Today I’m just feeling blessed. Nothing particularly spectacular or inspiring happened recently , but man those tiny little things that add up to a big fat heart full of happy.
Watching Atlas devour an apple like a big kid, I mean literally right down to the core. He enjoyed each and every bite, humming as he ate , as his beautiful big eyes lit up like the night sky.
Hearing Sage run to the door when she should be sleeping because we just got in from some last minute Christmas shopping. Her little tiny footsteps and her little squeaky voice exclaiming “mommy I missed you so much”.. and we were gone less than 3 hours. While we’re on the way home my stepdaughter Brooklynn FaceTimed me because she wanted to say goodnight to her little sister (or as she calls her “bip”) . When I got home I called her back and my girls got to say goodnight to each other. And even cuter daddy walks in the door takes both his babies and reads them a Curious George Merry Christmas.
All these little things add up to so much and I’m so happy to call this my life.
I’m totally geeking out right now! This is a super fan girl post(sort of) lol. I’m super into doing STEM projects with the kids( mostly for Sage, Atlas is still too young but he likes to watch). I recently saw a post on Www.brave-the-elements.com called “See Sound with oobleck”. The women who runs this website Cara Florance is the author of some really cool kids science books (which I can’t wait to get). We did the experiment , which was super fun and I posted a video of us doing the experiment on Instagram , and Cara herself liked it enough that she not only liked our post, but put it in her own Instagram story!!!! I’m kind of geeking out , I feel like semi-famous lol! Which is great because like any other blogger I’m trying to put myself out there , and to have an author put us in her story is pretty BA if ya ask me. So thanks Cara Florance, for the shout-out and all the other activity ideas I’m excited to try!
So as far as the activity itself , It’s essentially a fun little experiment about sound, and a way to show kids the vibrations of sound (kind of like how sound bounces off our eardrums). You make oobleck , and if you’re any body that’s anybody you know that’s just a fun word for a goopy non-Newtonian fluid (viscosity can change from liquid like to solid like) made with 2:1 cornstarch to water.
Then you take toilet paper/paper towel tubes and make them into a periscope looking thing and I used a balloon to make the drum part (full fledged instructions on the website above) and I used a ballon I had hanging around to make the drum part. Check out the video and have a laugh and go try it out yourself!
Side note- I think STEM/STEAM activities are the best way to reach kids. It holds their interest , and they are much more likely to retain the information because they learned it in a tangible way(my opinion). I know personally that yes I gain knowledge through reading and other traditional methods, but so much more from hands-on activities and real life experiences
and shout out to dad(my husband Steve) for making awesome noises !
As is tradition for many families , today My Aunt Deb and I took the kids for their “obligatory” Santa photos. Atlas had an adorable “suit” which consisted of black pinstriped pants, a white button down, and the matching vest. He looked like such a prince! Sage didn’t have any good holiday style attire, so you guessed it we made a Target run beforehand to pick a dress. And ohemgee did we pick the most adorable mustard yellow A-line lace dress, and the lace has all these little leaf shapes in it, I know it sounds strange trying to explain but when you look at the photos, she looks like a little model. Sage also requested a red Santa hat , Atlas had one and she wanted to match her baby Atlas. So with accessories and attire acquired we headed to the local Cardi’s furniture store where they were doing free photos with Santa. The Santa was incredible, he looked amazing and was great with kids.
By the time that was finished, we were all hungry so my Aunt the kids and I headed to Taco Bell for a quick lunch. I know it seems rather insignificant a few photos with Santa, and a fast food lunch, but I greatly enjoyed our day. When we are with my Aunt Deb , it’s almost like my mom is still here. My mother loved all 3 of her sisters dearly, but Deb and mom had a special bond. They got together weekly and were always super close, so whenever I’m with her I know my mothers not far away. No one will ever, nor would I ever want anyone to replace my mother but I’m blessed everyday that my Auntie treats her niece and great niece and nephew like children , and great children. I will forever be grateful for these moments they get to share with their “Auntie Grandma”
So I know this blog is supposed to be focused on our journey with glaucoma, but that’s only one small part of our live. Today like many, maybe even most people I spent some time making Thanksgiving preparations.
Waking up this morning baking desserts for Thanksgiving was just a chore (one I was happy to complete, but a chore none the less) I was wrong , it turned out to be a fun way to connect with my 3 year old daughter Sage and a great start to our day. Watching the joy on her face as she added ingredients, and mixed and prepared just melted my heart. We made a pumpkin pie and apple crisp. Our day started off with fun which helped her have a great attitude throughout the day. We had fun playing and learning. She was even super cute with her brother and helped mommy clean.
