take to substance abuse counseling because I wasted all my gas money to fule my addiction. This July will be 4 years sober for me, and you helped me get here. 

I remember you were the third person I told that I was pregnant with Malachi..i still lived with you and you went out and bought me a bunch of healthy food.  You asked me about every appointment and were super supportive. You were the first person to tell me you were proud of how far I had come. 

Through everything in my life, I have always been kind.  I have always known how to love, because you loved me. I grew up going to the grocery store with you and watching you say hello to everyone we passed by. We can’t go anywhere in Brooklyn without you seeing someone you know, and they all absolutely love you. I don’t think you have an enemy in this world. When we go out in public, I watch Olyvia wave and say hello to everyone we pass,  and I smile inside every time because I know that comes from you. She learns it from me, but it comes from you. 

You taught me how to be humble.  We never needed more than what we had because we had love. Sure, we weren’t poor, but we weren’t rich either. Your house is my favorite place on earth, because it is home to me. When I pull onto Wheaton rd in the summer, my windows down, country music blaring with my bare feet, I feel it. When I walk through the front door, and hear you call out “hi!!” I forget for a moment that I’m an adult. For a second, I’m 5 again and I half expect you to have cookies on a plate waiting for me. I half expect Pa and Uncle Mark to be in the living room arguing over whether  Dale Earnhardt or Jeff Gordon is better. Then I snap back to reality because I see my kids run and jump into your arms. I see Olyvia yell “hi Pa!!!!” With a big grin as he walks up from the barn. 

I guess what I’m really trying to say, is thank you. Thank you for being the person you never had to be. Thank you for making me, me. Thank you for giving us random food when you know we wouldn’t ask for it. Thank you for being there for me when no one else would. For my highest of highs and my lowest of lows. You are my absolute best friend. 💙 

Ode To The Greatest Unsung Hero

We have always said 2017 would be our year, and it is shaping up to be just that. I haven’t felt this good, or this happy ever in my life. I keep thinking “once we heal Malachi we will be coasting!” After years of what seemed like constant struggle, it is about time. It’s the year we have been waiting for.

Then the thought occurred to me….havent they all been “Our years”? I feel like I’ve spent so much time waiting for the year everything becomes “easy”, that I’ve forgotten all the life definining moments that we have already had….that we are having. 

The first day I met you your hair was insane. I remember thinking to myself “this is the only person in my life I’ve met with the same crazy hair as me”. I loved It! I found out later you had the same crazy personality to match and that sealed the deal. I was head over heels instantly, and so were you. 

Of course we were maturing and things were turbulent for a while. Somehow, we always found our way back to each other. Ever since the moment I met you, I have literally felt a magnetic pull towards you at all times. Nothing is as enjoyable as it is once you walk into the room. No matter what I am doing, I miss you if you arent there. I always have. 

You are one of few people that has gotten me without any words. I remember being at your house when we weren’t together, for your birthday party. I made a particularly big fool out of myself that evening, and I came into your room the next morning and you took one look at me and pulled back the covers just so I could lay with you for a minute. You understood. You always, always understood. 

Years of misplaced emotions have caused me to grow closed off emotionally, and I Thank You for putting up with that above all else. I know you have a higher need for displays of emotion than I am necessarily ready to give, and I Thank you for not walking out on me because of that. I know my shell is thick, and it may feel as though you have been slowly chipping away at it for years. I know how frustrating that must get, but I Thank you for doing it anyway. 

Thank you for forgiving me when I am sleep deprived and a raging lunatic. When I lash out on you because it’s better than my kids and there is no one else. When all the stress, and sadness, all the shoved down emotions surface in the form of panic, thank you for taking it and loving me still. When I obsessively plan every aspect of our lives, and I know that you can’t stand it, I Thank you for loving me and going along with it anyway. 

Thank you for supporting me so I can be the best possible mother, wife,  friend, and woman I can possibly be. You have built up my damaged confidence to the point where I am able to excell freely. You have given me the security I have searched for my entire life, and I couldn’t give you enough to ever possibly make up for that. 

Thank you for loving our kids more than life itself. Maybe even more than you love me, and that’s saying something. They absolutely adore you.  I know it was hard when they didnt. I know that you had to spend years not knowing how to connect with Malachi, and dealing with Olyvia crying if you even looked at her. I know that I chose to breastfeed both kids without using a bottle, and I know that took feeding away from you. Thank you for supporting that, and thank you for finding other ways to connect with them. I don’t know if breastfeeding would have been as successful if you hadn’t.

