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I have seven days. Seven days until I have a Kindergartener. Seven days until I drive him to his new school, hug him goodbye while I try not to cry, and send him on his way to begin his official school career. I say official, because he did go to a twos program and then preschool and then pre k. It was different there though. It was only two days a week. I got constant daily updates. I could keep him home whenever I wanted. Vacations, illness, he needed a break. There were no rules. We kind of lived life as we pleased.

Now begins his official journey of education. We will have to plan things around school. Five days a week I will have to send him off for a few hours. If we want to take a random last minute vacation (which tends to be our MO), we will have to take school into consideration.

Five days a week I will scramble in the morning to get us out the door by a very certain time. Another leisure I had before. I always aimed for a certain time, but at his school, there wasn’t a mandatory start time. I am sure some mornings will be smooth sailing and some mornings will be insanity. I have no false hopes that it will be consistent. Life with children is nothing if not rather inconsistent and unpredictable at times.

Five days a week I will come home to a slightly quieter home. His baby brother is a lot different when he is on his own. When he gets the rare chance to feel like an only for a few hours. He isn’t better or worse, he is just different. It is as if he understands he has some mom time to himself. We have two classes we are signed up for to pass some of the morning time. To get to play together and have fun. The ways I used to take big brother to different toddler classes. Five days a week I will have an only child for a little while.

Five days a week I will wonder what he is learning. I will wonder if he is adjusting well. I will wonder if he is being well behaved and kind. I will wonder if other children are being kind to him.

Five days a week I will let other people care for and teach my son. The tiny human that grew in my body. The tiny human who thrived on the milk my body produced for over a year. The tiny human who grew into a chubby toddler. The tiny human whose toddler chub melted away into a tall and long preschooler. The tiny human who has begun to define his ability to be opinionated and in charge. (This is said in such nice terms. In the midst of an opinionated moment, I don’t always feel so sunshiny).

Five days a week I will pick up this young growing boy from his class. Sun, rain, snow, or any weather in between (it can be all of the above in the same day in Chicago). Baby brother in tow, chattering away as he is wont to do these days. Hopefully I get to listen to this Kindergartener’s chattering stories on the drive home. Asking questions I hope he has answers to. Sometimes he says he doesn’t remember what he did five minutes before. I will be clinging to every bit of information he decides to pass along. I will try to get him to tell me his five favorite things of the day. A tradition I started in preschool. It elicited more information than just asking him “what did you do today?”

I have seven days until I begin to live in a world of five days. Today he has had moments of driving me crazy. I love him dearly. He wants to do what he wants to do though and sometimes that isn’t what needs to be done. Then we sat down for a snack. I had a few moments of peace prior to that while he picked up his toys. It allowed me to reset. I just watched him practice his Taekwondo forms for no reason other than he loves it. He showed me a booby trap he made out of a snap bracelet. I have seven days until I have five days of missing out on these moments of happiness. I have seven days until I have five days of him sharing these silly little pieces of himself with other people in the world. While I am across town, doing whatever I am doing in those hours, a gymnastics class or a mom/tot dance class, or a trip to Target, or just picking up around the kitchen while the toddler plays, he will be sharing the unique and amazing things about himself with other people. And I have no choice but to accept and be ok with that.

I have seven days until I have to let go for five days a week for the rest of his childhood education. I have seven days until I have to choke back tears until I get into my SUV and sit there for a moment. I better start practicing.

 

 

10 days ago I left you behind. For good? I am not certain. For now? Most definitely! I cannot say that it has been tragic or terrible during these last 10 days. As a matter of fact, I feel pretty damn amazing. Incredible. Free. Energized. I would argue that I left you behind and upgraded to a better and more amazing version of you. A version that lifts me up and keeps me going throughout my day.

You always managed to slow me down in the end. Sometimes I would lean on you, hoping for a little encouragement and boost. I wanted you to show me love. I wanted you to pour your energy into me. To let your light shine over me and fill me with an everlasting warmth. A warmth I had hoped I could never find elsewhere. The slow and crawling realization that all I was left with were exhaustion and the dire need for some water immediately, nearly crushed my spirit. I was faced with the reality that I needed to make a choice. Who was more important? You or me?

Who are you?

Who did I leave you for?

These are questions I can answer factually and without reservation.

 

You are Coffee.11008612_10152617806035836_7878154062388228118_n

And I left you for Green Tea.

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I had no set reason for doing this. This wasn’t done to reach some kind of goal. When I would have my second cup for the day, after lunch, I noticed that it actually slowed me down. I often became more exhausted after drinking it. Sometimes even dozing while my youngest napped and my oldest had some quiet time. I traded in my second coffee for green tea. I had much more energy. I didn’t feel so sluggish. I didn’t feel the need for a nap. The change was wonderful. I had energy to stay upright and get things done.

Then I began to notice that in the morning my black coffee just sat too heavy in my stomach. I never add a thing to my coffee, but it just was a touch too harsh. I would wake up a bit from it, but I was just feeling blah. Sometimes I felt a touch acid refluxy. That’s not a real word, but it is how I felt. So then I thought, hm, if it worked in the afternoon, let’s give it a shot in the morning. I specifically chose a Sunday to test this theory out. That is not a weekday kind of test to run! Ha! And low and behold, I felt much much better.

