when the icu feels like home.

For those of you who actually try to keep up with my crazy random postings, this is going to start getting confusing. I posted my november 1 post that i had already had mostly written, and am now trying to fill in all the days between now and then, but I also need to update about Kendall’s current craziness, so my intervening posts may have random “future” information sprinkled in. Anyways – just go with it. Ignore the time space continuum and just read the stuff and don’t try to make sense of it. Got it?

Anyways – at the current moment I am sitting on the vinyl bed/couch in PICU room 501 of our home away from home up at Children’s Hospital of Wisconsin. And the fact that i am ECSTATIC about this particular room and this particular couch bed (aka Boxes o Bliss) speaks a little bit to the altered reality that is my life. I am excited because this room is huge. You don’t feel closed in by machinery and walls. There’s space to breathe. And this couch – it’s ONE PIECE!!! Well, three actually when you pull it out – but it’s like – the same size! i’ll post a picture on the terra talking page to show you what i mean. Even though I didn’t get to sleep until a little after 3 am, I got some of the best sleep i’ve ever gotten on the boxes o bliss, even without my eggcrate foam pads. (I didn’t bring them because I don’t anticipate we will be here that long!) It’s the little things I’m telling you.
But i realized last night, as I was pushing Kendall’s wheelchair and pulling my suitcase behind me as we walked to her room and the HUC announced “Patient has arrived to room 501” and cheers of “Hi Kendall!!!” echoed through the halls, that it felt a little bit like being home.

That is a weird thing to say, I know. And I know that there are some of you who will TOTALLY get that sentiment and others of you who think that’s an insane statement to make. And the truth of it probably is a weird combo of both. It is not normal for everyone, but somehow, it has become our normal. It is normal to have called ahead to request that one of “Kendall’s nurses” be assigned to her before we were even on the road to the ER. It is normal to be able to discuss labs at 1 am and recite med lists alphabetically while simultaneously helping the nurse hook kendall up to all the monitors. It is normal to feel a sense of relief that we are here, and settled, and that the weight of whatever has been bugging my baby for the past few days is no longer squarely on my shoulders.
So this is where we are at.

the plan for today is to get an MRI to make sure we aren’t missing an infection (as the local ER doctor suspected and Kendall certainly seems symptomatic of), and if not, to run some other labs to make sure we aren’t missing something. In case this is confusing – i’ll try to recap. I realize that many times on Kendall’s page, and even on the blog, I often skim over or just don’t address at all some of what she actually deals with every day. I don’t like focusing on her pain or all the things she can’t do or all the medical stuff she actually has to deal with every day. I realize that for some people, recounting every single medical procedure their child endures is part of how they deal with it – but for me, it’s just part of life. when I am forced to stop and list things out or analyze just how very much we are doing for our medically complex child at home, it breaks my heart a little. So i’d rather just keep my head down and barrel through. She endures it without complaining, so shouldn’t i too?
Anyways – she deals with a lot more than what most people know. Probably more than most people will ever know or understand. The things Ben and I have learned to do at home that are beyond “hospital level of care” sometimes shock me. It is just what we have to do, so we do it. And sometimes it shocks me a little bit when i realize that her day to day care is more than even what could be handled by our local hospital, or even the regular patient floor here most of the time.

