Project: Life


I was sitting here feeling like i wanted to blog, needed to blog, needed to find some way to express all that is going on in my head and heart these days…and was stumped on a title. Some days I know what i want to talk about, and the title just flows from there. But other times I sit there and hem and haw over THE PERFECT TITLE, and I end up just zoning out or getting distracted by the little noise from tweetdeck or getting whisked away to prepare the 792nd snack of the morning for my starving horde of wildebeests children. Today was one of those “stare blankly at the screen trying to sum up all my emotions into one short title that makes it easy for Facebook and the google bots to convert into a link that people can click on” type of days. And then i got the little alien noise from tweetdeck, and I saw a link to a “project life” trending topic, and it just struck me – THAT’s what I’m doing. I am always and forever starting “projects”, or WANTING to start projects, or figuring out what project i am going to tackle for that day – heck my old job was developing “the projects” – literally (low income housing.)

And sometimes I get frustrated that all of this STUFF we deal with every day (tubes and medical supplies and doctors offices and therapies and oh yeah, the housework, the kids stuff, laundry, ad nauseum) – gets in the way of my projects. I’m gonna let you all in on a little secret, cause i’ve decided that if i am really going to be REAL and ME in my blog, i’m gonna have to just let you all see the craziness that really goes in my mind. Deep down inside, I like to sometimes pretend like I’m an artist. Which I am most definitely NOT. And if you’ve ever seen me attempt to draw you a map or make the ideas in my head have a visual attachment on paper, you know what i’m talking about. But still – there is something hugely satisfying to me to sit surrounded by my “scrap crap” as Ben lovingly refers to it – and to start gluing paper, adding paint, sanding here, inking there…somehow trying to get the thoughts out of my head and my heart and into a tangible, viewable, real life interpretation. One that my girls can look at some day and know how much i loved them. I know I am rambling here, but I am hoping that somehow, in some way, you understand what I am saying.

I like to be “creative” or “artsy-craftsy” as one of my friends likes to call it –  and sometimes I can’t do that because there’s too much other real stuff that has to be done. It’s a constant tug and pull. and the more tugging from the creative side of me I feel, the harder the pull of real life is. It makes me yearn for one, and be repulsed by the other. Because at the end of the day I feel like I have had no time for ME. And believe me that I get it – I know that sounds insanely selfish. When you sign up to become a mom, you pretty much sign your SELF away. You give a little part of you to this child, and a little part to that one, and the more you have the less of you there is to go around. It is the miracle and the curse of being a mommy, a wife, a homemaker. I watched my own amazing mommy do it, and I see it in the lives of so many of my friends, both the real life and the imaginary “online” ones. And I think this phenomenon is multiplied times a billion when you have a child with special needs, compounded even further if those special needs involve medical complexity/fragility. You are giving all of yourself, and even parts of yourself that you didn’t even know you possessed to keeping that child alive, to battling doctors and insurance companies and hospital policies and special education laws in an effort to give that child a shot at LIFE.

And when the pressure is on and you are in the moment and you hardly have time to string more than three words together as a coherent thought, you just DO IT because you have to. But sometimes, when things are going ok, and there are no MAJOR mountains to be crossed, no Red Seas to part, and you kind of start to let your guard down a little bit, you realize that there’s nothing left to hold YOU up. And you start to realize that there is very little YOU left of you, and that just isn’t a very fun discovery to make.

But anyways – all of that is to say that there is this spark left inside of the me that I know I used to be. That creatively artistic (code for messy and unorganized) side of me that loves colors and paints and pretty things and special pens and breathtaking photography (not mine!) and to tell stories that can make people laugh and cry….these are all the things that I miss. I need to find a way to merge the side of me that can sort an entire box of dressing change kits, grip-loks, opsites, and sorbaviews in ten minutes flat with the side of me that can also sort 36 fine point markers according to their positions on the color spectrum in ten seconds flat. It is a journey. All of life is a journey. And no one gets to really know where they’re going because even if you planned and planned and planned for years – life takes you by surprise. And the road twists and turns in ways you cannot ever be prepared for.

But at the end of the day, the best you can hope for is that you are able to hang on for the ride, and find a way to enjoy it while it lasts. So that’s what I’m doing. I’m blogging again for ME, to document MY ride on this crazy journey of life. To be able to show my girls some day – look, it wasn’t that i was always angry or grumpy – I was just dealing with this, and this and this, but I ALWAYS loved you.  To prove to myself that I can crawl through 500 yards of stinking foulness and come out clean on the other side. It might not always be pretty. In fact, I can pretty much guarantee that as I start working through some of this heaviness, it pretty much won’t be. I will not change how I’ve been blogging for almost 7 years now – and that is to keep it all pretty much out in the open. Say what I feel like. Tell my story how it really is. Not gloss over some of the really really shitty stuff my baby has to deal with, or that the rest of us have to watch her endure and wish we could just take it away from her. Because someday, she WILL be able to read her story. She will need to know how very very strong she actually is. Her sisters will need to know that for every bit of strength Kendall had to have, they had to have more, because they were so often doing it on their own, without their mommy there. And I want to be able to tell them where I was.

