Monday, May 4, 2015

Our Version of Narnia: A New Direction For The Blog

My Keurig is in time-out. See how sorry he looks, with his head down and shameful. I apparently just made it a he. See, I need coffee to make thoughts into words into sentences, but he's not helping. According to Google, I need to 'de-scale' him. I've tried this a zillion times in the last month, but never tried each of the steps all at once, which is probably what they meant for me to do in the first place. So this morning, after spending 30min trying to get one 8oz cup of coffee started, I gave up, grabbed the keys, raced to the store for vinegar and paperclips (to de-scale it clean it, according to Google) and Radinas on the hill for a replacement/temporary intervention.

Today is Monday, incase you forgot. I did. Alan did last night when he set his alarm.

Monday. I used to be in love with Mondays. For the past few years, Monday was our family day. Our day off. Our disconnect-from-the-world day. Our sleep in, drink coffee Saturday. Only it's on Monday. But as of this last month and a lot of nursing schedules trying to get worked out, my husband's day off was switched to Thursday so that I can be night nurse on Wednesdays and have help on Thursdays, which we do ourselves. It's complicated. Praise the Lord, Chloe's day nurse is able to pick up Mondays now as I was doing Mondays alone as well. I love the days when it's just me and the kids, but let's face it, schooling doesn't happen, laundry barely happens, and cleaning...what's that?

So it's Monday. It's a Monday, in the truest sense of the word. I understand again why people say things like, "Well, it's a Monday."

Like when the Keurig broke before I started this Monday.

Like when Chloe puked all day yesterday, a phone call to doctor who said try Pedialyte all night and call after an hour or two of regular feeds in the morning.

Like calling the doctor back this morning to say Chloe puked 20ml...half an hour's worth of feed, aka half a turkey dinner, within the first hour of being back on formula.

Like hearing the doctor laugh a bit and sigh and say of course she did. Chloe throws us for loops. She keeps us on our toes. Hang on...I need to go turn on her question mark light for the day...

Like when our sweet middle child fell outside, screamed in horror as she ran to the side door and announced she'd falled (I would correct that to fell, but it just helps go to show how important it is that my Keurig obey. I seriously typed falled and didn't realize it till re-reading this) on her bum and I stripped her to her bear bottom in broad outdoor daylight to check.

Like emailing our nursing company about possible scheduling issues and how to come up with a new schedule pronto because our beloved weekend night nurse is leaving. This, after just spending the last month trying desperately to get a night schedule figured out.

Like sitting by my phone trying to get a few things done, but scared to run to the bathroom or go out and help the kids or play with them without fear of missing this important phone call from her doctor about what to do for the little stinker's formula. The fact that she's still having belly issues and we can't even sit her up without her puking. Seriously. Tried her bumbo yesterday. Puked. Tried holding her. Puked. Tried putting her in her swing this morning. Puked. Something isn't right. It's a question mark and her team and us are all scrambling to figure it out so she can be a happy baby again, and hopefully in time for her heart surgery in a month or so. Like pulling our hair out some days wanting to help our daughter eat and hold her and put her on her belly for belly time (last belly time was I think Christmas), or hold her up on my shoulder for snuggles, but knowing it'll hurt her and she'll get sick and then sick equals tired and tired no food equals restless and the cycle continues...

Yep. It's Monday.

But we power through and love each day the Lord grants us. Even the Mondays.

Many have said things lately like they don't know how we do it. Well, this post is a slight introduction to address that question. As in, this is a typical day for us.  At one point, we felt like putting our blog words into book form might help explain our journey and encourage others. However, we waited, sometimes patiently, sometimes not, sometimes wondering and praying over this blog, and realized that I believe the Lord meant to use this to help show a glimpse into the life of a special needs or medical family. Not a book. Just daily or weekly writings to show what our world is like. I was talking with a friend recently trying to explain this, and explained that before we had a special needs child, we didn't know hardly a soul around that had a special needs child or was a medical family. We knew of a few, but didn't know much. After having Chloe, our world opened up to other families. Our eyes were clearer seeing things new and brighter in our more opened world, and many families began to reach out and say hey, we have a special needs child, or our son/daughter has a heart condition, or my son/daughter has a gtube....

Our hope is to take this blog into a new direction. To no longer only write of how Chloe is and how she's doing and what prayers we would ask for her, but to share glimpses into what our daily life is like as a medical family.

(Our) Definition of Medical Family: One in which a member or members spend many hours daily caring for or having interactions with doctors, pharmacists, hospital visits, procedures, appointments, etc. Where there's not one day that goes by without the use of gloves or syringes or phone calls to PT/OT or other therapies. Where mundane tasks like mowing or groceries are centered around nursing schedules and feed breaks.

Some wonder how it all works. How we do it. What it looks like. Well, we didn't know until we willingly (meaning did not choose abortion for our own convenience) placed our hands on the delicately carved knobs and opened a door into that of the unknown, much like Edmund pushing his way through the coats in the wardrobe and into a whole new world that he didn't expect to see. This is our Narnia. This is our search for the Lord on a daily basis, and learning each day something new, or something hard, or something weird (medical families have a weird sense of humor ;) ), or something scary, or something encouraging....

And something to point out: This blog is not written for readership. It's written for realship. We've learned on this journey the importance of being real, honest, and that it's all relational. Relationships mean so much in this life. It's what connects us, what keeps us going. Our relationship with the Lord and our relationships with others are what mean the most to us. For that reason, we're not writing to watch the numbers climb on the "this post has been read x amount of times" page as we begin to share more of our lives here, but instead, our hope is simply to share our lives on this journey, the atypical life. It's not a normal one to many, not the American dream many dream of for their family, but it's as normal as it's going to get for us. Many medical families withdraw from so much because we're so...not normal? We've felt ourselves have to do it at times, like winter during cold and flu season. But our hope, perhaps with this blog, is to break that cycle. To hopefully share the joys of this life, things other families might not ever see or endure, but the joy and hope that can rise from it. It's time that society not only accept people and families like ours as "normal", but help us to navigate into the mainstream life, not be separated out. I often wonder if you added it up, are there more medical families in this world than our American standard of "normal" families. But I often wonder if part of this is because we withdraw...because we don't know how to relate to other families, perhaps because that's what our lives used to be and perhaps we struggle a bit with that...thoughts to address in coming posts... Oh I'm excited to dive into these topics!

But for now, welcome to our Narnia. Welcome to our Mondays. Welcome to a deeper part of our adventure. We hope that this new direction of the blog will encourage you. You might be a medical family and struggle with things like us, or perhaps a normal family hoping to have a glimpse in to understand more. We hope that you'll find hope, love, joy, and deepening faith in Jesus as you walk this with us.

Best part of Mondays that I never knew before: Radina's has free shots on Monday.  And by Radina's I mean our local coffeeshop. And by shots, we mean espresso or caramel or raspberry flavoring. Couldn't have written this, or tackled any of my day, without my triple raspberry mocha with double shot of espresso.

Welcome, Monday. Bring it on!! Now to homeschool, wait for a call back from the doctor, and work on tearing down a big girl crib to bring downstairs today ;). Someone's outgrown her mini crib!


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