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.
I’m getting so excited about the holiday season. It’s my favorite time of year. I love the smells, the yummy food, the family , friends and laughter. I’ve decided to host thanksgiving this year , which will be pretty low key but I’m still happy about it. My head is spinning with ideas of what I want to make, obviously the traditional turkey but for the sides do I want to do plain old stuffing or stuffing with cranberries or some other fancy smancy stuffing. I know this sounds ridiculous because it’s just stuffing , but you know it’s more than that. It’s the taste , the flavor the conversations it will start and the memories that will be made.. whether we have a big turn out or a small cozy gathering.
Then there’s the parade. There’s nothing like the enjoyment of watching the Macy’s Thanksgiving Day parade ( this year I’m figuring out how to stream it beforehand, so we don’t miss out like last year). Sharing that tradition with my kids will be awesome! I dream of being there to experience it in person …. some day it will happen.
But really the nest part is time spent with my loved ones making memories to last a lifetime. Which is why I love this season so much I get to see my family a bit more than I regularly do and I’m always okay with that.
Atlas, myself and my Aunt ventured to New York to meet Dr.Zaidman a cornea specialist out of Hawthorne, New York. The appointment wet well , I should receive a call from his office in the near future to schedule an EUA (exam under anesthesia) which is the best way for the doctor to get a full and accurate examination of Atlas’ eye. We even met an adorable little boy and his parents, and I really hope to become friends( we exchanged info). It will be so nice to have a mom that understands all our stuff, and have kids that are very close in age that struggle with eye issues. I’m really hoping that we just made ourselves some new friends.
Atlas spiked a fever of 102.5 in the evening and has been a bit stuffy for a few days. I gave him a fuse of Tylenol and it seemed to help. Then I went to turn the tv on in my room so I could snuggle the kids in bed, No such luck our best room tv apparently kicked the bucket …
My poor boy is still fighting a fever , it seemed to continue to creep back up in the mid 102 range so I took him into the sick care. Thankfully it was a pretty painless visit and little wait time, but he was diagnosed with his first ear infection(right ear). He know has to take amoxicillin for the next 10 days, uggg. A few hours after coming home his temp spiked again this time to 104.3 , scaring the crap out of me. I of course immediately put a call in to on call doctor -end result she thinks it might not even be related to the ear infection but from his mmr vaccine which he got lost week. So thankful we have vaccines for terrible diseases, but I’m so not a fan of these icky side effects.
Hopefully the next few days run a bit smoother…
I recently read ( or partially read, I didn’t finish the entire e-book before the library loan expired) on parenting. The title of the book: How to talk so little kids will listen, by Joanna Faber.
You see , my daughter Sage is just like her mother, like most of the females in our family ( if you know us, you’ll understand, and if you are one of us you’re fierce and I love you ) she is smart, willful, inquisitive and a bit of a bossy pants. I love her dearly , but effective parenting with a strong willed child can be a challenge. I want her to know her boundaries, to be kind and respectful; I never want her to lose her spirt, to lose that curiosity. As the years pushed by and adulthood set in I definitely have, like most of us do. But I’m hoping with the right boundaries and freedoms she can claim that spirit for the entirety of her life.
Obviously this book is on parenting, and has strategies on how to better communicate with children and elicit better results and behavior. It’s been about a week or so and although she still has plenty of moments and is rather rambunctious I see marked improvement in her attitude. The book is about communicating on the child’s level, about calmly reacting to situations and not reacting in anger. About letting go of the idea of having control , and with proper guidance allowing the child to have control of their actions and reactions. I’ll say one thing , it certainly makes sense to me. While I’ve always had some level of respect for authority and elders because it’s he right thing to do , I’ve never blindly respected someone. How can I respect someone if they don’t show respect to me? Yes my kids temper tantrum is aggravating and seems completely trivial , to her though these big feelings are important and confusing and hard to sift through. How can she learn to process these feelings and control her reactions if my reaction is just to yell, punish or demand something of her? I’m sure some people are thinking I’m a bit crazy, you don’t have to accept the behavior , just acknowledge their feelings and help them process them and problem solve their own solutions. Children are extremely smart, resilient and really just tiny little humans. Yes grown up problems are more pertinent than kid problems, but the feelings they elicit are no different in adults than kids. We’ve just learned to express ourselves and deal with our emotions properly.
I’m learning to approach problems differently , to try to breath more and that unless her or others safety is directly at risk , it’s ok to take a breath and think my next step through. I don’t need to have an immediate reaction, because likely it will come from a place of frustration and anger, in return eliciting feelings of anger and frustration in her and setting the stage for a crappy ending. Here’s to hoping it works, I’ll tell you one thing since her brothers arrived she’s been a bit different , I feel like I’m getting my girl back. She’s been kore cuddly and snuggly like she used to be and I kind of love it❤️