Live the Life You Imagined.

When I was young and full of idealistic romantic views about how my life and love would be one day – It never looked anything at all like what my real life is.

I loved this quote from Henry David Thoreau and I always “imagined” my life being about me finding myself deep in the woods on Walden Pond too, and being this amazing writer and living this quaint quiet little life.

Life has a funny way of shaking up what you thought it would be and making it into probably what you need, but never would have asked for.

Today I am torn between my desire to go double fist two Venti Starbucks quad shots and be the most productive person on the planet, and curl back up under the 14744-Live-The-Life-You-ve-Imagined covers for a good cry. I will probably end up doing some combo halfway in the middle.

Last week the beautiful daughter of my best friend passed away and I have walked through the Valley of the Shadow of Death with her over these past days. It is beautiful and heartbreaking and really super hard….yet I wouldn’t have been anywhere else in the world besides right there with her. In the hard moments and in the glorious ones. I have cried so much this past week that I feel dehydrated. And just when i think i’m done crying, something happens to set me back off. I have a whole other blog to write about all of that…

And in the midst of all of that emotional upheaval, I am preparing for Kendall’s surgery tomorrow. It is the one we knew would have to happen when she started having her line issues/infection a couple weeks ago. Rather than sit in the hospital for ten days, they released us to home on IV antibiotics to clear the infection and plan where and how they are going to either fix, replace or give her a whole new line. There are no other spots to put it. In almost 8 years of constant use and abuse no small veins should ever have to endure – hers are scarred over, clotted off, or otherwise just not strong enough to support what is needed of them. I don’t talk about this a lot because, well, it really sucks. I do my best to shield people from the harsh realities of what Kendall actually lives with, endures. Her battle is one of quiet yet fierce strength, and to overdramatize that serves no purpose. But this is where we are at. A world class surgeon scratching his head and unsure what his plan will be once they wheel her into the OR tomorrow. A momma who is scared shitless about the ramifications of this surgery. A little girl who has endured countless surgeries and procedures but THIS time has been able to voice her nervousness, her fears about how it feels to wake up with the tube in her throat, how bad it feels when she gets too much gas anesthesia (yes she uses those words!)

This surgery, more so than any other before, I have to leave in the hands of a God who has never failed us before. And oh how hard this is. It is SO unlike that peaceful little idyllic life I had imagined. I am in turmoil, there is chaos surrounding me in the logistical planning of my job, activities for my babies, not leaving them alone but not knowing what the hospital stay is going to look like, making sure that everyone around me has everything they need because that’s just what I do. I keep everyone happy and moving and doing what they need to do. But this….this feels overwhelming.

I know there’s all these happy little trite things you say to someone in my position. I know all that because I’ve said them myself to others. But oh how my heart hurts right now. These are hard days. They just are. There is no sugarcoating how scared I feel, how I cannot stop crying for reasons I’m not even sure of, I just know the tears fall on their own, how I don’t know how to just “fix” everything and make it all better.  I cannot sugarcoat that and I don’t expect anyone else to do it for me. I will find my peace when I quiet my thoughts and my heart. I know I will. Right now, I just need to get this all out.

And even in this, the journaling of these thoughts and feelings in my space, like I always have in the past – it is helping. I have held my pain in deep inside for so long, but this is where I feel happy…writing my thoughts. I will get back to doing it more regularly.
Today, I will pray over Kendall’s team of doctors that is meeting this morning to talk about our best options for Kendall’s line surgery tomorrow. I will pray that the God who has done miracles before will miraculously open her little veins, will strengthen them, will guide her surgeons steady hands to exactly where they need to be. I will pray for my little girl who feels a nervousness no 7 year old should have to feel. I will figure out how to pay for the stupid American Girl lego’s she is asking for for after surgery and I will put a smile on my face and i will rock her and tell her all of this will be ok. I will be momma bear to that know-it-all anesthesiologist and tell him no you may not use full gas for this procedure even though it’s easier for you. I will tell Kendall I will protect her always and no matter what.

In the words of Marcus Mumford (<3!)

” I will hold on to hope, and I won’t let you choke on the noose around your neck.

I’ll find strength in pain and I will change my ways

I’ll know my name as it’s called again.”

 

I will figure this all out and I will get through it like I always have in the past. Because it’s what we do.

I may not be living the life I had imagined, but I think maybe in a way I am. I always imagined that I would be the heroine of my own story, I would be strong, I would endure under any circumstances. And I think i’m doing that ok.

And now I have to go get that super strong coffee and start doing all the things I have to do.

Peace out party people~

 

T

Things you Learn.

I don’t know why I decided today was the day I was going to share this. But I just wanted to.

Maybe because these times with Kendall in the ICU are some of the “dark times” i reference in the vlog I’m inserting below. Or maybe just because i’m sleep deprived and there is no rhyme or reason to anything i’m doing right now.

Anyways –

as a quick Kendall update (and if you want more up to the minute ones – be sure you have “liked” her page on facebook – there’s a link over to the right in the sidebar if you’re on a computer and on your mobile, scroll down below this post –

She is not septic – and that’s a very good thing! That’s what usually makes her go tumbling downhill head over heels and end up intubated and on all the pressers, etc.  She does have bugs growing out of the blood we take from her central line – but not out of her peripheral veins – so that means she is not even bacteremic (blood infection) – which is what the suspicion was yesterday. And to look at her – she is definitely holding her own.  But even with all this “good” news, and a pretty happy Kendall, it still just wasn’t adding up to me.  Something wasn’t quite right.  Out of that weird sense moms have, I asked them to please run a urine culture. I was met with resistance and all kinds of reasons we didn’t need to do that – but I asked if they would please just do it to shut me up.

