The Never Ending Story

And so begins the never ending story of moving. I’ve pulled some boxes up from the basement. I’ve Found the tape and sharpies, unbundled the bubble wrap and found the packing peanuts. I’ve talked to the kids and got them on board (at least as on board as two toddlers can be with any plan). So here we go, deep breath, big stretch, and here we go. One box down, then another, and another. Soon I’ve got a whole wall stacked high with boxes. Two large bags full of donations stand guard by the door. I feel like I’ve made some good progress, maybe this will be easier than I anticipated... that’s when I notice the chaos around me. Everything is a mess, between my packing and the kids playing every space on the floor is covered in toys, blankets, pillows, and cushions. Time for a break, quiet time! Off to bed for Zoey. Isaac doesn’t like to nap so much anymore but he will lay quietly with me on the bed while he tube feeds and he usually falls asleep during that time. I’ll just lay down for a minute, close my eyes for a second. I’m so tired. I drift of to sleep dreaming of the new house, the fresh start it offers us. Yet it’s familiar and safe, a haven for us. If I can just get past the packing part I know the next destination is home.

What do you need?

The floor is so full of toys you can’t move without stepping on something. The counters are covered in piles of dirty dishes. The mountain of laundry is so steep and high you can’t even open the door to the laundry room. I can’t remember the last time I showered. There is so much to do but I am stuck. Paralyzed by a crushing desire to sleep. I am so exhausted, so overwhelmed, so overextended.

People ask me how they can help. They tell me just to call if I need anything. The truth is I am not going to ever call someone up and ask for the things I need. Maybe some people would be able to muster the guts to do that but I don’t have it in me. So here, this is what I need. I need someone to send in a fairy godmother who will make my house spotless, have the toys organized, and sort through all the unpacked boxes in the basement. I need a feeezer full of good, healthy, hearty, home cooked meals that I didn’t have to make and that my children would enjoy. I need a millionaire to send money to pay for the bills that are piling up and the medical expenses that won’t quit. I need someone to watch my kids, so I can breathe, sleep, shower, eat a hot meal, take care of myself. I need to not worry about my kids the second they are out of sight. I need my son to get better. I need the fight for funding to be over. I need my leave to not be over in 5 short months. I need to not have to shove a tube in my kids nose so he gets enough nutrients to survive each day. I need to not have a different appointment (sometimes multiple appointments) each day. I need to not feel like I am drowning.

It’s been a hard day and I’m feeling sorry for myself but it doesn’t erase any of what I said. I wish I could just go to bed and sleep for a few days or take a vacation for a while but I have to keep going, keep fighting, keep swimming. I have to do it. My babies need me and no one can take care of them how I can.

That is enough people for today

I've been an official special needs parent for two and half years now. It started with little miss Zozo, her early appearance and hip dysplasia along with some fine motor and speech delays and it has continued with sweet Isaac, his challenging  roller coaster ride through epilepsy.

Often I talk about the challenges of special needs parenting, the isolation, the anxiety, the exhaustion. Today though, I wanted to reflect on one of the really positive aspects of our journey. Through my children and because of my children I have learned how to advocate. I am my children's protector, their guardian, their voice when they can not speak for themselves. I have been forced to find my voice and to become confident in it. It definitely took me a while but I've become pretty great at advocating for my children, my struggle now is to advocate for myself. I've never really been great at sticking up for myself. I hate confrontation, I am fairly timid, and I am the absolute definition of an introvert. 

Today I found my voice. Today I stood up for myself. Not just once but twice! The first was not too difficult and just kind of naturally happened. It was through an email exchange, the other party made a mistake and was trying to charge me and extra fee. I pointed it out to them and their answer was to reimburse half of the extra fee. I found this unacceptable and told them so. I took me about half an hour of writing and rewriting the same email but I sent it in the end. The best part... they listened to me! The apologized and refunded me the full amount as should have happened in the first place. I was proud of myself and felt a surge of new found confidence.

It wasn't long after that the next opportunity to exercise my new found superpower came to pass. I was out shopping at the second hand store with my little's and my cousin. We managed a great haul and were very excited about our new treasures as we pulled into the check out line. The cashier started ringing through my purchase and quickly ran into a problem. The transformer dress up costume I had found for Isaac was not ringing through correctly. It was priced at $7.99 and the cashier was insisting this was some mistake and it should have been $34.99. I told her that was a ridiculous price for a second hand costume and I thought she was incorrect as the new version of this costume they also carried was the $34.99 one. She called over the supervisor to correct the price to the $34.99 on her till. I asked the supervisor to stop and double check this as I was sure the costume I had picked was the previous year's model. The supervisor argued with me and punched in the "correct" price. At this point I all out demanded they double check this. They finally argued with some huffy sighs and eye rolls. I also pointed out while we were waiting that they are the ones that had mistakenly priced the item and the scanning code of practice would disagree with what they were trying to do. To be clear it wasn't the sticker type of price tag that someone could have swapped it was the type they have to use a gun to attach to the costume. This costume was also missing the mask so there was no way it was a new costume (we already had the mask at home from a garage sale).

