Recovery.

In case you had not seen the pictures on my or Kendall’s facebook pages – she has been extubated! Considering that I was not even in the mindset that she would need intubation this time, the weight that has been lifted by her breathing on her own and off of the presser support (no longer in septic shock) is huge. We as her family are SO very thankful for all of the prayers on our behalf and for the mercy of a loving God who has seen fit to allow us more time with our warrior princess.

This path of Kendall’s – the constant up/down swing of the pendulum of “health” – it is hard to explain unless you have lived it yourself. I have received many questions from some amazing new supporters (Kendall Krew we like to call you!) regarding why this or what does that mean and how does this affect that….it is hard to jump into the middle. And even for some of you who have been on this crazy ride with us since day one it is hard to keep up.

I titled today’s post recovery because it seems fitting. She is recovering from a horrific illness, but she is not “better”. She is recovering from the effects of the fungemic septic shock, which are many, but she is not back to 100%. And truthfully, she may not be for a long time. I am sitting here right now listening to the beep beep beep of her heartrate as it is monitored via the electrodes all over her body, and it is soooooo sloooooowwww.  Her heart is very tired. Even though she was ready for extubation and it was the right call – her body is still struggling to maintain enough energy for all of the demands on it. She is the compensation queen though – struggling here to compensate there and doing her best to just keep everything between the navigational beacons. None of her doctors really have a good explanation for me about this – it’s just one of those conversations that’s hard to have because the answers either aren’t there, or they aren’t easy to explain. Even though there is a very commonly held belief that Kendall’s main underlying diagnosis is mitochondrial disease, and because of that we know that her body does not make or sustain enough energy to operate all body systems efficiently – we do not have much more evidence past that. Because at the end of the day it really wouldn’t change anything. We cannot MAKE kendall’s gut work any more effectively than it does right now (which is really near nothing!) and we cannot MAKE her immune system function more properly.

I don’t really talk about Kendall having mito a whole lot – or at least – I don’t blame her day to day issues on mito. I accept that it is likely the reason we see what we see, but I spend much more time focusing on how to help her have the best day, week, month possible. I do not think in terms of years really. That is too much information to digest. most of the time I think in terms of chunks of hours. how can i make sure she is comfortable at school? how can i make sure she does well at therapy? if we want to go somewhere as a family on saturday that will tax her body, how can i start boosting it up on thursday to be able to handle that energy demand? Dwelling on the progressive nature of something like mito – it is overwhelming. It is too much. I don’t need to be reminded of the facts about this disease because we live it every day.
one of her doctors, the one who perhaps shoots straightest with me during these really rough times, told me the other day that kendall has had progression of her underlying disease, and that that is why her body went quicker into shock this time, and handled it much less efficiently in spite of the relatively good run of healthy months we have had. It wasn’t stated in any other way than just simple observed fact. But it was hard to swallow that. Because I know there is some truth to his words.

So we press on.

Kendall is doing well enough to talk about our plans toward home. Like I said – she is not “better” – but she will be out of the woods of needing life support, so we can handle things at home. If you have not ever taken a chronically ill child home from the hospital before – let me enlighten you a bit.
It is good, this going home. It means you are out of scary woods. you are still wandering around the edges of the woods – but you kind of know where you’re at. You will leave the “comfort” of the machines that beep out the vitals, the pharmacy down the hall with any and every med your child might need right there at your nurses fingertips,  the teams of doctors who make hard decisions so you don’t have to carry the weight of everything on your own shoulders, and you leave the amazing nurses who are at your child’s bedside 24/7 doing the overwhelming amount of medical care they need and dealing with the beeping pumps and the timing of meds round the clock.  These things will now rest solely on your shoulders.  If you are lucky, you have a nurse or two that can help once you get home, but they are not hospital nurses and they need to be updated on all the new conditions/symptoms/meds. This is not a quick five minute conversation. It wears you out to have to transfer information from doctors and nurses who work at a much faster pace than you to the nurses who work in the slower nicer pace of your home. But sometimes you don’t even have the nurses at home because they have all had to find other jobs while your child has been in the hospital. So you go home to do all the unpacking of medical supplies, and inventory the things that need to be ordered in your absence. You set up the chart of meds that will hang in multiple places around your house so you don’t forget an important medication in the flow of regular medications. You set the alarms on your phone as a second reminder, including the brutally painful 2am and 4 am ones. And unlike the hospital where everything has it’s own pump and requires only a quick change of syringe and pressing run – you have to set up new med lines and reprogram pumps and find a place for them to go because your home IV pole doesn’t have enough places for extra pumps.
You will now be the one sitting bedside watching the numbers on the monitor and hoping your home equipment isn’t lying to you about numbers and have to make your own decisions about what is “ok” and what might mean that things still aren’t hunky-dory and you will have to weigh in your mind if this is ok to leave overnight or do you need to wake up the other three kids and take them to someone’s house at 2 am so you can take the sick one back to the ER and await transport again to the hospital three hours away? you have to juggle all of the balls of this decision and play a really fun game called “risk/benefit ratio”. Is the risk of ignoring this greater than the benefit of addressing it and dealing with all of the other logistics required to address it?
You will be in your own house – able to do your laundry without being worried that someone else will steal something or will stop your load mid-cycle and set your wet clothes in a random place in the family waiting room. You will be able to sleep in your own bed that isn’t made up of vinyl covered boxes, but you will still need to give so much medical attention that you will hardly get to see it. You will get to shower in your own glorious shower with a shower head that sprays from above your head and with enough pressure to actually wash your body vs the elbow height dribbling of the family room shower. But this shower will need to be timed well between meds on the chart and alarms on your phone.
You will be home, with a child who has survived another life-threatening septic episode, and you will be grateful. So very grateful. You will perhaps grumble a litle to yourself under your breath as you are picking up the 38 milion polly pockets she had left laying around the day before she got sick, but you will catch yourself because you realize that soon enough she will be making that mess again and for that you are SO thankful.  You will try not to think about “next time”, and you will try not to think about what this time has taken out of her. you will focus on the here and now and getting through the next couple hours.  That is all you can do. So you do it as well as you can. Knowing all too well that “next time” will likely hit you out of the blue on a random sunny tuesday morning and you will start the cycle all over again.