I am not a coffee hater now. Not by a long shot. I almost felt embarrassed to admit that I had dumped my coffee for a new beverage. Coffee is so integral to my existence, that this was hard to admit. My husband pointed out how he had to go buy coffee for the house because he noticed since I quit it, I also forgot to restock it. HA! TRUE! Whoops! I have plenty of tea though. I may go back at some point. Maybe my system just needs a break. Your body changes in your 30’s. ::cringes:: Who knows when we shall meet again.

Both have their benefits. I love them both. Perhaps not equally at the present moment. But they are lovely beverages that can make your day a pinch brighter.

Thanks for all the memories my old friend, coffee, it’s been real. I’ll never forget.

 

Here is a fun infographic. Strictly for no other reason than I love infographics. (And clearly, tongue in cheek blog posts about dumping a beverage!)

Get health and fitness tips at Greatist.com

Initially I wrote about this almost two months ago. I shared it with a select few people. My mom, husband, and three aunts. It was a huge step forward for me. I considered posting it, but went back and forth for a few days. Ultimately, I ended up not sharing it publicly. A week and a half ago I began working on an application for grad school. One of the essay questions was about a moment of adversity you faced in your life, how you handled it, what it meant to you, how it shaped you, etc.

I shared my story again. Not quite so detailed, but I shared it. With complete strangers. I laid it out there for them to assess and ultimately make judgements about me based on that. It was one of the more difficult things I have ever done. This might be even more difficult, but I won’t know until I hit post. My advisor contacted me via phone call and told me how moved she was by my story and my willingness to share that part of myself. So maybe it is time for me to put this out there. To open a piece of myself. To expose my vulnerability. Which is a difficult pill for me to swallow, being vulnerable. I hate getting emotional over this. It is one of the bigger reasons I try not to speak out loud about it.

My story is not unlike thousands of other tragic stories that happen. In America, every 2 minutes another person is sexually assaulted. Let me repeat that in America today, every TWO minutes another human being is sexually assaulted. Here are my 2 minutes.

 

My mom said to me “You have to forgive yourself in order to move on. You did nothing wrong.”

I am not upset with myself. I haven’t been for years now. I am upset with him. I am upset with a society that blames victims. I am upset with a system that failed me before I even had a chance to regain consciousness.

13 years. It has been roughly 13 years since I went through the most difficult moment of adversity in my life. Over the last couple of months a lot of emotions about this have come flooding back. Mostly due to the outrage I felt over the Stanford Rape case. The details sounded eerily similar to what I went through, and I could not help but be set back a bit. It triggered a lot of anxiety and emotion for me. When you see articles that say “warning possible trigger post,” this is what they mean. I didn’t have two heroes to stop things though. I didn’t have the opportunity to face my attacker. I didn’t even have a hospital that did more than the bare minimum of making sure I was alive and then send me on my way alone and barefoot in a vouchered cab. I was 18 years old.

My mom begged me to put my story into words. We have had lengthy discussions over this fact. I lamented that I am not certain I am ready. She is supportive of whatever I decide. She wants me to have the power. If that means sharing this or that means writing and rewriting it a 1000 times and never hitting post. 13 years later and we still live in a society where the victims of rape are so often blamed or at the bare minimum second guessed. Why would I share this? Why open that can of worms? Maybe we are on the brink of change. Awareness is there. Certainly more than I knew of 13 years ago.

I was so confused. I was terrified. I didn’t tell anyone. I didn’t call my parents. I called my aunts and left out the part about the questions the doctor barked at me over and over. Questions I had no answers to. I just said I had drank a lot and ended up in the hospital. Please don’t tell my parents. PLEASE. PLEASE! PLEASE!!!

The hospital sent me home with a bag of my things. The few things I had on me. My phone was gone. My shoes were gone. I walked through the building barefoot. I was a mess. I knocked on my own door until my new roommate and stranger heard me and let me in. I threw that bag of things somewhere. Eventually it made its way to the back of my small closet. I crawled into bed.

It took me weeks to look through that bag. The doctor’s questions ringing in my head. I wasn’t sure where my underwear went. I didn’t have any on when I left the hospital. I couldn’t even tell you what I WAS wearing when I walked into my room. I was still so foggy. I do know I was barefoot. That stands out. Even more humiliation. When I worked up the courage, weeks and weeks later, to look through the bag I kept thinking “please let my underwear be in there, please.”

They were not.

The things I do know:

  • I was at a party. I drank a lot. I had never really drank much before. Certainly not THAT much.
  • I remember sitting on a couch laughing.
  • There was pot. I don’t know if I smoked any. I remember the couch. And the room being kind of dark.
  • There was a door to another room to the left behind me.
  • There were guys sitting with us.
  • There was a wooden coffee table in front of me. Covered in assorted stuff.
  • I have a vague memory of the room behind that door to the left. Very blurry and foggy but there.

  • I woke up in the hospital.

  • A male doctor stood over me and barked questions at me about my genitals. I had no answers. I just didn’t know. He left. I never saw him again.
  • I begged to go home. I didn’t know where I was or why.
  • No one called the police. Or offered that as an option. Or offered a rape kit. I wouldn’t have even known what one was if they had. I had never heard that phrase before.
  • They told me I had been “found outside.” That’s all. I was left outside somewhere. Where outside? They didn’t mention that. (Imagine my panic attack when reading about the Stanford victim be assaulted behind a dumpster outside)
  • My underwear were missing. My pants were not.