After several minutes of this supervisor and cashier berating me telling me how I was completely in the wrong and causing them extra work as well as holding up the line for other customers the girl who had been sent to check things out came back. She confirmed that it was in fact missing the mask and was last years costume. The supervisor let out the longest most begrudged sigh I have ever heard. She didn't even address me at this point simply muttered to the cashier and left. The cashier turned to me and said, "We will give you the $7.99 price." I replied with a polite thank you and finished my transaction.

After we left the store I was literally shaking and had to seriously calm down by rehashing the situation over and over with my cousin. She was probably ready to tape my mouth shut so she didn't have to hear anymore about it. Thanks Amy, I love you! It took about an hour but I finally calmed myself down enough that I started to feel good about standing up for myself.

And on that note, that is enough people for me today. Time to go crawl into my blanket fort with the kids and watch Toy Story.

My sweetest boy; my truest love

Parenting a special needs child is hard, there are moments that you feel that you might just break. Every time I hear about other kids that are the same age as Isaac, honestly even kids that are much younger than Isaac, developing well and doing things he “should” be able to do, it breaks my heart a little. It doesn’t take away the joy and pride I have when my friend’s baby said the alphabet clearly for her first time or when she started to recognize letters. It doesn’t make me feel any less excited as I watch my nephew grow, develop, and conquer each and every milestone like the amazing little guy he is. It just makes me a little sad for Isaac. I’m mourning the loss of what I thought his childhood would be. The thing is though, no matter how many of the sad moments or the hard moments we have there is also a great joy in raising a special needs child.

I’m sure any special needs parent can attest that raising our superhero’s is something beyond words. The moments when my baby snuggles in tight to me and still falls asleep on my chest are moments that most parents don’t get to have with a four year old. The pure elation and pride I feel when my baby makes a friend is inexplicable. The tears of joy the spring to my eyes when he goes down a slide by himself or climbs the stairs without clinging to me are so genuine. Those secret moments of giggles we share at silly things around the hospital, those times my baby whispers he loves me or tells me he is ok are heart-exploding. The very best part of my sweet little boy is that there is something there, some little part of him and some little part of me that no one else will ever see or connect with. We cling to each other, we shelter each other. I am his protection and he is my strength. My sweetest boy; my truest love.

Eye of the storm

I’ve been kept away from writing for a while, things were so chaotic that I barely had time to breathe never mind actually sit and put my thoughts in any semblance of order. It felt like I was caught in the middle of a war zone, trying to survive each minute, holding my breath as I navigated around a field of land mines just waiting to explode under my feet. I was struggling just to survive, to make it through each day, there just wasn’t anything left. Writing was something that was so far out of reach it didn’t even cross my mind.

We were blindsided by the news that Zoey wasn’t really as caught up on her milestones as we thought. She is doing well and we have started therapy to help her with a few things but it added to our already overwhelming schedule of medical appointments. It also crushed me under a wall of mom-guilt. I often feel that poor Zoey gets the short end of the stick, her brother needs so much now and she is so independent, sometimes I feel we take advantage of it. I felt like I had been paying too much attention to Isaac and should have noticed that she was behind with speech. I should have realized her tantrums were beyond normal behaviour. I should have spent more time with her. Maybe I should have let someone else stay at the hospital with Isaac a few nights so I could be with her more. Ugh mom-guilt. I felt so angry with myself and so sad for Zoey.

Around the same time we found out Isaac’s epilepsy was evolving dangerously. He has developed several new types of seizure, each more concerning then the previous. His last EEG showed he was having seizures every 10-15 minutes (although many not visible to the naked eye). His medication regimen was not enough. We immediately started the ketogenic diet as instructed by his neurologist. At first the diet wasn’t too bad. It was lots of learning and the sure the weighing of food, insane grocery bill and difficult meal planning were a challenge but we were figuring it out. The thing was no matter how hard we tried it wasn’t helping. Isaac continued to have seizures even more frequently then before the diet. Let me be absolutely clear here, I do not think the diet increased his seizures I think that it just didn’t help to control them. After several adjustments on the diet we decided, (we meaning Shane and I plus the neurologist and dietician), decided to transition to an even more challenging version of the diet and add in another medication. This new version of the diet was hell. We could not get Isaac to eat the fat required to keep him in ketosis no matter what we did. I would follow him around all day with spoon fulls of food begging him to eat. Mealtime took over our entire day. When I wasn’t fighting Isaac to eat I was doing the meal prep for the next meal, including calculation ratios, measuring and weighing food, figuring out how to hide fat and praying that my efforts wouldn’t be completely rejected. I would spend all hours of the night researching ways to get Isaac to eat enough fat.

We also noticed the new medication was really taking a toll on Isaac. Between the diet and new medication he had constant headaches and stomach aches. His speech was so slurred we could barely understand him, he ended up back in diapers, his processing was so slow, he stopped sleeping. My child wasn’t even there anymore. This medication was doing what it was supposed to, it slowed down his brain. After many conversations with our team we decided to stop the diet. Isaac is still on this medication but he is adjusting well to a slower titration schedule. With being allowed carbs again Isaac has much more energy and we added some melatonin to his medication regimen to help him sleep a little better. We are still averaging about five hour of sleep a night but it’s better. Surgery is our next option and we are beginning to explore it seriously. We know surgery won’t cure Isaac but maybe we can get some seizure control and maybe we can come off the worst medications. We just had Isaac’s MRI done but won’t have results for a week. Next up we will get some blood work and an ultrasound to check on the progress of Isaac’s liver recovery. After that we should have a couple months to breath before our next planned admission for an eeg involving contrast and another mri.

