Friday, April 30, 2021

It's Just a Phase

Raise your hand if you've ever complained about your child and someone replied "it's just a phase" or "it'll pass."

It's not just me, right?

"Ugh, his reflux is so bad!"
"It's just a phase. He'll out grow it!"

"My kid won't sleep!"
"It's just sleep regression or he's growing. It's just a phase. It'll pass"

"My kid won't stop screaming! My head is about to explode!"
"It's just a phase. When he learns to talk, he'll stop yelling so much."

"My kid is such a picky eater. He only wants Mac-n-cheese!"
"He'll out grow that. It's just a phase."

"My kid won't potty train! What should I do?"
"It's okay! He'll do it when he's ready."

*And yes, I am super guilty of saying these things to other parents too*

I think we look at our kids in phases. They move from one to the next and that continues for the duration of childhood. Some kids move through phases faster than others, but eventually they get there. Well, eventually the neurotypical kids get there.

Theo goes through phases too, but at a much slower pace. I say "slower pace" because I want to give him hope. Hope that he will someday reach those milestones and move through these phases. But, as I write this I realize that I don't actually believe that. 

Shall we be realistic? It's going to hurt. 

There are a lot of phases that I don't think Theo will ever get through. I'll be changing his diapers until I'm in diapers. He'll never leave our home. He'll never function on his own. That's it. That's the reality that we are faced with.

There's only two things in life I've ever really wanted: to be a mom and to travel the world. And now, because of a walnut-sized dilated blood vessel, I don't get to do either of those. 

I guess I'm technically a mother, I did give birth, but I don't feel like one. I am a caregiver. Theo doesn't know who I am. He doesn't want or need me. He doesn't want to cuddle or hold my hand or play. He doesn't miss me when I'm gone.

And the traveling thing, it's not gonna happen. Taking Theo anywhere is almost impossible and we can't leave him behind. Josh and I can't go on trips together because one of us always has to be with Theo. And forget having someone come watch him. He's too hard to take care of and I don't want to do that to anyone.

I think it's always helped me to realize that hard things will eventually end. Any trial you are going through, no matter how hard, will eventually end. You will overcome it, you will conquer it, you will learn from it, and you will be stronger because of it. 

There is always that light at the end of the tunnel. The light may be close or it could be so far away that you can't see it yet, but it's there. I think for me there are certain phases that really have no end. Realistically they don't. There's no light at the end of that tunnel.

Monday, April 26, 2021

Wheelchair Delivery, Ophthalmologist, and NordicTrack Bike

Mother Nature is having an attitude problem, but other then that we had a pretty good week!

Theo LOVES to lay on his vibrating mat at OT. He wasn't too sure about the one I bought him for the house. Maybe it was too intense?!


Treat yo self! I got some hair!


On Tuesday, April 20th, it snowed. Oh goodness. It's springtime, so it's fine, right?


A representative from NuMotion brought Theo his new wheelchair, Convaid Cruiser! It's so cool!



It's the end of an era! I can't believe Theo isn't going to be using his City Mini anymore! This stroller has been to Machu Picchu, on a cruise to Antarctica, and to Disneyland! It has a lot of miles behind it, but SO SO SO many memories!


The Convaid Cruiser folds up and can go in a large travel bag. This makes it easier to transport on airplanes. I've heard horror stories about wheelchairs getting damaged or losing their wheels while on airplanes. I hope that doesn't happen to us!



It also fits in the back of my Traverse without being folded up.


We have FOUR adult bunnies in our backyard. Do you want to guess how many babies will be hopping around our backyard soon?!


On Wednesday, April 21st, it snowed again!



That afternoon Theo and I went on our first journey to Peoria with his new wheelchair.

[Puppy was helping Theo be brave]

Before we saw the Ophthalmologist, Dr Steve, we talked with the Optometrist. She did her examination and then told me that she needed to put drops in Theo's eyes. I told her that was fine and that I would hold his head to help. She then took Puppy and showed Theo how she puts drops in Puppy's eyes and that it is safe. Theo did not like her doing that to Puppy! He has such a tender heart!