This is what it is like this week.
You will see the pictures of Kendall tucked into the car. You will rejoice with us that she is making it HOME. home being such a beautiful word.
And you will rest easy that she has made it. She has survived.

I will be doing the same.
But please don’t stop the prayers then. I will need them more than ever once we get home. I will be going home this week (we hope!) with less than ideal central access for Kendall (we have to place a picc which rarely works for more than a week or so), with no nursing, and no husband (he left for his business trip today after postponing it last week). I have done it before and I will do it again – but I cannot do it alone. I can do ANYTHING and EVERYTHING through the supernatural strength that can only come from God taking pity on my soul and boosting my spirit when I need it the most. 
So this is how recovery will be. We will do our best to get miss kendall all tanked back up, get her legs working again, get her strong enough to go back to school if we ever get a nurse staffed at our house/school.
She will recover, and we will go back to living life. For this – we cannot thank you enough for your prayers and love and support.

We will keep on keepin on, because that’s how we roll around here.

terra.

Peace.

Have you ever had one of those times that didn’t SEEM like it was as hard as it was until after you were through it? And then in the absence of the hardness you realize that it was actually really fricking hard and it sucked?

That is me today, regarding yesterday.

Having to have a conversation with Kendall’s doctor about how we felt like she was looking, and admitting that she was not doing as well as we had hoped, that was hard. It was hard to know she was REALLY sick and was REALLY in pain/discomfort and there was absolutely NOTHING we could do to make it better. It was hard to not know what was making her so sick and if we were doing the right thing to try to help her. It was hard to have the intubation team gathered outside of Kendall’s room waiting for her to hopefully not crash while we tried to beg the OR (Operating Room) schedulers to clear a room for Kendall NOW. It was hard to be functional on absolutely zero sleep from spending the night at her bedside helping her deal with the nonstop vomiting and shaking from the fevers.

It was just really really hard.

It was still hard even after the decisions had been made. Even after the OR team came to take her down to surgery, and the consents had been signed and the carefully crafted plan written out and gone over with each team member….It was hard to leave her at the door of the OR suite and lean down and kiss her goodbye. It was hard to know that she would not be awake when she came back to us. It was hard to think about the battle that lay before her and the surgeon with her body in such a sick compromised state. It was hard to not think about “the last time” we had signed her over for this surgery, and the utter chaos that ensued after it had happened.

It was hard when she came back to the room last night, and there were teams of people on either side of her bed and at the foot and head of her bed, all working in a carefully choreographed dance of tubes, wires, pumps, medicines to hook her up to the ventilator, to the room monitors, to the meds that are keeping her heart pumping and her veins strong and the fluid in the right place and fighting the bugs. It was really really hard to be in here. I clutched the back of the chair until I heard the team lead call out the orders indicating that she was fully switched over to the PICU and no longer the OR team’s and then i ran from the room. I hate that i do not have the strength to stay in there and watch her at those times. But the emotions were threatening to overwhelm me and I try to never ever ever cry in her room, I keep it as a place of peace and happiness as much as possible. I ran down that hallway and i found the secluded bathroom and i shut the door and i slid down the wall and i felt the cool tile and i tried to just breathe…breathe. In and out. focus.

And when I had gathered up enough strength to come back, I walked back down the hall to where the controlled chaos was still going on and I stood just outside of her room, watching these amazing people who know exactly what each line is for and where it goes and how to order meds in just the right doses to keep a very crazy and unpredictable kid in a happy place. And one of the other nurses comes up behind me and grabs my hand and puts into it a pile of candy. She told me it was from another mom down the hall, another very strong momma who i am blessed to know, whose daughter is also here battling some nasty bugs with a body that is broken more often than not. And then that nurse pulled me into a hug, and whispered into my ear that kendall was gonna be ok. And that miss M (the other warrior princess) was gonna be ok, and that our girls were fighters. And I just leaned into her arms and let her hold me up for a minute.

These are glimpses into what life is like up here in the alternative universe known as the PICU. Food and candy and hugs – these are all we have to show our thanks as the parents of the babies who these amazing people work so hard every day to save. Our nurse the last couple days – she sat on the trashcan at Kendall’s bedside for almost three straight hours yesterday. Knowing in the way that only the best seasoned nurses know things that something was desperately wrong with Kendall – and working in the way that is unique to her to let anyone and everyone know that it was NOT ok to keep letting kendall suffer. The doctor who she complained to the loudest is the one who has saved kendall’s life a couple of times, and knows enough to know that something WAS going very wrong with kendall but she wasn’t making it clear to us exactly what that was. He sat in the hallway with us and had an agonizing conversation with us about having to intubate her. Earlier that morning we had a parade of nurses popping their heads in as they got off shift just to say hi and tell kendall to be strong. It is so hard to explain to you how this is just our family here.  I am strong here when i need to be only because the burden of Kendall’s care no longer rests squarely on my shoulders. I have so many amazing smart people who come alongside me and help lift that burden and they do it so very well….
there is not enough good things I can say about them all. Every single one.
they know when to come make you laugh and they know when to put their arm around you and ask if you’re doing as ok as you’re trying to act like you’re doing.

