Don’t ever back down ♥️

I have had my fair share of medical nightmares. It would be one thing if they were MY health issues, but they were not. When it’s your baby who is having unexplained and horrifying things go wrong, it is a WHOLE new ballgame. Here is the best advice I can give.

I think the biggest thing I have learned on the road to a diagnosis is this- 
ALWAYS be the ADVOCATE for your child. 
Push further. Question things. Demand answers. Demand second opinions. Don’t. Stop. Fighting. 

For 2 1/2 years my husband and I watched our son struggle and deteriorate. We watched intense regressions to where he could no longer sit without support at 2 years old. We saw so many terrifying and alarming symptoms, all of which doctors had no answers for. 

We had eight hundred million lab tests done. He has literally had so many EEGs and MRIs of his brain that I couldn’t even tell you the exact number. So many hospital admissions that I completely lost count. He’s had two rounds of genetic testing, spinal taps, urine cultures, you name it- the works. Every single test was met with “Everything came back normal.” The doctors were telling us our son was normal, yet he was SO far from that. 

It is NOT normal for a two year old who can usually run to randomly fall over and be unable to walk for hours. 
It is NOT normal to have random seizures with zero cause, zero abnormal EEG findings, zero abnormal MRI results. 
It is NOT normal to have a whole slew of completely random symptoms that do not make any sense whatsoever. 

All of this was NOT normal, so how were we supposed to settle and be told it was? 

How was it that we watched a little boy grow and develop perfectly as he should…. then one day be slammed with looking up orthopedic leg braces and pediatric walkers?!? How did we go from one extreme to another, yet NO doctor could explain why?? 

NO. 

That is NOT what mothers settle for. We do NOT back down and we do NOT take this as an answer. 

We demand. We fight. We are relentless.

When it comes to our babies, we will do anything and everything in our power to help them. That is our sole purpose in life- to be able to comfort them and help them grow. 

I remember getting to this point of no return. Suddenly, all of the despair and emotional turmoil I had been harboring disappeared. Instead, my emotions turned to RAGE. They turned to ANGER. There was NO WAY that I was NOT going to get an answer for my baby. Hell no. He deserved way more than us just blindly accepting the fate that was being laid in front of us. The future that made absolutely no sense at all and had no explanation as to how we got to it.

So I took to the power of social media. I posted every video I could that I believed truly captured our son’s “abnormal” movements and attacks. I gave a run down of his symptoms and his extensive medical history. I laid everything out on the table for everyone to look at. Was it pretty? Not at all. It was real and it was raw and it was our life. And I NEEDED every single person in the world to see it.

I begged. From the bottom of my heart, I desperately pleaded with everyone I knew to share his story. Get it seen by as many eyes as possible. SOMEBODY, somewhere, HAD to have seen this before. I knew he didn’t fit the classic “mold” of ANY disease or syndrome, but somewhere, I knew that there had to be a person who could help us. I was hell bent on solving this myself. If doctors couldn’t help him, then I would. I would never give up and would spend my entire life, up until my last breath, searching for him. 

It was my blind faith that got me to be brave enough to post such a vulnerable, raw clip of our lives. It was a divine force, however, that did the rest. 

Somehow, our prayers were answered. A friend of a friend of a friend saw my post. They reached out to their friend of a friend, who had seen something similar. The stars aligned, I had a possible, tangible answer. He did not fit it 100%, and it was a pretty rough diagnosis to stomach if it DID end up being that, but it was a serious possibility and it was a brand new avenue to travel down. 

As luck and fate would have it, the expert that was recommended to us just so happened to be located in the same hospital that our son has always gone to. An email was sent with a quick recap of his history and symptoms, along with a mother’s absolutely desperate plea to please help us. I begged this doctor, who was a complete stranger to us, to please see him. He may not fit all of the categories, but it was worth looking into. 

I still remember the doubt in his neurologist’s voice. He was on board 100% to explore this possibility, but he was very vocal on the fact that it was highly unlikely we had found our answer. 

Thank GOD for doctors willing to listen. Thank GOD for doctors like Susan Cohn, who could have very easily shooed us away with a reassuring “this isn’t the answer” and a “goodbye.” She knew it wasn’t standard, but she agreed to take him on. Meeting with a pediatric oncologist was the last place I ever expected to find myself, but there we were. 

As the biggest slap in the face and shock of our lives would have it, the CT scan that everyone expected to be normal, was actually… Not. 

NOT normal. 
NOT normal. 
NOT normal. 

Oh my god. 

This brought a whole new level of chaos to our lives. Fast forward months later, a tumor found, a tumor successfully surgically removed, and months of treatment… 

Our son has found his answer. 
Our son is being healed. 
Our son will live a normal life without wheelchairs or handicapped stickers. 
Our son is being cured. 

And it’s all due to the exhaustion, anger, and passion behind a very fed up Mama bear… 
and because of a doctor willing to take a chance. 

I am forever, and ever, and ever grateful for both of these things. For whatever strength was placed inside of me. For however that voice got inside my head and my heart, telling me to KEEP FIGHTING. KEEP SEARCHING. 
DO. NOT. STOP. 

