Thanksgiving plans.

Is it weird to anyone else that thanksgiving is a week later than normal this year?

It is to me. Its throwing me all kinds of off.

Anyways – this year I am hosting. For a few different reasons, one of which is I am probably crazy. But I like being crazy with my crazy family. i need a table big enough to seat us all, and I need to do some crazy grocery shopping, but it’s gonna be a blast.

I start to get all giddy with excitement like “oooo maybe i can have all my christmas decorations up! and i can get lots of fun cute ideas for table settings off of pinterest! And we can have a kraft and gold colored thanksgiving theme!!!”

and then reality hits. And there will be no pinterest-worthy decorations. There will be no cutesy printed labels indicating what the bowls contain on the non-decorated countertop. It will be plain and simple and full of good food and lots of kids and lots of craziness. But we will be together and it will be awesome in its own way.

I had an epiphany earlier today.

I was talking to someone about the fact that when Kendall got so sick this summer – we had NO IDEA what was coming our way last year when we were celebrating the holidays. I would have had no clue it was her last holidays with us. And really, no one has that guarantee. But it hit me – what if THESE were her last ones with us? We live so close to that edge, with the reminders all the time. I don’t want to live in that place out of a sense of “woe is us, let’s be sad, let’s be melodramatic over everything” – I want to live in that place to say – LOVE PEOPLE. You never know when it may be your last chance to do something amazing, something memorable, something perfect with those you love.
I’m not talking about going to any kind of extremes here. I’m just trying to say – what is it really all about? If these were your last holidays without loved ones – what would you want to remember? Would you want to stress out over having the perfect gift with coordinated wrapping paper? Or would it be more about laughing around the table together, making more memories together, spending as much time as possible soaking up those hallmark moments?
That’s what I’m planning for this Thanksgiving. Surrounding myself with those I love the most, laughing a lot, holding everyone close, and making awesome memories.

My house will not be immaculate. But it will be good enough. It will be warm and full of food and family.

Maybe that is pinterest-worthy after all.

 

t

Caramel Arms & Crockpots.

this post is inspired by and dedicated to my tribe. More specifically, some of the chief members of my tribe. My tribe being those women near, far, real,internet who keep me going. They make me laugh or they let me vent or they just know what to say or what to do. And so very many of you are in my tribe – whether you want to be or not. But the ones who inspired this post – they know who they are and they know what they do.

It was just another “vent session” – a time where we can just lay it all out there – frustrations, tears, anger, crabbiness, whatever. No one expects anyone to be Susie Sunshine, we all just get each other. And while it might sound like the most negative situation on earth – it somehow never stays that way. At the end of the day, someone says something that sets us all off into hysterical laughter. And we all realize that no matter what frustrations the day has held, at the end of the day we can still laugh. Because we all survived another day as moms to special kids. We survived the frustrations and the limitations and the brick walls we do our best to knock through every day just to have “normal” lives. our kids are still alive and kickin and while we don’t always get to lay our heads on the pillow at the end of the day, we can take a breather, thank the good Lord for his grace, and catch some shut-eye before it all starts all over again in the morning.

We know that many times, our friendships with our friends “before complex kiddos” suffer. Become strained. Change. And we know that that change is because of us, because WE’VE changed. Lack of sleep and lack of resources and abundance of bureacracy – these things change you. So we seek out others like us. Other broken ones, broken like how we feel sometimes. Like the selves we thought we would be, or envisioned ourselves being, have just become like a shattered mirror, reflecting back to us shards of what we thought we would be, but never a whole image.
These words that follow are not my own, but i wanted to give these feelings, these beautiful broken people i call my friends, a voice. Maybe you identify with the words for your own self, for whatever struggles you face. Maybe you will read them and understand a little bit about where people you may know are coming from, people who deal with medical challenges or any challenges really.

Most days we are trying to fight against a system with so any things stacked against us

and we hang on

Like industrial super glue

And our venting sessions between friends who will steal table settings for you while you make speeches – This is what holds us together.

And those friends who are willing to put up with our bitchiness

and turn terrible moments into hilarious gut busting stories to help you keep your sanity – These are the friends who you will never let go.

