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.