That is the biggest and greatest message I could ever send to any other mother going through a medical nightmare with their child. You do NOT settle. You do not take “no” for an answer. You push and you demand, and when they say they’ve done all they can do… you demand MORE. 

These doctors are wonderful, amazing, ridiculously smart human beings who dedicate their entire life to healing kids. They do not, however, see that child suffering day after day. They do not feel the immense heartbreak that comes with watching your child go through something you CANNOT take away or make better. They do not stay up until 2:00 AM, sobbing over their child, begging God for an answer, researching and logging into case studies and taking notes and SCREAMING into pillows. They do not watch their entire life fall apart and crumble around them because no one can help them. 

Mamas though? Oh, they do. And it’s the mamas that will never, ever stop fighting for their babies. 

Hell hath no fury like a fed up mother. 

Carson Herzog

Diagnosis: Opsoclonus Myoclonus Syndrome

Caused by-

Inflammatory Myofibroblastic Tumor

Age of Onset: 3.5 months old

Age of Diagnosis: 2 years and 11 months old

Previous (wrong) Diagnoses:

  • Unclassified Ataxia
  • Focal Epilepsy
  • Generalized Seizure Disorder
  • Undiagnosed genetic disorder

I will ALWAYS fight for you. ♥️

When you feel robbed

I sit here writing this from the passenger seat of our van, headed to our one of many trips to Chicago to our son’s children’s hospital. I feel like it’s absolutely necessary to maintain a happy, optimistic, and positive demeanor 95% of the time when it comes to medical issues going on in your life. I also feel that it’s just as necessary to let out the anger that encompasses the other 5%. So, that is the nature of this post.

I look back at his chubby-from-steroid-treatment cheeks, and see his feeble smile from his car seat, and kind of just get… mad. I am so sick, SO SICK, of driving to Chicago. I hate Chicago. I’ve never been a fan, even before kids, but after having a sick one who requires lots of visits there, I hate it even more.

I hate that we spend so much of our time coming here. I hate that my 3 year old knows that he gets presents whenever he gets “owwies” (IVs and labs). I hate packing our day trip bag for something as unexciting as treatment day. I hate waking up in the morning with a pit in my stomach, and seeing everyone else’s lives carrying on normally. I know that they should, and I’m not wishing ill on anyone, but it just feels so unfair at times.

I think back to the last three years of his life, and all of the things he’s been through, and it almost feels like we have been robbed. Normal parents have happy videos of their kids stored on their phone, and I am also one of them- happy baby laughs, first time walking, first times dancing… the normal, happy parenting things. I have so many happy moments of our older 2 sons and our baby girl, but then I search through Carson’s library. I look back and the majority of them are me documenting his many symptoms. So many falling videos. So many abnormal eye movement videos. Seizure videos. Shaky hand videos. Screaming inconsolably videos. I feel like he was robbed of the happy start to life that so many other children take for granted. While other children were going to cute little preschool programs, mine was sitting for occupational and physical therapy sessions. While others played outside and jumped on our trampoline, mine watched from the couch because his legs weren’t working that day and he couldn’t stop falling. While other moms packed their bags for the zoo or other fun trips, I packed mine for a day filled with doctors, treatments, IVs and medical discussions. It’s just annoying.

I totally get that I sound like I’m the hostess of my own personal pity party right now, and that’s why I choose to write it all out instead of voice it to everyone. It is honestly so important to remain optimistic and look on the bright side when you’re going through something as trying as a serious, chronic medical battle with your little baby. Typically I do this, and can see that things could always be worse. Sometimes though, I just get irritated. I shouldn’t have to consider the pros vs cons of a PICC line vs port. Our son shouldn’t have to spend so much of his time restricted from doing things everyone else enjoys freely. Getting poked, prodded, cut open, and admitted to the hospital shouldn’t be things his childhood was filled with. He shouldn’t have had to miss family parties and trips to the park due to his illness. His siblings shouldn’t be left without mom and dad countless times, either. Yet here we are.

I know that it’s not forever. This seemingly endless disease WILL end one day, and that is HUGE. We had been looking at such awful, progressively degenerative conditions prior to receiving his Opsoclonus Myoclonus diagnosis. Before finding that tumor in his lung, we spent time talking about ways we’d make our home wheelchair accessible, because a handful of the suspected illnesses we were testing him for resulted with the loss of being able to walk. Things could honestly have gone so much differently, and for that I’m extremely thankful. I try my hardest to remember that, and to remember that all of this will make him, myself, Rob, AND his siblings so much stronger in the long run. It is not my job to sulk and carry on a crappy attitude. It IS my job to make every hospital visit as fun and exciting as possible. THAT is the reason for presents with each treatment day or hospital stay. THAT is the reason I advocate for him, and request child life therapists come to see us or visits to their play room be arranged while we are admitted. THAT is why I grit my teeth, smile and joke with him on the outside, yet at the same time, blog and let out my massive anger and resentment on the way to yet another day at the hospital. We have to maintain a happy demeanor in front of our kids, because they are always watching. They feed off our actions and words, which is why letting it out in a healthy manner is so, SO important. THAT is why I am thankful for the freedom that writing brings me.