And whaddya know??? She sure enough has a nasty UTI as well. And THAT makes much more sense to how she is acting and how/why she got so sick so fast. So now we are working on chasing that information and getting the right antibiotics for that bug also. Overall she still remains in good spirits and is not currently trying to pull any scary stuff.  I am VERY grateful for that. 
I am grateful for a lot of things – some of them are harder to put into words than others.  I am grateful for the love and support from so many friends and family who lift me and my family up during these times when our lives are thrown upside down.  I am grateful for the relaxation and peace of my trip last week and that Kendall waited until after I was home to pull this craziness! I am grateful for every breath of life I am blessed to live and I am grateful for the hard lessons I have learned this past year.

So …

there’s that.  I realize it probably doesn’t make sense, and honestly i  haven’t re-watched it since i made it so it probably REALLY doesn’t make sense.

But that’s what was on my mind today. There might be more later. You never know. So check back often.

And if you want me to talk more about the swimming in the bat cave experience, let me know!

Peace out party people. I’ll try to have a more make sense blog post later.

Terra.

Monday mania.

Ohhhh monday….so cruel with your 6 am wakeup calls and freezing cold weather.

I’m not ready for fall, not ready for these dark morning and dark evenings, not ready for the cold!

But i AM ready for this week, I think.

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Last week was a not so fun week. Just too many frustrations and too much going on and not nearly enough sleep for me to be able to handle it all. It had it’s great moments too – like being on the radio with our Special Spaces friends (twice even!), and taking the big girls to Fright Fest at Great America, and having good consistent nursing coverage, and beautiful weather for most of the week.
But overall – i’m glad last week is gone.

Our car was in the shop for almost two full weeks. Ben had to take his car so he could do his travelling for work. THANK GOD for putting good people and good friends in my life who have extra cars so I can use their mini-van to schlep my offspring around in. I mean, really, who does that? Let’s someone have their car for two weeks? I’ll tell you who – my best good friend does. There aren’t enough words to thank her. There MIGHT be enough chocolate bars to thank her if i raid five stores around me. So as much as i want to complain about the fact that the stupid shop ordered or received the wrong stupid part and still couldn’t manage to find us a loaner vehicle for TWO WEEKS – I really have nothing to complain about. By some creative bill juggling and good timing with paycheck time, we were able to pay for the repair to our car. God is good, all of the time. And all of the time, God is good.

I do not say those words lightly.

It is very very very hard sometimes to say those words. It is hard to sit in church and actually sing some of the songs we sing. It is hard to listen to Christian music on the radio because sometimes it seems so darn fluffy.  and sometimes i want to scream. It is not so easy to actually sing “take everything Jesus” because trust me when Jesus decides to take everything you will find ways to take those words back in a heartbeat. I’m digressing. (And for the record – i do still sing those songs, but it’s usually with tears streaming down my face because i KNOW how hard this is, this letting go and letting God and meaning it.)

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But God IS good. I don’t take any of our blessings for granted. and we ARE blessed.

this is losing focus real fast….actually i’m not sure it ever had much focus.

Ok – i was talking about how last week was a crazy blend of crappy and awesome. More polarized than typical.  I’m glad it’s over. I am ready to take THIS week by the horns and make it good. i started this post this morning, full of vim and vigor. And i did get a lot done today. But then my stupid eye started doing it’s thing where it tries to take over control of my brain and they fight and it hurts and i look like rocky balboa after three rounds with the russian dude on steroids. And it totally sucked my will to live. And then I started telling Ben about all we have to do this week while he is gone for work and he asks me if i’ve ever thought about slowing down……

Of course i have! i think about it all the time! Slow down….psssshhhhtttt.

someday i’ll slow down. when i’m 89.

til then, we have eye dr appointments and school conference meetings and dance practices and planning for two day trips up to milwaukee for dr appointments and a child who requires roughly 8 hours of direct, hands-on, highly skilled medical care a day. Rest is for wimps – look out I have a world to conquer!!!!!

But really – in between all the running, there is a lot on my mind. During our radio interviews this week with the endearing and loveable Frank Fontana, i had a lot of time to think back on our journey with Kendall. And what a journey it has been. We will be celebrating her journey with an AMAZING day of celebrations on October 19th. I will put up an entire blog post related to that event at some point this week, because we would LOVE to see you there. this will be kendall’s “birthday party” that we typically have at a large venue around her birthday every year and invite everyone to. I could not think of a place large enough to rent out that wouldn’t break the bank – and this event just seems like the perfect time/place to celebrate HER.

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Anyways – lots coming up this week – hoping I have time to update throughout! tomorrow Karissa has an eye doctor appointment to make sure that her sudden regression in reading abilities isn’t due to worsening eye problems. she already wears bifocals/progressive lenses so we don’t “think” that’s the issue, but before we go down a long and wearied path with the school, we may as well make sure it isn’t something “easy”. And who knows, we could be surprised! Before i pick her up though, I have to a.) somehow get my own contacts in my eyes since i cannot drive in my glasses very safely, and b.) go help out in Kaylen’s classroom for an hour or so.

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did you make it this far??? you should win a prize if you did. Oh – speaking of prizes – we will be having a cute halloween costume photo contest on Kendall’s page soon! Keep your eye out for that because I think it’s going to be lots of fun!

ok now i’m going to sleep.

peace out party people.

 

love and hugs~

terra.

5 Things i’ve learned at the hospital

Goodness knows I could probably write about five HUNDRED things i’ve learned in the hospital over the past few years, but for brevity’s sake, I’ll keep it to just five that are most relevant to this most recent stay.

1.) Checking into the ER at midnight after a 3 hour drive is not a super spectacular choice. I recommend getting your act together MUCH earlier in the afternoon so that you have a remote chance of actually getting some sleep at some point that evening.

2.) Pack an extra pair of contacts, especially if you are nearly legally blind and your glasses prescription is three years old.

3.) CARRY CASH just in case the debit card system for the entire hospital is down for the duration of your stay.