They let you be you in all your craziness -good or bad but never hold it against you

And they would go to bat for you and start a food fight or wrestle an Oompa Loompa

Or throw themselves on the invisible flames for you. (Insert your own random crazy nightmare scene here.)

Even through the tears these friends hold a special place in your heart and their kids become part of your little clan

And they always know just what to say, what you need to hear right then. No judgement, no condescension, no brick walls – just friendship, and love. This is what keeps us together, what keeps us moving forward.

 

This is a glimpse into our world, we moms of a sisterhood no one ever wants to be a part of.  But for me, i am blessed. I have so many awesome friends who do not totally get this sisterhood, but try to be the best friends, family members, tribe members they can be.
So really – this post is for all of you – for all of you who don’t quite know what my frantic days and often sleepless nights are like, but you try to get it anyways. For the ones who make me laugh, who know how much a random text every now and then means, for the ones who feed my children, feed my cravings, and feed my soul.
I just wanted to give you all a big hug, and say

 

thank you~

 

terra

He Speaks. Again.

So it’s that Time of the Year again.

So Mito awareness week has come and gone. A couple of weeks ago Terra again asked me to write a blog post for Mito week and once again I have waited for the week to end before writing. Oh well, does it really matter? Realistically it’s Mito Week every week at our house.

Last year Terra asked me to write a paragraph about what Mito meant to me and it turned into about twenty paragraphs. I think Terra about fainted when she found out that I had that much junk rolling around in my head. So this year I will do this same. It will probably be shorter and maybe just an update from my post last year (I’m sure Terra will link last year’s post in here somewhere).

Not much has changed on my thoughts about Mito. I hate it and it still sucks!!! Ok, thanks for reading thisIMG_4547 post is now over……….

well not really.

Like Terra does on occasion in her posts, I ramble along once I actually get started. I still do not like to talk. I still do not like to share my opinions outside of the home or work. But I will again try to open up a little bit this year.

In my non-medically minded brain Kendall has had a good past year. In my memory-challenged mind, I believe it had been about a year since Kendall had been hospitalized that actually kept her inpatient overnight. This lack of hospitalization can be credited to many things but I feel it is mostly due to Terra’s oversight and monitoring of everything Kendall and the TPN nutrition she has been getting for over a year. It is not fun hooking up an IV to her central line every single night that runs for about 16 hours a day but if it keeps her home we will do it. This isn’t to say that everything has been great with Kendall medically. She had been having increasing issues with her bladder and has lost function in her bladder like she has in her gut. I don’t want to rehash all her medical stuff but this is how Mito works. Every time she gets sick her baseline drops, she loses function and so far with Kendall that function isn’t coming back. Hence the most recent round of hospital stays due to bladder surgery and infections associated with them. She now has another “port” into her bladder that we can drain urine out.

That’s the Ben Atkinson Cliffs Notes version of Kendall medically over the past year. If you want more, read all of Terra’s blog archives. But most of you aren’t reading this (my post) for my medical update of Kendall, it’s my perspective on the whole situation.

My perspective on the medical situation is easy. I make decisions based on logic without emotion. Terra makes decisions based on how she feels and her emotions. This is how Terra and I are different on the medical side of this Mito junk. I also feel that this difference between Terra and I is very helpful when making decisions for Kendall. For example, take the recent bladder surgery. My question to answer, although painful, was very simple, would the surgery improve Kendall’s quality of life? That is it -that is all I needed to ask. Terra had so many more questions to answer. Terra thought about the pain level, the surgery itself, the risks, the scars that Kendall would have, the additional tube, the recovery and I’m sure many more. But Terra and I balance each other out in the decision making process because we get to see each others thought process and views and make what we feel is the best decision for Kendall medically and I guess socially.