Mothers With Special Ones

I recently saw a commercial that struck me to my core. It was from a channel on YouTube called “SickKids,” and it was from the hospital that runs on helping kids suffering with illnesses. Not the flu, pneumonia, broken bone type illness. Not a cough, or croup, or strep throat. All of those are horribly awful and unfair when children come down with them. All of those also, however, go away within time and can usually be made better by a pill or breathing treatment.

I’m talking about the scarier illnesses. The chronic ones. The genetic diseases that have no treatment. Cancer. The degenerative ones. The ones that if they even have the chance of getting better, they must get much, much worse first. Those ones.

The video showed a whole bunch of moms who were the lucky chosen parents of these sorts of kids. It showed them living in their hospital rooms, packing the never ending bags, consoling crying little bald heads. It resonated within every piece of my heart and I ended up sobbing while watching it.

I’ve not been a stranger to the inside of a hospital room. Years ago when we had to do Carson’s first EEG stay, I thought that was the worst thing ever. Unfortunately the last few months have shown me that those days were paradise compared to what we are dealing with now.

We haven’t had a solid answer for him in over 2 years, almost 3. We’ve watched his body twist and turn and just give out at times. Fall after fall, and medicine change after medicine change, things have continued to happen making our stomachs fall out of our bodies all over again. So many times we ignorantly assumed it would just go away. Kids do weird stuff, right? He will get better. Our families are healthy. He will outgrow it.

Well, spoiler alert, he didn’t.

What we are facing now is a tumor inside his little, perfect lung that can’t be determined if it’s dangerous or not. What we are facing now is something the size of a golf ball in my tiny 2 year old’s chest that cannot be safely kept inside. What we are facing now is a rough hospital stay with an awful recovery and a little boy waking up with tears in his eyes having no idea why or how he got there. A tube coming out of my child’s rib cage, when all he deserves to be doing is playing outside with his friends or looking for bugs with his brothers. A 2 year old who I am supposed to keep safe and out of harms way. It is just so incredibly unfair.

Then I think back to that commercial I saw, of the moms of sick kids losing it.

Pounding on the steering wheel crying in the hospital parking garage (been there).

Collapsing in a heap on the shower floor (been there).

Having to stop mid-run because all of a sudden the grief is too much (been there).

Losing it while a nurse explains to them a new medical treatment or where exactly things will be placed into their child’s body (been there).

Lying awake in bed staring at the ceiling as silent tears roll down their cheeks (been there).

Dropping the phone when they get “that” call from the doctor (been there).

Wiping away tears as they head into the hospital (again) with their overnight bags (been there).

Staring at a whole bunch of medications that are supposed to make the sadness go away (definitely been there).

And then what they do next is the most amazing, commendable thing in the universe.

They get up.

They smile.

They hug and laugh with their kids and don’t let them see an ounce of their heartbreak as they maneuver around IVs and tubes and wires hooked up to their small bodies.

They. Just. Keep. Going.

Whether they want to or not, they do not have a choice. They have their moments of break downs and despair, but they get UP and they face the world after pulling themselves back together and attempting to put the pieces back.

And then I realize in my own head, that I have also been THERE.

I have pulled it back together. I have wiped my tears quickly before my kids see me weeping on my floor. I have turned my furious prayers and shouts of anger into words of appreciation that life isn’t worse. I have faced every day with my children, regardless of the horrible and awful diagnoses on the table and testing coming up. Regardless of the trauma I’ve witnessed with my sweet little toddler and regardless of the heartache I’ve been dealing with for the last almost 3 years.

I can then realize, that whether I think I am or not, and whether I think I can or not, that I AM strong. That I WILL get through this. That’s just what they do, and that’s just what I’ll do, too. At the end of the day, it’s not about me. It’s about ensuring my child has the best damn life possible during the parts I can control. And that will forever be the reason why I continue to Get Back Up.

https://youtu.be/HvNF0yFUcx0

Bracing for Impact

The past few days have been nothing short of a nightmare, as anyone would expect them to be. When words that you’re never expecting to hear as a parent come from the other end of the phone, it’s mentally and physically crippling. Sure we knew there was a possibility. Sure we entertained this idea before. The odds of it becoming REALITY though, in our minds, were slim to none. I’m still not entirely sure how we even got to this point, but yet here we are. Still standing, and still functioning. Barely.

It is an incredibly strange mix of emotions that hit you all at once. You’ve been desperately searching for answers for almost 2 solid years… looking at any and every possible diagnosis, researching, studying, contacting parents of other similar children. Showing video after video to any doctor who will listen. Doing the dance of “I would suggest seeing an ENT” and “maybe see an ophthalmologist.” Going from “it’s gotta be genetic,” to “possibly metabolic?” and even “try a chiropractor,” all to no avail. To be told your 2 year old son who you watch struggle so often is “normal” according to every test in the book, only to take him home and witness him unable to even stand for 2 hours. It is exhausting and a full time job.

So you have that seemingly unending journey you’ve been on suddenly seem to have an answer. Maybe not an answer, but a clue. And that clue comes in the form of an unidentified mass in a CT scan.

It’s something you don’t ever expect to have to hear as a mother. We left the hospital that day after doing Carson’s testings with the presumption that we wouldn’t have any results for at least 3 days. We knew only what the nurse joked with, and that was if “something really crazy, like a tumor pops up, you’ll be contacted right away.” We laughed and said our thank you’s and goodbyes. We headed home, even stopped for Starbucks since we’d been up since 4 AM, and eagerly drove the familiar route home, excited to get our little guy back to his happy place of toys and iPads… and to see our other kiddos.