It took me a while to put the pieces together. Like I said, it took weeks for me to even build up the courage to check for my underwear in the bag of things. When I did and when I was finally honest with myself, I realized what had happened to me. It took me even longer to tell people about it. Years.

I didn’t deal with things in the healthiest of manners early on. I didn’t even want to admit to myself what had happened. I pretended nothing had happened. Denial. I didn’t tell people the scariest details. I went through many phases. Partying. Drugs. Drinking. Anger. Anxiety. Depression. Nightmares. So many nightmares. For a long time I was numb. Or at least did my best to make sure I always felt numb. Then for a long while I felt everything all at once and it was all too much for me. It was like a sensory overload in my emotions.

It took time for me to put my life back together. Yet, at that point I still had not told anyone what I had truly gone through. People maybe knew I had ended up in the hospital for drinking. My parents eventually found out about that as well. I didn’t tell them about the missing underwear. Or the Doctor’s genital questions. I was ashamed. I was humiliated. I was in denial. While, I am no longer in denial, in some ways I still do feel humiliated. A lot of those emotions were brought to the surface again this summer.

A big weight was lifted when I finally told my mom. It was years and years later. I told my husband before I told her. I have shared it here and there with other people. Not so much the nitty gritty details. My mom and husband got those. Those are the above. This is the first time I have put them all in words written down at once. I still struggle to tell that story out loud. You may have known me when this happened. Yet, I didn’t share all of this with you. One of my reasons, on my list of many, for not sharing my story earlier is because of that. What would people I knew then think of me? Would they even believe me, since I wasn’t completely open then? Would they think I was making this up? The more and more I think about those fears, the more and more I realize I am playing into Rape Culture. I shouldn’t care if someone from 13 years ago is mad that I didn’t tell them the whole story. That is their problem and issue, not mine. This is MY story. This is MY journey. This is MY life. This was MY battle to win and use to find MY voice. I have the power to decide when/where/if I share my story. 

Sadly, every 2 out of 3 sexual assaults go unreported. I make up half of those two. Again, in 2016, ⅔ of rapes go unreported. Let that sink in. We consider ourselves a modern society and yet we allow our most vulnerable victims to fall through the cracks. We have created a culture of fear for victims, not assailants. What kind of world do we live in that someone who was violated is afraid of coming forward because they know there is a great chance that they won’t be believed and justice won’t be had? We can even have two reliable witnesses physically stop a sexual assault, and still the rapist gets a 6 month slap on the wrist. Why would a scared girl, without witnesses, who can barely remember anything, bother to come forward? 

My nightmares have returned lately. When I say nightmares, I literally mean I have nightmares about being raped over and over. Or being held captive and having to escape. I believe they have returned due to the fact that this has simmered to the surface again. I feel that this is a lifelong scar I will deal with. Sometimes it will be more faint and I won’t really even notice it. Sometimes it will be bright red, angry, and sore to the touch. My anxiety and panic attacks also never quite leave me. As I type this with shaky fingers. I have learned to manage them in much healthier ways these days. Pilates, deep breathing, running, meditation, visualization, acupuncture, and just talking myself out of a bad attack.

I understand a lot more about myself now that I am in my 30’s. With age comes wisdom. I use my voice. I will not be silenced ever again. I was recently called angry for speaking out against sexism. That may be, but I have my reasons. I have my reasons for wanting equality for women. I have my reasons for speaking out against Rape Culture and sexism over and over. Two of my reasons are sleeping in their comfortable beds above me. They are two little boys. I am responsible for sending them out into the world knowing they will do no harm to other humans. It is my job to keep them aware of how we treat others. No means no. We respect other people’s bodies and choices. You are entitled to nothing and no one. If you see someone being harmed, struggling, in need of help, do your best to help. I think those are some pretty solid reasons for keeping my voice loud, active, and yes, sometimes angry.

There is a lot that is still unclear from that night nearly 13 years ago. I still am missing pieces. Over the years small foggy fragments came through. Not everything, but some. I was unconscious. I was beyond incapacitated. I cannot expect my brain to put everything into a neat package for me. I cannot expect to remember every detail vividly. Maybe this is my blessing. Maybe this is my curse. It really depends on the minute, day, week, month, year. I will never remember it all. I will however, never ever forget those underwear.

Yesterday I came incredibly close to losing my first born child and my youngest cousin. This story has a happy ending. It is a story that I want to share though. I have been talking about it a lot all day, if you follow me on Facebook or Instagram, you know this, except, as the day has progressed the initial shock of it has worn off. I actually cried about it for the first time this afternoon. I cry at commercials, songs, shows, movies, and books, so for me to not have tears until 24 hours later means I was taking time to process this.

We arrived at a family party yesterday afternoon. Jackson loves their pool and immediately wanted to go swimming. He is a strong swimmer. He has been swimming unassisted for over a year. He has been in water since he was 3 months old. We are human fishes. We are merpeople! Ha! I lathered him up in sunblock and sent him on his way. There was a large number of adults outside right by the pool. My cousin Gavin was also swimming. I thought nothing of it.