I don’t know if the storm is settling or if we are just in the eye of it but either way things are feeling a little better now. Being off the diet has given us back a lot of freedom. I feel like someone unlocked my chains, I can almost make it out the prison door!

Once upon a time, a long time ago...

Once upon a time, a long time ago...
I worked at Canadian Tire. I was a fifteen year old, high school student trying to save some money for college. Now as an adult, I still frequent the same store and though much of it has changed one thing has remained the same. The lollipops. Not those dinky little suckers, the big round lollipops. They have always stood in there little wooden trees right on the counter beside the cash register; much to the dismay of mothers everywhere. I remember that every kid would ask for one, every single kid. Most of the parents said no and left it at that. Although if it was just the dad with kids there was a good chance he would give in. Every once in a while there would be those moms that would let there kids have the sugar-filled, cavity inducing, candies. These were my favourite families! The kids would be so happy, usually polite, and the parents were so kind. For some reason these families were #familygoals to me. Maybe it’s because my mom really didn’t give in when we begged for these kinds of things. (As an adult I totally understand her reasoning.) Anyway I remember thinking that one day when I became a mom I would be the kind of mom that bought her kids lollipops.

I did it too! For a long time, pretty much since Isaac has been big enough to ask, I bought the lollipops. Dollar store, Canadian tire, Walmart, it didn’t matter. When we had to run errands the kids got a treat most of the time. I always felt so lucky to be able to indulge them in these silly ninety nine cent candies. It seemed like such a luxury to me to be able to do this for my kids.

Today we had to go to Canadian Tire, it was one of the first times we have taken Isaac to the store since he started the ketogenic diet. He did really well all the way to the end. We got to the cash register and he spotted the lollipops. He was so sweet and polite about asking for one. He even asked Zoey what colour she wanted. I was so tempted to give in to my sweet, adorable, polite little boy but I knew I couldn’t. He hasn’t had a big seizure in two weeks (little seizures still appear unchanged)! I really want keto to work and I have to give it a fair chance. I denied my child his precious treat and immediately it caused a meltdown. Both children were crying, begging for the candies, not even screaming, just pleading ever so politely through the tears. We gathered the kids, our purchase, and the diaper bag and tried to get out of the store. I made it through the first set of doors and held myself together. It was right before the second set of doors that a lady was handing out candies. She started to approach us and I shook my head at her, fast enough to shut her down before the kids noticed her. This is when I felt the hot tears prick at my eyes.

We got to the car and Isaac was stilled crying. I felt like such a mean mommy. I settled him in the car and tried to explain to him why he couldn’t have the lollipop and promised him the candy mommy made instead. He was still so sad and I knew he really didn’t understand.

It was all ok in the end, we made it up to him with a trip to the pet store and some plastic dinosaurs we found at the dollar store.

Shadows in the dark

I sat beside your bed today. I read you story after story. I held your hand and prayed with you and tucked you in so tight. You asked me not to leave your side, you told me you were scared. I thought you were just being silly, a phase like toddlers have. I thought you were imagining monsters under your bed, seeing shadows in the dark. I didn't know your demons were real. I had no idea the fear you felt each time you tried to sleep.

Each time they came, I saw it. I saw the fear in your eyes as it disrupted your brain. I felt your pain, my love. Second after second. Minute after minute. The time crept by, and after each I held my breath, hoping there would be no more that you might find sleep at last. There was always another just waiting in the shadows.

I didn't know how bad it's gotten. I'm sorry. I wish I could make it stop. I wish I could hold you tight and take away the fear. I wish I could take all your pain and help you more my dear. For now I will just sit by your bed and hold your hand. We will keep praying with all our might. I'll stroke your brow and rub your feet. I will keep you safe. Together we will fight the shadows in the dark.

What is your happily ever after?

This morning I woke up cranky as hell. I was so tired and would have given anything to go back to sleep. I wasn't even out of bed yet and I felt the soul-sucking, bone-crushing exhaustion wrapping it's vice grip around me. I knew I needed to find a way to feel better about the day, I needed to dig deep and find the strength to carry on. I got up and washed my face with ice-cold water. I brushed my teeth, pulled a brush through my tangled hair, and found an old pair of legging to put on. I helped the kids get ready for the day and found them some breakfast.

We spent the morning immersed in a world of make-believe. First we played with the potato heads and princess castle. We built towers and bridges out of lego. We pulled out the car mat and drove on the cartoon roads. Finally as the morning wore on and the littles started to tire they decided it was story-time. We read book after book after book. Stories about colours, animals, dinosaurs,  numbers, and great adventures. Many of the stories ended that classic way... "And they lived happily ever after. The end."

"Mama, what happens then?" Isaac questioned. After I managed to stop being flabbergasted at the fact that he knew the story doesn't really end there I thought about his question. "I don't know babe. What do you think happens?"

This question hit me hard. I remember reading books and watching movies as a kid. I remember wondering what happened to all those royals after the wedding. In my little mind they always moved to the country, kept chickens and cows, usually there were horses involved and of course babies would follow. I guess there was some weird country mouse crossover in my little brain.