So this is it. My Project: Life.  Life that sometimes has bad words and unshaved armpits and a sink full of messy dishes. Life that sometimes means I can’t do it all by myself, and sometimes I can.  Life that sometimes means things aren’t all sunshine and rainbows, and in fact it is the very anti-thesis of sunshine and rainbows. Life where somedays you just want to take a few black permanent markers and fill in all the smiley baby faces in the magazines, or you yell back at the TV when sitcom characters are freaking out over ear infections, scrapes or a broken arm. april11blog2 When you break down crying in the baby swimsuit section of Target because as adorable as those swimsuits are, you know your baby won’t be wearing one this summer because she has a large plastic tube coming out of a hole in her chest and bloody sores all around it from where her skin has broken down due to constant adhesive exposure. But for just as many bad days as there seem to be, there are the good days too. Days when you are crying tears of joy at the first time you see your baby walking in a store with her sisters, not having to sit in the cart the whole time because she’s just too tired. Good times like when you realize it has been ONE WHOLE MONTH that you’ve gotten to sleep in your own bed and haven’t cursed the 3 little wooden boxes of various heights that make up the “hospital bed” you sleep on when your baby is inpatient.

There you have it. Where I’ve been. What’s going on. I realized that if i waited for it to always be “a good update” or the kind of blog post where I do’nt feel like swearing every fourth word, it was going to be a VERY. LONG. TIME. until I updated again. So don’t say I didn’t warn you! I hope that you’ll stick around, but I understand if you don’t. I have loved getting to connect with so many people because of and through this little blog. I really and truly cherish each and every comment or email that you send me. They are the “conversations” by which I feel connected still to the part of me that used to hang out with my friends, go to church, talk to people, have FUN. I so so so hope to get back to that place again soon.

It has literally taken all day to get to this point. All day long to pour my heart into some words, to try to make the crazy thoughts that spin around in my brain make some sort of logic and sense and force them to fit into what i THINK life should be like, how I can share it with the many of you who do continue to check in here, send me texts, message me and say that you’re worried, and how am I doing, and is everything ok with kendall. I don’t blog because I feel like I “owe” anyone anything – don’t get me wrong. I do know that there are so many of you who are faithfully praying for her, and for our family, and I do appreciate that. so yes, some updates are simply to keep you all in the loop. But most of them, they’re just the things going on in our life right then. the good bad and ugly that someday I may want to remember or look back on. And maybe I won’t. But for right now, this is how it is.

I don’t know how to end this one good cause now its been seriously like a hundred hours since i started this stupid post and i am tired and sore from dance class and really don’t know where to begin or where to end with so much stuff that is just THERE in my head.

So i’ll just do another post tomorrow with more detail on what else is going on.


peace out homeslices.



(in deference to the amazing genius of people out there smarter than me who came up with this title(project life), I am not trying to “steal” it – I just had a moment of realization when it popped up on my twitter this morning! If you are interested in the “real” project life album series – google it! There’s some pretty awesome stuff out there if you are so inclined to create your own project life scrapbook/journal!)

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  1. Hugs!!! It is bizarre to be walking through just crappy stuff to deal with, instead of emergency, panic stuff to deal with. It feels very weird. Not sure if your doing it…but when I was doing it…I was looking on the outside in often. Which is just strange to think…but it’s like in the weird universe called special needs/medical fragile mom…when you have a chance to breath and reflect…it gets so weird..that you (well I) exit my own body to accept how things are going on.

    okay rambling anyways…that is what it was like for me. It (at least for me) changed eventually. But it sure took a while.


  2. hang in there Terra – i know i usually lurk without commenting, but much of what you said resonates with all of us as mothers. We all lose ourselves along the way- I know that what you are dealing with is WAY more than any of us, but know that you are not alone. We all pour ourselves into our kids, families etc. and we lose our identities along the way. You will get it back – just remember to try to grab a minute here and there when you can – and if that’s blogging about the good bad and ugly, then so be it. Life is like that – and if someone is blogging, facebooking or tweeting rainbows and sunshine all the time I know they are full of crap. i don’t believe a word of it. You, on the other hand are real and truly amazing. We all have challenges and just deal with it all as it comes along – the fact that you can keep a sense of humor about it is refreshing and keeps you real. Praying for Kendall and your family – you will persevere!!

  3. I just found my way here from Eithene’s blog. I’m a mom of 8 (3 – 17) and my 4 yo son has mito and is TPN dependent. This post sums up so well a lot of what I’ve been thinking the past few days – wondering where the “old me” went and if I’ll ever see her again. Wondering if I’ll ever just be a carefree mommy ever again.

    Anyway, I want you to know that I get it. I really do – right down to the crying in Target part. If it’s OK, I’ll add a link to this blog from Noah’s blog. We have a whole section of links for children that need prayer.

    I’ll be praying for Kendall and for all of you as you face this new yeast sepsis.