Thank you for waking up with me in the middle of the night, even if you can’t really do anything, and even if you have to be up at the crack of dawn. Thank you for being there for moral support, because the sleep deprivation would kill me if you werent. Thank you for changing diapers. Even if people argue that men shouldn’t be thanked for that, they should because it sucks and you easily could not do it. 

Thank you for working two jobs. Hard work is your thing, I know that. I also know that you’d rather be home. I know you sacrifice time with us to support us, and it’s kind of a catch 22. I know you are kind of stuck, and Im sorry for that.  But I Thank you for going every day, and not only showing up but excelling. Thank you for getting very little sleep and still going to work and still working as hard as you can. The term “slack ” does not apply to you.

You could easily not do anything you do, but you do it. I know that you do it because you love me like no other. Your love is absolutely unconditional, and for that I am forever grateful. You have spent most of your life underappreciated from multiple sources. In ashamed to say, I have been one of those sources. I don’t tell you enough,  but Justin I appreciate every single thing you do. You don’t get enough credit. 

Last night you said to me “Paige, I just want you to know that you are healing Malachi.” Well Justin,  I just want you to know, that you are healing me. 

 I love you, a thousand times, til death do us part, unconditionally.  💙

Happy Third Birthday, My Sweet Boy 

Dear Malachi, 

Saturday is your third birthday, and I’m sitting here trying to figure out how this happened! You really aren’t a baby anymore, (though the ladies at Comprehensive swear you still smell like one). The past three years have been a whirlwind, but they have also defined us. 

You have been thrown into many big changes that were completely out of your control. You have had things you loved taken away from you, you have been introduced to new things that you may not love quite as much. We have moved houses, we have changed our day to day activities. You have suddenly started spending more time away from me. Most of all, you have acquired a little sister. 

Through all of this,  however, you have remained your sweet, innocent, happy self. How? How can you be so strong? How can you be even stronger than me? Even the times that I fell completely apart, you held it together. You, My sweet, tiny little man, held your Mommy together. 

When I look at you today, I see a little boy who is wiser than any of us could ever know. I see a child who understands everything.  I see a boy who looks into my eyes and somehow his soul directly connects to mine. How can you do that Malachi? How can you say so many words and speak so many feelings to me by simply looking into my eyes? 

I remember when you couldn’t look into my eyes. I remember when you were hurting. I remember when you would wake up in the middle of the night crying in pain and I had no idea why. I’m so, so sorry I didn’t know why. I’m so sorry that I failed you in that way. I will never, ever say sorry for that enough. I will never, ever be sorry enough.  

But you already know that don’t you? Because you know me. You know me best of all, as I know you. Through all of that, you persevered. Through everything,  you never stopped trying to communicate with me. I can’t imagine how hard it was for you, to no longer be able to do things that used to seem so easy. In the beginning I thought It was so hard for me, but it was always harder for you. Still, you tried. Still,  you reached for me in the night. Still, you pleaded with me with your eyes to help you, and so I did. 

I’ll never forget the first time I seen your face. Nothing could have prepared me for that. I knew you were meant to do something great. I knew that my entire world would change because of you, but I was never prepared for just how much. 

I’ll never forget the first time you said hi, and waved to our neighbors on Monroe street at just 11 months old. Crystal said “I think he just said hi!” And Rick agreed and we all laughed and you were so, so proud.  

I’ll never forget the day your grandma asked me why you weren’t talking. Then your aunt, and then your dad. I’ll never forget feeling cheated. I thought they were all wrong. I thought they were wrong because you never let our bond waiver. I can’t imagine how hard it was to hold onto that Malachi,  but you did. 

I’ll never forget the day your doctor told us you were in constant pain. The day we found out you were celiac and intolerant to dairy. The day we found out you were injured. The day we found out your body wasn’t getting rid of the icky stuff, but it was getting rid of the good instead. The pain I felt in my own chest because you had been in pain and I had no idea. The day I felt like I had made the biggest mistake of my entire life. But you wouldn’t let me feel that way. You took my hand and walked out of the doctors with your head held high, almost as if you were saying “mom, we will beat this.” And I believed it too. 

I’ll never forget the first time I seen you take an interest in Olyvia. You guys were playing in bed, and you smiled at her and tackled her. She was so happy. You two have been nearly inseparable ever since. She loves you so, so much Malachi, and I know you love her too. 

I’ll never forget the first time you looked your dad in the eye since your regression. The tears that fell from his tired eyes, and the hope that beamed from them. The realization that it’s working….that all the stuff we were doing was making a differance, that you were feeling better.  

I’ll never forget the first time you slept all night without crying in pain, and I know you won’t forget it either. Another sign that you were getting better. 

