Entry Twenty Six- Two!!

I can’t believe that Oscar is now two! To some, a second birthday may not be a big deal, but to me it means so much. I have learned a lot over the last 2 years. I have learned a lot about things that I wish I didn’t have to know. When Oscar was 8 weeks he was diagnosed with polymicrogyria (he was 4 months old when we learned his genetic diagnosis) and our world shifted.

It has now been almost 2 years from when I asked Oscar’s neurologist, “what can we expect?” the response I got was, “we don’t know.” He told us that a lot of children with Oscar’s diagnosis really struggled, some having multiple seizures a day even with medication. We learned a little bit about the keto diet understanding that this may be in Oscar’s future should his medications fail to work. We received a lot of education at the hospital before we were discharged home. We were educated about Oscar’s daily and rescue seizure medications and when to administer them, we learned what can trigger a seizure, we learned seizure safety including never locking a bathroom door. I wanted to hear “If you are diligent, he will be fine”. I didn’t get that.

We were naturally very concerned about Oscar’s situation and were searching for reassurance that things would be okay. We were told that we would have a good idea of how Oscar will be long term when he turns two. Two!!! But two is such a long ways away.

I have been waiting for Oscar to turn two since he was 8 weeks old. I have wished his infancy away so that two years would pass and I would hopefully gain some reassurance that things would be okay. Two years is a long time to wait. But we are finally here, I can’t believe it. Maybe now you can appreciate why this isn’t just any birthday.

I have learned a lot about epilepsy (and still I feel like I know nothing). Seizures are defined as an electrical disturbance in the brain1 and are very unpredictable. Myelin is an insulating layer that forms around nerves2 and allows nerve impulses to transmit more efficiently. By 2 years old a child’s brain has finished myelinating and once the myelination process is complete, my understanding is that you have a better idea of the child’s long term seizure control.

So here we are. Oscar is now two and hasn’t had a seizure in almost 18months. My husband and I have talked A LOT about Oscar’s medical situation and I can remember my husband saying, “So when Oscar turns two you are all of a sudden going to relax?”…No, now that I am here, I definitely don’t feel that way. Watching your child seize is a traumatic experience. Although I know that Oscar is on a really good path right now, I am also aware that seizures are unpredictable and just because they are controlled today, no one can guarantee me that they will be successfully controlled tomorrow.

I have learned the importance of experience. When we first came home from The Hospital of Sick Children I was TERRIFIED to leave the house with him, TERRIFIED to go to the grocery store (and it is a 5minute drive from my home). I didn’t know what I would do if he had a seizure in the car, or at the store… I was terrified to be alone with him.

Slowly, my confidence in my ability to handle a situation has improved. And that hasn’t just happened because of Oscar’s second birthday, it is because I was determined to get my life back. I have slowly pushed my boundaries and have been lucky enough that when I pushed the boundaries of my comfort zone things have been “okay”. I know that this isn’t the case for everyone in a similar circumstance. Experience has come with the encouragement of my husband, my family, my friends, and my social worker. I did need medication for a period of time and that is okay. I was able to wean off of it, and still be okay. But if I had still needed it or if I need it again in the future that is okay too.

Oscar’s long anticipated second birthday is here. I am so proud of who he has become. Today, he has control over his seizures. He is delayed in all categories of development, but he is slowly making gains and that is all we can ask for. I am still learning how to be present, and to celebrate each day. I am successful doing this most days now… somedays I do still struggle.

These last two years have truly changed my life. Most importantly, I have my precious son. Although I never imagined he would have all of the challenges that he has, he has been a gift to our family. We are fortunate to have an incredible support system both near and far. These last two years have made me really be aware of and appreciate the people we have in our lives. We are also fortunate that my son has such an incredible care team and access to one of the best children’s hospitals in the world, The Hospital for Sick Children in Toronto. We are feeling very grateful today. Happy Birthday Oscar!

To those of you who are waiting… I hope your day comes soon and brings you peace

(One of his tricks is making a “two” with his fingers)

Photo Taken: October 2020

References

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