this is disjointed and probably makes very little sense. I am tired. I am emotional.
But i am thankful.

today has been calm, and that is the best possible scenario. Kendall’s body is still fighting a very good fight. She is initiating breaths over the vent and the vent settings are not very high. These are good signs. But she is still battling fevers between 102 and 104 degrees, and with every spike her body destabilizes a little bit. Because of her amazing nurse today we have been able to get back on top of these momentary losses, but she is still fighting a very tough battle.
tonight we hope she makes more baby steps in the right direction. we pray that God continues to hold her through this journey.

i have so much more i want to say but i’m kind of out of words right now.

t.

life is like a river.

That Garth Brooks….he sure knows what he’s talking about. “life is like a river, ever changin as it goes, and a dreamer’s just a vessel that much follow where it goes. Trying to learn from what’s behind, and never knowing what’s in store makes each day a constant battle just to stay between the shores….”

This is where we are at this morning.

Kendall Quinn crashed hard yesterday morning. I had to pick her up from school where her very shaken nurse, principal and vice principal were sitting with her in the office, knowing she was obviously sick but feeling helpless to do anything about it. Off we flew to the local ER where we were blessed enough to get a doctor who actually followed her protocol and got things moving quickly to help get Kendall more comfortable.

For those who have been down this road with us before, you know how it goes a little bit.

These times are rough.

Kendall spikes a high fever, and for our best guesses, we assume she has “gone septic”. Bugs, the kind that live in your gut and help digest your food and help keep you healthy, have once again leaked out of her gut and into her bloodstream and set up a party on her central line in her heart. She gets a blood infection and it rages…And oh the toll those battles take on her little body.

The fever, the rigors (intense shivers), the nausea, the vomiting, the headache, the feeling of your blood pressure skyrocketing then plummeting in an attempt to find happy medium….it makes ME feel horrible just writing it out and it is not even me who is feeling those things. It is my baby. My beautiful strong warrior child…

Oh how i wish I could take this battle from her. I wish it was me feeling those things, not sitting here helplessly by her side watching as her body fights with all it has.

But she is here now, in the best possible place for her to fight, our home away from home on West5. The unit. the Pediatric Intensive Care unit. Where the nurses know what she needs almost before her body knows she needs it. Where we have had a nurse standing at her bedside almost nonstop since the transport team of blue angels transferred her to this bed. Where we have a dedicated pharmacist and lab technician right outside the door trying to help us do anything and everything to keep her body stable, comfortable, give it the tools it needs to FIGHT.

And fight she is.

It has been a rough night. Her heart is beating very fast in an attempt to keep blood and oxygen pumping through her system and in response to the elevated temperature caused by the infection. We are burning through our options to help relieve the discomfort from her high temp and are awaiting right now an approval for round the clock dosing of IV tylenol. It seems like this should be a no-brainer, but it is not. The medication is in short supply and costs a fortune. It is right now the only thing left that is working, and even then, is only buying us an hour or so of “calm”. Then she goes right back into a shaking fit, moaning, gasping for breath, eyes closed but not sleeping…..the hard times.

Her labs are a mess, her vitals are all over the place, and we have no direction or answers as of yet. I know that this is part of this journey and yet I am impatient. I want to know we are doing something RIGHT for her little body, but everything we do right now is causing other chain reactions. It is a necessary evil, but one that is hard to deal with.

Sleep was not in high supply here last night for anyone.  She has hallucinations when the fever is spiking. Hearing her have these nearly lucid conversations that are meaningless is both hilarious and heartbreaking. Yesterday she actually had an argument with herself: “I got it – no IIIII got it!!!! That’s mine! It is not yours!! it is MINE! I had it first! I had it first!!!” And then late last night she had a conversation with daddy about his car being in “down-down shicago”.

I usually know more by this point. Today I know only that she is fighting, and fighting hard. I am hopeful and optimistic that she will make a turn for the better today – but I do not know this for a fact.

I do know that she is very sick.

i know that K2 and K3 were in her classroom with her when she crashed, and that they carried with them all day the burden of knowing she was going to the hospital. I know that Karissa, she of Cloud Gathering fame, asked me on the phone last night if kendall needed the paralytics yet or if she was still breathing on her own. Kaylen told me she felt sad and nervous all day but didn’t want to cry so she didn’t say anything to her teacher. Kealey had no clue anything was going on but came home to an empty house after school. Ben is supposed to leave this morning for a two week trip to California for work. My parents will need to arrange their schedules for the next few days to stay with the big girls and get them off to school. These are the balls I am juggling. And i want to make it better for everyone and I cannot do that. I cannot FIX anything right now and it makes me feel horrible.

so many of you read the updates and you offer to help us and you tell me to tell you what I need, what we need, how you can help. And really – it is so hard to know what to say in times like this. Because I feel like a broken record! We need your prayers – first and foremost and most importantly. God knows what we need even if you feel like you aren’t even sure what you are praying for….Knowing that so many of you are sharing Kendall’s story and reading her updates and are lifting our family up with your prayers – this helps in ways that are immense and hard for me to help you understand. To feel undergirded by the support of so many friends and family and even virtual strangers – it is an amazing feeling.  To those of you here in Milwaukee who offer to help – food. I do not eat well during these times. Especially when I leave the house with no cash. I am so thankful to our amazing nurse/friend who brought me a jar of nutella, some nilla wafers and some cokes late last night. That was supper and it will be breakfast. I am not good about texting and asking for help, or for people to go out of their ways to bring food to this hospital int he middle of construction hell. But having food here at the hospital is something I do not take for granted and if you are so inclined, please feel free to bring me anything! I do not turn food down. Ever. We are in room 512 and if you don’t want to battle the parking garage nightmare things can always be left at the front main desk for our room/Kendall’s name. Gas cards are another constant need.