Then that 773 number came in. It’s the only area code that makes my heart stop almost every single time I see it pop up. It didn’t even dawn on me though, what the nurse had said when we were leaving. In my honestly oblivious mind I figured we had left something there, and it was a courtesy call to let us know.

“Hi Mrs Herzog, this is Dr Phitsanuwong. Are you at the hospital still? You aren’t? Okay we need to talk. Yes, there is a problem. Something came up on Carson’s CT scan.”

Yes there is a problem.

Yes there is a problem.

Yes there is a problem.

The world stopped spinning then and there. I couldn’t breathe. My mind commanded a million things. Formulate words. Hold back vomit. Stop punching your leg. Breathe. Breathe. Breathe.

Yes there is a problem.

The words that circled around next were a mix of “what the fuck is happening” and “no.” For so long we have basically accepted no answers and no diagnosis. For SO long he has been a mystery that we hope just “normalizes” as he gets older, grows out of it so to speak. This ended all of that assuming.

I couldn’t really grasp the fact that I was hearing his neurologist say words like tumor, biopsy, oncology department, neuroblastoma cancer. It’s something you have seen, read about maybe, in other people’s children’s or friends of friends of friends. When it is directed at your own though, that’s a whole new ball game.

My mind raced in circles as I held back vomit and tried to command my stomach to get out of my throat. What questions do I even ask? How do I even talk without hyperventilating? How the hell did we get to HERE? Is rob actually tearing up? He keeps it together always, how is this happening? I must be dreaming.

It is weird how the world never stops even though you’re adamant it should. People’s lives go on and they have no idea you’ve just been completely shattered. You can’t even look at your happy go lucky little boy without crying anymore. Your entire perspective has changed and you’re now just bracing yourself. The kind of bracing you do when you see a car speeding at you with no signs of slowing down. Bracing for the worst pain you’ve ever known and hoping to God it misses you. It HAS to miss you. Otherwise that collision will literally knock you down so bad that you may never get up again. If that car comes at you at that speed it’s traveling, it’s sure to be disastrous. That is how I’m feeling right now.

You go on with life and try to not think about it (hah) and try to pretend like everything is normal. Even though you’ve had to cancel plans because you have no idea when the next time you’ll break down sobbing will be, you still respond to messages and phone calls and try your hardest to fake a happy tone. An exclamation mark can make everything seem better!

And this will be our life until his biopsy is over. We will get our kids to bed as normal, send them off to school, respond to friends and family, and volunteer at the first grade game day with no one having a clue that you’re dying inside. We will grocery shop and maybe find some sort of distraction in a binge worthy Netflix series that neither of us will actually be watching. I’ll clean and do laundry and when I feel that tickle in my throat and feel myself gasping for breath, I’ll try my hardest to hold it together. Waiting until after the kids go to bed is a much more ideal time to completely break down and lose it, so that’s what I will do.

And when that biopsy is over, and when those results come in, whichever route this goes, there will be ugly crying. Either crying for the good or crying for the bad, but lots of it either way. Once again, my world will either be completely shattered or pieced back together by that simple 773 number. The only difference is now I do not have that oblivious ignorance anymore. I’m bracing for a head on, full force impact. I’m not sure if that makes it better or worse.

To the epilepsy mamas

To all the mamas sitting in a hospital tonight, this one is for you ❤️

I remember sitting in that small, cold room feeling completely alone. Like a stranger. This wasn’t my couch, this wasn’t my dresser, and I have no idea how to even work this remote. Where are the outlets? How do I get water? Did I remember pajamas? The only thing that I recognize, besides my son, is my bag from home. You may feel like that is the only piece of life you have with you right now, and that’s okay. I’ve been there, also.

I, too, have packed that bag. I’ve stood in my hallway, frozen… having so many things to do but being completely unable to move. My heart beating out of my chest, trying to find clean clothes that would be suitable for an emergency hospital stay, remembering socks. Bring your toothbrush and don’t forget diapers. Phone charger and grab his pillow. Scatterbrained and frantically texting the mother in law to meet at the neighbor’s house to get the other kids, who you feel are constantly short changed and neglected. I’ve been there mama.

I’ve seen my baby’s eyes stop working. I’ve seen him convulsing on the floor, turning blue. I’ve seen him falling, knees buckling, legs not working. Over. And over. And over. And over. I’ve seen the delay of development very bluntly, in my face, and I’ve seen the lists of side effects that go along with every medication he has been on. I’ve heard far too often the screams from blood work and the cries from being held down in a hospital bed. I get it. I’ve been there. I feel it. And I feel you.

I just want you to know how strong you are. How hard it is to parent a child with special needs. How the exhaustion is UNLIKE any other you’ve ever felt. Staying awake all night second guessing everything, and trying to piece together a puzzle that is missing pieces that you may never find. The endless wait for test results. The non stop back and forth phone calls to the doctors. The worry. The heartache. You. Are. Amazing.

