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.