But if you recall back to her last big hospitalization in October – she was having a lot of random pains that seemed to shift from her visceral organs (which was the focus of our investigations for a while) to her joints. She refused to bear weight on her left foot and we X-rayed it every which way looking for a break. It was very ankle-centered, but didn’t “look” bad so we just shrugged our shoulders. Then it was her hip. Then her other hip. Then her elbow. Then the other ankle. Then her shoulder. Then “just everywhere mommy”. It was nonstop but there was no “thing” we could pinpoint or say “ahhhh yes, this is why this hurts. We can fix it by doing that.” At the time she was still on the Dilaudid which would help the pains, and we were ok with that. And then she finally weaned down from the Dilaudid to just the Ketorlac (basically it’s like IV ibuprofen). And that helped keep things under control. She started two other meds for “pain control” so we started weaning down the Ketorlac in an attempt to keep her tummy happy (long term use of it can start to cause Gi bleeding). And as we were weaning that anti-inflammatory pain relieving medicine, this particular wrist issue started getting worse. Our default response is to kiss it, tell her she’s ok, and then otherwise leave it be. She is not a kid who gets babied a lot or has her every ache and pain attended to. We would literally be chasing our tails all day long!  “rub a little dirt on it” is basically the adage we parent by!
So after a couple days of consistent complaining and her starting to guard it more and not use it at all, we were a little suspicious. We gave her the Ketorlac and that seemed to keep the pain under control better, but we still had no idea what, if anything, was wrong. Monday morning she woke up and it was HUGEnormously swollen. At that point I started to suspect maybe she had a small hairline fracture somewhere so after a packed full Monday morning, we trudged to the ER.
The problem with a kid like Kendall is that you can’t just look at her and say “oh, well since it’s not THIS obvious thing, it must be nothing.” Her body is notorious for throwing out red herrings to have us chasing down one trail while really the problem lies somewhere else but her body doesn’t interpret or give “i’m in trouble” signals appropriately. And the thing is, the stakes are starting to get really high with what could go downhill if we guess wrong. Again, i think I kind of downplayed how very very desperately sick she actually was in September, but it was crazy. It was hard to watch. It is harder still to try to process through all of that and some of the baseline changes she has had and try to find a balance between wanting to break down and cry, and keeping a positive attitude that it’s hopefully just temporary setbacks.
And as a completely open and honest aside here – I can tell you that it absolutely slays me to have people telling me that. I know that most people who say things like that:”Well hopefully she bounces right back. It’s just temporary. She’ll be back to her old self in no time.” – I know you mean well. i know you say it from a place in your heart that wants to not think that bad things can really happen to kids/people you know. I know this because i know I have been guilty of saying it before. But sometimes, in the throes of the storm we have all come through over the past couple months – it doesn’t comfort me. It makes me want to lash out, actually. Because I have watched this kid fight like HELL to get through what she’s gotten through, and it’s been really really really scary the past couple weeks but i’ve had to hold it all together for everyone else, and for myself, and for Kendall. This fight took a lot out of her. And while yes, her spunky fighting spirit is still there, her body is still VERY tired and weaker than I even like to admit to myself. YES I hope she continues to improve from that. And hey, maybe this random joint stuff is even part of why she hasn’t fully regained her strength/endurance.  But unless you are currently walking in my size 9’s, you don’t know. And this little vent is truly not directed at anyone or anything that’s been said in particular. I’m not saying it to make anyone feel bad. I’m saying it because it’s part of my committment to being more open and authentic on my blog about how I feel going through this journey. And right now, today, this is how i feel.
my kid tried to die twice in the last two months and that sucks. It’s brutal on the spirit. No two ways around it.
BUT – I do realize that she did not die. And she is still here, fighting, kicking, being sassy.
she’s not doing that lightly. She’s doing it because she is amazing. And because God has a much bigger plan for this girl than any I could ever dream up. And when i hear things like the flippant “oh she’s on her way back. She’ll be fine soon! Etc. Et al..”, it makes me feel like that’s downplaying her amazing intense battle. That’s really what it comes down to I guess. I just want people to understand that this kid literally fights for every day of her life. and she does it awesomely. She makes it look easy. she does it with an attitude of joy that i could not even hope to have if I were in her shoes. But she does it.
So that’s what i focus on. It doesn’t mean I don’t still sometimes need to process through the scariness of what we’ve witnessed the past couple months. But I choose to put a positive face on, and look forward with hope, because that is how she lives her life.
I realize I’m just kind of ranting here and I hope you’ll forgive me for that – blame it on only getting four hours of sleep last night. But I just kind of wanted to get that out.