For Isaac, he usually tells me how the characters go swimming or to the park, sometimes he tells me about a new adventure they go on or how they go see their grandparents. Today he told me that the dinosaur in his story was sick and needed to go the doctor to get some pokes. "It's ok though mom, the doctor will make him feel all better." He reassured me.

It's interesting how these happily ever afters make the characters from the stories so much more real. I wonder what Zoey will think about what comes after happily ever after.

Blindsided

I wanted to write about this earlier but the words just wouldn’t come. It was too fresh and every time I started a post the lump in my throat would get harder to swallow, the tears would prick the corners of my eyes, my stomach would sink, and my heart would break just a little more.

I’ve been really open about Isaac’s diagnoses and continuing struggle to find a way to control his epilepsy. I’ve never hidden my struggle with postpartum depression and anxiety. I’m a sharer, I tell people things they probably don’t want to hear about. I don’t keep things to myself, good or bad. It is a coping mechanism for me.

I needed to start this post with those words because I feel like what I am about to share is unbelievable. I do not share this for sympathy or attention. I’m sharing it because saying the words out loud let’s me feel them. It makes things real and it allows me to find a way to start managing, to keep going, to be strong.

Most people know Zoey was born a little early and had some health issues in the beginning. She was what is classified as late preterm. It means that while she was early she was almost term. Her prematurity should not have caused her to have any delays. We did expect some gross motor delays because of her hip dysplasia , being in a brace that makes it impossible to move your legs for six months would definitely cause this.

Zoey has been followed by a paediatrician since birth and we had an appointment with her this week. We knew she had caught up on all her gross motor skills and at our last visit we discussed a very mild speech delay. I honestly thought that Zoey was doing really well, I knew her speech was still a bit behind but I thought it was probably just a second child thing. I knew that she often had tantrums but I thought that was probably due to the fact that she was jealous of the attention her brother had been getting. I was wrong.

Zoey’s paediatrician noticed some fine motor delays and that her speech is much further behind than we thought. The doctor also had the pleasure of witnessing one of Zoey’s trademark tantrums. Toddlers are known for having epic meltdowns over tiny things and throwing tantrums over nothing but what is concerning when it comes to Zoey is that she is not able to be distracted during a tantrum nor can she be consoled. After a thorough discussion of the number and degree of tantrums Zoey has in a day we delved deeper into the speech issue.

Zoey’s paediatrician believes that the issue with Zoey’s speech is more serious than a simple delay, she believes Zoey has something called apraxia. Apraxia is a motor speech disorder where the brain does not allow a message to get to the mouth. So basically Zoey is capable of understanding us and she knows what she wants to say but the words don’t come out properly. It is causing her great frustration as it is hindering our communication with her.

All of this along with some fine motor delays has led the paediatrician to believe Zoey needs some intervention. We will be starting speech therapy and having someone come to help us manage her behavioural issues. To be clear Zoey has not at this time been diagnosed with autism spectrum disorder however, the her paediatrician is considering this as a strong possibility.

So here we go...

The last 8 months have been really hard on our family. We have been in what felt like a constant tailspin and getting by in survival mode. This month Shane and I finally realized something had to change or we were dangerously close to breaking. Between Shane running his company, me trying to work and go back to school, Zoey needing a little extra push to meet some milestones, and Isaac locked in a fierce battle with epilepsy, we are overwhelmed and exhausted. We had so many long, middle of the night conversations, even more loud disagreements (ok fine fights) during the daylight hours. What were going to give up? Both of us love our jobs, one of our core values as a family is the pursuit of ongoing education, but the thing that is obviously non-negotiable is our kids. After weeks of going back and forth, and a thorough discussion with our paediatrician we came to a decision. I took a leave of absence from work and applied for the family caregiver benefit.

The actual process of applying is easy, it's the waiting game to see if we are approved that is hard, it is the actual realization that we are in a place where we need to apply for this that is soul crushing. While I am so glad we live in a place that has benefits like this, I can not express the emotions I felt as I filled out the forms. I finally have to admit to myself how hard this battle has been. I can not deny the fear that comes with each seizure and every visit to the hospital.

Epilepsy is supposed to be a liveable illness. When Isaac was diagnosed we were told how most people with epilepsy go on to lead full, healthy lives. We were told it would take a couple of medication trials but we would probably find the correct combination after one or two tries. We were told that our son even had a good chance of outgrowing this. And all of that was things the doctors told us.

Other people told us that he looked good, so he was ok. He has no developmental delays so we are lucky. Maybe it is just an allergy to the dog. Perhaps he had contracted lyme disease from a tick.

As time has gone on and we have seen one medication after the other fail, we have started to lose hope. In the very worst moments; those moments when he has a seizure that lasts for so long he needs rescue medication; those moments in the hospital when we found he had liver damage; the moments where his medication caused a side effect so bad that his airway was in danger and he ended up with ulcers in his mouth; the moment he ended up sedated because he was having so many seizures and we couldn't stop them; in those moments I feel lied too. I know that no one could have predicted that this would be our fight. No one could tell us that we would be that side of the statistic, we would be the family that had to fight medication resistance.

We still have options but those options mean that I need more time to dedicate to the caregiver role. I need hours to study the options, debate if the benefits outweigh the risks, and decide what to try next. I need to be home with my baby to track his seizures. We have trained anyone who spends time with Isaac how to spot his seizures. The big ones are easy but it takes a long time to truly know what are absence seizures and what are not, I am just starting to feel truly comfortable spotting the absences.