Let’s move away from the medical stuff and into what you all really want to see and read…the personal crap.DSC_5348 The stuff that goes on behind the scenes in my mind and how I see our family. I can only assume some of these things are typical of living life in a house with a medically fragile child. This is what I hate about Mito and I guess any other disease that affects families. First off, yes Kendall is medically fragile. Most people get to see Kendall when she is at church smiling and looking fairly normal. Realistically we don’t take her out much when things are acting up inside of her. Why would we? Here is what I see in my mind when I think of Kendall being medically fragile. Picture beautiful Kendall smiling ear-to-ear as she does standing on top of a large red rubber ball, balancing her now three drainage bags draining her stomach, gut and bladder in her hand and her TPN backpack on hooked up to her IV while slowly rolling that red ball on the ledge of a fence where on one side of the fence is a 500 hundred foot cliff that drops into the Ocean and on the other side of the fence is only a 250 foot cliff. When she losses her balance she falls either 250 or 500 feet. Which one would you pick? They both suck and lead to nothing good. This is why we take Kendall out on a very limited basis but it is getting even harder.

Kendall is continuing to develop and becoming so much more like a three, almost four year old. This is awesome but so challenging at the same time. Kendall gets “left out” too often when we have plans as a family. She is now very conscious of when we leave and she is left home with her nurse. She hates being left out and it kills me when we have to leave her. We constantly have to make family decisions based on how Kendall will be affected. Will she miss a much needed nap, is it too hot, is it too cold, is there a small chance she will get wet and ruin one of her many tubes sticking out of her body, does she have attachments connected to one or all of her tubes, will we be out too late and past her 7pm bed time, is she losing her balance on that red ball and teetering ever so close to falling off of that cliff. All of these questions come into play when we try to do simple everyday items. How can we continue to live like this?

Here is the thing; I think we strive to live through these kinds of decisions and day-to-day medical fragileness, and have been doing a decent job of it, but at some point, the juggling act that Terra and I do is bound to fall apart. This is the hard part to put down on this post. As I said last year, Terra is one of the strongest people I know and I am sure several of you out there wish you had her strength, I know I wish I did. I still feel the same way. Terra is so very strong. But are my thoughts of Terra being so strong the wrong way to think about my wife? I try to support her but it’s not something that I have done very well. As a matter of fact I think I fail at this consistently. As I reflect on this now the way of support that I provide is probably too often not what she needs.

I support Terra through exhaustion myself. With my work schedule I travel 40-45 weeks a year, being gone on average three nights during the week. Many have asked why I don’t get a job where I stay home and don’t travel regularly. Reality is that I have so much freedom in my schedule that I can drop everything and rush home if an emergency comes up. I don’t know if I would have that ability if I did something different, at least that is what I am currently telling myself. I work long hours during the week (as many do) and then come home and get more exhausted. I do my best to support Terra by taking over the care for the kids so she can get a break. Actually while I type this Terra is at a hotel at an undisclosed location in the Chicago area because this week and the last few were just too much. I try to support Terra by sending her away??? Does that make any sense to people out there? Maybe not when my focus on support is by giving her time away? Don’t get me wrong I know that she needs the time away, heck I think every mother needs some quiet time away. They probably need more time away then we (fathers/husbands) give them. But Terra also heads out a lot with her friends to just talk to a real person instead of a computer like she does during the week. Are you seeing a pattern here? Why am I sending here away all of the time? I definitely think the time away for her is very healthy but what am I not giving here. I am not giving here my time!!! Ding, Ding, Ding I am the winner of my own question contest. This is again why I hate Mito. It is not the disease itself but the aftermath of what I think I have become and how this affects my family. I have consumed myself into my own little shell and am not supporting Terra in a way that she needs.

So why am I going into my shell? Please don’t take this wrong but I am so sick and tired of talking about Kendall’s Mito issues. This is all we ever talk about. I have become bitter and hard and apathetic. This sounds strangely familiar to last my post last year but I think it has become worse. I hate that I have become these things.

I continue to be apathetic towards my faith. When I can I go to church just to sit there and wait for it to be over to pick up the kids. I saw a picture on Facebook this morning that rang true. It stated something like this “Going to Church makes you a Christian as much as standing in your garage makes you a car.” Wow, I have to think about that some more. Our church is awesome, the support that they give us in genuine and in my opinion rarely found out there in the world of churches. I say I am still angry at God but now I just don’t know if its anger at God or disappointment at myself.