I chased down Alex with sunblock, then I pinned my squiggly toddler to the floor to get his face covered. I handed him to my dad and started to apply my sunblock. Jason had been standing nearby. Then he wasn’t there anymore. Then someone came and told me Jackson and Gavin almost drowned. I don’t remember who. Or exactly how it was phrased. I had tunnel vision. I looked out the window as I dashed outside, seeing my husband lifting Jackson off of the pool ladder. My aunt was getting out of the pool as well, soaking wet, fully clothed. I made my way over and saw my child shaking and hugging his dad. Then I got the story.

Gavin’s arm floats had fallen off at some point. He began to struggle. Jackson saw him. His first instinct was to swim over, grab his cousin, try to help him up, and then begin to swim towards safety. Gavin began to panic and pulled the both of them under. Which is a pretty normal reaction to drowning. You hear about that happening a lot. My aunt Bridget trying to reach for them from the outside of the pool. My aunt Jenny jumped into the pool, in her clothing, to save both boys.

Jackson is 5 years old. He tried to save someone’s life. He tried to save his cousin’s life. He told me last night that he just tried to hold his breath as long as he could when he was going under. He did his best. The amount of calmness this child dealt with this entire situation astounds me. He was calm enough to see someone drowning and tried his best to save that person. He didn’t freeze or scream, he went in to help, not even thinking of the possible outcomes. Then he was calm enough while struggling to remember to hold his breath under water. He is 5 years old! 5!

Both boys were fine. They are both fine today. Jackson is a bit banged up. He has some scratches on his neck. I noticed those this afternoon. Both boys got back in the pool a little later. No further situations developed. I was glad they both felt safe enough to try and swim again.

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Yesterday I could have lost my son and cousin or just one of them. Our family could be spending our Monday a lot differently. We could be in a hospital hoping someone pulled through. We could be planning a funeral for a tiny human. The magnitude of that is not lost on me. I am thankful that Jackson saw Gavin and that pulled the adults’ attention to the pool. I am thankful my aunt reacted quickly enough to save both children. It makes me sick that I was inside chatting away with my Dad about freaking sunscreen! As I slathered it on my arms. I know I could not have known what was about to happen. I know these things happen in the blink of an eye. I know that they are both safe. But in a different blink of an eye that all could have ended tragically.

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I have been cherishing my sweet boy today. We checked on him as he slept last night. I rubbed his face and covered him with a blanket. I have been calling him a hero, because he is. I told him he is a good person and so very brave. I let him pick out a toy at the store and any treats he wanted. I have hugged and kissed him. We built lego sets and played a board game over and over. I let him listen to the song he wanted in the car over and over. He had his summer reading tutor over this afternoon. We told her the story. As I was saying it out loud I lost it. I told her that is the first time I had started to cry thinking of what could have happened. She said, “yeah I bet you were in shock still. I am going to cry!” I think that is a fair conclusion.

He makes the world a better place, even if he hadn’t done what he did. He is so bright and sunny. He is so personable and friendly. He can talk for hours. He lights up the world. The world could have lost that light yesterday. I am so thankful that I get to continue to raise this incredible human being.

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After we got home and the boys in bed, we were cleaning up the kitchen. It was a disaster. I was exhausted. I kept grumbling about all the dishes and mess. My husband said to me “Better dirty dishes to complain about than only having one kid.” I was confused at first but then he explained what he meant. Our complaints could have been far more serious last night. I will take a kitchen full of dirty dishes at the end of a long weekend over losing my sweet child any day.

The rather hot button topic of what occurred at the Cincinnati Zoo last Saturday has been weighing on my heart since Monday morning. I have to admit I was a little oblivious of what had happened until then. Alexander woke us up Monday morning bright and early and very hysterical. Upon calming him down, we slowly started our day. That included lounging on the couch after he wiggled his happy way off my lap to go play with his toys. I decided to put on the news.

I heard a brief preview of what they planned to speak about after the commercial break. My husband sat to my left. Immediately I got a bit snippy about it. They couldn’t tranquilize him? He had been more apprised of the situation and began explaining things to me. I have to admit that my initial reaction may have leaned a bit toward the masses reaction. Then I opened my ears and my heart and listened carefully to the whole news story.

I sat on my couch in my pajamas and glasses. Sipping my coffee. Watching my very precocious and often mischievous 20 month old play with his things, often stopping to give me his sly little grin. I heard the story. I heard how he had been told just moments before that he could NOT go play with the gorillas. (Here is an account from an actual witness) And then in the blink of an eye he was gone. 15 feet below in a pit with a male Silverback Gorilla, who by all accounts, regardless of intention, was still whipping that small boy around. I turned to my husband and tried to say, “that would be Alex. Alex would do that.” I couldn’t. The words stopped in my throat. The tears came to my eyes. I physically ached in my chest. I hurt for that mom. I lost my breath for a moment. That could be Alex. He would do something like that regardless of my stern warnings not to. Jackson would likely never. Even at Alex’s age. Certainly not as the 5 year old he is now. He has always been more inclined to follow my rules. I discovered months ago that I am dealing with the horse of a different color when it comes to my sweet baby boy. I have to parent differently.

