Tuesday, March 6, 2018

Momegory’s 

AKA Category’s of moms.

There are lots of different types of moms who are good in lots of different areas. Let’s begin:

The crafty moms, who needs Pinterest with these ladies around. Their kids projects are the ones that you want to buy on the black market. 

The athletic moms, straight from the gym to carline to coaching their kids who can do burpees better than most of us.

There are the corporate moms, I kind of yearn to be one of these moms, amazing suits, traveling for work, & going to business meetings, all while attending parent teacher conferences. 

Next there are what I call the angel fairy moms, the kind that my kids really want me to be. These are the moms that are so patient, I’m talking to the point where I wonder if they are medicated, so gentle, & kind, & I contemplate if the word “no” is in their vocabulary. See also: Nana, Grandma, mythical unicorn. 

Then, there’s this rare breed of medical moms & that is where I feel like I fit the most. These are the moms that feel more comfortable at doctor appointments & the hospital than they do at sports practice or PTA meetings. These moms know medical terms better than most doctors but feel lost at the playground around other moms. And these moms basically have been through med school & residency since their children have been born. We all have our niche market as moms & mine is dealing with Carson’s medical needs. I’ve said before I feel oddly at home in the hospital and therapy. These are my people. In another life I was on my way to be a physician assistant & maybe that has something to do with it. Maybe, though, it’s that I feel like things are most in control when we are in a hospital. Let’s test something, get the answer, & adjust. While things never work that perfectly, in theory it’s great! Surprisingly, Carson thrives in this environment, as well, for different reasons. Carson’s favorite thing in the world is to interact with others. Meeting new people is his happy place. In the hospital there are constant people coming in & out & he gets to meet them all, & in all honesty, make them all fall in love with him. He makes his mark on everyone & they are all enthralled with him by the time we leave. For me, I actually feel confident & like I have it all together here. Trust me, there are moments where I’m defeated & scared & lost, but for the most part, the hospital is oddly soothing. We spent a lot of Carson’s life in & out of hospitals. So there’s a sense of home there for us. Recently I’ve had people say, we could be doctors with all that we do (We also have a dog in kidney failure I give fluids to 3x a week). I wish! But in all reality, it’s all we or Carson knows. I guess the same could be said for all the moms I’ve listed above. I know & love & sometimes envy all these moms. I want to be crafty, sporty, corporate, angelic, & unfortunately, medical. 

Finally, there are those moms who aren’t yet. They are our sisters, aunts, friends, teachers, etc. They have my heart the most. Those who yearn for all of this insaneness but life is messy & messed up, and most of all, unfair sometimes. To all those ladies I hope you know you belong right along side of all us crazy women as well. Mostly, this is about sisterhood & even though sometimes we feel separated & segregated, we are all connected & need to all support each other. How else will we all survive without it? 


Just a few pictures of our last 7+ years in the hospital 💙💛💙💛



Tuesday, February 27, 2018

Gratitude/#blessed

In my last few posts I have been lacking on what I feel most, gratitude. I honestly 96% of the time feel extremely happy & #blessed. Sometimes we just all get in a rut once we are faced with challenges &, every once in a while, we need to really sulk in it. Thank goodness for an awesome adult night followed by a Sunday Funday to really put things back in perspective. 

Here’s what I realized, we all have our own struggles. It’s really easy to get wrapped up in what you are dealing with sometimes & not recognize that we are all struggling in different ways. I had a good friend tell me the other day that motherhood can be so lonely & it struck a nerve. I was sitting here feeling so alone. No one understood exactly what I was going through, even my husband. The pressure & guilt that a mother naturally assumes is unreal. But that really hit me. Here I felt so alone & almost ostracized but there are millions of mothers out there feeling just as inadequate & unsure as me!
 
So, back to this weekend, spending  time with our friends was more therapy than anyone could ever know. I began to feel more like myself, but also feeling like there was so need to hide my insecurities with parenting or life-ing, because everyone else is dealing with the same stuff.

Here is the one thing I’ve learned since turning 35, I want to be the most authentic version of myself. It most likely will not always be pretty, or neat, or even nice but it will 100% be me. I am extremely #blessed by amazing kids, family, & friends but every once in a while life just knocks you down. I’m so glad to be on the upswing & know we will all make it through it! Here’s to an amazing tribe for being there for us all! I needed it more than you’ll ever know ❤️ 

And yes, #blessed has been a subtle Bruno Mars reference because who honestly doesn’t love him?!?? 

The love of my life! So incredibly lucky to have him by my side & also thankful he lets me talk him into these things where we have to get dressed up 💛

So fun connecting with new & old friends! 


Thankful for amazing friends always around to try & lift my spirits!! FYI sun is definitely the way to a girl’s heart after 17 days in Cincinnati 😬


Sunday Funday was much needed! Thankful for an awesome school family that includes some pretty awesome parents & staff, & includes my real family too ❤️

So lucky to have a sister that forced us out of the house for a night of fun! We needed it more than you’ll ever know 💛And, just because they are so cute! Absolutely #blessed by these 2! 

Thursday, February 22, 2018

Our New Normal

New normal 
Our new normal - 400 ml saline, 20 ml glycerine everyday. 1 hour per day, 7 hours per week, 28 hours per month, etc
It’s kind of a shitty new normal. Who really wants a tube up their ass for 30 mins a day & then sit on a toilet for that long or longer but that’s Carson’s reality. Trust me if we could have something cut out of him to make it better we would. What parents are pro surgery? Parents that have gone through 7 years of this + surgery. I feel like surgery instantly fixes something, this back & forth is tougher. But, this back & forth is real life. One day you are doing great, the next you aren’t. 
Here is what people may not realize or want to talk about, poop is life. You will literally die if you don’t go, so welcome to our world. Making sure your kid can poop is kind of important. 