But mostly – we just need your love, support, prayers. Sharing Kendall’s page with your facebook friends and family is such a boost to our spirits to see people from all over praying for our sweet girl, for our family. Your messages of love and support to me via text, messages, emails – these all help me in ways I cannot describe to you. I am not always able to respond – but please know i am at some point reading them all.

I will continue to update Kendall’s page with any information I do receive.

Sorry this post is kind of all over the place….not a whole lot of coherent thoughts are being formed right now.

Thank you for being on this journey with us – it is so comforting to know we are never alone.

 

keep on keepin on~

terra.

a Kendall quinn update.

I haven’t done a good Kendall update here in a while.

Things overall have been fabulous. As fabulous as things get in our world I guess! Stable. Maybe that’s a better word. Very stable. She’s pulled a few kendallisms over the summer, but we were relatively prepared for them and were able to handle them with what is in our home arsenal.

She started kindergarten in august. Why our schools start in the middle of frigging summer I do not understand. But anyways – she made it!

Except for one small problem…

well two actually.

the first issue, that some of you who saw my facebook posts may remember, is that we didn’t have the “official” health form completed for Kendall. Now to get into the absolute redonkulousness of this issue will probably just raise my blood pressure – but suffice it to say that i was NOT happy when i received a phone call telling me they were going to “forcibly remove kendall from educational services and leave her in the office until the form is turned in”. yeah. no. You don’t get to forcibly do ANYTHING to my child….momma bear mode:ENGAGED.

but I remained calm. And in spite of the fact that the school has an easily one inch thick medical history on my child, we called her doctors and they were able to fill out THE form that assures them that kendall is not at risk for lead based paint poisoning and that she won’t keel over from diabetic shock. (No i’m not kidding. those were the two main issues they needed to have verification on. Bureaucracy gives me a headache. and possibly makes me want to eat lead based paint chips.)

So we resolved THAT issue only to discover that we will be losing our nurse who attends school with kendall on tuesdays and thursdays, leaving us with a grand total of ONE day every week that kendall gets to go to school! UGH – so frustrating. it’s always something…

And yes we have considered multiple other options.

the school (and we her parents agree) wants kendall to have a full time 1-on-1 nurse in the classroom with her. She has far too much going on to just kind of leave her to own devices. But the school does not have a contract set up with a nursing agency. So what has been happening is that we just send our home nurse with kendall. This is a good intermediate fix – but it means her school hours are cutting into the small allotment of nursing hours we are allowed for HOME use. I know – it’s confusing to even me sometimes. Basically – it’s been a survival mechanism for the past year – but now things HAVE to change. No – another agency won’t just be able to have a nurse ready and up to speed any quicker. Either way – we are looking at a couple weeks of training, interviewing, assessing skills….honestly most days i just can’t even think about it because it overwhelms me so much.

It is just that sense that there is ALWAYS so much to stay on top of with Kendall’s care – even when things are going FABULOUS – it is hard to explain it to people. I know i make it look easy. I am GLAD that she is doing so well that it’s hard to see what takes up so much time. I am SO grateful that she is doing well enough to be home. But some weeks that doesn’t make it any easier to deal with the constant attention her care requires. And i don’t mean just her hands on medical care – it’s the supplies, the nursing, the administration, the appointments, the therapy……it is just a lot. And now with school stuff on top of it, it is really wearing me thin to keep up and on top of everything.

but i’m keeping on. I’ll get organized some day. Some day there will be a whole week without any major hiccups that threaten to upturn the entire schedule!

Other than all of THAT hullaballoo….things are good! We are SO very grateful for her good health this year. I still credit the IVIG with a large part of why she is doing so well. It allows her body to be able to fight off the bugs, keep the bacteria at bay. We celebrated her broviac’s “birthday” in august. In fact I believe today marks 13 months with the same line in. This is absolutely astounding for the translocation queen! So yeah – truckin along here.

No huge speed bumps, just staying the course and trying to get her to still learn how to SIT STILL in school for more than three seconds at a time! It’s a challenge.

_____________________________________________________________________________________

And because life has changed so drastically in the 24 hours since I’ve written this, i’m going to post it now and do the update to the update.

i look at these words i wrote, less than 24 hours before she crashed, and i have chills.

this is what life is like with kendall.

the other shoe is ALWAYS waiting to drop. You just never know when.

so you either live in fear of it, or you live in spite OF it.
you learn to appreciate the calm days for what they are – because the next day your whole life could be upside down, and no amount of planning can ever prepare you for something like that.

Sometimes you wanna go

Where everybody knows your name…

(sing along with me)

And they’re always glad you came. you wanna be where people know your troubles are all the same

you wanna go where everybody knows your name.