So here we go... the next stage, the next part of our journey. Hopefully me being home for a while and being able to truly focus on the kids will allow us to get some control over Isaac's epilepsy. We know it will help with Zoey meeting her speech milestones.

less soapy romance and more hot mess sitcom

*wistful sigh* Valentine’s Day. A day full of romance and love. A day made for lovers both old and new. A day to celebrate those relationships we hold  most dear. What better way to spend it then.... stuck in the Walmart parking lot with a cart full of groceries and two crying babies.

Yep I, like millions of other adults around the world spent Valentine’s Day doing normal things, just continuing on with adulting. My valentine’s Day was less soapy romance and more hot mess sitcom. The kids and I had a bunch of errands to run, so off we went this morning.

Things started out well enough, out to the car, all buckled in and made it out of the alleyway without getting stuck. Stopped at the hospital to refill a prescription for Isaac and drop off some paperwork at the neurology clinic. Alas the meltdowns began. First we had to deal with the trauma of not going to the gift shop, next a tantrum over not eating lunch in the cafeteria, another tantrum about not seeing Sparkles the clown. Still we made it in and out in one piece and we did it all within an hour so parking only cost $4.50.

Next was Walmart. We got a decent parking spot, found one of the carts that can hold both kids in the front and managed to get most of the groceries without any tantrums. Our only meltdown occurred at the checkout when the kids were tired and just wanted to go home.

I couldn’t believe it, the day was going well. The kids were behaving decently and the errand were nearly done. We headed out the door and... bam stuck in the mushy, snowy, icy, half melted mess of a parking lot. I pushed. I pulled. I wiggled. I jiggled. I couldn’t get the cart to budge. Cars were ripping around me, annoyed at the idiot who wouldn’t move her cart from the middle of the road. The kids were crying, the cart started tipping. I steadied the cart and started to cry, myself. I was panicking trying to figure out how to get the rest of the way to my car. Should I abandon the cart full of groceries and get the kids in the car? Should I try and get the car to the cart? Just as I was on the verge of full blown meltdown the kindest gentleman  pulled his truck over and rushed to help me. He pulled the cart as close to my car as he physically could and started loading groceries. I was rushing to get the kids in the car since the cart was so far from my car it was still at risk of getting hit. Of course this is when Isaac dropped both boots and socks on the cold wet ground. I got him in the car despite him wrenching himself around in my arms trying to reach his boots. A kind lady handed us his shoes and I shoved them in the car below his seat. He was full on melting down. Two more gentlemen came to assist us. They picked up Zoey and helped me get her in the car (this caused her to freak out and have meltdown over stranger danger). Before I knew it the car was loaded, the kids were buckled, and my knights in shining armour had all disappeared.

We made it home and I dug our the rum. Happy Valentine’s Day! Hope yours is a little more romantic.

All I can say is... I have never been more grateful to have to clean up pee from the floor.

Medical mama... that is me. I have joined this new community that no one wants to be a part of. It is full of anxiety, loneliness, fear, grief, anger, and guilt. We have our moments though; those moments when your child meets a milestone you never thought they would make it too, when they over come the odds, when they surpass the doctor's expectations. Those moments are great but the other moments... there are not words for the feelings that those other moments hold. Honestly it is hard to come to terms with all my feelings. I simply don't feel that I belong anywhere right now. 

We are a medical family but we are lucky. Even though we have been through a lot at the end of the day we are still holding our son. We get to bring him home, sometimes it takes a while but he gets to come home. So many of the families we have met are not so fortunate. So many parents have had to say goodbye to their babies too soon. 

We are lucky. Our son, though he has a life-altering condition, is not developmentally delayed. He may not be ready for school (in fact we have been discussing home-schooling or at least exploring the possibility of an aide if he attends school) but he is exactly where he should be developmentally. We do not have to see PT, OT, no early intervention clinic, no speech therapy. He knows his letters, his numbers, his colours, etc. He is learning to dress himself. He is starting to recognize letter sounds and combinations. He is potty trained. So many of the families we have met do not have this. So many kids have to go through these additional therapies on top of dealing with all the appointments for their illness.

My son has an invisible illness. Unless he is actively seizing you wouldn't know anything was wrong. Even when he does have seizures they are like the ones you see on tv so many people do not recognize it as a seizure. When he had one in the library a few weeks ago I heard a child ask his mom, "Mommy what is wrong with that boy." The mother's response, "Oh he is just having a tantrum." It was in that moment that I realized what other people see.

When Isaac is cranky and not listening, people simply see a defiant toddler. They see me give in to his tantrums, he doesn't get a spank or a time out. I give him ipad time, read him books, or give him a new craft to do. It isn't that he is being naughty (although sometimes that is the case) it is often that he has been having multiple absence type seizures. His little brain is overloaded, his body is exhausted, and he feels like crap. He needs some quiet, some calm, some rest. When he falls from a seizure and has his eyes, tongue, and head deviate to the right; it might look like he is just having a fit. Especially when I get down and roll him on his side, often talking to him and begging him to stop. When we attended a church event this past weekend, people from our congregation saw Isaac. The most common comment was "He looks ok." Yes he does, his seizures were so out of control this week he ended up in the hospital sedated just a few days before, he doesn't look any different.