4.) Keep a stash of moisturizer, lip gloss and mascara in every bag you might ever take to the hospital. Sometimes you will get sick of that “hospital/homeless chic” look you’ve been rocking and need a little perk-me-up.

5.) Learn that your momma bear intuition regarding your medically complex child IS usually right, and don’t let minor bumps in the road detour you from your belief in yourself.

 

what a week.

So as a quick catch up – Kendall got her blood transfusion about three weeks ago. It took about 4 days to really see a good improvement, but once we did, it was AWESOME! It had been wearing my spirit down for a while watching her struggle, knowing something was wrong, knowing even what the culprit was and the likely “fix” for it – but not being able to give her what she needed. Fighting through that with Ben, as a team, toe to toe with the docs, it was very tough. But we did it together. And in the end we got Kendall, the one with the spunk and energy and zest for life that we all know and love, back.

We went right from that hospital stay to a weekend trip for me and the big girls up to Madison for a dance competition (they did awesome). We had a great, fun, dare i say – “relaxing” – time, just me and the bigs.

We’ve been adjusting to life with another person in the house since Ben’s mom moved in with us (the week before Kendall’s transfusion). Logistics are challenging at times, but we’re learning to all work and live together! I am glad that we are in a situation where we are able to help her have a place to live, even if it is inconvenient and adds to the craziness of our lives. The girls are getting more used to the idea, but bless their hearts, their lives have never really been “normal”. We’ve always had therapists and nurses in and out of the house. our time is so rarely our own, just us, a family. The  basement was the one “escape” they had, but now that’s where Nana lives so they are learning to just escape to quiet corners of the house whenever the opportunity presents itself. Since she has lived in Texas for as long as they’ve known her, they don’t really know her. So to them she is somewhat a stranger, and they have to get to know her still. It’s an all around weird situation for all of us, and just requires a lot of patience, time, earning of trust, and prayer.

All of that to say that when Kendall started getting “weird” on Sunday afternoon, and I knew Ben was leaving for pittsburgh first thing monday morning, I knew this week was going to be a challenge.

We finally all made it to church Sunday morning for the first time in MANY months.  I was trying to think of the last time I sat through a Sunday morning service and I honestly couldn’t remember when it was. I think it was last October or possibly November. (we did GO to church on Easter Sunday, but it was not our home church. The girls were dancing with their dance team as part of the worship service at a church 45 minutes west of our home.) Kendall was running TPN and had her catheter drain bag on. We secured everything as best as we could and sent her in to play with her friends in her church class. She was so happy to be there! But on our way out of church, she tripped and took a hard spill. We get home to eat lunch and she started looking puny. She asked to go lay on the couch and as I helped her get settled I noticed her urine bag was full of bloody urine, with tons of blood in the line of the bag. It was enough to mildly panic me, but instead we just put her to bed with some fluids running and hoped that the bleeding would stop. She woke up feeling much better, played outside on a GORGEOUS spring day, and no more bleeding. She went to bed for the night seemingly ok, but within an hour as I was taking Kaylen up to bed, I heard kendall moaning, saw her HR on the monitors, and knew something was up. Went in to her room and she was having the rigors.

If you’ve never sat and held your child while they were having the rigors, I don’t think I can adequately describe the heartbreaking feeling that goes along with that. It’s one thing to sit and hold a feverish child, even one who gets shakey with their fevers. But the rigors that come with a body trying to fight off sepsis are horrid. They absolutely cannot get warm and their little bodies just shake and shake and shake. I had Kendall wrapped in three thick blankets, a sweat on over her pajamas, and just held her close to me and rocked with her. she kept asking me to warm her up, make her warm please, stop the cold. I thought her temp would be sky high within a few minutes so I went to start getting a bag packed. Turns out she was only a point or two above our “go to the ER” threshhold, so I rechecked her after a few minutes and it was below that threshhold, so I figured I would try to get a couple hours of sleep in, assuming I had a long night ahead of me.

Thanks to our monitor from our wonderful amazing friends, I was able to sleep in my own bed and watch her numbers from there. She managed to calm herself down within an hour or so, and by that point I was very tired, so I figured I might as well crash, wake up if her alarms went off again and make a plan from there. But i was stumped by her relatively low temperature.  Rigors typically equal a 105+ degree temp, which almost always equals a fungal infection/sepsis for kendall. Rigors plus a very low grade fever = confused mama. I was waiting for the other shoe to drop Monday morning, but her nurse was reporting low temps to me. I finally put together that her nurse was doing a temporal scan, and upon feeling Kendall, knew that wasn’t right. (to get a true and accurate temp for kendall we have to do rectal temps. I do not know why. It is just how she is.) Rectal temp showed her to be 102.7 (vs the 97.1 she was getting on the temporal one – the one that scans the forehead.) This is the craziness of Kendall’s body. So at that point, I started calling Milwaukee for help.

While waiting I figured I would drop off some urine at the local lab because I suspected it was another UTI that needed treating. By the time Kendall woke up from her nap, after a good hefty dose of ibuprofen, her temp was back down to normal range and she was laughing and playful again. I was super stumped, but happy to see her like that. Still waiting for the other shoe to drop. The big girls came home from school and while we were driving to the chiropractor, I told them that Kendall would likely need to go to the hospital. I could see their little spirits fall. They knew it meant staying with their Nana at our house, that it could be a while til we were home, all the usual suckiness of us having to be up at the hospital in Milwaukee. I briefly toyed with the idea of trying to take her to Edwards, but knew that if she did get VERY sick, it would be harder to get her out of there, and plus I would need Milwaukee to make any decisions about her line or such if it was that. (Plus the memory of having to spell out the correct antibiotic for the doctor last time since he had never prescribed that medication before….) As much as it sucked, I knew if Kendall got another fever, it was gonna be Milwaukee or bust.

