Everything this year reminds me something about my brain surgeries. This is my new reality.
For instance, I’m currently on a plane taking off from TF Green airport and I am feeling excited for my trip. Yet deep down, I am panicked as it reminds me of taking off from Boston last year to go to California for my brain surgeries. I’m looking out at a beautiful sunny day (just like last May) as the plane lifts off and am breathing deeply to stay calm. This trip has no similarities to that terrifying one (except leaving the kids) but I can’t help but to reflect.
I was so petrified to go to California. I stayed positive but didn’t know if I was going to make it. I didn’t know if I would keep my speech or lose functionality of some part of my body. I would miss my kids terribly and worry about them the whole time. I’m tearing up and craving a Xanex even as I type this. Oh it was heart breaking.
Today, though, it’s a good trip. I am leaving to go to Washington, DC- my old home where I lived for fourteen years. I’m going early to see one of my best friends and her new baby. I’m catching up with my maid of honor and having a small reunion gathering of American University friends.
Most notably, I’m taking my scary new diagnosis of Moyamoya disease and double brain surgery survival story to a new place. I’m joining the other rare disease advocates to attend Rare Disease Week on Capitol Hill. I’ve been a heart disease and stroke advocate for years but this rare community is brand new to me.
I’m nervous to break out of my comfort zone and meet all new people…but excited to hopefully meet some patient peers with whom to compare notes and to make a difference. That always makes me feel good!
I’m also honored and thrilled to be able to bring Moyamoya awareness to Capitol Hill. The Moyamoya community is passionate, supportive and fierce- so being coincidentally being a representative for them is such an honor. I hope I do them justice!
It’s all a mental game for me. I am not off to surgery. I am heading to have fun and do something that is going to make me feel good- feel like I am contributing to a better world for patients and their families. I am leaving my children with my husband and parents which is fun for them. I am turning something challenging into something meaningful. ❤️
As a stay-at-home Mom to two school aged kids, school vacation certainly has its pros and cons. I find my perspective forever changed after being away from the kids for almost a month last year. Now, I love time with my family! Not that I didn’t before…but it’s cherished even more once it’s been taken away. So, vacation arrived with an actual weekend off for my husband (who had been traveling for over two weeks!) and a relatively open schedule. Here’s the best parts:
- No early commitments! As a busy family, most mornings include me
yelling at (ah, encouraging) the kids to do the routine! I never realized how difficult it is for two kids to get dressed, do their hair and teeth. After six weeks of 8:30 activities on Saturday and Sunday, I was tired of the morning scramble to get out the door on time. It was golden to have slow, stress free mornings throughout vacation.
- Wide open days! I admit, as a planner, days without a plan often give me stress…what in the world will I do with a whole day free? I have reshaped these days in my mind as opportunities. I’m actually able to ask the kids what they would like to do and do it! Our adventure this past week was to try skiing. I know they were nervous but they wanted to try so I brought them to their first one hour lesson. Ski weekends, here we come! 😉
3. Quiet times with the kids…to do whatever they would like. We didn’t have to run to practice, hustle for homework, or squeeze in a shower. We played with playdoh, painted canvases, built lego ships, played Mario Chase as a family and watched movies while cuddling. Real life sometimes doesn’t allow for these precious moments.
4. Reconnecting with other friends. We have a wonderful community of close friends who make up our everyday life. They are the kids’ best friends and my village of friends who support me and allow for a fun life! However, our busy schedules often prevent us from seeing other friends- my college friends, high school friends and relatives that we often see just for holidays. It was fantastic to catch up with some of these people over the break. It was even better knowing that I did some reaching out- which I haven’t done that much since my surgeries. Things are coming along.
5. Sibling bonding. When my kids have time together, they truly like each other and playing with each other. Vacation gives them this much needed bonding time. They hit the ski slopes together, negotiated watching movies together and had time just to be silly with each other. We often have the usual grind which doesn’t provide for time with each other so seeing them together just warms my heart.
I know vacation is over now but it was a nice break from reality. Now…where’s summer??
I will laugh at myself soon. I launched a blog without a plan. This is not what the professionals do. This is not even what I typically do.
Yep, I am Type A and like things organized and planned. However, I ignored all my conventional wisdom and just launched my blog page. I would never have done this a year ago.
Perhaps it’s because I was scared last year. Maybe it was because I used to think I had control (which I don’t!). It could be that I was trying to make everything perfect…now I am just doing it. There is freedom in this – and humor.
My husband asked me yesterday how often I would be posting. Not sure!
What is my theme? Unknown.
Have you drafted your first few posts? Nope.
But I have been dreaming of writing and sharing for years so I am just winging it. This would have panicked me in the past but now, as a 40-year-old, brain surgery survivor, I’m just writing when I feel like it. I predict a plan in a few months, but until then, I’ll just see what happens. This is bound to be an exhilarating yet terrifying journey!