This is not what we signed up for, I get that. Never did we picture having a designated pediatric neurology team, or making appointments at epilepsy centers, or seeking second opinions, or needing daily medicine. Never did we expect to have so many questions and have to parent a child who undoubtedly has some sort of developmental delays/sensory issues. I understand. But these kids? They’re worth it. I promise you that.

The nostalgia you get from having a “normal” (I use that term loosely) child meet his milestones is amazing. The feeling you get from seeing a child who has SO. MANY. CHALLENGES. stacked against him excel in those areas? There are no words.

When that speech delayed baby boy looks at you with a big ole goofy grin and exclaims “LUHHH YOUUU,” completely on his own. When you see something click inside his brain and suddenly he starts using that sign language you’ve been working on for SO long. When he has a falling attack and just like that, he’s able to pull himself back up and get stronger. There is NOTHING more powerful than seeing your child succeed in these moments. Your baby, the one who has had a harder life than most adults, thriving and learning. It’s beautiful.

The other thing that you don’t realize you’ll be thankful for is the team that you inevitably gain from having such a sweet, special child. The friends who invest so much of their time helping you to his doctor appointments or watching your other kids when emergencies happen. The family who completely feels your joy when you tell them about a huge milestone your child has met. The neighbors who have dropped everything they’re doing to either just sit and cry with you on their front porch step, or come to your house at any hour when an ambulance is called. The ones who just come inside and know exactly what to do, no questions. Then there are his doctors, specialists, and therapists. Those therapists are a different breed, I tell you. The therapy sessions give you faith in humanity, knowing that adults who have never even met you or your child could love and invest SO much of themselves into his success and development. All of these vital people who you fall back on when you feel yourself spinning.

So yes, we didn’t sign up for this. We didn’t want to hear the words seizures, rescue meds, undiagnosed disorders, genetics, testing, labs, hospital stays, EEGS, MRIs, etc. We didn’t want to know the heartache that seeing your child struggle brings you as a parent. But we were chosen. And there’s a reason for that. You are given so much in this life to be thankful for. Sometimes, even if it all seems like despair, you need to find the GOOD.

The one that’s been a long time coming

Every time I start to formulate words, sentences, thoughts about this I stop dead in my tracks. I’m usually hesitating for one of 3 reasons.

1. I don’t want to jinx things and make them worse.

2. I feel that my version of “bad” is not nearly as bad as others have it, so I quickly become quiet.

3. I worry that if I do start to get it all out there, I will not be able to stop myself from crying.

I can already feel that #3 will be accurate and I’ve barely even started. I’m just going to go for it though.

Truly, I never thought parenting would be this hard. Ever. And I don’t mean the “normal” (what is normal?) hard. I don’t mean the tantrums, the fighting, the whining, the all nighters with teething or fevers or viruses. I don’t mean the drop offs and pick ups, doctor visits, drama with friends, talking back, or attitudes. I am not talking about the 2 year old who wants to be held or the almost 5 year old who can’t figure out how to TALK instead of yell. No. None of that is what I am referring to. It’s going to sound crazy, but that’s exactly what I wish I was talking about. Do you have any idea what I would give to go back to those days? The days of potty training being my biggest issue? The days of my mom guilt stemming from too much screen time. Now it is me laying in bed, late at night, asking if I should have taken Carson to the ER or not. Asking myself if I should have called his neurologist with yet ANOTHER update on him being unable to walk. I wish I had my old problems. I’d trade them all to take these ones away.

I didn’t ever think I would be excited to order my two year old a walker. I didn’t ever think I would need one. Maybe for a Halloween costume one year? Not for my baby. I’m sorry if I’m being depressing or pessimistic. This post was not intended to be uplifting or motivational though. Sometimes, we just need to let out how much life sucks.

Do you know what it feels like to see your sweet 2 year old crying and giving up? Not from being told no to another popsicle, but from realizing that he can no longer walk. That his legs just don’t work all of a sudden? Knowing that he is being tested for certain forms of Episodic Ataxia, and that 6 of them are progressive and degenerative and eventually cripple your child, how do you cope with that? How do you see these adolescents who have been diagnosed with exactly what his neurologist suspects he has, see them unable to feed themselves and barely able to speak while sitting in a wheelchair? Knowing that actually this could be your future.

How do you deal with a non verbal 2 year old, who likely has a neuromuscular disease that also causes crippling migraines, tinnitus, weak limbs, tingling sensations, and vertigo. What do you do when this non verbal 2 year old suddenly becomes inconsolable and then falls asleep randomly during playing? How do you watch his eyes roll in the back of his head day after day after day. How do you keep seeing him fall, hurting his body, his legs getting twisted, head injuries, not being able to keep up with all the other 2 year olds he plays with. How do you deal with every other child his age passing amazing milestones and talking and learning and growing, all while hoping and praying to freaking God that he has some huge developmental explosion coming his way, too. How?

Idk how others do it. But how I cope is by laying awake in bed and falling apart. Am I doing enough? Should I be pushing more? WHY DO DISEASES WITH NO CURE EXIST. Is he too delayed? Is he going to ever catch up? WHY do results take so long? Is he having seizures in his sleep like so many do? Does his body hurt him? Will we ever figure this out?