Please know that i’m not saying you can never say things like that to or around me. for the most part, you’ll get my standard response of smile and nod in agreement. Because of course i am the most staunch believer in my girl’s ability to “bounce back to herself in no time”. Of course I believe that and hope that and pray for that. But i’m also the one who sees the ups and downs, the throes of pain and the elations of success at accomplishing that baby step. I am the one who pours myself into making sure that she has more good days than bad, that someone stays a step or two ahead of the craziness of her little body, that while we all paddle furiously under the water, all you see is smooth feathers and floating on top of the water.

i’m so far off topic i’ve confused even myself…

anyways – that’s where we are today. Hoping for an easy answer, an easy fix, and possibly even getting home tonight if there’s no other red flags. Just a speed bump on the road to recovery. But it’s still the unknown. And at the end of the day, I’m the one who has to decide if I’m comfortable taking her home again with unknowns, and not knowing if she will continue to trend in the right direction, or if she will crash, and having no reserves, crash hard. I feel like sometimes that term is overused. It loses it’s meaning. I don’t mean that she will be lethargic and tired. I mean that her body will not even have enough of the right hormones available to keep her heart beating in rhythm, to keep her blood in her veins and arteries so her blood pressures remain stable, to make sure that oxygen is pumped efficiently to all of her important organs. These are the things that go wrong when Kendall crashes. It is scary and it is our very possible reality.
Taking her home requires that I have faith in a God who is bigger than my fears. It means surrendering to whatever might lie around the river bend. It means that as much as I try to retain control over every little last aspect of Kendall’s body via her labwork numbers and her vital signs and her trends in BP/HR, that i have to admit that I do not have control, and in fact, there is no such thing as control.

So….
We wait. Wait for MRI to be ready for us and wait for the contrast to be pumped by her heart through her veins and wait for the machine to take pictures between magnets and wait for the pictures to be interpreted and wait for answers and relief and a plan.

And even though it feels better to be here, in the safe walls where the medicines are and the machines are and the big ipad that tells me what her body is doing via labwork is, it is not really home. I miss my other babies and I miss the neverending laundry and the semblance of normal we were just starting to put together. I miss the semblance of normal our lives were a couple months ago.

But if you have to be stuck somewhere, this is a good place to be. My other babies are in good hands too. I am SO so glad that right before I got the call to head north, I had spent over an hour with Kaylen, having “Special mommy/kaylen time”. She thrives on that kind of thing, and I am so grateful I was able to pour attention and love into her for a little while before this trip.
Anyways – i’m not even really talking about anything anymore, just spewing out random thoughts as sentences.
I think maybe I need coffee. and some chocolate. I knew I should have grabbed that bag of halloween candy on my way out the door….

I’ll update Kendall’s page when I know more. And i’ll be backdating a couple posts here too. (You’ll probably have to click over to the actual blog and scroll down – they don’t auto-post to FB when I backdate them!)
And I think that’s about all I have to say about that today.

 

terra

#Nablopomo2014

So here I am again….staring down the face of 30 straight blog posts over the next 30 days.

Remember when I did it last year? And how i ended up having to cram in and backdate three posts in the last 45 minutes of November 30 to make it?
Yeah – I’m pretty sure it’s gonna be like that again.

As I look back on some of those posts – I see how we were in a somewhat similar position. Having recently brought a very sick Kendall home from a long harrowing stay in the PICU. Feeling like there was no rhyme or reason or schedule to our days, having so much of our lives in upheaval. Wanting to find a sense of order and continuity and clean up my desk….Wow. It’s like Groundhog Day here….

And yet time keeps marching on. Sure there are many things that are different – even different and improved from what seems at first glance to be so much similarity. But the things that aren’t different, the fact that I still keep dealing with the same issues over and over again….what is that? Is that me being stagnant? I hope not. But then why can’t i just get out of this rut of sameness? But in the next breath – I look at what our family has held up under and endured the past year, and I am proud of us. Sure my desk is still a hot mess of papers and various half-started craft projects, and my closet STILL hasn’t been cleaned out like I had planned to last November, and I continue to struggle with making bad eating choices and wanting to work out more….but we are all still here. We are all still keepin on, somehow. And really – we’ve done it pretty well in SPITE of my messy desk and closet. So who’s the real winner here???