This makes it hard, it makes me feel like we are imposters every where we go. I feel like the other medical families see us as "normal." When we present at clinic, or in emerg, or even up on the units they see a healthy, happy kid. It makes me feel like I have no right to be part of their world. I feel like I do not belong with them. I feel like I can not share my woes with them, or cry on their shoulders. So many of them have things so much harder. Yet when we show up at a playgroup, or library time, in swim lessons, or an indoor play area; we are the weird family. Other parents do not want their kids to play with my child who tantrums and misbehaves. They do not want to talk to me, I am the crazy helicopter mom.

So this journey is lonely. I have some really amazing friends and family that have stood by us and I do not mean to discount them. I am lonely. This morning something as simple as Isaac didn't pee, he hadn't peed since yesterday before nap time, it had me spinning in a cloud of anxiety and fear. I know his creatinine had been elevated from his last lab test. I know his kidneys have been working harder since his liver was damaged and any medications he is on are metabolized through his kidneys instead. I also know he had a rough week and maybe just hasn't been eating or drinking enough. So on the one hand I literally thought his kidneys must not functioning properly. On the other I was trying to be logical and talk myself down. I didn't know where to turn. I wanted to run him back to emerg, I wanted to demand tests to check his kidney function. I wanted to cry and curl up back in bed and pretend nothing was wrong. I wanted to check with my group of other medical mamas and see what they would do.

All I can say is... I have never been more grateful to have to clean up pee from the floor.

So keep going mama, you've got this!

Almost every day my morning starts the same. Shane's alarm goes off and I wake up, he hits snooze and goes back to sleep five million times. I usually fight my hardest to go back to sleep for the first two or three times but I eventually surrender and pick up my phone. I start with the news. I hate reading the news but my parents always told me that you should at least scan the headlines so you could be up on current events, otherwise what would you talk about. So that is what I do, I open the news and suffer through the horrifying headlines, sometimes I can't help but read an article. It's never good, it always makes me sad and scared, often I even cry at the thought of my babies having to grow up in a world filled with so much hate. Now that I am good and sad, I open social media. This usually gives me a boost. Most mornings my facebook and instagram feeds are full of stories about love and pictures of kids, animals, and beautiful moments in the lives of people all over the world.

This morning I was disappointed. This morning my heart broke a little. One of the "friends" (someone I don't actually know but have become connected with through social media) who has had some struggles with motherhood and has just welcomed a new baby was attacked by another mother. The verbal assault was brutal the woman told my friend that her kids are grown and she survived motherhood, to stop whining, suck it up, and parent. She continued this ridiculousness by telling my friend that she chose to be a mother, so she did not have a right to say it was hard. Ok um what?! This is absurd!

Yes parenthood is a choice. Those of us that have kids are blessed, lucky, and fortunate. I know there are many people out there that wish so badly to be parents, they would give anything to have child and for whatever reason they can not see dream fulfilled. I've been on that side, I went through fertility treatments. My fertility struggle was short compared to others and not nearly as difficult, none the less it took an emotional toll. Of course there were moments during that struggle that I would swear I would never, ever complain about my kids if I were so lucky to have them. That was pain and sorrow talking, that was my desperate heart begging the universe for a child, that was my broken soul grasping at straws of strained faith.

Motherhood, fatherhood, parenthood is a choice; but it's hard as hell. We all struggle differently through it and we all find different ways to cope with it but it is hard. Anyone who says parenthood is easy is lying. Maybe this woman who attacked my friend has forgotten those endless days of raising tiny humans, maybe she really can not recall the days that it was literally all she could do to keep those crazy, tiny, toddlers alive. Has she truly forgotten the times she didn't have a moment to herself, the days she could't put the baby down, the times the toddler wouldn't let go of her leg? Is she really so vain as to think she never unnecessarily raised her voice? She really believes that she never, not once, had a moment of this is really hard; how am I going to make it; am I screwing them up? She actually expects us to believe that she didn't go through those moments where she just prayed for bedtime to come a little quicker, that she really never complained to anyone about her kids?

I do not care where you come from, who you are, if you are in a relationship or single, if you are rich; poor; or somewhere in between, or how old you are - parenting is hard. Raising this helpless, little human that can't even hold up it's own head is so hard. Teaching someone that literally can't use a toilet how to become a decent person is a challenge. Parenting is the hardest thing you will ever do.

When I am struggling the most, having those moments where I really think I am messing everything up, my husband always tells me that I am a good mother. He says, "Babe you know how you know that you are a good mom? It's because you actually worry about it, your biggest fear is not being a good enough mom." So keep going mama, you've got this! You are awesome and if you need to vent on facebook to get through the day DO IT! Hater's gonna hate but I will love and support you.

Ok time to step down from my soap box.

Yep so, that happened.

So it's been another week of snow, ice, and cold. Typical Alberta winter and it's only going to get colder this week. The kids have been stuck inside except for the few reprieves when the dog desperately needed a walk or side walks needed shovelled. This means my adorable little toddlers turn into raging beasts who destroy everything and everyone that comes near them. By the time Saturday came the house was a disaster. Every toy out of place, every cupboard emptied, every drawer rifled through, and every closet open. I had been desperately trying to entertain the two wildebeests, we played hide and seek, dressed up for all kinds of adventures, dug through the depths of the craft cupboard, and built every puzzle, we even spent hours erecting gigantic lego villages.