I was exhausted from running around all day, came home to make dinner, get kids ready for bed, do homework with all three, and shlep them up to bed. Sure enough, as I was getting Kaylen tucked in, I heard Kendall’s moaning and monitor. I could tell the minute I opened her door that she was hot. I about fell over when I saw her at 104.7. That is typically BAD bad news. I paged Milwaukee, and went in to tell Kaylen I need to take sissy. Kaylen started SOBBING that she didn’t want me to go, she hated Kendall’s line, hated kendall getting sick, please take her with…So heartbreaking.  Milwaukee called back – it was our doctor who knows us, knows Kendall, and knows exactly how bad that high of a temp is for her. He asked me three times if i was sure I could get her there in our car by myself or should he send the ambulance. I told him that I didn’t know if it was the right call, but that I felt that I could get her there safely. Finished packing up the car and went to tell the big girls and got more of the same crying and pouting. I had nothing left to do but call my dad and see if he could come get the girls. It was the only option they were comfortable with at that point.

So off we went – my girls packed into my dad’s car and us packed into mine.

Longest drive I’ve ever made. Thankfully Kendall was conscious and talking to me every once in a while the whole trip. I was SO tired. We hit the Wisconsin line and I wanted to cry – we had another hour-ish to drive and then all the getting checked in, history, waiting, deciding…..i knew it was going to be a long night. My eye started feeling like it had been stabbed with a hot poker about 45 minutes into the drive, and it only got worse throughout that long night.

Of course we get to the ER and Kendall’s temp is back down to 97 rectally and she’s acting mostly ok. The attending ER doc who we never actually saw come into our room ordered a peripheral IV to be started with a slow drip of D5 fluids. The nurse came in to tell me that and I asked her if he was going to be the one coming in doing a dexy scan (blood sugar check) every ten minutes since he wanted to stop the TPN that was running into her perfectly functional broviac. I was getting slightly stabby by that point. It irks me when doctors make decisions based on their book knowledge and never even bother to lay eyes on a patient. Thankfully someone or something made a call to admit her and start antibiotics. So we pulled in to the ER parking lot at 12:05, got admitted and up to the floor at 4 am, and we did history, meds, and cares up until 6 am. And then Kendall got Red Man’s – a reaction to one of her antibiotics that causes intense, usually painful, itching and burning. It’s kind of like an allergy but not a full on allergy. It was just not what either of us needed to deal with after that long night!

Tuesday we slept. And slept. And then slept some more. All of the docs coming in and out of our room could all tell Kendall felt like poop, and she was starting to show some “soft” signs of possibly going septic. I felt so horrible myself that I wasn’t of much help, and there wasn’t much to be done anyways besides waiting for cultures to grow. We had a good talk with Special Needs (Kendall’s complex care management team) and Urology about the game plan, and went to have an X-ray and ultrasound of Kendall’s bladder and kidneys. Even though she is growing gram negative rods in her urine (meaning she does have a UTI), it is believed that this is just her colonization, a bug that is always going to be there because she always has plastic inside of her bladder. But to be on the safe side, they wanted to take a look and make sure they didn’t look crazy inflamed or anything.

we found out this morning that her kidneys actually look wonderful, and that is due to the vesicostomy being placed. It is doing it’s job of releasing all the pressure she had been having previously that was putting pressure on her ureters/backing up to her kidneys. So that is spectacular news. However, they see some “areas of concern” on her bladder and we are waiting for urology to weigh back in on what that could mean for this acute situation, and longer term. Whatever they are, they are likely to have been there for a while, so the significance of them could be something, could be nothing. Overall, things are headed in a good direction though.

We are hopefully going to get an “all clear” tonight from her cultures – meaning there was no growth on the blood cultures at 48 hours. Once we hear from uro about the plan for the bladder issue, the team will come up with a plan for antibiotic coverage at home, and discharge papers will be written! We should be back in our own beds by tomorrow night!

Thank you so much for all of your prayers and support as always. Sorry this turned into a novel and I am trying to wrap it up now between 389 distractions and interruptions.

I hope you are having  a blessed evening with your family and friends, wherever you are! I’ll hopefully update again from HOME tomorrow night! Fingers crossed for no Kendallisms tonight!

 

terra

Happy Birthday Week!

Trying this again. I still haven’t forgiven my blog program for losing my last post. I’m not going to be able to rehash the whole thing. But i cannot believe it’s been a week (more?) since my last post, so i figured I better get something up!

It has been another crazy week around here – but we all survived. Eye doctor visits for myself and all four K’s revealed that at least three of them have gotten my crappy eye genes. Kendall will likely be hugely benefitted by glasses, but was uncooperative with the testing by the end of the visits, so we will try it again in a couple months when she has hopefully gained SOME kind of attention span to be able to test the deficit better. Kealey needs pretty strong glasses which was a HUGE shock – she has never ONCE complained of things being blurry, hard to see, strained eyes – NOTHING! And Karissa has a “visual processing disorder” based on some of the testing the doc did, so we will need to follow up more with her neuro about that to figure out more of how it fits into the bigger picture.

Conferences with their teachers all went well – i’m so proud of all of my girlies and how they are doing in school!

This week will hopefully be MUCH less stressful, and hopefully will bring us closer to more sanity in our lives with nursing help, finishing up IV antibiotics (and their crazy scheduling!), and no appointments (yet). PLUSSSSS….

 

It’s little missy’s BIG BIRTHDAY!!! this Wednesday! I need to finish up my birthday letter for her, do a birthday video/year in review, and decide on her present! This is the first year she has actually been cognizant of “things” to want, and of course she wants EVERYTHING! Her first request was for a “minnie shopping cart wis all da food”, but when I went to look online for that, they had only a “bowtique” shopping cart (Minnie’s bowtique), no food included, or a Minnie play kitchen. She went nuts over the play kitchen pictures and told me “mommy, you have good sings on your pu-tahh!!!” But then she saw an ad for this Cinderella playset and looks at it every day and says “mommy, da birsday fairy bwing me DISSSSSSS????? Pweeeeezzzze!!!!” And of course I can’t FIND the stupid cinderella playset anywhere! (I can’t even find it online to link to but THIS ONE is cute too that i did find! i’m sure she’d like it too…but its not the one she looks at every day!!!)But then again she is also obsessed with play-doh and painting so maybe i should just buy more of those? i hope I get some free time to go actually find her something before her birthday!

