As I said in a previous blog posting, family as always been of upmost importance to me. The say of being the middle child is the forgotten child. I highly disagree with this statement. I felt I always had the best of both worlds. Now of course we had our sibling spats at times, but I am fortunate to have close ones. You also have a very different relationship I feel with a brother/sister plus older vs. a sister/sister and younger.
I have an older brother who always looks out for me. Back when we were kids I idolized his passion for his soccer, track and school. I of course never told him that, but when he told me I did something good, I felt on top of the world. When he was in college and I just began high school, and he wrote me letters about what to watch out for in boys:) YES, letters back then, didn't have cellphones to text back and forth. I also got to go visit him at college, but of course he made sure all his friends knew how old I was:) That is just a glimpse. He is a wonderful spouse, dad and brother now.
I also have a younger sister who I tried to be the best big sister, like Johnny did for me when we were young. I like to think I still do for her when we have a phone chats/texts now since she is busy with her kids and when she is on the phone they start to act up wanting her attention of course. When we were kids I loved the fact that we got to dance together on stage, I especially remember doing duets on stage and seeing her bright smile made me smile. When she also played volleyball and cheerleading as I did in HS, it made me very proud of her. Then just as when I visited Johnny in college, Pink came to visit me and I also made sure the frat guys knew she was my little sis and stay away:) Again, brief snapshot but she is also a great spouse, mom and sister.
Both my brother and sister were much better at school than I was, which at times I was jealous of. We now know that I possibly had absence seizures, and it wasn't just syncope spells or not studying enough.
When I was first diagnosed, I never said it but I was afraid it would effect my relationship with my siblings and also possibly ruin my boys relationship with their cousins. Afterall we already lived far away from each other; so it was difficult to visit but come Christmas I LOVED the chaos of all of the kids playing and getting to see them. I always though was afraid I would have a seizure and scare everyone off, causing my family to be left out on fun family trips.
My Brother Johnny's(John) Point Of View
As Marissa’s older brother, I’ve always been protective of her and want the best for her. It has been difficult at times to see how much epilepsy affects her day to day life as well as the side effects of the medications she uses to control it. I wish I could scare off epilepsy once and for all like I did her high school boyfriends.
Through the years I have admired her strength in dealing with all that epilepsy has thrown at her. The way Brent, Bryce, and Broc rally around and support her is an incredible example of keeping family first. My wife, Diana, and I often talk with our boys about the perseverance of Marissa and her family. Life may not always go the way you want it to, but you can choose to be there for each other regardless.
I wish there was more I could do; a way to get her healthy and keep her that way. Feeling powerless is not a good feeling so I continue to read and learn as much as possible about current and upcoming treatment options. This keeps me hopeful for the future. There may not be a cure today, but who knows what tomorrow may bring.
Until a cure materializes, I will continue to support Marissa in any way I am able and cheer on Broc and Bryce as they move towards their future goals with tenacity. I feel blessed to have a sister as remarkable as Marissa, even though I may not say it very often, or at all if I’m being honest, I am a proud brother. I am grateful for the family we have that will continue to love and support Marissa through whatever comes next. Hopefully this will include lots more healthy and seizure-free days ahead.
My Sisters Pink's(Candice) Point Of View
I can still remember the day we received my sister’s diagnosis. I think Mom and I actually felt a bit of joy. We finally had answers. We felt empowered that we finally knew what was making Marissa feel so awful.
I am speaking for both of us, but I do think my mom and I both felt that she could only improve from that point on. And how could she not?! We knew Mayo Clinic was on the case and had found the problem! We could see that light at the end of the tunnel. We were full of hope and closure.
As the years passed, it became apparent that this journey would be an uphill battle. Personally, it is sometimes hard to share day-to-day stressors with someone who is constantly battling a chronic condition. You feel guilty for sharing your tiny problems, and then guilty for deciding not to.
There have been times when I have been afraid. I was afraid when my sister had the RNS implant and then the battery change. I was also afraid when she wanted to stand up and hold her baby nieces. These are two very different, but real responses to my sister’s condition.
My children have learned that not all disabilities can be visualized. I think this helps them to better understand their peers who struggle with behavioral or mental health issues. It certainly has been a topic we have discussed.
Now, fast forward 10, and then 15 years later from that moment of joy shared at Mayo, and we are no longer feeling the joy of the diagnosis. However, what we do see is the strength and perseverance of a woman who will keep fighting and living despite many obstacles.
Thank You Johnny And Pink For Sharing Your Views
To everyone out there, I never knew much of what they felt (until they wrote these) and what they do now as well for their families. It opens my eyes even more to help others out there.
As I have said before epilepsy effects much more then the daily pain I might feel. It efects beyond just the four of us as well. Make sure to go back and read my parent's point of view, as well as other posts to understand MyGlitch better.
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