Anyway, once Saturday arrived I found myself riddled with anxiety. I could not deal with the state of the house for another minute and cleaning with the beasts around was pointless (those with small children understand this struggle). I called in backup and arranged for the kids to be babysat that afternoon (perhaps all the way until much after their bedtimes). Until then we decided to get out of the house. We took a trip to the mall in search of new bedding. The kids were thrilled to be out and able to run around in the long, empty corridors of the old mall.

Things were going so well we even stopped at the little indoor play area. The beasts were released into their natural habitat of bright primary colours, foam play structures in odd shapes, and god knows what kind of germs. They played their hearts out for a good 45 minutes until Zoey fell off on of the play structures. She recovered after a quick cuddle and demanded to go back to playing. I was definitely alright with this decision and agreed without much convincing from her. Things continued well for the next 2 minutes until another mom piped up, "Um I think your baby is bleeding." Sure enough there was blood trickling down Zoey's chin, she was fine but we left. (Active bleeding around all those germs is definitely my line.) There was much whining from the kids so we decided to bribe them with a trip to the food court for burgers and fries.

We navigated the food court with minimal meltdowns and ordered A&W. I herded the tiny creatures towards a table at which point I discovered only green tables were acceptable to the larger beastie. Not a big problem as the mall was dead (seriously one of the older malls that is never busy). We found a table that had booth seating on one side, perfect since there were no high chairs. Shane brought the food over and we settled in to our greasy, foodcourt meal. Everyone was happy for a whole 10 seconds, that is when Zoey dropped her burger, patty down, on the floor. I picked it up, dusted it off, and didn't even hesitate to hand it back to her. (I know.... the germs! But she wanted it so badly and I wasn't paying for a whole new burger that she would only eat a few bites of.) It was at this precise moment that I caught the eyes of the elderly gentleman sitting at the table across from me, he had been smiling adoringly at the kids and his face immediately changed to a horrified grimace. I thought about trying to fix this, maybe take the burger back or at least rip of a piece that might of touched the floor, and then something happened. Mama's give a shit full on ran out. I made full eye contact with this guy and shrugged at him. Yep so, that happened.

Wacko in the Walmart parking lot

I have been putting off getting groceries all weekend and today was finally the day I couldn’t procrastinate any further. We were down to our last few diapers. So off to Walmart we went, just the beasties and me. We drove a little out of the way to get to the new Walmart, it’s less busy and feels cleaner. I found a great parking spot right in between the store enterance and cart corral. Luckily there was one of the carts with a baby seat right there. I wish they had the carts like Costco, the ones with two seats up in the front part but instead they have ones that have a little infant seat and a regular little seat beside it. Luckily Zoey is still small enough to fit in the infant seat (at almost two year old she is the size of most 1 year olds). Anyway we set up in the cart, I gave Isaac my phone and put on a video for both kids. Off we went.

The beginning went pretty well, produce aisle, bakery, deli area all conquered with no tantrums or tears from anyone. Cereal aisle a few whimpers started. Snack section and the meltdown started. We weren’t even halfway through! I attempted to appease the whining monsters with snacks and toys from the diaper bag but they would not accept my offerings. Finally I gave into their cries and pleas for the new minion fruit snacks in the cart. I ripped open the box and filed out a couple packages. The gremlins happily munched away and I finished the entire shopping trip! It is possible they are the entire box worth of snacks, but hey they grocery trip was mostly peaceful.

Feeling absolutely triumphant, I rode my high all the way out to the car. I loaded up the kids and grabbed a couple bags out of the cart... the back of the car wouldn’t open! The hatch was stuck. I put the bags back in the cart and tried again to open the hatch... nothing. I tried locking and unlocking the car... nothing. I pulled the hatch with both arms... nothing. I braced my legs against the bumper and reefed with all my might... nothing. I kicked the door... nothing. I gave up after a good twenty minutes of this nonsense. I loaded most of the groceries into the front passenger seat, a few on the floor under the kids car seats, and Isaac held a bag on his lap.

We made it! That is what counts!

Here comes the sun

It’s been a long, harsh, cold winter and the kids have cabin fever from being inside so much. Between hospitalization, doctor’s appointments, work schedules, family/social commitments, and plain old cold weather we haven’t been able to be outside nearly as much as we usually are. Both of my kids love being outside and are constantly trying to convince me that -40 isn’t too cold if we just put on our mitts and hats. I have never been an outdoorsy person and would be perfectly happy to never actually go outside. I love looking through the window at the fresh layer of snow while the fireplace roars beside me, or watching the rainstorm while I sit under a blanket reading a book, my absolute favourite is napping in that perfect patch of afternoon sunshine (yes I might be a cat). Anyway this is completely unacceptable to the two feral children that have taken up residence in my house and they demand outdoorsy type activities as much as physically possible, so in attempt to be a good motherly figure I have adapted and found ways to enjoy the outdoors. We spent some time making snowmen this winter, in the summer we blow up the backyard pool and have beach parties, we love to collect rock and leaves for crafts to be done later, and splashing in muddy puddles is a favourite! We spend plenty of time around the neighbourhood going for walks and finding new playgrounds to explore but we also enjoy exploring a little further (confederation park and the zoo are two places we visit frequently).