And we are SO CLOSE to meeting my goal of having 1000 friends/fans/prayerwarriors for Kendall Quinn on her facebook page, Hope for Kendall! There is a link in the sidebar – if you have not liked her page yet – PLEASE help us out and do that! Then feel free to share it on your wall! Why is this important to me? I’m not sure that its about the actual “number” as much as it is about sharing my beautiful amazing warrior princess with so many people. For all that she endures every day, she is my hero. For all the times she pushes through pain that shoots through her bladder and down her legs and into her back. For all the times she lugs around a backpack that weighs 1/3rd of her body weight that carries her food and pumps and medicines and supplies. For all the times she gets stabbed in the legs with medicine to break up the clot hanging out dangerously near her heart. For all of the daily battles she faces with a smile on her face – I want her to know that she is touching someone’s life. that she is making a difference. That all that pain isn’t for nothing. I want you to know this amazing little girl like i do. She’s pretty awesome. So are her sisters. So is her dad.

I’m also toying with a possible idea of having a “bring your own nuggets” party at the bolingbrook Chick-fil-A this coming Saturday night (the 17th). Basically we would be there for a certain amount of time and have some cake and if you could stop by and celebrate with us, we would love to see you! No pressure, nothing huge….just something i’m tossing around right now! Let me know if you think you might be able to make something like this! It will help me make up my mind!

Anyways – that’s where I’m at this rainy Sunday night. It might snow tonite! I don’t know why – but i think that would be kind of awesome! i hope you have all had an awesome weekend and have a beautiful Monday! I promise i’ll have a better/more detailed post tomorrow!
Thanks for checking on us!

terra.

{Be} Renewed.

Ahhhh – what an amazing event the Friday nite “Hope For Kendall” benefit was! I am not sure that I can adequately put the whole thing into words. The overwhelming display of love and support for our family went so far beyond the confines of those four walls. It wasn’t just about having so many people show up – in spite of the iciest snow storm we have had around here in a while RIGHT during rush hour! It wasn’t about how amazing and beautiful the space looked – even though it was amazing and beautiful! And it really wasn’t even about the monetary support (I don’t think we even have final numbers yet!) – even though that in itself was and is amazing.

it was about being able to connect with people. People who read the blog, people who stay updated on facebook, or through my mom at MOPS, or through whatever weird network of relationships that somehow twists people together. I loved hearing your stories, seeing your faces, being able to hug so many of you. It was about having this overpowering sense of gratitude for all of you who worked SO HARD on this nite, and the families who supported you through such. For all of you who planned, created, worked on, sacrificed for this nite to be such a success. For the words of support and love in the video at the end that absolutely had me bawling. This all gave me such a sense of …. I don’t even know how to word it right! Like I feel like we have been given the greatest gift in the world – and my responsibility now is to share that with others. To take this love and support and multiply it and pass it on.  And I am so excited to get started doing that!

This whole event gave me such a renewed sense of purpose, of energy, of an “oomph” to keep pressing on. One that I didn’t even realize I really needed, but am so glad I saw and received.

benefitblog We are so blessed that not only was Kendall healthy enough to attend the benefit – but that she had what I can only term a “supernatural” boost of energy to be able to last the entire nite – and not just last – but to be the most pain-free, the most energetic, the most engaged without being overwhelmed that I have really EVER seen her. I know so many people were praying for her that nite, and pray faithfully for her every day. And Friday nite was truly an answer to those prayers. I hope that for all of you who saw her running back and forth between our table and my parents’, and stealing all of the crackers from the cheese trays, and dancing with her sisters while the wonderful Lexi Elisha was performing – I hope that what you saw was the hand of our Loving God reaching down and giving her the strength to do all those things. My heart was so full watching all of her sisters run and play together. Kaylen was still a little reserved, not feeling quite up to her normal par – but they were all there together.  It was awesome, and again was part of the renewing of my heart, of strengthening my reserves for those days it seems like its too crazy to move, of creating those moments in time that fill your heart so full it feels like it might explode open from happiness and pride right inside you. Contrasted to last year on this nite – seeing kendall running around is nothing short of a miracle. And I think of all that she has fought through from last year to this – and I am so so so thankful and grateful. For her continued improvements and healing, for the love and support that has gotten us through this year, and for the love and support that we are surrounded with moving forward to whatever this year holds!

Anyways – it was an awesome night. And I’m sorry for those of you who weren’t able to be there that I can’t adequately describe it all. It was a blast playing trivia (they are some TOUGH TOUGH Questions!!!!) and I hope all of you who were there had just as much fun as we did – laughing, joking, smacking ourselves in the forehead when the answers were revealed! Erik, our emcee for the nite, was a ball of energetic entertainment as usual! Lexi and her amazing band gave an awesome performance and ended with some great worship time. The Silent Auction was full of amazing products/services – and I cannot thank those of you who donated to that portion enough! And of course, the live auction of the Kitty Bath drawings was the point of the evening where i thought i might pass out from laughing so hard! Erik reading my “scintillating dialogue such as ‘you suck’ and ‘actual bathroom space’” was what threw me over the edge! And it ended with the man of few words getting up to thank everyone. I was crying so hard over the ending video that I literally could not talk but pushed ben up to get the microphone (I think he was planning on saying something anyways, but by that point it wasn’t really a choice!) And then to everyone who stayed to clean up – thank you. To the girls who took my girls and taught them how to sing into microphones and danced around with them – thank you! There just really aren’t enough words.