I could never put into words how strong you actually are. It’s hard for me. A part if me is deeply saddened that someone your age has to be that strong. I had to be strong at a young age and I swore my children would never carry that burden, but here you are, carrying it with one hand. The other part of me is so proud I can’t even take it. I see so much of me in you. I see so much of your dad in you. You have created a bond within this family that is virtually impossible to break. The four of us are more tight knit than I ever thought possible, and that is centered around you. 

I want you to know that we love you so much. I want you to know that you are amazing, and strong, and kind, and everything I could have ever hoped you would become. I love you my sweet boy, I love you so, so much. 

I hope your birthday is everything you imagined it would be! Three is my absolute favorite number, and you are my absolute favorite little boy 💙💙

Autism Is Not A Damn Superpower 

Today is April 5th, which for me means two things. Its my dear Pa’s birthday, and it’s also the 5th day of autism awareness month. I prefer to discuss my grandfather’s birthday, which is an event that makes a bit more sense to celebrate, but unfortunately my inner opinionated blogger feels the need to address how I feel in regards to autism awareness month. 

Let’s start by saying I had a meme pop up on my Facebook feed that literally said “i have autism, Whats your superpower?”  Come on people. Are we serious? Are we actually serious? Here let’s rephrase it. 

“I have cancer! What’s your superpower?” Or how about “I have permanent brain damage, what’s your super power?” 

Now how do you feel? I know some of you may think I’m morbidly exaggerating, but unfortunately I’m not. My son, and lots of other kids, are sick. 

“Metabolic encephalopathy (toxicmetabolic encephalopathy) is a broad category that describes abnormalities of the water, electrolytes, vitamins, and other chemicals that adversely affect brain function.”

Autism is just a blanket term for the behaviors/mental impairments that result from a variety of underlying issues, of which I will let you research for yourself. Does this sound like a superpower to you? 

Autism acceptance bothers me, because I shouldn’t have to wear blue and get puzzle piece tattoos for you to accept my sick son. I shouldn’t have to spend my son’s entire birthday month angry and annoyed because I’m being bombarded with asinine memes about my son’s “superpower “. Right, his inability to detox from anything bad is a great superpower. 

This month is supposedly to help children with autism and their families feel more accepted, and all it does is make me feel more alone. Do you understand how draining it is to fight against the masses day after day? To have a son who is sick that you can’t even speak publicly about because people don’t accept it? To be in the thick of it daily, to constantly be obsessing over treatment and research. To have multiple doctors telling you different things and being forced to chose? Being forced to make the best decision for your child who relies solely on you as parents to make that choice? On top of that, you are silenced every day by someone on the internet who refuses to believe you when all you want to do is help them help their child? Does that sound like autism acceptance to you? 

Oh but wait,  doesn’t autism just mean he is super smart? I mean maybe he flaps his hands sometimes but who cares,  wasn’t Einstein autistic? That’s the kind of autism we are forced to accept….the “good” kind. The kind that doesn’t make us feel uncomfortable.  The kind that is “cute ” and “brilliant”. The kind that creates E=MC2. Isn’t that what sesame street said? 

Here’s some awareness for you: my son wasn’t autistic once. He was normal.  He was starting to talk. He was looking us in the eye. I have picture after picture of him smiling. Go to my Instagram and start at the very first post and work your way up. You’ll get chills. It’s almost overnight he quits smiling and quits looking. To have a  normal child spiral into a world of nonverbal autism before you even realize it is horrifying.  The guilt took me a year to get over. A year. My son was stolen from me and now Justin and i are fighting tooth and nail to get him back. Where is the damn awareness for that? 

I go to bed every day wondering if I have done enough. Wondering if I’m doing the right thing. Praying Olyvia doesn’t resent me because she won’t remember that her mom was spending so much time trying to heal her brother. She sees the tears,  but she doesn’t realize why the are there. She is so small, she doesn’t yet get that the world doesn’t accept us. It makes me sick to think that one day she will. That one day she will tell someone that her brother used to be autistic until her Mommy and Daddy healed him and the response will be “well he was probably never autistic at all”. 

My son is brilliant. He is sweet. He is caring. He is determined. He knows what we are doing is helping him and he is complying with everything we do like a champ.  He doesn’t speak, but I know what he says. Our bond is primal, and I am thankful for that. I am thankful that we have come so far and he has made so much progress. I’m thankful for his doctor.  I’m thankful for our therapists. What I am not thankful for, is his sickeness. I don’t thank God for giving our son this sickness,  but I curse man for causing it. 

There’s your fucking awareness.  

My. Life. 

I haven’t written a blog in a coons age, and lately I’ve had so many feelings bottled up I need to release them or I’ll burst. 