Every new day is a chance to make it better. Every day we get life, it’s a chance to live it however we want to. So these are more the kind of things I want to focus on. The desk and the papers and the clothes – they will all eventually be taken care of. But the real stuff of living is in enjoying the time I have with my babies, my family. Time spent laughing together, making memories together, working together to make life awesome. Being real, and learning who we are. Who I am. Authenticity and Inspiration. This is what I would rather focus on this month.
That’s not to say that it’s all going to be the deep stuff, soul searching, gut-wrenching emotional stuff. But it is all going to be real. Authentic. Maybe even funny sometimes. Some of you have come up with some really awesome ideas to help get my creative juices flowing – you want my mascara video, more of my super awesome illustrations, you want to finally hear about the Make A Wish trip, my recipe for Hippie Juice…I can’t remember them all off the top of my head but I know there are some good ones!

Annnndddd here i am already five days behind so i’m going to go crank out some posts real quick!!!

Ready set go.

T

The Last.

the last post.

The last day of this month of challenges.

20131128_012839000_iOS As i haven’t exactly followed ANY of my self-imposed challenges to a T, I am not paying the price. It is late at night and i am still wrapping up the blogging – that’s exhibit A. The planking topped out around the middle of the month – and I still have not conquered a two minute plank. But I DID get stronger at it. When we started I was collapsing 4 seconds in to a 20 second plank. I am looking forward to picking that one back up again because it was such a simple part of my day – Kealey and I would do it together after she got home from school nearly every afternoon. So much of the issue is just getting into a rhythm/routine/set time of doing these things.

Which is my main problem with pretty much everything in life!

there is no rhythm or rhyme to ANY day of my life! We are all just go with the flow here!

Anyways – that’s another challenge for another month – getting into a schedule.

For this month – i was really and truly challenged – to do something, stick to it, finish it. And even though it may not have been by the exact letter of the law, I did it. I am proud of myself for just doing it.

But beyond that, I feel like i grew, in this stretching of myself. While I have not maybe written any earth shattering or award winning blog posts, I have had to work really hard to get out some of the posts I did. They challenged me to think harder, to keep writing things that normally I would have just kept inside and moved on over. I have connected with some of you via email, facebook comments, messages – beyond what I ever have before. That has been awesome. Another awesome thing? my blog “numbers” (how many people read this blog each day) have almost tripled. I guess there really is something to this whole “blog more often, the readers will come” thing.

I’ve learned a lot of awesome things this past month when it comes to myself, my blog, my writing material, my own strength. I am not positive I will be able to keep up the every day blogging in December, but as I look back over the GAPING holes in the months over the past year, I know I want to be better about it. I want to get more of the memories and details down. I love being able to look back on some of my older posts, and have those memories right at my fingertips. I love being able to connect with some of you through what I write. I love the platform i am able to have to continue spreading Kendall’s amazing story. I can only hope that as God sees fit, He allows it to continue to touch other people’s lives. I will keep telling it as long as i live.

And now – just 33 minutes late, I submit the last post for the last day of this month of blogging. I am glad I did it – and can’t wait to see what the next month brings.

Peace out party people –

T-crest Out.

Black friday fun.

No not that kind – the kind where you stand in line in the freezing cold for a good deal or two. (Although my sister and I DO have that kind of crazy fun every Black Friday!) I mean, the kind where my girls and I get the Christmas tree stuff out and put it all up to surprise daddy before he gets home from work!

And we did it!

After my all-nighter in the cold (which was super disappointing this year because there really wasn’t anything that was THAT great of a deal so all of that and I’m still mostly empty-handed in the shopping department!), Kealey Grace rallied the other girls to let me sleep in a little bit, brought up all the heavy and large bins full of tree stuff, and in true “mini-Ben” fashion, had the tree parts all laid out according to color (how our tree is set up).

20131129_224632000_iOS It was so fun to crank the Christmas music up loud, sing at the top of our lungs, put the tree together, smother it in lights and ornaments, and sit with our hot chocolate and admire our handiwork three hours later! It is a weird and new thing to have actual HELPERS at this time instead of trying to corral small bodies and take 39 diaper/feeding breaks. Times like this it hits me that I don’t have BABIES anymore, I have big grown up girls! When did this happen? When did I stop having to shop in the baby part of Target for clothes and instead try to find all matching outfits in the little girls area? When did they stop liking matching outfits? (Ok they haven’t. Or at least I refuse to believe this one yet!)

