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 …..💙💙💙 

Advertisements

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. ❤

Malachis Journey

April 22, 2014 a little man came bellowing into the world and was immediately thrown into my arms. I’ve written time and time again how I felt at that moment: overwhelmed with love. There was a monumental shift and I knew this boy would come first before anything. I knew I would lay down my life for him.

At the hospital we agreed to all the “standard” procedures. He had his shots, he had the ointment, they took him from me for his circumcision, everything. Thankfully he was able to stay in our room.

Let me just take a moment to highlight the nievity of new parents, of parents in America in general. I did so much research on breastfeeding and I knew I would be doing that, but I honestly didn’t even think it was an option to research anything else. I wasn’t even aware that “anti-vaxxers” existed. I circumcised my son so he would “be like everyone else”. Please hold my hair back while I barf.

The second day at the hospital Malachi slept the entire day. I remember everyone came to see him and he was always sleeping. “Hes just so exhausted from the birth! It is just as tough on them as it is on you!” Okay, sure. That seems legit. I didn’t question it.

Flash forward to Olyvia, bright eyed and bushy tailed. Every time someone came over she was awake. Her eyes were looking everywhere. Maybe the epidural made him sleepy? Or maybe it was the vitamin k shot and the Hep b shot already reaking havoc.

The first week home Malachi slept horrible. I slept sitting up with him cradled in my arms resting on a boppy pillow. It was rough. I remember one night in particular I could not get him to calm down. He refused to nurse and I had to walk around singing and crying.

A month after he was born, we went for the first round of vaccines. Holding him down was awful and I felt wrong doing it. I didn’t question it because why would I? Instead I held my precious baby down with a sick feeling in my stomach while he screamed and they injected him with hep b “for the greater good”.

Malachi slept most of the day that day, then became sick. He “didn’t feel well” for a few days. We gave him Tylenol and then moved on. Colds and fevers are a part of life, right?

That summer was a hot summer but we pushed through. Malachi was a happy baby and everyone loved him. Everywhere we went people said “my what a happy boy!” We were in love. We took him at four months for another check up, and more shots. This time he had a larger round of shots. DTap, Hib, and polio combo and the pneumococcal.

Let’s take a moment again to talk about how I let them inject my four month old baby with four vaccines at the same time. Let’s analyze what that means.

-the Hib, DTap and polio shot is a combo and his ped at the time used the pentacel combo. This vaccine contains 330 micrograms of aluminum. It containst higher levels of the pertessius components than the single dose. The polio portion of this vaccine uses a human embryonic cell line with cow serum to grow the virus.

-the pneumococcal vaccine contains 125 micrograms of aluminum.

That makes 455 micrograms total of aluminum.

This time, it was bad. Malachi slept all day again, except this time when he woke up he screamed. He screamed for hours. I had no idea what to do. It was this awful high pitched wail that never ended. He had a fever. He wouldn’t stop crying. I was crying. Justin was crying. We thought it was his damn teeth. His teeth for goodness sake. We gave him tyleol and he passed out.

Life continued on as usual. I was a stickler about malachis health and I did quite a bit of research on feeding. He didn’t eat anything until 6 months and we skipped the cereal and started with home made, organic veggie and fruit purees. I was obsessed with gut health. (Ironically). We were what you might call “attachment parents”. I never let him cry. If he was crying I figured out why and made it stop. We co-slept. Malachi didn’t sleep very well so it was easier for me and plus I liked the idea of him being close to me. I knew he was safe.

At Six months he had another round of shots. The same four as last time except add another hep b. His ped at the time acted dumbfounded that I hadn’t introduced cereal at four months (even though Malachi has always been in the 90-95 percentile for weight and height). He refused to listen to anything I said, and it was after this visit I walked out furious and told Justin we were switching pediatricians. Malachi was sick again after these shots and had a few rough nights. Again, I thought it was his teeth.

Quick recap of aluminum:

-pentacel: 330 mcg
-pneumococcal: 125 mcg

Now let’s talk about hep b. There is 250 micrograms of aluminum in hep b. So that day, I held my son down and let them inject him with 705 micrograms of aluminum.
Of course, the only study done on the safety of aluminum deals with subjects with “impaired kidney function”. Nonetheless, a toxic dose for an adult with “impaired kidney function” is 350 micrograms. Keep that in mind, we will come back to it.