Yesterday I had to stop at Walgreens. Alex did not want me to hold him the entire time. He wanted down. He is a wanderer. He is a fast wanderer. I was waiting in line. Within the 10 minutes we were there he bolted from me 4-5 times. One of those times we were near the exit and I was trying to pay. I had to chase after him before he made his way out of the automatic doors. I then attempted to physically restrain him between my two legs so I could finish paying. He broke free. This time taking off towards the back of the store. I again, had to stop what I was doing to chase after him. The mom in line behind me smiled and laughed. I said “He is a wanderer.” As I scooped him up into my arms. She smiled and said “I remember those days.” Her older maybe 8 year old daughter closely at her side. Alex then dropped a sticker he had been clutching in his pudgy little hand for the past 30 minutes. She immediately bent down to grab it for me and hand it back to him. As I was clearly trying to wrangle him in and get him to listen as best I could. I don’t let him run free. I tell him over and over and over and over that he HAS to listen to mommy and he HAS to stay with mommy. He has two choices, stay with mommy on the ground, or in my arms/cart/stroller. He smiles and runs away. Some kids are that way.

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Alex. My bright, mischievous, brave 20 month old.

If you know me in person, it is fair to say I am not a neglectful mom. You may have even picked that up through following this blog or even my Instagram account. I have committed fully to being their mom. Maybe sometimes to the point that I do get burnt out, but yet here I am. Recently I was very sick and my husband offered to put the boys to bed without me. They both wanted me to come up and help. Jackson said “It’s fine, she will hear us crying for her and just come up anyway.” So even my very bright 5 year old sees me for who I am. A workaholic. They are my life, my job, my world, my very breath that keeps me alive (and often drives me crazy). So when Alex has wandered off for a brief moment and I happened to be in the middle of something else, paying, talking to Jackson, or any of the other million tasks I am balancing in one day, does that make me a neglectful mom? Does every other parent out there never ever take their eyes off their precious porcelain offspring? Have they never looked away for the briefest of seconds only to find their human being child with an active brain has made a decision for themselves regardless of all of the parenting they have done over the years? And the non parents, don’t even talk to me. As Ygritte would say “You know NOTHING Jon Snow.” Seriously, non parents should not judge what an actual parent has to go through with their child on a daily basis. You have NO idea. I had none before I had children. I admit that. Accidents happen. We balance life and children and pets and cleaning and interaction with other people in public and sometimes things happen. I have had bad parenting moments where I think “holy shit. I will NEVER forgive myself.”

There I was sitting on that couch. My heart aching for the whole situation. Then reading up further to try and learn more. I saw the angry cries for harm to come to the mom. I read people calling her a bitch. I felt a rush of anger myself. Anger towards the people who are so hateful. I am saddened that an endangered creature lost its life. I am more happy that a little boy didn’t lose his. I am empathetic towards that mom. Because being a mom is literally the hardest thing I have ever done. It takes a lot out of you every day, no breaks. You do so much as a mom. I wanted to hug that mom. I wanted to tell her that I am so happy her boy is alive. I wanted to tell her I am sorry that people are so cruel. I wanted to ask these people where is their outrage for people hunting these majestic creatures in the wild to eat them? Or the outrage for the NATURAL habitat loss? Are you as angry about that? Or just over the fact that Harambe lost his life while in captivity, a life that arguably was no life at all? Are you going to call for petitions to end the poaching and habitat loss? Are you going to call for petitions to help save them from Ebola? The link has some information about the real threats to Gorillas. Where is your outrage for the injustice that led to them being endangered animals? Or did you just wake up feeling like “today I could really go for some mob mentality?”

I am not perfect mom. Truly. I do dote on my boys. I am devoted to them. My world revolves around them. Sometimes they are all I have to talk about because I am literally with them 24/7. I have a wanderer, as I call him. I don’t know what he will be like when he is 4. I hope that we have worked through this a bit by then. I cannot guarantee that. He has a wild side. He is adventurous. He has little fear. He goes for things he wants when he wants them. He is incredibly smart and understands the world around him. He has a sly grin that lets you know he is about to do something you are not going to agree with. He is only 20 months old. So from one mom with an inquisitive child to another, I want to hug you. I want to tell you I know mistakes happen. I know you didn’t set out to go to the zoo and have your child end up in a gorilla exhibit. I don’t think you’re a bitch. I don’t think you should be thrown in jail. I empathize with you.

I came across this in my IG feed and it seemed fitting for what I have been grappling with since Monday. The world would be a kinder place if we all took a collective deep breath and remembered this.

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I have been so swept up in taking care of Alexander lately. As I should be. We are a few days shy of 6 weeks of his GI issues. He HAS had a few good days mixed in, but then a day or two later it seems to return. Thursday night I took a step back mentally and thought about how consumed I have become. I need to be his advocate because he cannot be his own, but a lot of other things seem to get pushed aside. One of those being posting recipes. I am still cooking and there have even been a few that I meant to get around to sharing but didn’t. Another has been making fun shaped meals for the boys.

Yesterday morning despite all the craziness. Alex waking up hysterical at 6am. It being a school morning. Me trying to film a Pilates video for MarchMATness. (I failed at that! I caught up today though!) I made time to make them a fun breakfast. Jackson was over the moon. Alex yelled at me that there were blueberries on his heart shape french toast sticks. He grumbled then picked them off. You can’t win them all I suppose. Jackson loved his shamrocks!