And then, to top it all off, you have the guilt that stems from your other perfectly healthy and happy children. The 4 year old who loves to wrestle, but when he pushes your already unsteady ataxic 2 year old down (on accident) you want to scream your head off at him. The 1st grader who is so excited to show you his project from school, but you’re holding up a 2 year old who can’t even pick his head up. That parent teacher conference you had to cancel 10 minutes prior to it starting last year, because that special little two year old decided to have a seizure at the same time. Don’t even mention the INFANT who is more than happily rolling around on the carpet by herself, entertaining herself, playing with her toys alone while you sit it on one of his million therapy sessions every week. Husband? Dog? House work? What is that? There is so much guilt stemming from so many places. I wish that I had 5 of me to give the attention everyone deserves.

So no, I never thought in a million years that parenting would be this difficult. People keep saying things like “you are so strong, I don’t know how you do it.” I didn’t choose to be strong. I am not strong. I fall apart usually once a day. Maybe not daily when Carson has good days, but when he has bad ones- I’m a mess. People continue their conversations with me and I act like I’m there. I’m not. I’m internally obsessing over every fall, every height he climbs to, every weird eye movement or blank staring off into space. Wondering if we will ever get out of this living nightmare. Wondering when he will start to be able to vocalize these things to us, instead of us constantly trying to put the puzzle pieces together ourselves. Not only that, but probably the worst unknown, is wondering if my sweet little boy will be diagnosed with something that will eventually take over his entire little life. How unfair. How fucking unfair.

Parenting in a scary world.

Things are scary. Terrorism, especially these days, is everywhere. We are no longer surprised to see words like “mass shooting” or “gunshots fired” in the headlines of the 6:00 news. It’s a grim reality that the news gets turned off when it comes on at our house as to shield the kids from the real life horrors of the world.

Men killing men, mothers killing mothers, innocent children, of all people, going through the unthinkable… So many lives being violently taken away. There is too much heartbreak for normal hearts to bear.

When you get so invested in these stories and the “what’s happening now” section, you find it hard to not become close to paralyzed with fear. There are attacks on our own soil now. People who have absolutely nothing to do with religious debates are being shot point blank because of terrorists. Public places, even just the grocery store, become possible targets. The level of fear and paranoia is heightened in a large majority of people.

The hate starts. The debate amongst ourselves. Rather than unite as a country, we are torn down the middle. Some pressing for gun reform, others pressing for impeachment. It never ends.

So, to a mother who lives for her babies, what in gods name are we going to do? I wish there was a magic solution to this hate and violence. I wish I could keep my children ignorant of these horrible, evil monsters for their entire lives. I wish that the fear in the back of my mind when someone looks preoccupied or anxious and reaches into their pocket would go away. I wish my nerves could be calmed and I didn’t have this horrible reality of what we are living in to deal with. I wish life was just, easy.

When you take a step back and look at the big picture of what just one tiny person can do in a world so big and unfathomable, it seems dismal. Hopeless. Pointless even. But then you remember you have 2, soon to be 3, little people to raise and bring into this world. That responsibility is on you. Whether we live until we are 100 or die tomorrow, that is beyond any of our control. So let’s not ponder the scary “what ifs” or let fear and paranoia paralyze, or even simply distract us. Let’s instead divert our attention from bad to good.

Raise our children the best way possible. Show them love. Lots and lots and lots of love. No matter how much you overdo it, it can never possibly be enough. This world does not have nearly enough of it, so lay it on thick. Teach fun. Teach innocence. Keep it light and simple for as long as you possibly can. One day, the serious questions will begin. And one day, the people asking these things will be able to handle serious answers back. Don’t rush it.

Embrace childhood and let them run and jump and scream. Teach them to be fair. From the very beginning make sure you engrain in their souls the value of human life. Teach them how precious it is to be alive, and all of the good in it. Teach them that no matter how angry someone else makes us, it is never acceptable or allowed to hurt them. Instill respect, fairness, and peacefully standing up for what you believe in. Help those who need help, and do not dare to think twice about doing this. Compassion goes a very long way, and in the end we are nothing without it.

Teach them fearlessness. That nobody in this world is going to stop us from going out and taking in each day. We have just as much a right to a happy, fulfilled life as anybody else out there. Fear will not keep us inside our homes or outside of fun places. At the same time, teach them defense, but make it fun. Do not scare or worry them. Having an emergency plan will ease your fears.

Embrace differences. Explain how vital it is for humans to look, act, and speak different from the rest. Teach diversity in religion and more importantly, emphasize acceptance. Our differences are what make us interesting and should never be looked at as negative.

This world would be so much more different, and so much more beautiful, if all of our parents raised us this way.

For now, I smile

I look back on our days together, before the kids came. Before mortgage payments, grocery shopping, doctor appointments, and babies demanding almost every second of our attention while awake. The days where our sleep wasn’t interrupted overnight, and where we got our kicks out of partying, chugging, and watching TV or movies together for hours and ordering take out. We had all the time in the world, even though it didn’t feel that way. All we saw was work 5 days out of 7 with only 2 days off. Saturday’s and Sunday’s were what we lived for. We moaned and groaned when anything interfered with those weekend mornings and being able to sleep in. We thought we were tired. We thought we were busy. My, how time has changed.

