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! 

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 ❤️

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