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We had his GI appointment on Wednesday. The only way I can describe it is awful. I have never felt like I wasn’t being heard quite so much at a doctor appointment. I explained what we had been dealing with. Chronic diarrhea with maybe 3 good days mixed in over nearly 6 weeks. She did a brief exam of him. She diagnosed him with CONSTIPATION. She actually said he is constipated and that some loose stool is just slipping around clogged poop. She then prescribed a colon cleanse for a 17 month old toddler! A colon cleanse. Following the 3 intense days of being on a laxative, she wanted him to be on the laxative in a smaller dose for SIX WEEKS. At which point we would “discuss weaning him off of it.” She also told ME that I don’t feed him enough fiber, without even glancing at his food journal I have been keeping meticulously. She said I also give him too much milk. Something I have never been told by a pediatrician regarding either of my boys. I always fill out their food intake at their physicals. I questioned her on this. My mom was there, she questioned her on this. She just kept insisting he was constipated.

I informed my husband. I told him to pick up the prescription. He did some research while I was getting us all home. Miralax is not greatly received and there are many concerns with it. We both then researched child constipation. We did come across some instances of loose stools being associated with it, however they were more of smears or as I like to call them “hershey squirts.” Alexander has full blowouts sometimes up the back diapers. Multiple a day. These are not squirts. They are giant diapers. We decided not to start any laxative that evening.

The boys’ pediatrician is off on Thursdays. During the day I contacted my husband’s aunt, who is a pediatrician and family doctor. She lives out of state. I explained in great detail Alex’s history and asked her opinion on the diagnosis and colon cleanse. She was very concerned with that recommendation and definitely wanted us to speak to Alex’s Pediatrician as soon as we could. I called her and left a message yesterday morning. When she got back to me she read me the report of the GI with a tone of surprise in her voice regarding the constipation diagnosis. I seconded her concerns immediately and explained that was the exact reason I left a message for her. We were NOT happy with that and we don’t feel that he is constipated with the amount of poop he has. She agrees. She has been at our side since this started 6 weeks ago. She has seen some of the diapers. She told me to monitor him over the weekend. Thursday he had a couple better diapers. Much more normal consistency but yesterday there was another loose one. She is on call all weekend if we need her. She wants to touch base next week. Possibly perform another exam herself and then if it is still ongoing send us to another GI at a different hospital.

I have told people this before, but I am so thankful for her. She has truly been wonderful through all of Alexander’s issues. She has been by our side. She has tried to find us answers and if she couldn’t she has tried to find a specialist that can. She listens to what I have to say. She calls me back whenever I leave a message for her with questions, updates, or concerns. She sees the boys when I want them to be seen. I am not sure what life would be like with another pediatrician and I don’t even want to know. I am so incredibly grateful I came across her when Jackson was 2. At that point in time I didn’t know that she would be such an integral part of our family’s life.

We still don’t have all the answers on Alex, but that is ok. We have been working hard to figure it out. We have someone who is his champion and wants to help us solve this. We will get there. It may take some more time. I have come to terms with that. This whole situation could be worse. We could have a pediatrician that acted like the GI we saw, and then we would be nowhere at all. Luckily, we have one of the great, amazing, and incredible apples in the Pediatrics world.

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He hates EB

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He LOVES chocolate

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These two are my world!

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He likes flying

Life since having Alexander has never been boring! Today I rushed him to the 45 minute window of walk-in hours at our pediatrician. Over the weekend he had a fever that bounced around. He has been irritable, not eating, and barely drinking. Yesterday the fever was totally gone! Except he was covered in a rash on his torso and kept putting his finger in his ear. I called about the rash, they said that was normal after a fever. By nighttime it had spread to his pelvis. This morning the rash was worse and had spread to his face. When I went into his room his finger was in his ear.

I got them both up, dressed, fed, and out the door in record time. I am talking about 20 minutes here! That is unheard of.

He was cleared of having an ear infection! Phewf. However, he does have Roseola. Another virus. He keeps getting slammed with one after the other. On top of that he still has his chronic diarrhea. It flared up a bit yesterday through today.

Tomorrow he has his GI appointment. Our pediatrician did not want him to wait until the end of April to see one, so she called the GI office and had them figure out a way to see us sooner.

I would be lying if I said that I am not stressed out. I would be lying if I said I wasn’t totally exhausted. I would be lying if I said I wasn’t in a constant state of worry. I would be lying if I said that I didn’t feel anxious every time I went to check his diaper. I would be lying if I said I sleep soundly at night. I don’t. Not one bit. I would be lying if I said that this hasn’t started to take a toll on me physically. Last week I was nauseated for 4 days straight. Terrible nausea that barely allowed me to get off the couch. I forced myself to, because I had no choice, but I was barely able to be upright. It took all of my strength.

I have a hard time asking for help. Maybe I am stubborn. Maybe I am too proud. Maybe I don’t want to bother other people. Maybe I am a control freak. I think it is all of those combined. I have been dealing with 99% of Alexander’s medical appointments, symptoms, issues, hysterical moments, record keeping, etc all by myself. My husband is insanely busy with his company. It is in a good way. Growth! But it just so happens to coincide with Alexander going through this rough patch in his health. Life works out that way sometimes. Good and bad together. Nothing is ever truly perfect. Tomorrow my mom is coming to the GI appointment with me. I feel like a slight amount has been lifted off of my shoulders. Even if it means she takes Jackson into the waiting room because he is getting squirrelly from being at the 1203043 appointment of his baby brother’s.