I am going to copy in part of a “thank you letter” I had written a while ago to attendees of last year’s benefit. A large part of this got edited out (Because I am too wordy) – but you are already a captive reading audience so here you go. This is for all of you – whether or not you came to the benefit, or sent money in to be donated, or haven’t donated a single red cent but have read, and prayed, and supported us with your love – everyone.

Simply put, our family would not have survived this past year were it not for your help, support, blessing, prayers. YOU are all a huge part of Kendall’s story. And I honestly don’t have the words to fully express our thanks and gratitude. I want you all to come this year not so much to give again – but so that I can line you all up around that room, and give each of you a hug, and tell you thank you, if I can squeeze the words out around the tears. Thank you. Thank you. Thank you.

We hung the window that you all signed up in the hallway. Many many many nites as I have trudged up and down the stairs after fixing Kendall’s position so she gets more oxygen in and stops setting off alarms, or I’ve troubleshooted a grumpy IV pump for the 17th time that nite, or I’ve just gone up to feel her breathe, check her forehead with my hand, watch her sleep – I will see the names there. And I will put my hand on that frame, and I will ask God to please let each and every one of you know how much of a blessing you are to us. I ask that somehow He shows Himself to you in the form of a blessing that you need – a life-saving, world-changing blessing at just the time you need it. Just like you all were for us.

There is a scene in the movie “Saving Private Ryan”, where Tom Hanks’ character tells Private Ryan “Earn This. Earn It.” – referencing the fact that Private Ryan had been saved through the selfless sacrifice of so many other men, to live his life in such a way that it made their sacrifices worth it. At the end of the movie, Private Ryan is an old man, bending over the cross of that captain in the cemetery, his family in the background. And he says to the captain’s cross – “I tried to live my life the best that I could. I hope that was enough. I hope that, at least in your eyes, I’ve earned what all of you have done for me.”

And that is what I wanted to say to all of you today. I know there is no earthly way that I could ever adequately say thank you to all of you for what you have done for us. But I hope that what we have done, and what we will continue to do, is enough. We will continue to stay strong as a family. We will continue to live every day by cherishing the life we have been given. We will continue to hope for good days, healthy days,  healing, a cure. We will continue to spread the message of hope, and the Author of Hope with everyone we meet.

We will continue to earn it.

Every day we are blessed to live.

Thank you.

 

I know there will probably never be a way I can sum up our gratitude in words. But I will never stop trying to live this life purposefully – to give action to the gratitude I feel, to continue to send your generosity, your love, your support even farther across this great world we live in.

Please go to the Hope for Kendall website that the benefit coordinators run and update – there are new videos (including the one that had me sobbing!), and all the photos from the nite! (if you click on the pink polka dot picture it will take you to the website also)

 

Thank you for checking in! Be sure to keep checking back in – I have a BIG change I am working on for the blog and I hope you all love it as much as I do!!! Go tell your friends to like the Terra Talking Facebook Page! I’ll unveil the newest blog design as soon as we hit 250 fans!!! (or as soon as I get too excited to show it off and can’t wait anymore!!!)

Spread some love today – and leave a comment about how you did it – or a time when someone did something for you that made YOU feel loved! It IS almost Valentines! (which, coincidentally, is one of my favorite holidays ever!!! and did i mention that I am in charge of the party for Kealeys class tomorrow??? does anyone have 23 pairs of chopsticks laying around??? let me know!!)

 

terra.

{Be} Busy.

Ok maybe busy isn’t the right word.

InIMG_3243 the scheme of preparing for tomorrow nite’s big festivities (or tonite by the time most of you will read this) – my workload is really nothing by comparison.  But between now and then – it seems like I have to be in about 82 places at 6 different times.

I am mostly really not wanting to forget that I have to be the mystery reader at school for karissa’s class.  Or all the stuff that is my responsibility for the benefit. Or to pick up kaylen from preschool. Or to pack up all of Kendall’s tpn/fluids/stuff she will need to be hooked up to in the middle of the benefit. Maybe i should start a list. Or is this a good list? Oh look something shiny!!!!!!!

Also I have been freezing cold all day and canNOT get warm and this is supremely annoying to me. It is probably because i waited outside for kendall’s bus at o-dark-thirty this morning with only a long sleeved t-shirt on and it was easily a windchill of 15 degrees. Also I am currently starving.

Other random factoids about today: I spent it sewing. I got some wild hair about sewing skirts for all the girls for the benefit tomorrow nite to go with their CUTE new t-shirts with the hope for kendall logo on them – and yeah. ALL DAY. I can also still taste the bacon bits I had for lunch. Kaylen had a pretty good morning but hit a wall this afternoon, due to over-exhaustion i’m sure. Kendall has actually been needing the pulse ox more, so I haven’t been able to keep an eye on kaylen’s like i’d like to – but this is probably a good thing. My bedroom looks like a respiratory torture chamber with all the tubing for oxygen/nebulizers, little plastic med packages, emesis bins (clean and unused but ready just in case!). All of the medicine kaylen is on right now is tough to keep up with on top of kendall’s stuff – but hopefully by this time next week she has totally turned the corner. oh shoot one more thing I can’t forget – her ENT followup appointment. that I need to schedule still.IMG_3248

So basically – I have a lot of stuff to do tomorrow, but it will be FUN stuff (unless i forget someone, in which case it will be pretty UNfun) – but we will all hopefully end up in the same place tomorrow nite, which is the hope for kendall benefit!! So excited to see everyone, and all the hard work that has been done. And on that note…I should go try to get some sleep. Definitely gonna be a long day tomorrow.

Never forget how awesome you are. Cause you are.  Thanks for being you – and for being a part of my life!

 

have a beautiful friday!