So this week in an attempt to get some of this itch for the outdoors scratched I took the beasts to the zoo with the help of my cousin. We made it just in time for the penguin walk (completely by accident, it would never have happened if we planned it). This was followed by Isaac insisting on seeing the tigers; halfway there he changed his mind and wanted the hippos. We changed direction in attempt to avoid a toddler meltdown but it caused the tiny creature to have baby rage and so a meltdown was inevitable. We eventually got to the hippos and in the way saw the meetkats, these are Zoey’s favourite animal at the zoo so we spent a good half hour running lengths across the exhibit finding every single meerkat. Eventually the giraffes were found and the baby tortoises were admired. Finally the boy got his wish and we made it down to the hippos, he stared lovingly at them through the tiny window for an eternity. The hippos didn’t even move or blink the entire time but he was hypnotized by their exotic beauty and stayed there, completely transfixed for what felt relief a lifetime. Finally after a battle of wills we were allowed to move on to another animal. There were meltdowns from both tiny demons that were strapped into the wagon I pulled behind me. They settled with promises to go see the monkeys, of course we had to stop at the fish first. After a final meltdown in the monkey house we decided to call it a day and leave the zoo. We stopped for a nutritious lunch of cheeseburgers and fries before heading home and attempting nap time.

It was a pretty great day! We were all exhausted but getting outside was worth the battles we had to fight.

#momlife

Daddy is coming home late again. He works endless hours in the pursuit of having enough to leave his kids wanting for nothing, and while it is admirable of him it sometimes leads to us all being more exhausted then we should be. On nights when dad works late it usually means take out for dinner but since that’s been happening more often than not the last few weeks it means mom has to give cooking a try... mr. noodles anyone? No... hmmm maybe cereal for dinner then? Ah ha I know! Mom makes killer pancakes, perfect! Sticky, sweet, syrup covered pancakes it is. Maybe even some fruit and a side of eggs for a little protein!

I actually could not be more pleased with myself for coming up with this somewhat balanced meal! Now I just have to get through the rest of the afternoon with these two crazy beasts that I somehow gave birth too. We spent the morning baking together, colouring pictures, and I even gave in to the constant begging to have nails painted. We had a little iPad time and some form of lunch. Finally the wonderful, blissful, relief of nap time came. Zoey naps like a champ, 2-3 hours every day! Isaac is starting to resist naps, I guess he is at the right age for it. He still goes to his room for about an hour of quiet time and more often then not he does fall asleep. As always nap time came and went so fast I felt like I barely got anything done. Somehow I managed to fold the laundry, load the dishes in the washer, and sit down with a cup of tea for five whole minutes.

Maybe a movie will fill the afternoon void. Not Moana though... I can not watch it again! Ugh, it’s stuck in my head now. Crap. Now I need to watch it so I can at least remember the words to the songs. #momlife

Mary friggen Poppins!

Had a whole day to myself today and decided to treat myself... read I got a pelvic ultrasound done that I was supposed to have done three weeks ago. Anyway the day started as usual with Shane putting his alarm on snooze 300 times, finally his majesty rolled out of bed to spend his usual hour in the bathroom completing his morning preening. As this was going on I actually managed to fall back into a blissful sleep. Not even 5 minutes later there appeared a tiny human in my room. He was sobbing about how his bed was all wet, devastated that he had wet the bed. It was at this very moment that my fairy godmother (the nanny) appeared. She bounded up the stairs, changed Isaac’s sheets, collected the baby, got a load of laundry on, and made breakfast. The entire time I managed to comfort the crying toddler, convince him to change his wet pyjamas for something dry, and dress myself. I swear our nanny is friggen Mary Poppins! I adore her! I hope and pray that she stays forever.

So after the kids were settled and breakfast was done, I folded a load of laundry, vacuumed the stairs, and left the house. I spent a glorious 4 hours shopping, getting an incredibly invasive ultrasound, and eating lunch at a burger joint.

The ultrasound resulted in some very uncomfortable cramping and upon my return home the nanny made me a pot of tea, set up my heating pad in the recliner, and pulled a blanket fresh from the dryer for me. I settled into absolute heaven. It was because of all of this that I managed to tolerate a few hours of Pokémon and hungry hippos with the kids.

Happiest, easiest, most normal day in a really long time!

brain melting mush

The kids have bad colds and are pretty grumpy so it’s meant a lot of movies and tv. I try to be a good, creative mama and limit the screen time a bit; at the very list I attempt to encourage some educational shows. After a million episodes of superwhy, Daniel Tiger, and Baby Bum, I gave into the pathetic pleas for paw patrol. This torture was short lived and we quickly turned to the nonsense that is Rabbid Invasion. After a few episodes of the sheer stupidity I decided the adult cartoons of Family Guy and Bob’s Burgers couldn’t be that much worse. Now we’ve watched a few episodes and while Isaac prefers “burgers show”, Zoey is more of a “puppy; baby” fan. I think I’ve accidentally taught them how to plot my demise.

For those of you that don’t watch such nonsense and haven’t seen a kid’s television program in years I promise I am not having a stroke; these are all real things.

#momlife #blessed #toddlerlife #badmoms #momfail #momwin #sickday
#brainmelting #kidsshows #familyguy #bobsburgers #danieltiger #pawpatrol #somebodysaveme