This is hard on him too. He breaks down crying anytime Alex is hysterical and upset. He tries his best to always make him laugh. He just wants his little brother to be happy. Today at the pediatrician he started getting upset before she even performed an exam on Alex because  Jackson knew Alex wouldn’t like it and was going to cry.

I would be lying if I said this hasn’t been hard on all of us.

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Bros

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This pretty much sums up how he has felt since Friday :( 

 

Waiting is hard. For your entire life you learn little lessons in patience. They build up and are supposed to help strengthen you. As a child you eagerly await Christmas morning. As a teen you eagerly await the day you can get your driver’s license (unless you were like me and pushed it off as long as possible). As an adult you wait for all kinds of things.

I am finding all of the lessons in waiting that I experienced to be completely useless. We have waited so much with figuring out answers for Alexander. The more I end up having to wait, the less patience I find myself having.

This week we received the rest of his blood work. Alas, the waiting for that is over. Everything else came back negative for IgE allergies. I was definitely overjoyed about that. We are still not giving him bananas or avocado as he has had FPIES reactions to those. As a precaution we are avoiding kiwi, because kiwi is closely related to both of those foods. Eventually in a controlled setting we will test for them, but that time is not now.

This week we have had a bit of a setback with his bowel movements. His diarrhea has returned. I have been monitoring him all week. There have been worse diapers and better diapers. Today has been worse all around. We are up to 4. One was on the floor while he was airing out because the rash has also returned. After the second diaper today, but two of many this whole week, I made the decision to call and schedule an appointment with a Pediatric GI. I need to get some kind of answer in order to help him. Unfortunately, there are no appointments until nearly the end of April. More waiting.

After the 3rd diaper I decided to call his pediatrician and update her on the return of the diarrhea this week. I know she is out on Thursdays, but she is usually in on Fridays, so I intended on leaving a message for her. She will not be back until Tuesday. More waiting.

Waiting is not getting easier. It gets exponentially difficult. I feel overwhelmed with helplessness because I just want to give him a life that is as healthy as possible. I want him to be as healthy as possible. I don’t want him to get rash after rash from loose diaper after loose diaper. I feel a tightening in my chest at any given moment in a bad digestive day. I sigh a lot. I just stare at him and feel my heart breaking for his tiny little body. He has grown to detest diaper changes. I ache for him when he freaks out over that. I have started to let him watch videos on my phone in order to calm him for every single diaper change, even regular pee ones. He just freaks out. Today, that has not helped. His aversion to it is so strong, knowing he has these BMs, that he loses his mind.

I have Jackson, my helper during the days. He is quick to act if I need help with something. Today it was cream while I wrestled a screaming Alex down after he pooped on the floor. A 5 year old shouldn’t have to be my saving grace during a moment like this. My poor sweet oldest child. The other day at his school his teacher asked if he wanted breakfast when arrived. He had eaten at home but said yes. She mentioned there were bananas. Then he said “just don’t give the bananas to my brother. They make him puke.” It is so wonderful that he is so caring but it also breaks my heart that we are even in a situation that we had to drill that into him. He is amazing. His heart is huge. I am definitely way too cranky and short with him way too often. I keep my conversation open, explaining why I am sometimes so stressed out, especially on bad digestive days. I tell him how hard it can be and how I am feeling. I listen to what he has to say about he feels about it. We hug.

Sometimes after naps, Alex wakes up hysterical. Inconsolable for at least 30 minutes, sometimes longer. Nothing can settle him down. There were at least 2 days this week like that. Today and yesterday were better. Those hysterical afternoons are hard. I hate not being able to soothe whatever is clearly causing him distress. More waiting. Waiting for him to ride it out and I try to hold him and comfort him and offer him whatever he needs.

I hate waiting. For once, it is not from our instant gratification society. For me, it is because after 17 months of bumps in the road, I want answers for my baby. I am tired of waiting. I want to help him. I want to have the proper tools to help him. I don’t want to just keep him comfortable and his butt slathered in cream. But it seems for now, waiting is in my foreseeable future. I will be waiting until Tuesday. I will be waiting until April 21st. I will be waiting for his next diaper, anxious to see if it is diarrhea or not. I will be waiting to see if he wakes up happy or hysterical from his naps. Waiting for my answers.

I love someone rare

It is Leap Day. It is also Rare Disease Day. My sweet little boy is the reason I am talking about this day. This sweet little boy has kept me on my toes since I was pregnant with him. He is always up to something and giving me some kind of scare. From being admitted at 35 weeks pregnant due to low amniotic fluid and possible very early induction to save him, to an umbilical cord that took a wrong turn and took months to close up and heal, to FPIES, to an ER visit yesterday morning because he got his sweet chubby thigh stuck in the crib all night and it was covered in welts, swollen, stiff, and he limped. I rarely have a dull  moment with him.