My heart continues to break for the older three girls also. The “normal” childhood for them is just not a reality. They just don’t get to do normal childhood things. I think Kealey knows that Kendall may someday not come home from the hospital, she has actually probably known for some time. She is a smart one, she is. How is this a way to live, knowing this kind of reality? Well it isn’t. Terra and I have always said that we don’t want Kendall’s issue to dictate our lives. We try this but reality is Mito dictates our lives, dictates the girls lives. They get the brunt of an exhausted mother during the week and an exhausted mother and father on the weekend.

This exhaustion also has an effect on the relationship between Terra and I. I get exhausted, zone out and go to sleep. Terra gets exhausted and dives into her support system on the internet. I am so done with talking about Mito issues that I am done talking or being present when Terra needs me. I don’t know when we, or more I, started using this as an excuse to stop being there mentally. Obviously we cannot just stop talking about Mito issues. They rule our lives right now. I must get better at supporting Terra in a way that she needs it. I will never replace the support group from the internet but I need to become the husband that she can turn to for support.

So, for all of you that read through this whole thing I am sure you are done with reading my complaining. But reality is what it is. Living day-to-day with four young kids trying to raise them right, traveling for work, trying to support Terra in ways that she needs and a thousand other things is completely exhausting. Throwing Mito issues into the mix is getting to the point of being overwhelming.

 

DSC_7139

 

Things are not all doom and gloom. We are all still here. Kendall is still here. She blows my mind almost daily with how strong she is and how she can still flash that amazing smile amongst all the pain. Keep on fighting Kendall Quinn, you are a miracle. When your Mito issues rise up keep on fighter waive your fist in the air and yell I got this daddy!!

Prayers are always welcome; Lord knows that we need them. I need them and He needs them from me.

 

Editors note: Signing out for Benj. I think it would go something like his old Fedex job where he had to run the radio.

 

This is Ben. Copy.

Random Thoughts from W1105.

Special treat time! i’m bored and the internet is wonky and i need something to keep my mind occupied.

So here you go – an extra middle of the day blog post from me. Full of the randomness spilling out of the top of my head at this very moment. If you get offended by possible swearing, talk of bra’s, or in general think this will be more mind-numbingly stupid than a Honey Boo Boo marathon – you’re probably right. Exit’s to the left. i won’t have hurt feelings.

I’m tired. I know you’re all probably going “duh”, or “join the club”. But I needed to say it. I’m really tired.

My bra is poking my chesticles. It hurts. I just called Ben to tell him I put on facebook that I needed him to fedex me a new bra. He was not amused. But is fedexing it.

We have awesome friends and family – and we are blessed to have this happen in two different cities in two different states while we try to live as a family separated. This is a huge thing. i seriously cannot thank enough the people who continue to ask me what we need – at home, at the hospital…you’re all amazing. My aunt came to the hospital today to sit with Kendall while I went out to lunch with my grandma. That was amazing.

I sat and talked and laughed with my grandma and she is the only one who can make me cry when i’m doing my best to not cry. And she did it again today. So then we both sat there laughing and crying at the same time like so many of my awesome memories are made of – my grandma, my aunt, my mom, and us girl cousins laughing and crying at some crazy story someone told…Anyways – it was so good to sit and talk with her. She’s full of wisdom, that one. I feel very blessed to be able to spend time with her while we are up here. Thank you aunt margie for coming and for writing down kendall’s every random request on stickers so i don’t forget that she wants green root beer and soup and a minnie balloon!

Someone took one of my cokes i had chillin in the parent fridge. This kind of pisses me off because hello – IT WAS ONE OF MY COKES!!! But i’m trying to think that whomever stole it (and yes it was plastered with kendall stickers, so someone had to know they were taking someone elses coke) really needed it. And I hope it was a blessing to them. I’m so magnanimous I know.

The transport nurse who worked on Kendall the whole trip up here just stopped in to say to her. That made me smile. Our resident on the floor said “every department i call for records or to set things up for kendall knows who she is! and everyone loves her!” That really made me smile. We are very loved here at the CHW. Having OUR GI and OUR complex care doc be on service – it’s a relief like I can’t even describe. It confirms that we made the right call to come up here when we did. It means that when i have to pull crazy momma bear, i have two big guns backing me up going – “do what she says and no one will be hurt”. Vs. having to claw and fight for everything she needs.

