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.