This song is stuck in my head this morning for a few reasons. Chief among them that sometimes it is nice to just get away for a break. I was able to do that this weekend. It wasn’t long – right around 24 hours. But it was being able to be out of my usual routine that was the necessary and wonderful. It started with a friend saying she just needed to take a road trip and within an hour and a half we were on our way. It was just the kind of spontaneous thing I had needed. The music blasting, singing along at the top of our lungs, talking about anything and everything under the sun, getting dressed up to go people watch out on the town. Sleeping IN!!!! Not hearing beeping pumps and monitors all night. Almost 24 hours without ONCE being asked for a snack!

Please don’t get me wrong – I love being a mom. I love my little crazies even if they do have a serious snack addiction and feel the need to bug me about it nonstop. But everyone needs a break. Everyone needs to have a little “reset”, where you get out of the rut of the everyday and do something different. I think stay at home moms are probably chief among those who need such a thing. It’s a job you never get to leave. Being a mom of a medically complex kiddo compounds that issue. I literally never get to “leave the office”. These little breaks are my “vacation days” or “weekend”. It’s not always practical. I am rarely able to actually plan such a thing. But every once in a while, stars align and chances fall in your lap and you just go for it. So that’s what I did. It was good. I’m so grateful that Ben understood, even if it went fully against his type A plan it out to the detail I can’t believe you’re going to just go on a roadtrip with no notice personality, that this kind of “adventure” is the kind of thing that re-energizes me.

It had been a stressful week. In spite of our best efforts to manage our budget and allow for it – we had to pull the girls from dance. I was heartbroken at having to break their hearts. They handled it the way they have learned to handle so many other disappointments in their life – stoically. There were tears shed, but no fits. no screams of why. No fit throwing. And that broke my heart even more. Kendall’s needs have always taken front and center in the family – and as much as I try to offset that by trying to spend time on each of them individually and make it up to them whenever I can spare a few dollars for a movie or a trip to Chuck e Cheese, they know that there is never enough money to go around.  Ben’s job is good, we are so very grateful for it. And as much as I try to do things here and there from home, there is just no way right now that I can go get a job that will bring in the kind of income we need to help raise a family of 4 kids plus kendall’s medical stuff. We make barely too much to qualify for help beyond her medicaid waiver, but not enough to cover the gap left between paying our insurance deductibles and the waiver kicking in. I’m not going to get into money stuff – but this is part of the “negativity” that I briefly touched on – the judgement of why we do or don’t do this or that, or what we can or can’t afford. The bottom line is that we would not have survived without the generosity of our friends and family and the Kendall Krew fundraisers that have so graciously been provided the last couple of years.  Please hear me that i am in no way trying to beg for money here. I’m simply addressing the fact that we are having to make some serious budget cuts, and dance is the current casualty (along with other boring household stuff).

Having the girls lose dance is just one more thing that they’ve had to sacrifice being the siblings of a special needs child. It was something I always tried to provide them because it was their one place to “get away” from the sometimes chaotic place home can be with kendall’s stuff. It was their place to be themselves, to be known simply as Kealey and Karissa, and not “Kendall’s sister”.  The spotlight was literally on them for a few minutes. I wanted that for them. i wanted them to know and feel as amazing and special as they each are. And I know, I do know, that they don’t need to be in dance to feel that. But it WAS that for them, and it just….i’m just sad they can’t have that. I feel like a little bit of a failure that i can’t somehow figure this out and make a way to do something to make enough money on my own to offset our budgetary deficit. I know that Kendall’s care requires my constant attention. I know that there is no real practical way that right now i can go get a job out of the house. But i feel helpless. And sad. Don’t worry. i’ll be fine. the girls will be fine. It’s just how things are right now, today.

so the break was good. getting away was just the thing I needed. (and not that I think 99% of you will care, but to explain to the 1% of people who will question this – part of why the stars aligned was that my amazing friend had prepaid for basically everything on the trip, so my going did not preclude making a dance payment or anything.)

But today is a new day. The start of a new month. The heralding of a new season even.

So we will look onward and upward. We will keep on keepin’ on. Things will work out the way they are supposed to, of this I have no doubt. I know there is a reason for everything, and I have faith that this set of circumstances will have a fabulous ending in spite of my current feelings.  I’m actually very excited about what September holds! I think it’s going to be an interesting month, but I am honestly inspired by the start of a new month, and while i am usually SO SO SO SAD to see summer go (I’m not one of those people whose all “ yay! fall! pumpkins! sweaters!” – i’m the one in the back going “yeah……not so much a fan of the cold weather that is about to smack us all upside the head…can i have the heat back???”), there is nothing like a new season to help kickstart motivation. At least in my generally unmotivated booty. 

I can’t wait to be able to share it all on here again.

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It might be time to wrap up this blog post. I am getting lost deep in the smarminess of late 80’s love songs as linked to by youtube when i was finding the cheers theme song. St Elmo’s fire and tootsie love themes anyone?!?!? oh my gosh…they don’t make ‘em like that anymore. (does that make me sound old? I don’t care. I’m about to start karaoke’ing in the tv room. embarassing children and making ben roll his eyes.) At least my mommy would be proud. And join me in singing along.

OH MY GOSH PETER CETERA!!!!!!!!

 

ok i’m going.

tell me your favorite 80’s cheesy movie love theme song! Better yet – link it so i can make an awesome playlist!

I’m seriously giddy!!!

Peace out party people.

T-crest.

I’m back.

Did you miss me?

I missed me.

I missed here.

I am not even sure what the blog looks like anymore really. I should probably fix that.