I didn’t cry yesterday. I haven’t cried at all during this crazy aced week. I did not cry when Kealey cried into my chest that she didn’t want us to leave. I didn’t cry when they were wheeling my baby down a hallway on a stretcher with life support equipment in their backpacks, and my other little ducklings were following along behind daddy, down the hallway, out the doors, into the big ambulance bay. I didn’t cry when i watched them crack the gurney into the back of the ambulance and escort me to the front seat. I did not cry when we pulled out of the bay and i waved to my other babies and my husband standing there, knowing that we would not see each other for almost a week. I did not cry as we flew through traffic on a busy Chicago freeway, racing towards a hospital that could better care for my very sick child. I don’t know why i have not cried yet. It is all very emotional. It is actually, i would dare say, scary this time. She is sick in a way that I have not seen her be sick before, in spite of the moments of silliness and wanting to play – her downtimes are very down. On paper, she is a train on fire headed towards a gasoline factory. Her labs are crap, crappy, and crappier. This infection is beating down her body. But she is still the same fighter. And I still believe in our Big God. Maybe i’m just coping well. Or maybe i need to be psycho-analyzed for my ability to sail calmly through a scary, crappy, effed up situation.

My friends –and auntie – you know how to pack awesome snacks. You are saving my booty – literally. i have no desire to go raid the vending machines on the surgical floor. Thank you. The ones who continue sending me crazy honey boo-boo related texts and messages – i love you.

I feel like I had tons more randomness to share when i started this post. But now its turning into a medical update post I need to make as so much has gone on in the time its taken me to piece this together. So here you go – enjoy the randomnicity.

 

terra.

Motivation Monday.

Has anyone else picked up on the fact that I started theming the days??? No? I’m too clever for you all???

(that last part is in my sarcasm font, in case it doesn’t show up on your screen…)

Anyways. Today is motivation monday. As in – what am I doing to get off my tookusMM1 and DO SOMETHING to achieve a goal/cross something off the to do list/etc. And while it is weird to be typing about motivation on a holiday monday that is supposed to be about taking a break, I’m trying to break through that mental block and post about the goings on around here. Cause Tuesday’s gonna come whooshing in with a vengeance and I will be all “what just hit me in the head and knocked me over” and it will be Tuesday with a pair of brass knuckles.

I’m not sure it was necessarily on anyone’s list of “goals I would like to accomplish this week”, but we attempted it anyways, and survived it even, so it’s going on today’s motivation monday list! We took the whole family (which means we brought kendall with us instead of having her stay home with her nurse as is the typical MO around here) to see a movie. In a theater. I’m not entirely sure I can capture how revolutionary this is. And I know that overall, we are very blessed and lucky that we CAN take Kendall with us, please don’t think I’m complaining in any way. It’s just hard to sum up the chaos that can ensue when Kendall decides to go crazy. And by crazy I mean we could get anything from a meltdown with screaming and crying over her shoes, to a hyper tasmanian devil bouncing off every wall from over excitement, to a puddle of sobbing goo over the pain in her tummy/legs/pee-pee/head/everywhere. And usually it’s all three at some point in the same trip. Given the fact that she had a diaper FULL of pure blood last nite, and in general has just been in far more pain the past couple days (since stopping the IV anti-fungals/anti-biotics), doing ANYTHING with her is an “iffy” proposition at best. It’s just exhausting sometimes, especially on top of the other three and their typical requests.

But sometimes it is so so so hard to do things as “part” of a family – and there’s just no good answers. So we loaded up our four plus another tag-a-long friend from a sleepover, and armed with her (what i thought was) fully-stocked “go bag”, off we went. (For the unmedical – a go bag is like a diaper bag on crack. It’s got pretty much at least one of every emergency medical supply that you might need for a kid like kendall – a replacement g-tube, spare caths, spare IV dressings, spare IV tubing, spare IV fluids, and the contents of at least the top two drawers of the cart of supplies that is in every ER room. It’s heavy and a pain to lug around, we usually just leave it in the car!) But I was glad I brought it in today as we had a few IV pump emergencies and then the usual issues with her catheter. But we survived the movie! Can’t say the same for the poor little boy in front of Kendall who came very close to having his head kicked in on numerous occasions by Kendall’s inability to sit still for more than three seconds….Sorry little boy!!!