I feel so consumed with guilt and inadequacy lately that I can hardly breath. So many things in my life are demanding my attention and there just isn’t enough of me to attend to them all. I feel like I’m constantly having to put one priority in front of the other until nothing has been given my full self and it feels as though a million things are left incomplete. 

My kids require the most of me. I put them first most of the time. I do this by defult, process of elimination. What thing absolutely cannot function without me? My kids. Boom. First. I am of the belief that children benefit greatly from constant connection to a parent (with minimal seperation) for the first two years. Minimum,  if not longer. 

(Before anyone gets offended because  “they couldn’t do this with their kids” and I’m being “too judgemental” save it. It’s my belief for my family. If you feel differently that’s fine! You better raise your kids exactly how you see fit because that is what I’m trying to do here.) 

Obviously minimal separation gets exhausting because my GOD THESE KIDS ARE EFFING ATTACHED TO ME AND I WANNA SCREAM! However I chose this and I love it probably 90% of the time. Malachi has a lot of special needs and he benefits greatly from me being home with him. He’s happier, I’m happier it’s a win. 

To give you an example of how scary it is to be away from Malachi, last night I accidently bought him a fruit/veggie pouch with yogurt in it. He hasn’t had diary for almost a year. I didn’t realize I grabbed one with yogurt, I gave it to him and realized it when he was almost done with it. Last night he was acting drunk (because that’s what Casien does to us). He was bouncing off the walls at eleven o’clock at night. I had to give him melatonin. He NEVER wakes up if he has melatonin. He hasn’t had it in a really long time so I was thinking he’d for sure sleep. He woke up in the middle of the night with glassy eyes crying and being paranoid. He acted like he couldn’t even see me. He was terrified. He hasn’t acted like that since before we took him off diary. 

If I could so easily mess up like that, what could someone else do? What could happen at school? When I tell people (even family!!!) that he can’t have gluten or diary and how it effects him, they look at me like I’m crazy. Can you imagine how that feels? To know your child so much that you notice these things and when you tell people they act like your a lunatic? About your own child? 

Justin is obviously my second priority. Oftentimes it switches back and forth with the kids. I think I do an okay job of keeping it a simultaneous thing. I love them all equally, but Justin is actually capable of meeting his own needs while my children are obviously not. A lot of relationships of parents of autistic children end in a divorce or a seperation…and this is probably why. Thankfully my husband works with me and we communicate very well. If he needs something I am not giving he tells me. I try to be hypersensitive to his needs as often as I can, and he to mine. However I still have guilt. I still have this fear deep down in my soul that what I give him may one day not be enough. Living with that deep down takes an emotional toll on you. 

At the  end of the day I feel so drained emotionally. Trying to remember everyone’s needs is fucking exhausting. A million supplements. Trying to make sure malachi eats enough food to sustain him, and trying to get him to eat the right food.  A lot of days we are gone all day for school and therapy so i have to prep and pack three lunchboxes full of food so my kids dont het hungry. Trying to eat the right food myself so my kids want to eat the right food. Not just because they should but because Malachis well-being quite literally depends on it. Trying to save enough of me to give Olyvia a halfway “normal” parent who does normal things. She is a very sensitive child with really big emotions and she still needs me so much. Trying to give my husband the love he so greatly deserves. Trying to take a few minutes and give him my undivided attention while the whole time my body is literally shaking from thinking about all I need to do. Trying to keep my house clean because I have anxiety issues and clutter in my house will actually drive me frigging INSANE.  

All this and we haven’t even ventured outside the people in my household!!! Trying to be a good sister, daughter, granddaughter, friend. God I love my friends and family so so much. I would love to give them more, be a better friend.  Now I find myself struggling to connect with people. I see other moms struggling and want so badly to be a positive voice for them and to help them through it because I SO get it. My intentions are there but there just isn’t any more of me to give anyone. 

I suppose the reason I’m writing this is to tell everyone I care about how sorry I am that I cannot fulfill the role I am meant to play in your life. Please don’t take my absence in your life personally. While my emotional capability is small, I promise you my heart is not. I may have shut off your emotions because that’s the only way I will survive this, but I swear I feel so strongly for every single one of you. So much so that I spend days at a time depressed because I want so badly to be there for everyone all at once. 

One day, I will be that person again. For now, I have to take time to raise my kids. I have to take time to be a good wife. I have to remember to let my dog in from outside for goodness sakes!!!! I just hope that everyone can be understanding of me, and other people in their lives who may not give them as much as they crave. Just because you don’t see the love from them all the time  does NOT mean it isn’t there. ❤