It is hitting me this year, this Christmas season, that our lives are changing. We are entering new territory – as parents, as kids, as a family. On the one hand I embrace it – I mean – I didn’t have to bring all those boxes up by myself, right? Holla!!! On the other, I’m not ready for this! i don’t have a baby to rock to sleep while patting it’s little diapered tushy, I don’t have a bunch of plastic toys created in China that someone HAS to have this year, I don’t have babies I have big girls! (Basically this post and it’s sentiments will probably be on steady repeat for the next fifteen years…)

So for now, we are soaking up every minute of this holiday season. Putting up the tree, trying to find the perfect wreath for the front door (this is seriously stressing me out, but i’ll put that in another post), trying to clear out some of my usual clutter so I can make it look more “christmasy” in the few areas of this house that I can actually decorate. Our elf “Snowflake” has begun to make her seasonal appearances, to observe on the behaviors of four certain little girls and report her findings back to Santa. We listen to Christmas music in the car, and we are anxiously awaiting the first REAL snowfall of the season to make it seem more Christmasy. Plans with our awesome extended family are starting to be made and it is most definitely beginning to look (or at least feel) a lot like Christmas around here!  I love this. The anticipation of this entire season – never knowing exactly how it will turn out or what magic will happen when you least expect it.

And that’s what I want to focus on this coming month  – the magic of Christmas, of the season, of the reason for the season, of just being together. I hope you’ll come along with us on this journey.  I want to post more pictures of the “stuff” of what this season means to me and our family.  (Again, i’m pretty sure I say this every year and it fizzles out by December 8th or so, but we will see. i’ve done better with this NaBloPoMo than I have in years past so…there’s always hope???)

So that’s our fun for today. Lots of togetherness. Admiring my beautiful baby girls who are not babies anymore. Making memories, laughing together, singing loud for all to hear and spreading Christmas cheer.  And now I have to go type up a few posts to backdate so – have fun on the old post scavenger hunt!

And then head on over to the Terra Talking FB page and tell me what your family does on Black Friday/the day 20131127_154338000_iOS after Thanksgiving/Nov 29 if you don’t live in the USA. Because it will be fun and stuff. Plus i like hearing from you!
hope you all had a beautiful wonderful holiday with your family and friends, celebrating and giving thanks however your family does!
Thanks for checking in here on our crazy family!

peace out party people.

terra.

Let’s Have Fun

I have six blog posts to write in the next seven hours.
How did I get this far behind? It seems like I have done a ton of writing… I guess maybe this past week it has been a little busy.
Also- I’m typing this with one finger on my phone. So, yeah, typos galore I’m sure.
So lets have fun- why that title?
I really am just copying random billboard signs as blog post titles so it doesn’t mean anything, but as I think about it, what I HOPE it comes to mean is “Let’s have fun this Christmas season!!!” I need to sit and plan some of our usual December Daily activities so that I can be prepared for them, remember to DO them, and then actually enjoy them while they are occurring.
Don’t worry I’m not talking anything too major, lest you think I’ve completely lost it! But just our fun, small, family traditions. Movies we watch, cookies we make, lights we go see.
I have a feeling that the next few weeks will be flying by, and it is looking like its going to be an absolute blast of a Christmas season! My entire family will be in town over the month of December and it is going to be NUTS!!! My sister lives not very far away from me, and my parents are in the area but farther north. My three brothers live in South Africa, Boston, and Seattle- so we very rarely get to see them and their beautiful families. Not only do we get to see them- we get to see all of them all together! I’m so excited I could just squeal!
Fun/crazy/idiotic times are ahead and I can’t wait!
I feel like Buddy the Elf with my list of fun things to do
“We can go ice skating, make snow angels, eat a whole roll of Tollhouse cookie dough, and then we will hold hands while we skip through the park.”
Speaking of that..

We need to Watch Elf. And Christmas Vacation, and A Christmas Story…

Ok once I get my whole December Daily list together I will put it up in an actual post! Come back and check it out and tell me what some of your traditions of the season are!