 

terra

*no, the pictures do not mean anything. They are as random as the rest of this post. Enjoy!*

Hope For Kendall.

Every once in a while, you are blessed to meet someone who has the biggest, most generous, most amazing heart and spirit. And when you meet that person, you feel kind of in awe of them, especially if you are lucky enough to be claimed as one of their friends. Because somehow, they make YOU end up feeling like the amazing one, even though you know its really the other way around.

Last year during Kendall’s hospitalization after Christmas, our angel walked into our hospital room, and instantly started lighting things up in our corner of the world. She put together plans for a fundraiser night, corralled a group of people into helping put on one of the most beautiful benefit dinners I have ever had the honor of attending, and in no uncertain terms, helped change our lives. Everyone who was a part of that nite, was a part of changing our lives. And that is not to in any way negate the also life-changing gifts that our neighbors pooled together – that was also very huge and very helpful. Or the awesome efforts of a local baseball team and the women who keep those boys in line this summer! Our family has been so amazingly blessed. Beyond words blessed.

So when I was again approached about picking a night for this years benefit dinner – I was blown away. I was amazed – because this year it wasn’t just Mary helping organize it – it was a group of kids from the youth group at Alpine Chapel (where my dad is a pastor – about an hour away from our home). Kids. (I know they think they are not kids, but they are. They are amazing awesome kids and people!) And those group of kids came to our house, and sat and talked with our family. They read the blog, read Kendall’s story, read about mitochondrial disease and its effects on the whole family – and decided they wanted to do something to help. So they started planning the 2nd Annual Hope for Kendall benefit. They made the video, created the website, sent invitations and in short have worked their hearts out to make this upcoming night a success. Every time I get an update from one of them, or see them promoting the benefit on their own facebook pages, my heart swells with gratitude, pride in what awesome people they are, so many emotions. It is not always easy to admit that we need help, or ask for help, or even sometimes to accept help. It has been a hard part of this journey, having to admit my own weaknesses. Cause remember? I’m wonder woman, with my bullet deflecting wristlets of power. Except I’m not.

So it’s hard to know where is that fine line between wanting to be too pushy about the benefit here on the blog, because I don’t want anyone to think that it is ME asking for money for US. But I want you all to know about the awesomeness of these kids, and our angel friend Mary. And how we want this year to be the year that our dream for a foundation in Kendall’s name to help other families like ours can come to fruition. The Hope For Kendall benefit dinner isn’t just about Kendall. Or even about our family. It’s about families all over who struggle with the same things we struggle with every day – running a hospital out of their child’s room, trying to act like its perfectly normal to haul a wheelchair out of the back of the car and attach pumps and tubes and cans of oxygen to it, like everyone knows the hospital cafeteria schedule off the top of their head. And while that CAN become normal – everyone needs a little of the REAL normal in their lives. A fun night out to eat as a family, difficult as it may be to get out the door. A chance to go see Disney Princesses on Ice, or the dinosaur exhibit at the museum. Help being able to keep their “healthy” kids in outside activities because so much of their financial efforts are focused on keeping their medical kiddo alive with meds and interventions and therapies that insurance companies refuse to pay for. These are some of the things we dream about for the Kendall’s Hope Foundation.

K4benefit And the benefit dinner/trivia night/concert is a kickstart to all of that. So I know that this friday nite might be coming up quick. And maybe you already have plans, or it seems like a long drive (if you live down here by us and have never even heard of Lake Zurich – but i do promise that it is a real town and its not as far away as it sounds!), or any other reason you may have for not attending. I’d love for you to come not JUST to show us your support, but to show these kids your support. To show them that you appreciate that in a world of self-centered, bratty, “humanity is doomed if this is the next generation” kinds of personalities among teens today – that these kids are so selfless, so generous, so amazing. They have some pretty big goals for this nite that they’ve put so much time and effort into. And again – it’s NOT ALL ABOUT US! I just need you to know that. I want to help them reach these goals to show them that their hard work is ALWAYS worth it.

So – if you are local, and would like to come in person to the event – you can email Mary at hopeforkendall@gmail.com  and tell her how many tickets you would like. They are $20 each. i think one of the goals they were trying to hit was to sell 25 more tickets. The main portion of the event is a trivia night – kind of like the hugest game of trivial pursuit you have ever played. It is a LOT of fun if you have a whole table of friends you can make as your team – we play against other teams and there are actual prizes handed out. It got pretty crazy and competitive last year and I am looking forward to this years competition! It is being held at a church in Lake Zurich (if you’ve never had reason to drive up there, its about 15 minutes north of Woodfield Mall in Schaumburg. My parents live there and it takes me about an hour-ish to drive there in normal traffic.) It would mean so much to me to see you there! If you live locally but can’t attend – we are still taking donations of services and products for the silent auction portion – so if you can donate something – you can also email mary at the above address, or email me with details! or maybe you don’t have something to donate for the auction but you can whip up a mean cheeseball or some wicked beanie weanies for an appetizer or a dessert type thingy (can you tell i don’t cook much???). I can take any food donations up with me – so just let me know if you want to help with something like that.

