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.