Finding Balance

So, I’m not sure if I’ve mentioned, but I recently turned 35. I know, I’m shocked as well. Typically a specific age doesn’t bother me but 35 felt kind of heavy. First of all, it was spent in Cincinnati in the hospital with Carson. That isn’t the best way to celebrate although I have spent a few birthdays in hospitals with Carson. But that wasn’t all of it. There was something about that number that made me feel like I should have my stuff together more, I should be way more adult than I feel half the time. But, the reality is, I still don’t know the answers to half the things I think I should, I’m still unsure if I’m doing things right, & I’m kind of in shock that I’m in charge of two humans & their outcome in life. I’m trying to find balance between being an adult & the best mom I can be to my babies while also wanting to still have fun with friends & pretend I’m young & carefree.

I’m so fortunate to have family close to watch the kids when we need time away & it is so needed. Carson has struggled when we leave him recently however. It instantly brings back memories of hospitals & tubes & the disruption of normal life. This is just another thing we are trying to find balance with. Trying to live a life that embodies family time & adult time is what we’ve always strived for & I think we do a pretty good job of it! It’s just a constant battle of balancing what is best for everyone.

A fun night with friends!
Meeting Edwin McCain after a great concert performed by him!
And then spending the entire day with my babies the next day, even if it was unplanned ❤️

Contentment

Lately I’ve been thinking a lot about contentment. That sought after sense of happiness, bliss, pure satisfaction. I feel like I’m constantly chasing it. It’s hard to just sit in a moment & feel content.
When we came home from Cincinnati I honestly never thought I would ever have a moment of relief, much less feeling content. Then, a funny thing happened, life keeps moving & you get settled & realize the huge obstacles you were facing weren’t that tough at all.
Even after all of that, feeling at peace is a constant struggle for me. My mind is a million miles a minute so to ever think that all is right in the world is my biggest challenge. But, I noticed the other day, everything seemed brighter, songs I’ve skipped over I wanted to hear, sunroof was opened, pure happiness was flowing all around. I had found what I am constantly seeking. There was no rhyme or reason why it was here, but it felt blissful. And just as quickly as it came it was gone again. It was back to the daily stresses & worrying about every little thing. I guess that’s the natural ebb & flow of life. We unintentionally put so much of life’s worries on ourselves that separating from it is almost impossible.
I will say having those few fleeting moments of pure contentment have reminded me once again that it does exist. It’s just working on unwinding myself up enough to truly live in it.

A love letter to my daughter

Dear Hunter Mae,

I wanted to write you this letter to let you know how you filled a place in our heart & family we didn’t know we needed. You were the missing puzzle piece our hearts secretly longed for. You were the one thing I was scared to even hope for after losing Dylan. You are my built in best friend whose favorite game consists of telling each other who is prettier.

I wanted you to know that while your brother takes the spotlight often, you shine in your own light. You are the most amazing sister & love your brother like none other. You miss him incredibly when he’s not around & boss him around like you are his mother. You are hilarious & beautiful & smart & sassy & have the sweetest heart. The rare moments I get to wake up next to you, when you aren’t snuggled up next to your brother, you tell me I’m a beauty. You have a genuine heart of gold. 

Mostly, I wanted you to know how important you are to all of us. We were not complete until you were born. Carson loved you from the start & you have looked at him with adoring eyes ever since. I love seeing your relationship & knowing that no matter what you two will always have each other. 

We love you Hunter Mae, always & forever.

World Down Syndrome Day

I’ve been thinking for the last few days what I wanted to post for World Down Syndrome Day. Should I write about inclusion, acceptance, opportunities, more alike than different. And what I kept coming back to was the realization that if I didn’t happen to have this amazing kid I would not be a part of all of this. All I would know about the Down syndrome community was the after school special I saw as a kid. I wouldn’t know how an extra chromosome makes you extra intuitive to human emotions & makes you have an extra special memory where you will never forget someone’s name much less their dog’s name. That extra chromosome also brings some stubbornness but that could come from your mom & dad too. And that extra chromosome makes you have the biggest, most open heart to all those around you. Sometimes, no scratch that, all the time I think we ALL could use that extra chromosome. That uninhibited, go up & meet & greet whoever you see, type of personality. He’s an old soul who wants to genuinely know about your day, what you are having for dinner, & the most important life question, what color is your front door. You would not believe how telling that answer is.


With yesterday being World Down Syndrome Day I’m once again reminded by all those that love my boy like he is their own, that extra chromosome is worth being here. There are places in this world trying to get rid of it & that breaks my heart because thinking of a world without Carson is absolutely a world I do not want to live in.

So back to yesterday, Carson’s school had a celebration for World Down Syndrome Day & to say it was spectacular would be an understatement. The sea of Carson’s Crew t-shirts, blue and yellow, & crazy socks made my heart smile. Carson’s class singing “You’ve Got a Friend in Me”, and teaching all these young minds a little about Down syndrome & a lot about how they are already showing acceptance & inclusion brought tears to my eyes. Having friends near & far reach out to show their support not only for Carson but all those rocking that extra 21st chromosome was beyond heartwarming. Finally, knowing all those that have come in contact with Carson just might have a different view of Down syndrome than they did before, that made my day, week, month, & year! All in all, March 21st ties Christmas for the best day ever!

Huge thank you to Carson’s amazing teacher Ms. Brianna for organizing the assembly yesterday & all those who took time out to think of my sweet boy 💙💛💙💛

P.T.C.D.

The stages of Post Traumatic Cincinnati Disorder 

So, I’ve bitched & moaned about how all of this has affected me. But the guy at the center of it all is finally feeling the effects. It’s been kind of heartbreaking to see him feeling the weight of it all. 

It started with frustration & aggression, some behavioral issues have come back as well. It slowly all crept back but by Friday morning it was boiling at the surface. While getting him ready he said, you only make me worse. You and daddy make me worse. I told him we only want to make you feel better. Then it was followed with talking about the hospital. I reassured him that no one was in the hospital or going back there, we are all home for good! He sat in my lap & started crying. His sense of security has been disrupted. I know it sounds so crazy but those 17 days in Cincy affected us all. We are all changed from it. Hunter still says things like you were in Cincinnati so you weren’t here for that. I’m ready to never think about it again but it’s now a huge part of our story. 

All he talks about is tubes in his nose. And asking who has to have enemas. He’s keenly aware of this difference in the world. He doesn’t notice any other differences, hair color, eye color, skin color, chromosome count, but this he is very aware of. 

Anything, I’ve ever gone through in my life so far, which has been a lot, this is shattering more than I can say. Seeing my strongest little boy, who has been through more than most, feeling the emotional effects of it all is kind of devastating. I don’t know what to do with that, except let him know we are here, will always be here, & hospitals are, hopefully, no more. 

So, here’s to recovering from all it. I always say he handles life so much better than we do &, he still is. I just know inside he’s still reeling from it all 💙 

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 💙💛💙💛