And can I say one more time this sucks. I’m trying to adjust to this “new normal” & still struggling some. Carson, he’s a trooper. He’s the one going through it all & just gets right in there when we say it’s time. Hunter brought books in the bathroom the first night for him. Now she just sits right outside the bathroom waiting for him to be done. Coming in & out to check on him. He watches Fixer Upper or Property Brothers & asks how much longer he has. What’s amazing though is how great it is working for him. He seems to feel so much better & is having 0 accidents. The otc enemas we were using were causing more harm than good, so thank God we came to Cincinnati if just to learn that. Anyways, I’ll post on that whole trip later. I will just say, I’ve been feeling extremely overwhelmed by our new lifestyle, mostly because I think of how restricting this might be...but that’s how it goes. Things you think are tough at one point, you’ll look back on & can’t believe you stressed about that. We used to do irrigations & dialations so this should & will be a breeze. We are ready for life to calm down & just feel “normal” again & we are so close.
Carson with Stormi, a bear a friend made for him while he was gone❤️

The entire reason for our trip & so worth it.  Making Carson’s quality of life so much better. 

Hunter waiting for her brother ❤️

Wednesday, February 14, 2018

Uniquely Unique

We are uniquely unique. Down syndrome. Hirschsprung’s. Supposedly they are more common in one another but we have yet to meet a family with both. At our parent meeting all we heard was how “normal” their kids were besides HD. Not going to lie, that stung a little. Bert was pissed. But I get it. People look at Carson & wouldn’t be shocked he’s still in pull ups at 7, a typical child you would. But the thing is, this is Carson’s struggle too. He is potty trained but dealing with HD makes it much more difficult. I would rather throw away a pull up than throw away a pair of underwear because trust me, some aren’t worth saving. These 2 weeks we’ve been in Cincinnati so far are starting to wear on us all at different times.  Carson has been having bouts of crying saying he misses Hunter. I didn’t realize how hard all of this would be on him. Today was my day. I’m overwhelmed & feeling broken down. Why does life have to be so tough all the time. I’m very thankful to be somewhere that understands Hirschsprung’s & our struggle.  I hate to post this because  we feel so loved & cannot believe the support we’ve received but today was tough. Turning 35 here was tough. Spending this long here has been tough. Most of all having a child battle a sometimes unmanageable disease is tough. Everyone here has been amazing & we are so grateful, just in a rut today & felt the need to share. He already has so many hurdles to go through why does this have to be another. So, here’s to life-changing answers & solutions & here’s to me maybe blogging again. A lot has happened since I stopped & I have a lot to catch up on but I forgot how good it felt to get it all out. I will catch up on the rest of our life & our sweet Hunter Mae but this needed to come out now. Oh, & Happy Valentine’s Day.



Carson with his blanket from Magnolia. Fixer Upper got him through some tough times! 
Carson waking up from his colonoscopy, endoscopy, &  placing of sensors for manometry. 2/7/18
Happy Valentine’s Day from Cincinnati 

Poor Carson woke up this morning with a reaction from the tape. 

O

Saturday, January 21, 2012

How Wonderful Life is Now You're in the World

I was listening to the Ellie Goulding version of Elton John's classic "Your Song" and it instantly struck a chord with me. This was my song to my sweet boy.  I started this blog post as a reflection of 2011 (a little late I know) and it still is. It's now just more of a reflection on how amazing my life is because Carson's in it. I've probably heard "Your Song" a million times before and never heard it the way I did today. I can't think of a more beautiful way to express how amazing having Carson in my life.

"I hope you don't mind, I hope you don't mind that I put down in words
How wonderful life is now you're in the world"

I hope he doesn't mind that I put my feelings for him and our life down in words.

2011 was a tough year for us but things can never be too bad when I have that sweet smile to glance at whenever I choose. I'm pretty sure I've never mentioned his adorable laugh either, it's pretty amazing as well. So here's a look our 2011 in pictures. I can't wait to look back at all of this one day with Carson. I don't think he'll ever know how much he changed our life for the better. He is my life's work and the most important job I could've ever been given is being his mommy (or mama as he refers to me as :)



January 2011

1/20/11 - Nap time bliss

February 2011
2/28/11 - Ending February with his 6 month check-up and looking cute as a button :)

March 2011

3/14/11 - Love this little guy!

April 2011

4/3/11 - About to go for his first boat ride :)


May 2011

5/21/11 - My handsome boy, 9 months old

 June 2011

6/11/11 - Carson lounging on mommy's raft

July 2011
7/4/11 - Me & my big boy on the 4th of July


August 2011
8/13/11 - Getting ready to go eat lunch at Guanabana's for Nana's birthday :)

   September 2011

9/9/11 -Sick boy = snuggle time :)


 October 2011
  
10/15/11 - Pumpkin patch cuteness

 November 2011

11/5/11 - Cutest Scot Ever!!

 December 2011

12/3/11 - Santa pictures

Can't wait to see what the rest of 2012 has in store for us. I know Carson has some big things he'll do in his life and I'm so glad I get to be along for the ride :)