I asked around for a few opinions and ended up finding a really good pediatrician. We were planning to take him there at nine months. We decided to try for another baby after the first of the year and we succeeded. Malachi was eight months when found out and turned nine months the end of that month. We went to see our new doctor and ended up going on a Saturday so we didn’t see him at that time we seen and intern or something. He recived his last round of shots. Another 705 mcg of Aluminum.

Malachi continued to develop normally. He walked at nine months. He babbled. He waved. He was still social and happy. He was perfect. The only thing we did notice was that he got sick very easily. If a child came over with a runny nose Malachi would be sick for a week afterwards. We took him in at 12 months and I was fully prepared to continue vaccinating. Justin just came out and said “what is your opinion on shots?” The best question he has ever asked. I walked out of there on the opposite side, and the more I researched the more I stayed on that side. We never vaccinated a child of ours again.

That summer I was pregnant and I had a lot of sugar cravings. I had a strict rule that Malachi would have nothing sugary or processed. After he turned a year, I grew devastatingly lax. He ate so much crap that summer. Before long, we went form a boy who loved veggies and chicken and fruit, to a toddler who would only eat pancakes, cookies, and popsicles. Of course I didn’t think it would hurt him nearly as bad as it did. I knew it my heart it was wrong but we had that stuff and we were fine right? The most I worried about was cavities. They don’t educate you on this stuff. They don’t tell you how gut health affects your brain. They don’t want to.

Olyvia was born and Malachi was pushed to the wayside. Not really, but one night he went from sleeping by his mom to sleeping by his dad. I had bad nursing aversion and post partum anxiety. I was a basket case and felt really alone those days. When I nursed Malachi i would shake and have to focus on not banging my head against the wall. It made my skin crawl. I hated myself for the way I felt. I wanted to nurse them both to ease the transition and instead it made it worse. the day he turned 20 months I never nursed him again.

During this time, he would wake up crying for hours at a time. He had stomach aches all the time. I refer to these next three months as the “dark days”. Malachi spiraled into the world of autism. He completely ignored Justin…wouldn’t even look at him. He wouldn’t look at anyone. He lost all eye contact. He stopped playing with toys. He only wanted to watch tv. He was aggressive. He wouldn’t let us comfort him. He would spend his days pacing around the house picking things up and tossing them aside. He stopped eating everything. when people came to visit he hid in another room. This was the first time in my life I had ever fallen to my knees in exasperated prayer. I was losing my baby and I had to make it stop.

We went to his ped and did a massive blood test to check for everything. We found out he was low in a lot of essential nutrients. We started him on a massive supplement regime. We took him off of gluten.

Malachi is overmethylated. Typical features of an overmethylated person include:excellent socialization skills, many friendships, non-competitive , artistic or musical interest, chemical and food sensitivity, and a tendancy for high anxiety. Methylation is a very interesting topic that I suggest you look into.
He is also diagnosed with pyroluria, which means he has pyrolles in his body that bind with zinc and b6 and take them out through his urine. Which basically means regulating those things is a bitch, so he is on a lot of digestive enzymes and absorption supplements.

Malachis gut is damaged. He was born with a susceptibility to things that other people are not. His body stores bad things and gets rid of the good. The antioxidants in his body do not function like they should, causing a buildup of things like lead, copper, heavy metals, gluten, casein, chemicals in food. Remember that section about aluminum I told you to hold onto? Impaired kidney function can have something to do with your kidneys essentially holding onto waste. If they don’t work right, they can’t get rid of the toxins. Well, Malachis body can’t get rid of toxins. So, it would be logical to say that If 330 mcg Of aluminum is toxic to an adult who can’t get rid of toxins, it is very much toxic to a baby who can’t get rid of toxins.  
After a few months I finally had an understanding of what was going on with him, plus I joined some groups and met some very intelligent moms who were where I am once. A month ago I took him off of sugar and dairy. He is off of anything with chemicals. No dyes, no preservatives, everything organic. When I slip up and give him something with chemicals in it, I notice in his behavior, it he will get a stomach ache.