Ok off to finger peck five more posts…

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My girls.

you thought i’d miss a day, didn’t you? This is technically going to be “yesterday’s” post, even though it will show up today, and then today’s post will show up LATER today. confused yet? good. we all operate better under that assumption of craziness.
Yesterday I was just so busy…

One of the prompts for NaBloPoMo is to write about “a day in my life”….That would pretty much be a book so i’ll spare you the gory/overwhelming/boring/crazy details and just say – I was busy doing all the things I normally do to keep Atkinson General Faux-Hospital running and then I had to add in Parent Teacher conferences.
Kendall’s 15 minute conference turned into nearly two hours of IEP Re-evaluation planning with part of her awesome team from her school. But in spite of the fact that it took so long, it was awesome to feel like my concerns for her were being truly heard, and I think our IEP progress for Kendall will be so much smoother thanks to all that brainstorming.
Then we ran to therapy, then home, then I had to run and pick up the girls from my friends’ house where they had all gone because we were at therapy when they got out (early dismissal due to conferences), then home to get dance stuff together, then to dance, then to conferences. Then dinner, Kendall troubleshooting, cleanup, bedtime. Ehh – I guess that wasn’t so bad.
Anyways – we all survived.

Conferences for the middle two were a split. Karissa is currently in the middle of a re-evaluation for services at her school due to a MAJOR gap in her tested intelligence/cognitive level, and how she is performing at school (her grades). She is just such a non-verbal learner – symbols, patterns, numbers, choreography, movement – these things are how Karissa interprets the world around her. Everything is a dance. And words interrupt that dance. In her words “the letters squiggle”. She wears bifocals (progressive lenses), made in an effort to help her vision be as good as it can be for both near and far sight. We have identified a visual processing disorder (her brain doesn’t always interpret two-dimensional information – words on a piece of paper for instance – as one cohesive image), an auditory processing disorder (she cannot differentiate background noise from a dominant noise – for instance, if a teacher is talking while there is ANY kind of other noise going on in the classroom, papers rustling, pencils scratching, noses sniffing, etc.), and we believe there is a possible element of an ADHD like process at play too (executive functioning, the ability to prioritize and order tasks into a list to be done in order to complete something like homework, or getting dressed in the morning, etc).
All of this is making it very difficult for Karissa to perform to her best in a typical classroom setting. She is in the honors program at her school, but is quickly falling farther and farther behind compared to her peers because….well – we don’t know why. I am hopeful, but not optimistic, that her school is going to be able to help us identify WHY she is failing at school all of a sudden. I hope that someone is able to help turn the lightbulb back on in her mind and help us unlock all of her amazing mysteries residing in that crazy, cloud-filled, puppy-riddled world in her mind. I know there is SOMETHING, some piece of info out there, that we will be able to say – “Ah-ha! this is how we help Karissa! THIS is her problem, and THIS is the solution!”
To that end, a child with a less than stellar report card, a frustrated teacher overwhelmed with how to keep a child like Karissa at grade level, and my own worries for my child led to a less than productive conference for her. But still – I’m so proud of her for fighting through all that is stacked against her, for plugging away at homework that “squiggles”, for not letting any of her issues get her down.  she’s awesome.

Kaylen, however, the one i WAS worried about – sure her conference would be filled with stories of how she destroyed this, that or the other thing in her classroom, or other tales of the terror she can bring on at home – Blew me away.
Her teacher told us a story at the beginning of her conference that left me with tears in my eyes.
They were having a special day where all the students got to eat lunch in the classroom with their teacher. (I’m not sure how or why such a thing would be a “reward” for the teacher, God bless her, she’s an amazing person…I digress.) anyways – there was one little boy in the class who was sitting off on his own. My beautiful little social butterfly got up from her group of friends, took her lunch, and went and plopped herself down next to this boy. She told Mrs. Pullos – “I think he is lonely and needs someone to sit by him.”

Would I have done that? Would you?

Oh to be more like my beautiful Hurricane Kaylen…
(Later when I asked her about that situation, she said “yeah i think maybe he didn’t WANT anyone to sit by him. But it’s ok. I sat by him anyways.” That’s my girl!)

