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.