To explain why it’s been so long since i’ve blogged would probably break the interwebs with the length of post it would take. And really, it wasn’t any one thing or reason in particular. It is a mixture of things, tossed in with timing, priorities, all that kind of stuff. I am sure part of it will come out in time.

But I started thinking – Why is it i started blogging in the first place? What is this blog for?

And I think the answer is to tell our story, to tell my story. To record memories. To interact with friends, family, the world at large.

And a part of what happened is that some people started turning those stories against me. Things I say or things I would talk about were being discussed by people who had no right to dissect my words. I was too emotional or I used too many swear words or i didn’t say this right or such and such made so and so look bad. I was being given all these boundaries within which my writing was supposed to fit – and it made me tired.

I realized though – over the past few months of having my thoughts only rolling around in my own mind and not being able to put them here in my own little space – that

Life Is Messy.

It is not always full of sunshine and roses and it will not always make everyone happy to hear about the stormy times, the cloudy days and the flowerless paths that sometimes get wandered down.

Sometimes I don’t always make the smart choice. Sometimes I don’t even make the right choice.

But they are my choices. I make them and I live with them and sometimes I write about them.

And always, I live with them.20140514_160024400_iOS

So this is my life.

This is my family and these are my people and these are the choices we make in any given day.

This is what I want to remember –t he stuff of life. The ups, and the downs.  These are our days, and these are our stories. My life today, my life yesterday, and what I hope life looks like in all my tomorrows.

Sometimes I will tell you what’s going on with Kendall – and that is just what it is. my view on how kendall is doing. It is not medical fact. It is just a tired mom trying to make sense of a medically complicated kiddo who wants desperately to keep up with her sisters but whose body doesn’t always cooperate with that.

Sometimes I might just write about how much I am currently in love with a mint/coral/gold color scheme and that will be all that is. Pure fluff. But it’s what might be on my mind.

colors Always I will share the things that make me laugh. My kids are hysterical sometimes, yo. I am in love with watching them grow up and develop their own personalities. Somedays i feel like i’ve been in this fog of motherhood – survival mode – and i’m just realizing how truly amazing my little humans are.

I have a lot of thoughts most days. And I hate feeling like I have to censor myself sometimes, for fear of what people might think. I’m tired of feeling like that. It’s exhausting and not life-giving at all.

So i’ve been going through some stuff and i’m ready to get back here, to one of my favorite places in the whole world, my blog. It’s been kind of lonely without it. I miss the interactions I have with some of you. I especially miss knowing when i’ve made you laugh!

And I think that’s about all I have to say about that for today.

I need to update on back to school. I did at least take first day pictures, even if i didn’t plaster it all over my facebook or here on the blog. And of course, there are multiple issues and complications with kendall starting school. Leave it to that one to turn back to school into a full time job for me. Speaking of jobs – I need one – SOON! Badly. No i’m not sure when or how i’ll fit this in but i’ve gotta do something.  too bad nobody wants to pay me thousands of dollars to blog! Or pin stuff. Or make brownies. I am VERY VERY VERY GOOD at those things.

I have a vlog coming soon too. Don’t be too excited. It’s about mascara. Because i kind of have a closet mascara addiction.

So what’s new with you? talk to me!!! i missed you all – and now i’m back. So grab some coffee and pull up a chair.

Thanks for coming back to see me!!!

love –

 

me.

Thirty Eight.

I turned 38 an hour ago.

Happy Birthday to me!

And I figured today was a good day to blog again.

It’s been a grip of time. I’ve been busy. I’ve been doing stuff. I’ve been thinking about stuff.

It isn’t that I didn’t want to write about some things – it was just….sometimes it’s hard to find the right words. And if I guard anything in this life fiercely (besides my beautiful baby girls), it’s my words. I hate letting people read even my grocery lists. I don’t know why. It is hard to put my heart into words and then put those words out into the world wide web.

But I have realized that on some level – this is just who i am. This is me. Good bad and ugly. Boring as heck or tear-jerkingly awesome – and everything in between – what you see is what you get. Me.20140517_034306299_iOS

So here I am on my birthday, reflecting on where i’ve been, and more importantly, where i’m going.

37 was a kind of crazy year. I look back on my birthday last year….and I would have never guessed that just a few short weeks later my life would be in such upheaval. You never really know what’s just around the river bend. (yes that’s a quote from my favorite disney princess movie.) So the best option is just to push off the shoreline and start swimming.

My wishes this year are for more love, more peace, more strength. I cannot possibly flesh those all out tonight – but i am sure that they will become more evident as the days keep coming. They are not all just intrinsic, or things i wish upon myself. They have a very extrinsic component – meaning they are things i wish to spread with those around me. There’s really so much more to it….but it’s really hard to put into words at 1 am. Still, I wanted to get it out a little bit tonight, while it was fresh on my mind.

I don’t know what this year ahead will hold – but I know I am ready to accept it all with open arms. Accept the bad times, because through them I grow. Accept the good times, because they make me thankful for my many blessings. Accept the in between times because they serve a purpose too. I’m excited for this year!
I thought I was dreading this birthday a little – I don’t know why…the number just seems so face-numbingly OLD. But I have realized that actually i’m excited. I have lived every single second of these 38 years, and I plan on doing the same in this year to come. I cannot wait to see what it holds!

I am so blessed to call so many of you friends – even more blessed to call some of you my family. Thank you for being along on this crazy ride. Thank you for holding me up in the bad times and for laughing with me through the good ones. When i look back on the last 37 years, YOU are the reason I can laugh, shake my head, smile fondly, and thank the good lord that I am still here today! In case you didn’t have time to go get me a birthday present – i’ll forgive you! instead, leave me a comment here telling me your favorite memory of us, however I know you! That would make me deliriously happy! Or send noodles. I am kind of hungry for like a good noodle casserole right now but I don’t know how to make one….
So yes – noodles or memories. your pick.