Today, Malachi is plays with toys. He had started to try more foods. He is affectionate and even kisses us without any prompting. He makes eye contact regularly. He doesn’t only communicate when he wants something, but he seeks comfort. He wants us to play with him. He is happy. He hasn’t been sick in months. He sleeps better. He is healing. We still have so much more to do, but everything we have done has made such a huge difference.

image

image

Just the other day Justin said ” we won’t stop until he is healed. We won’t just sit on our hands and watch him spiral back to that dark place. I don’t care what it takes.” I couldn’t have said it better myself.

<img android-uri="file:///storage/emulated/

Today I Feel Like Raging

In today’s world it’s hard to be a parent. You do too much, you are a helicopter parent and you should back off. You don’t do enough, you are a bad parent. The stigma and expectations are ridiculous and because of social media everyone has an opinion about everything. It gets old and annoying, sometimes it makes me want to delete my Facebook.

The part that gets me though, is people who get annoyed when moms are going above and beyond. There is an article or two floating around right now about how there are too many “rules”. There’s one that literally says “I will put poison sunscreen on my child if I want to.” Okay cool, you do that. That is your perogative and I used to feel the same way. “This sunscreen really isn’t bad” “my kid can have McDonald’s it won’t kill him” “who cares if I buy non organic?”

There was a time recently when I was talking about buying homemade sunscreen to another mom and I literally watched her roll her eyes. I’m pretty sure she realized I saw her because she tried to hide it by pretending to be interested in what it was made of.

As most of you know, my child has a chemical inbalance that renders him unable to breakdown and process chemicals. Which means things build up. I didn’t know this until he was 2 and now we are detoxing and cutting food groups and home making nearly everything.

My entire life is “over the top” parenting. You may not feel like that commercial sunscreen will hurt your child, but it will hurt mine. You may not care if your child eats McDonald’s but mine will suffer. We took him off of sugar and dairy and I can’t tell you enough what a difference that made. We decided to allow him to have fruit snacks at the fireworks, that entire night he spun in circles and didn’t go to sleep until 5 am. Things do hurt my child. Food will literally set us back 10 steps.

It blows my mind how many people think food doesn’t matter. I used to think the same….I didn’t know Malachi had an imbalance until it was too late. Until I spent an entire summer letting him gorge on popsicles and cookies I made and the occasional McDonald’s. Covering him in sunscreen and bath soaps and hair conditioner chock full of chemicals. Have you ever looked at the back of that crap? Do you even know what half that shit is?

The common saying is “I’m trying my best and it’s just too hard to do any more”. I get that. I used to think the same way. Oh what a breeze life was when I didn’t know. When I could toast frozen waffles and give my kid fruit snacks and pizza rolls. How much easier life was then. When sunscreen cost $2 for a huge thing instead of $7 for 3oz.

I had to change because I didn’t have a choice. It was hard but I did it and guess what? Now its my every day life. It’s all I know. I think a lot of times we think things are harder than they actually will be. It took me awhile to accept that I could do more. We can always, always do more.

I know that the mom in your life who makes her own sunscreen, buys only organic, doesn’t vaccinate, home births, baby wears, cloth diapers , grows her own vegetables, makes her own almond milk, doesn’t allow her child to eat your dish at the pot luck, leaves the party when the popsicles come out, and gives her child Epsom salt baths every night before slathering them with coconut oil may seem stuck up. She may seem like she judges you or thinks she is better than you. Just know….she most likely was you,  knew someone who was you, read about someone who was you and had a child that wasn’t fine. Someone who was you and regrets it every day of their life.

I know we all “made it out alive” and are “fine”, but some children are not. I urge everyone to do what is best for themselves and their child, but before you roll your eyes at a mom like that, maybe take a minute to ask her why she does the things she does. I promise, she has a good reason. 💜

image

Messy houses and Clean Hearts

I have been so busy the past few months I haven’t written anything in ages. Both my kids are napping and we have an hour until speech therapy so I’m whipping this one out. Please don’t judge it too harshly, I promise I was an excellent English student in school.

We moved! The trasnsition wasn’t nearly as hard as I expected. I actually think we are all happier here. More space, bigger yard, quieter neighborhood. It’s forcing me to slow down and appreciate life a little more. (Something I’ve always had a hard time with).

