Summer Nights

My last post was all about feeling exhausted and fearing a flare. I can happily say that about a week later and I’m feeling pretty good, but a bit delicate. As long as I pace myself and rest often I can function, or at least have some fun. I am just taking it day by day. I am trying to do something fun almost every day, for myself and my family. Yesterday was one of those special days.

Yesterday was a normal Monday with temps on the 90’s (F) so I spent most of the day inside enjoying the cool air conditioner. My two littles had an eye doctor appointment in the morning, then we came home to just chill. I made a nice dinner, which is rare these days. I made tacos and burritos and most of the kids ate them, so WIN for me! After dinner, instead of our usual dessert of whatever we have in the house then waiting around till bedtime, I got the nerve to announce that we were all going to our little village on the water to spend the rest of the evening. There is the harbor park in our little village with gorgeous scenery and ambiance. There are docks with beautiful boats and yachts, a kids’ playground, outdoor cafes, live music, restaurants and bars that open to the sidewalk, a bakery, and ice cream shops. The best part is its only a 3 minute drive from my home. What a gem to have found!

With the sea breeze and the sun going down, the temperature cooled down enough for the air to feel pleasant. It was such an amazing evening! The smells of the restaurants with the salt water was wonderful. There were lots of people out with their kids and dogs. I recently learned that the village is very dog friendly with outdoor seating and fresh water spouts for the dogs. I forgot to mention, we took our 4 months old puppy Leo with us. He is finally fully vaccinated so we can finally take him out in public. It was our first full family outing with him which made it that much more special. He was so well behaved and everyone loved him.

When we first got there, we let the kids enjoy the playground while Ed and I walked Leo around the park to enjoy the sights, sounds, and smells. He was so excited. He said hello to a few other dogs and got lots of pets from the locals. After a bit, I rounded up the kids and went for a walk together in search of dessert. We ended up finding an old fashioned ice cream store and we each made our selection. After we ate our dessert, we walked back towards the park. We let the kids play another 10 minutes then had to leave because the sun had gone down and it was getting dark. The sunset was beautiful by the way. We got home and put the kids to bed before Ed and I settled in for the night. I think we spent almost 2 hours out.

This may seem like a simple evening, but it was very special to me. This is the kind of stuff I did as a kid. An evening like this is exactly what I dreamed of for my family. We’ve never done stuff like this because the kids were very young and I was very sick. A bad combination. I’ve always been too sick and weak to have an outing like this. I’ve always been too afraid to try. I have really been working on pushing myself more and it paid off. I even walked a lot! This is a huge deal for me because I usually can’t walk for more than a few minutes. I require a disability scooter when I go to the grocery store. I had a fairly active day and still walked for almost 2 hours. Such FREEDOM!! I’m so proud of myself.

Today was another satisfying evening with the family. We spent the afternoon swimming in our pool, then went out to dinner. My kids have been asking to go to a hibachi steakhouse, so we made it happen. They had a great time! Afterwards I took everyone to our favorite Italian ice shop. We sat outside and enjoyed our ices and saw some friends doing the same thing. After ices, we went to the kids’ favorite park and hung out there till 8pm. It was so nice to have such freedom to just keep going. I’m exhausted now at home but it was so worth it!! I had so much fun! I can’t wait for the next time.

We made a whole list of things we want to do this summer. Things like going to the zoo, aquarium, fishing, bowling, beach, etc. I realize we may not get it all done, but it is a fun goal. I want this to be a summer we all remember. I want my kids to feel what I felt when I was a kid. When I was little, we spent the whole summer outside, mostly at night. We were either at the beach, on the boardwalk, at the park, or sitting on the stoop outside our apartment or friends place. Those were some of my greatest childhood memories. We’d shoot off small fireworks, play with water balloons, ride our bikes and skates, and just be kids and have a good time while our moms sat and chatted. That’s what summer is all about!

I am planning on most of the summer being like this, as long as my body cooperates. As I said before, I’m just taking it day by day and seeing what each day brings. I have to remember that on my bad days, we can still have fun by just having a lazy day in. Maybe we can watch a movie. I’m determined to live again. I let this illness take away so many precious years of my life. I refuse to give it any more.

Published by Meredith Gallie

My name is Meredith. I’m a mother of 4 boys living in NY on Long Island. I suffer from a chronic illness called Sjogren’s Syndrome. It is a debilitating autoimmune disease which has wreaked havoc on my body, causing me to become disabled and mostly housebound. Each day for me is about survival and caring for my children. My older boys are twins, one of which has autism. These are challenges that I must try to overcome each day, but I am thankful for my family. I’m thankful to have a loving husband who is able to help and provide a comfortable life for us. We are thankful for his hard work and dedication. I’m not a writer by any means, but I wanted to make this blog as an outlet for all the noise in my head, as well as something to focus on to keep my brain from melting into a pile of mush. I also hope my thoughts and experiences will help others out there with similar struggles. Some of my posts will be like a public diary, some will be advice and inspiration. Some posts will be dark and sad, some will be uplifting and inspiring. I’m just going to write according to whatever mood I’m feeling at the time. It’s a bumpy ride, but hopefully you find it helpful or entertaining. Enjoy!

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