Anyways – I’m going to go sleep now so I can stay up for my fireworks tomorrow night!

Happy 4th of July, friends!

Keep on Keepin on~

 

Terra.

One year.

Last year, on this Saturday night, I put a very cranky Kendall to bed. I had an extremely uneasy feeling about her attitude – just completely out of sorts after a very long day out in the hot sun – but we were headed to my favorite restaurant with some of my favorite people. So I put those fears aside, tried to enjoy dinner, and turned a blind eye to the storm on it’s way over the horizon.

The next morning she woke up screaming and that screaming continued until that night, when it abruptly stopped.

One year ago tomorrow (monday is the actual DATE, but it was a sunday when she crashed, I will remember it forever.) – our lives changed. This date, this anniversary of awfulness, it still holds some power over me. I never allowed myself to grieve this loss of innocence I had over Kendall’s “disease process”, and I never let the tears flow and I never let myself really process that terrible night/week. I shoved it down and i buried it and I never let it come up for air.IMG_0860

As this date has approached, I have felt those un-dealt-with feelings coming closer and closer to the surface. i have felt myself get inexplicably bitter at “cinco de mayo” commercials or references, I have felt anxiety-laden “panic attack” type chest pains, I have had those thoughts interrupting my normal every day functioning, demanding to be dealt with, and I have pushed them down time and again.

But I think it is time to deal with them. To let them come up to the surface, and to take their power of negativity away. It is time to let the bad feelings go, and replace them instead with feelings of celebration and pride for all that Kendall DID successfully fight through last May. Turn them into a celebration instead of something to dread.

Because the truth of the matter is – she IS here this cinco de mayo. What happened last year is in the past – and we can only focus on and look forward to the future. And right now, that future is so bright and amazing. She has fought through so many battles…

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she is a warrior princess.

She is my inspiration.

She is alive, and fighting, and amazing and beautiful and i love her with my whole being. I am so honored and blessed to be her momma.

to be all of my babies’ momma.

Life is good.

So here’s to celebrations, and triumphs, and good memories that make you smile.

Here’s to letting go of the power that fear can hold over you, letting go of the weight of carrying around buried feelings, letting go of the bad, and choosing instead to focus on the good.

Choosing.

It does not come easily. It is a nearly palpable feeling I have of literally picking up and setting aside a heavy jar of bad feelings, and turning instead to a beautiful jar full of good feelings and memories. It requires action, movement, motion, energy. It requires me to move from a place of comfort to a place of newness.

but I will choose joy, life, hope.

I will choose these any day over the heaviness of carrying around the buried bad feelings.

I am learning to choose the right choice, even if it’s not the easy choice.

So this cinco de mayo – we will celebrate life. we will celebrate an amazing warrior who has captured the hearts of so many with her sheer determination and bravery in the face of seemingly insurmountable odds. We will laugh at her crazy antics and will cherish even the challenging moments. I will tuck her into bed in her own bed and I will memorize the feel of the softness of her cheeks and i will place my hand upon her chest rising and falling on it’s own and i will marvel at the wonder of such a simple miracle. I will crawl under her bed to rescue her stupid nee-nee’s and I will turn on her Ariel music box without her having to ask and i will choose to spend the hour prepping her meds and tpn and feeds in JOY that I get to do all that work because it means she is here and alive and well. I will hug all my babies tighter and longer and be grateful that their little spirits are as resilient as the thickest rubber band, allowing them to bounce back from all life has thrown at them in their young ages.

I will CHOOSE to live life with the awe that this amazing journey demands.

Life is awesome.

Don’t ever forget that.

“It’s a cruel, crazy beautiful world

Every day you wake up I hope it’s to blue blue skies.”

– Johnny Clegg

 

Call me May-be.

See what i did there?

MAY-be???

So here we are. The first day of May – a month of blogging randomness lies ahead of us, and i have no idea where to begin. I know you’re all waiting on the Make A Wish updates – and I promise they are coming! But they take a lot of formatting prepwork with the pics and stuff, plus I want to have them all ready to go before I post them.

But maybe today I’ll post a few preview pics since I have about eleventy derfteen of them and will probably crash the interwebs trying to post them all somewhere.

In planning out what I want to post about on different days (every once in a while I manage to actually attempt to  be “organized”) – I’ve realized that I have a lot of “me” posts. Which I guess, considering the name of the blog is TERRA talking, makes sense. But I hope at the end of the month you know me a little better. I hope you talk back so we can have a conversation and I know you a little better.  I have absolutely loved meeting some of you through this little crazy spot on the world wide web. I know there’s so many more of you out there. When I see people who are reading from places completely foreign to me I have to wonder if google accurately translates my awesomeness and colloquialisms. I am thinking it doesn’t. So there’s a whole lot of people in Egypt and Sweden and Latvia and Japan who think i am a complete bumbling idiot. There’s probably a whole lot of people right here in the good ol U S of A who think that too….