Lastly – if you can’t attend in person, and live too far away to share your awesome appetizer skills – I am going to be having a “Terra Talkers” table. (Or maybe even TWO!) It won’t be quite the same for the kids as having real live bodies in the chairs – but i’m hoping to help them at least hit some of their “numbers” with this! SO – here’s how it will work! You can go to the Hope For Kendall website, and on the front page above the video is a PayPal “donate” button. (for the record, all of the donations made through that link go to the Kendall Quinn Fund – not to me personally! We want it to be as “up and up” as possible!) If you click on that button you can “purchase” a $10 virtual ticket (by making a $10 donation – just put “ticket” or “terra talkers” in the comments or something like that!). A full table is 8-10 people – so let’s see if we can make this happen! On Friday afternoon – I’ll post a link of some kind to the “virtual trivia game” that you virtual attendees can play! The person with the most right answers by Friday at midnite will win a prize (and i promise it will be better than a hand-drawn kitty bath illustrated book!)  But speaking of that – the ORIGINAL drawings of the kitty bath post will be being auctioned off at the benefit event – I think the starting bid will be like a quarter ($.25!)  If you want to virtually bid on these awesome, inspiring pieces of artwork to grace YOUR home – leave me a comment and I’ll be sure to update either here or the Terra Talking facebook page what the bid is up to and I can enter your bid in person! 😉

So – Live and In Person, or via virtual attendance – I hope to “see” you all there! we cannot thank all of you enough for your support of our family in all the various ways over the past few years. YOU are the reason that we keep going even when it seems like the hits just keep on coming! we couldn’t do it without you – every single one of you!

Thank you so much~

 

terra. DSC_5328

(and the whole crew, who are going to try  their best to stay OUT of the hospital until at least after Friday. amen.)

{Be} Recovered.

Ok so I failed. Not even a week in and here’s a backdated post! BUT – I really did feel crappy and if i had posted yesterday it would have been probably a whole paragraph of this:

GWNEITlknowth slgpja ohjiiiiiiiiiiiiiiiwtg twlke stapot tga wepjs gwetjp9j3l23  psmb

awstsd aglwnleosin glsltijnda ‘bojse’nmslicnoweknjgs pb Hachi Ju Hachi.

Apparently two days of LOTS of driving and being emotionally drained from the kind of conversations appointments with Kendall’s doctors engender can REALLY zap you when your heart is already doing a good job of zapping the little energy you can muster up in any given day. It was super sucky. And I ended up just doing a lot more driving around yesterday to get a few little errands done and drive karissa back and forth to a playdate.

Don’t get me wrong – i LOVE the boring days. I’ll take them in any quantity we are blessed enough to get them. But when they come with bonus headaches like I ended up with last nite – no thank you.

so we’ll just get back on the wagon today and keep truckin’ forward!

 

I do have a few things coming up that I am SO stoked to share with you!

image 1.) Our AMAZING friends from up north are once again hosting a fundraiser for our family/a foundation we are hoping to start in Kendall’s honor that will help other families like us! Last year’s benefit was such an amazing boost to our family in a very very difficult time, and allowed us to be able to provide a few things for Kendall’s care that insurance does not pay for. It relieved a huge burden on our family and we would not be here where we are today without the amazing support and help of the people who came to this fundraiser, the baseball fundraiser, and gave to the gift card drive our awesome neighbors held for us. Without getting all maudlin and morose about the cost it takes to raise a kid like Kendall and keep her at home – let’s just say that it would not be possible without the extra help we have received. We are above and beyond grateful – there are simply not enough words to EVER say thank you to everyone who has ever helped our family in any way. With this benefit this year we are SO excited to be able to start a foundation that can help give to other families in the way we have been blessed. I know that tickets sold out SO quickly last year that many of our local friends from down south here were unable to attend. So I am giving you all fair warning now! The email to purchase tickets is on the flyer above, but it is :

hopeforkendall@gmail.com  – Mary is the one who mainly checks that email and handles the ticketing – so let her know how many tickets you would like. At the benefit we will be having a Trivia Night. It was SO much fun last year – if you have ever played Trivial Pursuit with about 200 of your closest competitive friends, you MIGHT have an idea of the kind of crazy atmosphere we had going on there. It was crazy fun. i’ll just warn you – stock up on your obscure pop culture knowledge! There is also a Silent Auction that will be happening – and if you happen to have a small business or want in any way to help by donating an item for the Silent Auction – you can let Mary know at that email, or you can always contact me too!

The awesome team running the benefit this year is actually staffed by some really awesome “young adults” (we used to call them teenagers back in my day!) – who have put together a cute website with an amazingly done video that they made of our family. You can go check it out at www.hopeforkendall.org  

If you do click on over and watch that video – I must put in a caveat about my appearance. Yes I felt as absolutely crappy as I look. I begged and begged Bradley to just do a voiceover with a pasted in pic of Kate Beckinsale sitting in my spot on the couch – but he refused. So you get me in all my “up at 6 am to go for testing at the hospital after a hard week of not being able to breathe or sleep so I have no makeup on and threw on whatever fell out of my closet and hadn’t done my hair in days” glory. In the back of my mind when we were filming I had the briefest of thoughts that I should go look in a mirror and possibly do a little SOMETHING to my appearance – but I was so tired, and they had been there dealing with my banshees all morning already, so it is what it is. there. Now i’ve gotten that piece of extreme vanity out of the way.

So – if you are local and can attend on February 10th – we would LOVE to have you and would be deeply grateful for your support of our family and the hope we want to bring to other families in similar situations.

I will have more about the fundraiser coming up in the next couple of weeks – but wanted to get it on everyone’s radar!

 

2.) And the second thing I am super excited to share with you is that I am hoping to resume my “Fauxtography Friday” segment here on Terra Talking. I had started this a few years ago and I think I had about five total weeks where I remembered it – but I want to be able to start answering “en masse” some of the questions I am asked on a continual basis! I don’t claim to be the worlds foremost expert on photography (hence the “FAUX” in FauxFriday1 Fauxtography!) – but I believe that anyone can rock any camera if they know a few key things and practice practice practice – So I will be starting that back up and also sharing it on our 2Sisters Photography blog!

If you have any questions that you’d like me to address on Fauxtography Friday – email them to me at  terra@2sisphotos.com   If I use your question, I will have a special prize (and I promise it won’t just be extra medical supplies!)

So look for that starting with this Friday’s post!

 

I am sure I have other things I am excited to share – but I have to go pick up a banshee from preschool and actually start writing Friday’s post!

Thanks for checking in here! Hope the New Year is off to an awesome start for all of you!

 

terra

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