While Theo's eyes dilated we went to a waiting room where he was able to stretch out on some chairs.


After about 45 minutes we were called back into the office and a few more nurses checked out Theo's eyes. He was not happy about so many people looking at him, but I kept playing Frozen II and it made everything better... kinda...

We then got to see Dr. Steve. It's been a while so I filled him in on all of Theo's progress and he was very proud of how Theo was doing. He then looked at Theo's optic nerve and said it looks great. BUT he does want to try glasses to help with the myopic astigmatism and alternating exotropia. Hopefully Theo will keep his glasses on and he won't have to have another surgery, but we will see. I think he will look so cute in glasses and I can't wait for them to arrive!

[Theo loves to grab onto Josh shirt (or beard) and pull him close for a kiss]



[I ordered a few things that I hope will make flying easier and more comfortable for Theo]

On Saturday, April 24th, our NordicTrack bike arrived! 





[Trial run!]

[I love our gym!]




[Getting a good look]

On Sunday, April 25th, I did my first ride with my favorite trainer, Tommy Rivs. It was great and I was a little sore when I was done. I'm looking forward to completing his program. My goal right now is to run three days and week, bike three days a week, and lift weights every other day.


Sunday selfie!



[Yard work]

I went through Theo's 6-24 month clothes. I'm sending all the "gender neutral" clothes to Ryan and Kayleen and the rest I am giving away on my local FB group. I love his little swim trunks!


[Work pictures from Josh]

Funny stuff:


Monday, April 19, 2021

A Pretty Normal Week

We had a pretty normal week around here. Just school and therapy for the most part and not too much to report.

It was sibling appreciation day (well, that's what Facebook said) AND it's been two years since I was at Star Wars Celebration with my brothers. It was such a fun few days with my fellow nerds!


On Wednesday, April 14th, Theo had PT. He was showing off a lot for his best buddies (Beat-bo, Rollin' Rovie, and Baby Yoda).


About a half hour after I dropped Theo off at school I got a call from the school nurse. She told me that Theo was REALLY crabby and the only way they could make him happy was by walking the halls and letting him listen to his music. They told me he didn't have any more scheduled therapies and if I wanted to come get him that wouldn't be a problem. They also said they could keep him there if I was busy. I told them I would come get him since he has therapy right after school and I wanted him to be happy before Ms. Jen came over for Feeding/Speech therapy.

This is what Theo looked like when I picked him up from school. He looks pretty pleased with himself, doesn't he?


That afternoon we had Feeding/Speech therapy with Ms. Jen. While Theo played with his food (apple sauce with Apple Jacks chunks), Jen and I talked about different communication devices.



Even though we celebrated on Sunday, April 15th was my parents 40th Wedding Anniversary! Aren't they too cute?!



April 15th is also Missys birthday! She's pretty awesome!


On Friday, April 16th, Ms. Becca came over for some more PT. Theo is getting better at going to the right. I hope he'll be able to roll over his right ear (on purpose) soon. *Fingers crossed*



In other news, I don't sleep well (never really have) AND Josh snores. It's a bad combo. We've tried a few different things, but none of them have worked. Josh decided to try the Smart Nora's 30 day free trial. When the device hears you snore it inflates a little pad that you put under your pillow. This is supposed to wake you up enough so you stop snoring, but it doesn't completely wake you up. We've had it for a few days and it seems like it's working. I'll keep you posted!


To help me sleep Josh bought me a Hug Sleep! It's like a swaddle, but for adults! It's awesome!

On Saturday, April 17th, Theo and I watched the funeral of Prince Philip. I don't know a whole lot about the Royal Family, but it did break my heart to see the Queen. They have been married for 73 years! I can't even imagine how devastated she is ❤️



Also on Saturday, I finished my second round of 1/2 Marathon training with Tommy Rivs. It was such a great program and it was even better the second time through! 


[This is very appropriate]

[My life revolves around FRIENDS references]
[Welcome to the Midwest in the spring]

[This will literally be me in December! Can't wait!]