Along with this fun outing, we simultaneously had to “flea bomb” the house. Ugh. I know a few of you IMG_3300saw this pic of Ben the other nite when we thought maybe the fleas were contained to the outside cat and the one who spent a few months in the pokey/animal control shelter. We got collars, the gel meds you put on the scruff of their neck, and then this uber fun spray stuff that you rub the kitties hair all in the wrong direction, spray them til they are dripping wet with this spray, and then throw them in an enclosed area to lick it all off. (ok we added that last part). If you’ve hung around here for any amount of time, you may remember the LAST time Ben decided to help the kitties with their grooming methods. So he came prepared this time. He pinned the kitties down, and I sprayed them and “fluffed their fur in the opposite direction”. I can honestly say that in 35 years of dealing with kitties (I’m not counting my first year of life, i don’t remember interacting with cats that young) – I have NEVER heard a cat make the noises that Tiberias was making. And I’ve heard a LOT of strange kitty noises.

So anyways, we were wrong. There are fleas all over. And yes, I know that makes me sound like the worlds worst housekeeper. Which I kind of am. But I didn’t think I was THIS bad. Anyways – we got the little bomb kit from Home Depot, covered up everything important, and left the house for a few hours. All three kitties have received the three-way treatment. I have washed everything that they have ever thought about sleeping on/sitting on/looking at in super hot water with baking soda. I have vaccuumed the heck out of every vacuumable surface in this house. And I still feel defeated about this. It’s SO annoying, gross, you name it. I hope this flea bomb thing works. My one solace is that they do not seem to be in Kendall’s room at air. Her room gets lysol’ed so regularly and the bedding is constantly being changed, and the cats honestly hate being in there unless I’m standing in there doing something at night. So – now you know my deep dark ugly secret. My house has fleas.  But hopefully not for too long!

In other Motivational Monday news – I need to start being better with exercise for a fall fitness challenge I am in with some facebook friends! It started yesterday and i’m pretty sure i’m at negative 68 points now…it’s been a good holiday weekend! And I am starting to get everything set for Wednesday’s fun adventure – camping out in the Chick-Fil-A parking lot near my house for the GRAND OPENING!!! YAYYYHOOOOOO!!!! If you know the kind of CFA addict I am, you will know that this is just a few notches below the return of Jesus Christ on the list of “things i’m looking forward to”. I am just so excited to be able to make it to the grand opening! For the uninitiated, this will require that I am there at 6 am Wednesday morning to check in, and that I stay on the premises for 24 hours, until the store “officially” opens at 6 am on thursday morning. So yes i have to camp out there. No i am not a camper-outter. Yes I am doing this alone because all my “friends” have excuses about why they cannot do this. You people better be bringing me starbucks/extension cords for power/keeping me company! I think I may try to do some live vlogging of the event. You all better be good commenters if I do!

Anyways – I need to get all the items I need to camp ready, make sure that nurses are ready for the crazy shifts they will be covering for Kendall, make sure my mom has a well laid out map of is going on for which child and at what time on Wednesday. ANd yes, I can hear your thoughts now, I AM crazy. If I tried to keep the crazy at bay, i’d be certifiable. So I embrace it instead. I have no idea how this is all going to work out – I just know that I want to try it.

I am being interrupted by the incessant requests to go do/find/be/make something – so i’ll wrap up this disjointed post with a few more disjointed ideas.

First – i did end up writing a friday post. i posted it on saturday, but backdated it to thursday. Fabulous reader Marcy wins the prize for finding it/commenting first. Here it is for those of you who are lost!

Second – Karissa is trying to get a new DS game. I posted this on the FB wall for Terra Talking – here it is again so you all can enjoy the kind of craziness I deal with on a daily basis. This kid is RELENTLESS when she wants something.

 

Third – I hope you all had a beautiful Labor Day weekend.  It’s been the usual kind of crazy around here, but we’ll survive. Thanks for sticking around to be part of our story!

love and light~

 

terra.

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