Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Monday, April 19, 2021

Little things and building community

     It's 5:15 on a Monday morning and I'm drinking coffee in a quiet house. I'd rather be SLEEPING in a quiet house, but I'll take what I can get! Lauren woke up around 3am (2:55 to be exact) and I haven't been able to fall back asleep. Once she wakes up at night, she often wakes more than once so it's really hard to get my brain to turn off. Since Greg works midnights, I'm the only adult here so I'm it for nighttime supervision. Now that I'm only working 2 days a week, it's not the worst ever. I can catch a nap while the kids are at school if I need to, but usually I just power through. Of course, today I'm working a 10 hour shift so I'll be a zombie by the time I get home this evening.

    We had a fun weekend! Friday while the kids were at school I went on a solo 2.6 mile hike at and it was beautiful. I saw deer, swans, birds, chipmunks, squirrels, and tons of plants. It's great to see things getting green again! I've discovered a love for hiking and I honestly think I love it so much because it's one thing I do that's just for me. Sometimes I'll bring Lauren (to a paved trail), or Ryan, or my mom, or Monte. I discovered my love of hiking just this past January, so even chilly days are a lot warmer than when I started. When I first started I was TERRIFIED of getting lost, even at a local trail. But honestly I'm super proud of myself and how well I've learned a sense of direction. At the local park trails, parking is south of the woods, so I will sometimes use the compass app on my phone if I've gotten turned around. But recently I did a longer hike at a local metropark and navigated the trail pretty well. If you know me, you know I am terrible with directions so I'm very excited.

    Saturday we went to a birthday party for my cousin's daughter. Because of COVID, it was the first time meeting her for a lot of us! It was outside at a park and everyone wore masks, it was great to see the whole family and feel safe while doing it. A lot of us are vaccinated, too. I got to hug my grandma. Luckily, my mom and dad are a great help with Lauren (Greg was sleeping) so I really did enjoy myself. The kids had so much fun. Ryan won a goldfish! The kids named him Nemo. Ryan and I snuck out to a local pet store and bought a 5 gallon tank with a filter as well as a various assortment of stuff to go with the tank. We spent a small fortune and it was totally worth it. So much fun! Growing up, we had a large freshwater tank and my sisters and I have great memories of "helping" our dad with it. Setting up Nemo's tank was hilarious on Saturday evening. Both kids were "helping", and yelling for Greg that I needed him to help. I actually didn't, and I figured it out all by myself! I did need his help with figuring out how to fill up the tank, I bought distilled water from the grocery store to fill the tank and it was so heavy, and it was drinking water so it was only coming out of a tiny little spout. I swear it would've taken a week if he hadn't gotten the cap off for me. Lauren was sad that Nemo was going to live in Ryan's room, which cracked me up on the inside. Can you imagine Lauren with unsupervised access to a fish tank for hours on end?! 



    Sunday Lauren and I went to church together, then I recruited the kids to help me pick up sticks (their job) and dog poop (my job) in the backyard. Once Greg woke up I snuck away for a hike. I got just under 2 miles in and it was amazing to see how green everything is getting! Then we went to our church small group. 

    It was a great weekend AND Lauren struggled behaviorally, which I think is just going to always be part of our journey. It's worse when she does a lot of physical activity and I think it's probably because her leg hurts. She did a ton of walking and playing (kid stuff!) at the party on Saturday. Yesterday at church she had to "take one break" (how she announces she's going to sit down, she'll just drop wherever she stands, LOL) after service, but we've been committed to not using the elevator and making her do the stairs (kids ministry is upstairs). 

    We've been working on mobility, weight, and activity and it's just going to come with some behavioral side effects. I sometimes have anxiety about what her behavior looks like in public places, but as she gets older I find I care a lot less about what our family looks like to other people. It helps that we've been able to build a community of people who meet us where we're at and love our kids for who they are. Our families are great, of course. Being up north is great, our campground friends are so kind. At church, everybody is happy to see Lauren. She is fully included with typical kids in kids ministry and she really loves going and seeing her friends! Our small group is comprised of really amazing people who accept Lauren where she's at on any particular day (adults and kids!). Sometimes that looks like high fives, hugs, and greetings. Sometimes it looks like poor eye contact and refusal to engage. Ryan often does not come to church with Lauren and me because he hates crowds. He comes with us to small group about 50% of the time. I certainly don't push it on weekends where we've done a lot of social stuff (like a big party on a Saturday like this week). I've learned that if we have a super busy and social weekend, Ryan tends to be "sick" on Monday mornings. Believe me, I WISH Ryan would want to go to youth group or attend church. But it's just not his personality and I've got to put my kids mental health at the top of the priority list. Our church community has shown such grace with both of our kids (same for the church we attended previously). I've never one time felt judged for Lauren's behavior or for Ryan's lack of attendance. Heck, Greg almost never comes to church because of his work schedule and I've never gotten anything other than a "Tell Greg we said hi!" or a friendly "So glad you could make it this morning!" to Lauren and me. That just honestly means the world to me. With a family that looks a little bit different, it feels great to not feel othered, left out, judged, or excluded. Yesterday was a particularly rough morning for Lauren and I. As we were walking into church, she veered in to the bathroom without warning and we were already running late. Instead of standing in line to check her in afterwards, a friend who was working the check-in desk had already printed our tags since she saw us head to the bathroom. It's the seemingly little things that make such a big difference.

    I struggle so much to admit that this life is hard because it feels like I'm complaining. I'm working so hard to use "and" instead of "but". This life is challenging but and so beautiful. I'm so grateful.

2 comments:

  1. Hi, I was wondering if you could share my special song about my daughter with DS. Thank you so much.

    https://youtu.be/vNA4X9d7yT8

    ReplyDelete