I wouldn’t trade these days for anything. Nothing. One day our lives will go back to having our own free time, uninterrupted showers, and shopping trips that don’t result in temper tantrum meltdowns or diaper changing breaks. One day I will shower again every day and be able to spend time getting ready, not judging my outfit based on if it has stains or smells funky. Our kitchen table won’t have a strange sticky residue under the places where the kids sit. Toys won’t be found under our covers or in our shower. We won’t have the normal dinner time battle of “three more bites and eat your meat! Eat nice! Stop, sit down!”… Etc etc.

All of these things will one day be gone, and replaced by free time and sleeping throughout the night. Eventually we will have time for each other again. We will go on vacations and date nights, or be able to just get up and leave without packing up 2, soon to be 3, little ones. Our lives will no longer be focused on babies, and will start to feel weirdly….. Empty

Maybe in 10 years I will be excited for those days. Maybe I will embrace no longer having tiny people sucking energy and life out of me every day. Maybe. For now though, I smile. I often find myself thinking, “my heart is full.” As nice as that freedom was so long ago, nothing compares to what I have now. Waking up to goofy grins or hearing baby-babble sleep talking in the middle of the night.. Watching new words develop… Witnessing the attitude a four year can possess & seeing just how much your child is truly just like you… Little, sleepy arms stretching out only for their mama to cuddle them to sleep when their legs are too tired to carry them another step… The constant “I love you mama”s and the reminders that even when you feel like a total failure, your kids still idolize you beyond belief.

What’s more is watching the person you are in love with go through all of these same things, too. Watching that macho type man, who usually never really talked about feelings, run back inside because he forgot to say goodbye to his kids. Seeing your husband take the time to teach your sons things you wouldn’t have even thought about. Those uncontrollable smiles they get when they watch their daddy become the silly monster hiding, or the tackling, wrestling King. Seeing a softer side of a rough-around-the-edges man rub your pregnant belly. Nothing compares.

While it may be hard and it may be exhausting all the time, it’s worth it. Getting interrupted every 30 seconds while trying to carry on a normal adult conversation, it’s worth it. Hearing the whining and crying for toys that don’t even exist and your house usually looking like a tornado hit it… Worth it. The ridiculous amount of work and preparation it takes to have any alone time or date nights with your husband… Worth it.

These days are crazy, unpredictable, chaotic, yet sometimes completely mundane and repetitive at the exact same time. One day, our lives will be different. For now, I smile.

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To The Mother I Never Thought I’d Have

It was over 10 years ago that I lost my own mom. I remember her face, her hands, her singing in the car. I remember admiring her for her strength and her courage to speak up to other people. I don’t think I could ever forget that little blue ranch on 804 Regent Street or spending our Saturdays garage sale shopping and bargain hunting.

When she passed away from breast cancer it wasn’t just her that died that day. The possibility of so many future memories were taken away. Who would get me ready for my first homecoming dance? Who would I ask about where babies come from? Who would buy me my first bra or be there to hold my hand through my first break up? All of the things that a little girl needs her mom for, all of those cherished memories that so many have buried deep in their hearts, all of them… All were ripped away without me even knowing it.

So when a new woman came into my life and expressed adoration, love, and general selflessness I was a bit taken back at first. I hadn’t known maternal love for quite a while up until then. I had never even imagined finding someone new to fill those voids that I knew were to come one day…

Until my mother in law.

I don’t think I could ever fully capture just how grateful I am for her, but I started this blog today with every intention of trying.

It goes without saying that you love your own children more than you love yourself. You would give the shirt off of your back for them, spend hours up at night for them, drive an annoying distance if they needed it, you name it. What doesn’t go without saying though, is that you would do any of these things for the people your children love. Mine does.

It’s her that I call when one of the boys is sick, Rob is on shift, and we are out of diapers. It’s her who goes the extra mile all the time to be sure my family is taken care of and always thought about. It was her who worked a full time job, came home exhausted, yet still cooked and put dinner on the table for me. It was her who was there to help plan and create every shower to my name. It was her who would come home from shopping with the cutest things for my kids, always thinking of others before herself.

It’s her who listened to me talk incessantly about every single teeny tiny detail of wedding planning, and the entire time act beyond interested and intrigued… And it was her tears that truly made the feeling of maternal love felt for me on our wedding day. When we are all sitting around watching TV or on our phones, it is her that is lovingly watching my boys playing together with a smile on her face. Through her reassurance and guidance I have been able to (almost) fearlessly dive into the world of motherhood and raising boys the right way. I had never even thought the possibility of having a mother to share these memories with was possible until her. I am forever grateful.

For all of the cooking, cleaning, laughing, crying, advice giving, and just listening… I don’t think I have ever just thanked her. For being one of the most selfless people in the world, even after raising four children and being worn out from all of those crazy years, yet finding a way to still always put everyone else first.

Thank you for loving my kids as much as I love them. Thank you for supporting my parenting decisions and for always backing me up whenever I need it. Thank you for your wisdom and your stories, for all of your help, and for scrubbing my dishes when I was a week postpartum and scared beyond belief of now having two children to keep alive.

