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Asher's One Year Epilepsy-aversary

March 25, 2019

 

Last week marked another milestone for Asher - one year since he was diagnosed with epilepsy. None of Asher's diagnoses have been easy to handle, but epilepsy has definitely been the one that has taken the greatest toll, on both him and I.

 

I remember being so relieved the day they told us it was seizures. I had fought for so long for someone to listen to me because I knew something was wrong and so when we finally had a name and a treatment plan, I thought "it can only go up from here." Little did my naive heart know at that time, epilepsy doesn't follow a treatment plan. Epilepsy does whatever the f*ck it wants. 

 

I am a part of a variety of support groups on social media for parents of special needs kiddos. There's pretty much one for each of Asher's conditions: G-tube parents, cortical visual impairment parents, hydrocephaly parents, ACC parents - you name it, Facebook has it for you. The epilepsy support page is by far the most active because as parents we are so desperate to find someone who has walked a similar road and made it out okay. Unfortunately, this disease is so nuanced and so temperamental that each path is just a little different, making is frustrating and isolating. 

 

These support groups have been a Godsend to me, a ray of hope in a world that often brings so much darkness. Sometimes, though, they get heavy. They are a safe place for parents who just get it, so there is often a lot of venting and crying. Recently I passed a post of a mom talking about everything that epilepsy had taken from her family. There were nearly 400 comments on the post because we all felt those words, we got them. It's easy to focus on what epilepsy has taken away: our peace of mind, our security, any hope at a "normal" life, Asher's smile, his comfort, a normal sleep schedule, the ability to look towards the future because we have no idea what that holds for us, a schedule that doesn't revolve around medication times, a quick trip to anywhere without packing a bag of rescue meds and other emergency needs, the ability to say "I've never had ridden in an ambulance before." Epilepsy has taken all of this and more from us. It's wreaked havoc on my family in ways that I couldn't possibly put into words. It's made the last year feel like an eternity and a moment all at the same time, but it has also given us so much. 

 

 

Epilepsy has given us so much snuggle time. EEGs and hospital stays are long and awful most times, but they mean endless time to just cuddle and appreciate that we have a killer Children's hospital in our backyard. 

 

Epilepsy has given me a backbone that I never had before. I had to learn quickly that if you are not persistent and pushy, nothing is going to get done. Being an advocate for Asher has been a struggle for this confrontation hating momma, but its taught me a lot about being strong even when I don't want to be. 

 

Epilepsy has shown us a support system that never fails to bring me to tears when I try to describe what they have done for us. There have been dozens of hospital care packages, countless text messages and phone calls of support and love, endless prayers being said for my baby all over the world. There have been days where I'm honestly just at a loss for how we will keep doing this and they are always there, with a hug and a simple "you can do this." I always knew my family was incredible, but epilepsy showed me that in the most tangible way.

 

Epilepsy has brought Asher and I our worst days, but it has also brought us our best and it has taught us how to appreciate those. We now know that there is no treatment plan and that things can turn at any given moment. We know that periods of seizure relief are fleeting, so when they come we hold onto them tight. We also know that the bad days will pass and just when we are losing hope, something changes. 

 

Epilepsy is tough, but Asher is tougher. We are so thankful to have made it through year one and to go into year two with a much better understanding and appreciation of what epilepsy has given to us. 

 

 This is really how he feels about this whole thing. 

 

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