Anyways.

the point being – we’re probably gonna get REALLLLL comfy the next few weeks. You THINK you know me…

I know you can’t wait to find out how we potty trained my kitty (i’ll even do some of my super special awesome draw-rings for you!), what are my top 5 favorite books to read over and over and over again, why I spend entire weekends being a crazy dance mom, and my obsession over Snackeez. (My birthday is in two months. I’m just sayin’…)

So i’ve worked on this post for like five hours (in five minute bursts – it’s just been one of those days) – and i’ve still said absolutely nothing. I’m not sure i even have the ability to focus long enough to come up with a point at all…I consumed a redonk amount of caffeine today. And now i’m all corky romano at 10 pm.

But today was a good day.

I didn’t even have to use my A.K.

We survived the dentist and the crazy schizophrenia surrounding kendall’s need for/not need for prophylactic antibiotics prior to any dental work. (Turns out she does. So we get to go BACK next week for that funness to happen.) (Someone remind me to pick up the stupid antibiotics from target.)

Tomorrow we leave for St Louis for dance comp. I have not even begun to pack. I feel like I should wear some piece of Blackhawks paraphernalia….

Alright – here’s a sampling of some of the pics from our Make A Wish trip….PUH-LENTYYYY more to come your way!

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ok that’s all that my computer is playing nice with right now…you’ll just have to keep coming back to see more!!!

Happy May Day friends. Someday soon I hope I don’t have to wear my winter coat anymore!

terra

the hits keep on comin.

So then….

the water heater broke.

Remember this awesome winter when we had the “polar vortex” causing extreme cold temps? The shower I took was roughly polar vortex level. I know maybe a normal person would  have gotten out before frostbite set in but not me.  I’m a tenacious BEAST. I kept hoping it would turn warm again. I just KNEW it would turn warm again.

It did not.

Of course Ben is somewhere in a different time zone when this stuff happens.

But then i thought

“wait a minnnute….. no hot water means i “can’t” do laundry….or dishes….or cooking….”

THIS ROCKS!!!

But eventually I did go down and try to lite the pilot light again. I dunno who designed these things but having to stick your hand into a dark hole that you are priming gas into and hold a lit match til the ring of fire lights up is a STUPID design. Dumb. Scary. But I tried it multiple times. To no avail. Finally our nurse who was down with me said “ummmm maybe you should take a break from that, it smells really strongly like gas down here now.” Our house is trying to kill me. Or Nicor is at least. Why does every week of my life involve some kind of gas emergency??? Is anyone else wondering this too?

(A recap for those of you not brave enough to be facebook friends with me: a few weeks ago I was cooking a frozen pizza super gourmet meal for my darling children. 20 minutes later the cheese was still frozen, so I open the oven, stick my head in, and proceed to troubleshoot for a few minutes. Yes it reeked like gas but I thought – ok harmful gas is odorless so i must be ok since it smells SUPER strong like gas….so then i ended up laying on the kitchen floor for like 30 minutes with the porch door open because my head hurt so bad and i was puking every few minutes. Apparently i scared my kids to death when i told them to load up in the car we were going to wendy’s instead. i don’t remember going to wendy’s but i think we did. So a couple days later i called nicor because a mob of fb peeps were threatening something and sure enough – our oven was spilling carbon monoxide out like it was it’s job. And a headache and vomiting are signs of CO poisoning. WHO KNEW?!?!?!? Also did you know that the gas company adds something to the gas so you can smell it and get out of your house if you smell it??? I did not. I think that doesn’t make sense. Don’t say gas is odorless but then make it smell….IT’S CONFUSING!!!!
Good news: I did not die.

Better news: I got a new oven that actually heats up and cooks my awesome gourmet meals. Also frozen pizzas.

 

So a couple weeks after that, we came home from our Make A Wish trip to our WHOLE HOUSE smelling like gas. We called nicor again and sure enough – a small leak inside at our heater and a big leak outside at the meter. 

And then the water heater tank.

 

I need an old priest and i need a young priest. I need a vial of holy water and six crow eyeballs. And a bunch of sage. “The power of Christ compels you…..”

 

For serious.

I’m thinking at some point we might should invest in a carbon monoxide detector for our house but….you know. Someday.

Anyways – after getting home from dance last night, i was informed that our downstairs toilet was also broken. So my best friend and I fixed the toilet while her husband bravely went downstairs to attempt lighting the possessed water heater. He was successful. I went and cranked it up to “scald me” level, good thing too because i created two more loads of laundry in the process of fixing the toilet.

 

And then i went to yoga this morning.

Where my friend said “when it rains it pours”, and I realized – it’s been raining for a few months now.

And I guess at the end of the day, you can either choose to sit and let the rain soak you, or you can go dance in the puddles. (Assuming you aren’t passed out from CO poisoning.)

I hope my attitude has been more puddle dancing than pouting.

oh and that first warm/hot/burning shower??? It was heavenly.

Don’t ever ever ever take hot water for granted.

That’s the real lesson here, party people.  Take more hot showers.

I’m going to attempt a blog post a day in May – but I need your help and ideas. Leave me a comment or send me an email (look! I finally got the email icon thingy to work up there at the top! yay me!) and tell me what you want me to do a vlog on (cause we all know i’m gonna play the lazy game and just phone it in via vlog some days), or what your burning questions are you want me to answer in blog form. And Make a Wish is not an answer. That’s a given. I will get to it I promise.

 

Oh and see the link on the right? You won’t see it if you’re on mobile –but if you’re on the computer with a real browser (and no IE is not a real browser….seriously people. come into the new century. get firefox or chrome or something.) you will see the links to click on Hope for Kendall or Terra Talking – i am SO CLOSE to 800 on Terra Talking –come be my fan please!!! i’ll love you forever and i’ll buy you oreos and tell you you’re pretty.

 

love and hugs –

 

me.

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