He is so full of life. He is very brave. I do not see him hesitate in life very often. If he sees something he wants to do, he will 99% of the time go for it. He loves to make me laugh. He loves to feed people or share his food with them. His smile is contagious. I dare you to see him smile and try to keep a smile off of your face. He is a fierce momma’s boy. I say this a lot, but it is true. I am always holding or snuggling him. Did you know, I literally get a standing ovation every time I walk into a room and he sees me. He stands up and claps, cheesy grin plastered across his sweet face. He loves his big brother so much. The way he watches Jackson makes my heart melt. Jackson had his 5 year vaccinations last week and completely freaked out. Alex had been fine mischievously walking around the exam room up until that point. As fat tears fell on my arms while I held Jackson, Alexander walked up, watching. I slowly watched his face transform from curiosity, to concern, to outright devastation, as he too began to sob. I love to hear him say Dada. If I just mention the word Daddy he lights up and says Dada, DA! DADA! That is his biggest buddy. He tries so hard to keep up with the two big guys around here, when they play catch or when they wrestle. Which is frequently to both things.

Then there are the moments where he does scare me because things seem to happen to him at a higher rate than did Jackson. Maybe it is because I am so hyper aware of all things involving him that I notice every small tiny deviation from normal patterns. Or maybe, things just do happen more frequently. It is likely a combination of both. We have had even more situations than I mentioned earlier. I really glossed over things there. I glossed over how scary it was when he was first having FPIES reactions and we had no clue what was happening. I will never forget when his tiny body went into shock and what he looked like. I will never forget the fact that when he was born, he didn’t cry. The cord was wrapped around his neck and the nurse took what seemed like an hour to get him breathing. It wasn’t an hour, it was probably a few seconds, but in that moment, having given birth previously, it seemed like an eternity.

His may not be the most dramatic rare disease. His may not even be the most dramatic case of FPIES. I am so incredibly thankful for that. Every day I am thankful that when it comes down to it, so far, he has just scared us with things that we are capable of managing in a healthy way. It doesn’t take away from the fact that these things seem to happen to him or that he does in fact have FPIES and is IgE allergic to bananas. Most tests came back negative, that one did not. We are still waiting on a few more results, including avocado and kiwi. I can manage these things. I can keep him safe. I am thankful that every day I get to see that toothy silly grin and those big blue eyes and that raspy voice say mom mom mama mom mama mama. There may be moments where I am utterly exhausted or feeling overwhelmed with doctor and hospital visits or just from worry or from regular mom stress, but all it usually takes is a hug and snuggle into my neck to bring me back down. And if I am lucky, big brother Jackson is telling me I am the most important thing in the world, even more important than monster trucks, and you know how much I like those mommy!

Happy Rare Disease Day 2016!

 

 

Elizabeth Stone has said “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” I have known this for the last 5 years, since Jackson was born. It seems to be resonating even more this week. We are on day 11 of diarrhea with Alexander. The pediatrician wanted to see him yesterday when I spoke to her about it. It had been far too many days for her to be comfortable with just riding it out.

In the office he happened to poop, which was actually helpful. Unfortunately, they found black blood in the diaper. Have you ever had moments in your life where time kind of stands still? I would describe it as how they portray it in a movie. A monumental moment in the storyline, where the character seems to move yet the world around them is in slow motion or totally frozen. I have now had two of those moments in my life. This was the second one. I did not expect her to come back and say that. She was gone less than 5 minutes. Alex was trying to tear apart my diaper bag and I was texting my husband back. She sat down to explain this to me. She went through the list of possibilities and what we are doing moving forward. I heard every word, but the world around me seemed to slow down. The smile I had on my face when she walked in quickly vanished. I was oddly aware of the motion of my face changing.

Today, the diarrhea is actually worse than it was yesterday. It has kind of gone back and forth over the past 11 days. He is unhappy at times. Large chunky tears rolling down his squishy plush cheeks. I wipe them away and kiss his sweet little face. I hug him and he snuggles his face into the right side of my neck and shoulder.

He is his normal mischievous self at times. Trying to grab his brother’s robot toy. Tearing apart the cabinet in my master bathroom. Rearranging all of my makeup, serums, and creams. Smiling his big toothy smile as he walks up with his arms out and says “mama mama” He is always a momma’s boy.

This morning I dropped off the additional vials for them to run labs. Now we wait. Now we focus on keeping him hydrated, avoiding an ER visit if we can. Now we hug and kiss him. Now we watch him play as our hearts are in our throats. Now I sleep restlessly and wake often. Now I scrub things around the house because sometimes that is what I do when I am particularly anxious. Now I try to remember that Jackson is having a hard time adjusting to the new way of life around here. Now I try to explain to him that he is important and special too. Now I try to give him extra attention. Now I wonder, where does all of the time go during the day? There is a lot to think of at every moment.

My heart walks outside of my body. Split in half. Each boy carrying a piece with them. The pieces made of porcelain. Alexander’s piece seems to be particularly fragile at the moment. Or maybe it is the carrier of that piece that is fragile. Regardless, my heart has not been my own in a long time. Half a decade. My heart belongs to them and all I can do is sit back and hope with all hope that it doesn’t get even one little chip on it. Knowing full well, the world doesn’t actually work that way. It will get battered and bruised as I sit here with open arms waiting to welcome the halves back whenever they need me.

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