I think its easy to get caught up in worldly things, and to focus on things that seem important but just aren’t at the time. If my sweet Malachi has taught me anything, it’s that. Oh how trivial my worries have been up until now. I chuckle sometimes at that. If I had only known what worry is then. I have been telling Justin that right now it’s really important for us to focus on the now. The present. Day by day. I have called about 12 centers to get Malachi on the list to be diagnosed officially so we can start some ABA therapy. This is not cheap, and the possibility of being that far in debt scares my worldly self. Most people worry about debt. It’s the thinking behind nearly all of our financial purchases. (Oh, how I wish we would have bought a 5000 van instead of a 20,000 van). Ironically enough, I’m not worried about it.

Malachi has put into perspective for me what really matters. Do we really need nice things? Do we need to be out of debt? Will God stop us at the pearly gates and ask for a bank statement and run a credit check before letting us in? Do you think God will care more about the career we have made or more about how much we tried to help our children?

One of the biggest questions I get asked in regards to staying home is “do you ever want to have a career? Broaden your education? Go back to school?” Maybe before Malachi and now Olyvia I would have wanted to. I always wanted to be an addictions counselor or a social worker. Now, I know it’s my job to homeschool my kids. It isn’t even that I just want to, I know in my heart that Is what I must do. Malachi further confirms that idea….especially since he is nonverbal.

In my opinion, I have two jobs. The first is to raise my children in the word and hopefully to know God’s love so much that they continue it throughout their lives. To teach them love is my #1 priority. The second, is to help them to live the best lives possible. Both of those work more efficiently if I stay home and teach them myself.

Malachi has made progress, but there is a biological time clock ticking and I feel an urgency to do as much as we can now. Everything is more effective if it is started young, and that is exactly what we want to do.We have been asked “how are you taking it so well? The fact that he has autism?”

My answer has many parts. I have thought about this a lot, and I think the biggest reason is my trust in God. I trust him fully. I know He has plans for us and I know without a doubt he will get us through this. Whether is is the outcome we want or not I know He is there. Also, Malachi isn’t just “autistic” and that’s that. He has a bunch of medical stuff going on. Overmethylation, pyroluria, food intolerances/allergies, internal inflammation, Candida, maybe yeast, nutrient deficiancies. The list goes on and on of options for us to treat medically. We have so much action to take. On top of that, therapy, play groups, surrounding ourselves with other families on the same journey. I hardly have space in my brain to feel upset!!

Of course, it isn’t always easy. I have guilt. My head is just above the waters of grief and if I allow myself to stew on the guilt even for a second I will surely sink. They say every one has parental guilt, but for me it goes deep. When I think about the possibility of Malachi being non-verbal forever and being in this scary world my chest tightens and I have to focus on not having a panic attack. I haven’t had them in years and I’ve had them quite a bit lately. Sometimes I feel like Olyvia takes a backseat. She doesn’t in my heart or in my mind I love her endlessly, just like Malachi. I feel sometimes that she is so independent already and I blinked and here she is. That is hard.

If anyone takes a backseat, it is Justin. The bible says God comes first, then your husband, then your kids. That is hard for me. I try to give Justin attention and its hard for me sometimes. My brain is on constant biomedical mode and change diaper mode and feed babies mode. Sometimes it’s hard for me to shut it off and be in the moment with him. Thankfully, he loves me more than anything and he understands. He is open to try anything I suggest with Malachi and he advocates for him just as much as I do. I thank God every day for someone so perfect for me. He is my rock and when I am breaking down he is stoic. I really could not do this without him. My love for him has grown from puppy love, to birthing a baby in a pool together love, to being the parents of a special needs child love. No one could ever understand the bond we share and that alone outweighs any grief I experience.

So if you ever come over and my house is messy please know that I paid adequate attention to each memeber of my family that day and my meter was full. The cleanliness of my house can honestly suck it. Pardon my vulgarity.

We are making it over here. The four of us (okay five Cooper counts ;)). We are stronger than ever before and we are taking this life head on with God and our family and friends right next to us. We are happy, we are confident, and we are thankful. There are highs and there are lows but we are all in this together, and I know we will make it through to the other side. 💜💜💜

image