And then today was Kealey’s conference. Her school does this super trendy “self-directed” conference thing. It actually worked out very well for us – Kealey is such a good kid and it was so great to see her really digging into her work to look for areas where she excelled and areas where she could improve. Every single one of her teachers came to tell us that they were so impressed with her work ethic, her compassion for others, and her amazing persistence in doing her very best, all the time, no matter what. And my girl who works so so so hard to be my little helper, my mini-me, help me keep everything together when Ben is out of town – this girl on whose shoulders rests so much responsiblity, and grace, and grown-up-ness – this girl made the High Honor Roll.  I sat there listening to her read her self-assessments to us, looking at the beautiful young lady she is becoming – and I could not help but cry, just a little bit, just to myself.  How did we get here? How did my little Kealey Grace, my constant companion for all these years, the wriggly little crying baby who i brought home scared to death I was going to break her almost 12 years ago – how did that little baby grow into this vision of loveliness? Where did that time go?

So that is what I wanted to tell you about My Girls.

They are amazing and I love them and I am so so so proud of them. For all that I do wrong – THEY are what I do right. By the grace of God, my own amazing examples of parenting, a village of friends and family around to support us – by all of those things – my girls are amazing.

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Terra.

Thankfulness.

Maybe you have friends who are doing it too – taking the “thankfulness” challenge and posting something on facebook every day that they are thankful for. I think it’s a swell idea – and I love reading other peoples’ posts about what they are thankful for that day,  but it isn’t something I have thus far felt too compelled to do. Maybe i’m in too many other challenges this month, maybe i just like to buck all the trends. (For the record, i never tried to play the stupid giraffe riddle thing either.)

But probably it’s more because I try to live my life every day in a state of thankfulness. Maybe I need to be better about saying it – so i’ll try to capture a bit of my thankfulness in this post.

I am thankful for this life we live – craziness, insanity, sleepless nights, heartaches and all. I am thankful that the super scary times make me realize just how precious the good times are.  I am thankful for the people we have met because of this journey, this life we lead.
I am thankful for a vast network of amazing doctors, therapists, nurse practitioners and nurses, pharmacists, supply delivery people, lab techs – all who keep Kendall going so we can keep our family going. I am thankful for their trust in our ability to care for her at home. I am thankful for friends and family who are willing to come alongside our crazy lives and swoop in to save the day by picking up the other girls when Ben is on the road and I have to  be three hours away in milwaukee.  I am thankful for our car that even though it has autonomic dysfunction and blows the heat when I need the aircon, it gets us back and forth to the hospital safely. I am thankful for oh so many of you, and the many little and big things you do for our family, for me.

I am just so so thankful.

I hope i have told you all thank you enough.
For the amazing Krew that put on the 5K/Fall Fun Fest for Kendall – thank you. I will never be able to thank you all enough. For everyone who came that day, and ran, or helped, or donated, or bid on auction items – thank you.

For the Tacoma contingent that ran your own 5K on a blustery day – thank you. Thank you for loving our family from afar and for your continual love and support~

For all of the good things of life – big and small – I am thankful. I am always thankful – and I need to be better about vocalizing that thanks.

For the amazing staff at Versed Salon here in Plainfield – thank you – for the pampering you gave this tired, frazzled, gray-haired mama, and for the amazing amazing gift you are giving our family next week with the Cut-a-Thon for Kendall – thank you so much.   (side note – if you are local and you have hair and you need it cut anytime soon, please consider coming to this event! It is so amazing of this place to do this for our family and we are so grateful for their support!)

For even the tiredness, the late nights, the frustrations – I am grateful. oh how grateful I am that I am able to have a child to wake me up in the middle of the night, so grateful for the gray-hair inducing days of stress caused by her mind-boggling logistical supply & demand, so grateful that at the end of the day, all of that stress is rewarded with a warm-bodied hug and cuddle and “i love you momma”. I know far too many who would endure what others would complain about – if it meant having their child back in their arms.

So I am thankful. I have a heart bursting with thankfulness and i pray every day that I live in that thankfulness. I pray that those of you who need to know, know just how very much you are appreciated – by me, and my family.

For everything, everyone, every day – I am thankful.

 

thank you~

 

terra.

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