Sometimes it is so easy to just put the kids in front a movie or tell them to go play, but what they crave is our attention. She was happy to comply with my requests because she was involved in what I was doing. If I said wait, she waited, if I said mommy will do this part , she let me. I’m so amazed at how well she did today. I’m so glad for the amazing day we had together as s family and the connections we made as a mother daughter team.
Time it stands still
Everyday I think of you , wishing you were here
So many times wishing you were near
Longing for your strong embrace
I even miss you invading on my space
The little things that tore us apart , seem to be what I miss most
I miss your scratchy smokers voice and even your insults
A mothers love it never fades , even though she’s gone
For all you did wrong, you did so much right
Thank you for showing me how to love, to forgive and to be kind
But most of all I thank you for all you’ve left behind
With the holidays coming up and all the wonderful craziness that has been life I’ve often thought of my mother. Wrapping my head around it being the fourth holiday season since she’s left this world is mind boggling. I hope there’s a spectator stand in heaven , and she can see how beautiful and amazing her grand babies are. I’m sorry she doesn’t get to be here to watch them grow, but I promise I’m making her proud (most days, we all screw up sometimes ya know) I can’t even begin to imagine how she would be with all Atlas’ diagnosis’s and appointments ( if you knew my mom , you’d know what I mean) I can just see and hear her getting all worked up in my head. All I know is I’ll forever be her peanut and my babies will forever be my goose, and my magoo.
Have you ever had a week that just seemed like it would never end, like you just keep getting dealt the 💩 card?? That’s my week , and although it’s been a tough one I’ve managed to mostly keep my cool and not let it rain on our parade.
It pretty much started last Saturday and has kept rolling. We took a ride to do some errands and we were on a well traveled main road in mild traffic ,maybe going 8-10 miles an hour , the person in front of me abruptly stopped, so I had to do the same …. there was just enough space between us that I only tapped his vehicle but the truck behind me hit us. Most importantly all drivers and passengers were unharmed ( I had 4 kids with me) but it’s a pain , we had to wait for the police blah blah and I’ve been on and off phone calls with insurance companies all week ( waiting for an adjuster to come appraise the damage). So that our Saturday afternoon , the evening didn’t prove to be much better either. My husband was at his sisters for the night helping her with some home repairs, Atlas spiked a fever and all I wanted to do was snuggle in my bed and watch movies. Not so much apparently our bedroom TV set is dead. Meanwhile I talk to my husband and he accidentally smashed his phone..
Sunday we ended up at sick care and Atlas was diagnosed as having an ear infection. Then last night Sage thought she could fly and get her balloon that had drifted up high in her room and stacked a bucket on a stool, landed on her chin. So we made our first ever trip to the Emergency room to get her gash checked out. We waited over 3 hours in the waiting room , when we were finally seen they did do 3 stitches. Sage was a brave warrior the entire time at the hospital she didn’t shed a single tear. She let the nurse clean her wound and apply the numbing agent. Then we waited while the numbing agent took effect. The doctor gave her a little bit of versed to calm her, then worked his magic. Watching him weave away with the stitching thread was pretty neat. I’m even proud of myself I was nervous and scared for my baby girl but I kept it together, she was such a trooper!! I got lots of lovin’ and cuddles last night. The worst part about the ER is the waiting we ended up being there about 5.5 hours total, then came home to a driveway chuck full of snow. So at midnight Steve and I spent about half an hour or so shoveling snow like mad people. In the end by the time we cleared the snow got everyone in bed it was about 1:30 this morning.
But the most important lesson …. DO NOT go to the hospital hungry … eating Wendy’s at midnight is not as fun as it sounds.
As I have previously stated prior to Atlas’ birth I had no idea a baby could be born with glaucoma. It opened my eyes to the fact that there are so many different issues babies can be born with . It’s only the beginning of the road for his journey , but it’s already changed my life and opened my eyes. I feel like I’m a bit more observant, I’m starting to notice the little things more. Im more nervous as a parent this time, which is opposite of most people. I think more about any little symptoms or things that happen , because I don’t know if it could be related to his glaucoma. My heart aches every time he cries, it always sucks as a parent when your child is sad, when they have a “health” issue you wonder even more, is he in pain? Do his eyes hurt? Or is the just regular cranky baby cries?
I’ve been inspired to really put myself out there mores , to continue to learn and to hopefully find a way to turn our sour grapes into some next level wine and really make a difference not only for us , but for other children and families. So if anyone in Rhode Island area is reading this and has any thoughts or connections on ways I can get involved in the local low vision community please let me know.