Thank you for that one time you dropped what you were doing to meet us at the ER for an accident Parker had. Thank you for bringing me a margarita while I was in labor at the hospital, for changing countless poopy diapers, and for always knowing what my kids like without even having to ask. You are truly one of the most involved people in both of our boys’ lives, and I can’t even describe how much it is appreciated.

You are selfless. Strong. So hardworking and so loving. You deserve the world if I could give it to you, and sometimes I really hate that I can’t. You have not only filled the role of “grandma” with flying colors, but also a role that I had never expected to be filled again… And for that, there are no words.

Thank you, for everything.

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Motherhood… to Connor

I remember as if it were yesterday all of the preparation that went into your life before you were even born. I remember finding out I was pregnant at 21, unmarried, in a then tumultuous relationship like many 21 year olds are, and crying hysterically at the thought of my life changing forever. I had known from a very early age that I wanted to be a mother. I knew that loving, cuddling, and tending to children was forever a passion of mine and I often times dreamt about doing it myself, having my very own… Not just helping other parents out in daycare or as a nanny but for real having a little human that I would be responsible for. Rob and I toyed with the idea of kids at a young age. We talked about it often but never thought it could happen to us. As a naive 21 year old I always thought it was impossible. I loved him so much, but at that time in our lives our biggest concerns were where we were going on Friday night and fighting about him being too sarcastic. I look back on those days with a smile. We fought as kids do. We argued and loved hard. We had both wanted to be in that relationship for so many years that when the world finally allowed us to be together we would have done almost anything to keep it.

When that test appeared positive at 5:30 AM in my now in law’s house, the world turned upside down on me. Even though I had always wanted this more than anything, I couldn’t help but to panic. We had no idea what we were doing. The amount of years I had spent working with children could never fully prepare me for going through it myself. For real this time. It was happening.

I remember every doctor appointment. As awful as it sounds, I always was bracing for the doctor to tell me he couldn’t find a heartbeat. I just truly didn’t believe it would happen. Even at nine months along when there was no arguing with the constantly moving, elbow in my ribs, heartburn ridden exhaustion… I still had my fears and my doubts. Something I had wanted and yearned so long for was about to be my own in one short month. I remember thinking God would take it away from me. It sounds horrible, but when you lose someone you love you become very hesitant to believe that good will come back to your life.

I met that pregnancy with doubtful bliss. I remember meticulously picking out paint colors for the little side room nursery my in laws were gracious enough to let us take over. They welcomed me in their home with open arms, and I had instant visions of the crib color, bedding set, wall decor… The paint I had picked out at home depot just didn’t cut it once we brought it home and saw it in the nursery’s lighting, so back to the store we went to pick a new one. I hand painted the letters of your name to be hung up. I washed, rewashed, folded, refolded, organized and reorganized all of your clothing drawers. I researched laundry detergent for babies. I researched strollers. I researched pediatricians. I guess it’s safe to say I researched everything. I was so so so amazingly gracious to even get to plan these things. All for my own child. Not just the babysitter or daycare worker anymore. I prayed that my reluctant bliss was normal and that you would arrive perfect and healthy, despite the nagging fear that something just HAD to go wrong before October 11th. This was too good to be true. It had to be.

But it wasn’t.

It sure feels that way, though.

You came into the world kicking and screaming that beautiful newborn cry. You took your first breaths in front of me and your awestruck daddy and you nestled immediately into my arms. All of the doubt, all of the hesitation, all of the fear… All of it melted away as you melted my heart. You were here. You were real. You were so soft and so perfect and your cheeks were just to die for. All of the love I have ever felt in my life could not even account for a measly fraction of what I felt for you. It truly was, and still is, out of this world. A love that is so overwhelming and so indescribable that you cannot and will not grasp it until you have your own child. And finally…. I did.

You were perfect and you still are.

I have been blessed in more ways that I ever could have imagined possible. I got to go through all of these amazing firsts and extraordinary love not only once, but twice. Your little brother worried me that I could not possibly hold anymore love in my heart. It was already so full! How could it hold more? It wouldn’t be possible and I wouldn’t love the new baby nearly as much as I did you.

Then he came and life was never the same. My heart not only grew, it doubled and tripled and near exploded with love. And to my surprise, every day it grows a little more. When you say these little hilarious tidbits that your daddy and I look at each other with “where the heck does he come up with this stuff??” faces… It grows. When your little brother learns the game “I’m gonna get you!” and runs away squealing with delight as you chase him… It grows. When I wake up with the sunlight and still see your sweet smiling face next to me, even though you are three years old and everyone tells me to gate your door off so you stay out of our bed for once… It grows. It grows with every interaction I watch between you two little perfect boys and it continues to with every new milestone you hit. I don’t ever want these days to end.

I still remember the feeling of yearning for children before I was ever pregnant. I imagined and fantasized about what motherhood would be like one day. I can say with certainty that it has exceeded my wildest dreams. The pitter patter of tiny feet running across the floor… The giant-knock-you-over type of hugs… The baby jelly rolls behind the knees and the big old bellies that carry through until early childhood… The jibber jabber that only you understand and everyone else looks quizzically back at me with raised eyebrows going “yeahhh….” (Pretending that they have any idea what your baby just mumbled since it sounded like a made up language). The bond between us that only I and your daddy get to fully experience.

Nothing could be better than this. Nothing.