Man crush

Back in the spring of 2005 I met Brandon for the first time.  If I’m being honest, I can’t say he made a huge impact on me that first meeting… he felt differently about me (wink, wink).  I mean, we were in a staff meeting – I was in a relationship – I was not out looking for my future spouse, let’s just say that.  Anyhow, the following fall, we spent a lot of time together and became fast friends.  While some of his quirks drove me up the wall (and still do some days… the feeling is mutual, I’m sure), some things about him stood out to me in the best way.  There was a night when we made a run to Kroger, for example.  It was cold and rainy, dark, and I was in a hurry.  When we got out to the parking lot, there was a couple with their hood popped open whose car wouldn’t start.  He walked over to them and talked a bit, then came back to ask if I had jumper cables.  I didn’t… I told him we couldn’t help.  That’s when he started approaching random strangers asking for jumper cables and continued to do so until he found a pair (short pause to appreciate that Brandon HATES talking to strangers), then had me pull up so that he could jump their car and help them on their way.  I was annoyed, to be honest – but his determination to help made an impact on me. 

Fast forward to 2008ish when we were dating and living together – both out of college at this point.  We were broke.  Broke, broke, broke (channeling my inner Renee Zellweger from Jerry Maquire here).  We had a weekly grocery budget under $50 – that included eating out, toiletries and all.  Anyhow, we were enjoying a rare dollar menu meal at McDonald’s one day when a man came in asking people for money.  Brandon bought him a meal.  We’re never sure if people who do this really need money or are trying to scam people, so we were hesitant.  When we saw this same man fishing half-smoked cigarettes out of the ashtray outside and putting them in his used Altoids tin, we knew this man really needed help.  We went out the car and Brandon drove over to Walmart.  He bought gloves and a hat, some hand warmers and a coffee mug, some ready-to-drink soups and a collection of toiletries and then a cinch sack to stuff them all into.  We rushed back to find the guy making his way over to the gas station close to the McDonald’s and Brandon got out, handed him the bag, and gave the man a firm handshake.  I’ll admit that I was kind of freaking out at Walmart as he was throwing things in the cart… remember, we had a $50 grocery budget and we needed to eat, too.  Trust me, we never missed a meal.

As for me, I’d never really seen anything quite like this.  I really hadn’t.  These kinds of occurrences would become more and more frequent as the years went by.  Sometimes, the people he’d help would walk around the building, hop into a car, and speed off… sometimes, that would break our hearts.  Sometimes, though, we’d share a meal at a picnic area with a hitchhiker who had no family and was just passing through, thrilled to have some company to eat with (even if he wasn’t thrilled with the turkey and humus wraps we were serving up). 

Four years ago, Brandon was working construction.  He’d leave a job site in Troy and drive the hour and a half each night after a long shift of hard work so that he could stand over the bed of his little girl, shed some tears when I explained to him all that had happened that day, then crash his tired body onto the tiny blue couch next to me for the night.  He’d get up long before dawn each morning to again trek an hour and a half back up I-75 to the job site and put in another long day of hard, manual labor.  He did this six days a week for four months.  Back and forth, back and forth… tirelessly making a trip so that he could spend just a few minutes at her bedside and a few minutes catching up with me before we’d crash for the night.  It was during this time that he told me how he’d always wanted to go into medicine… how when he was younger he really wanted to be a pediatrician.  And how he really thought he wanted to go back to school to be a nurse.  As crazy as it sounded to me then, I knew it would be a good fit for him.

Another eight months or so would go by before Brandon would see his first clinical rotation.  I remember him coming home almost in tears asking me if we could make a trip to Walmart to buy some sweatpants, tshirts, socks and underwear for an old man.  He said that his patient was literally wearing clothes from the lost and found because he had no personal belongings… and this absolutely broke Brandon’s heart.  I knew that day that my husband was exactly where he needed to be.  And while, we can’t always just go buy clothes for patients or afford to buy them the things that they don’t have – we can always give them our love and attention – give them the dignity and compassion they deserve.  In this, Brandon has taught me so much!

Maybe some of you have only ever seen the sarcastic side of Brandon – he likes to whip that side out a lot.  Sometimes he likes to share his opinion, whether it’s welcome or not.  But there’s another side of him… a very soft, vulnerable side that he’s probably not thrilled I’m sharing with the world… a side that makes him a great husband… a strong father… an amazing nurse… a side that he doesn’t always share with the rest of the world.  This side of him came out in amazing ways when I watched him address his classmates during his pinning ceremony on Thursday.  He made the crowd laugh on multiple occasions… and delivered a speech that pulled at the heartstrings and moved me to tears.  I am so incredibly proud of this man!  SO INCREDIBLY PROUD!  I do not tell him this enough, that’s for sure.

In fact, when we were on our way home from dinner after the pinning ceremony, I started asking him about future plans and ultimately kind of jumped down his throat for not applying for a job that has great benefits for the long run… like retirement benefits.  But see… that’s me.  I’m the one who thinks of things like retirement and insurance and the practical things (like that $50 grocery budget in 2008).  He’s the one that’s driven by the passion to do what he loves.  And you know what – I was wrong in that.  I know that he’s not the one that’s moved by a killer retirement plan… that’s not his thing.  I look back at these pictures of him standing over Ellie’s crib… he’s the man that’ll drive three hours a day to spend a few minutes making sure this baby is okay.  That’s not practical… that’s passionate.  He’s the man that spent more than half of our grocery budget making a care bag for a homeless man… and yet, we still ate.  Me… I’m practical (emotional, yes… but practical).  He’s passionate, but very level headed.  That’s our balancing act, y’all.  So at the end of the night… a night when he killed it at his pinning ceremony… a night that was all about his amazing accomplishments… a night where we were out to celebrate the culmination of so many years of hard work on his part… I kind of blew it.  Fail.

But all of that aside, I want to share a snippet of what my absolute favorite part of his speech was.  This was a part after he’d made jokes about not heeding the warnings of the professors and how many days and nights were pushed through with the sheer force of determination and massive amounts of espresso.  Then he said:

“Then, there were the nights where no amount of caffeine was going to pull us through and we had to pick up another one of our nursing school survival tools: Our list of ‘whys’.  As in, ‘Why in God’s name would I do this to myself?’

My list started with my children, but particularly the strongest person I’ve ever known: my daughter.  Standing three-foot tall and thirty-two pounds, she’s the epitome of determination, strength and probably one too many curse words for a four-year-old vocabulary (I may have had a part in that).  During the longest of her inpatient stays, four of the first six months of her life, battling the increasingly debilitating effects of a congenital heart defect, she taught me more about life than I had gathered in the twenty-nine years prior.

It was also during this time that I added more ‘whys’ to my list: Austin, Khloe, Jaxson, Jack Jack, Dominic, Tillery, and countless others.  Reluctant tenants of the Ronald McDonald House, our families would share so many tears, laughs, and even a humorous dream of the ‘complicated kiddos community’ we would one day form – I was designated to be the nurse.

Though distance has separated us, and some of these little ones remain with us only in memory and spirit, these kids, their families, and the incredible nursing care provided to them continue to be a part of what pushed me into nursing – and what would drag me through when I wasn’t sure I was going to make it.  To be able to care for incredible souls like these – that is the dream I long for.

So, I challenge my fellow classmates: In those moments where you think you’ve given all you have and start to question if nursing was the right choice, re-evaluate YOUR list of ‘whys’.  For the premature newborn struggling to breathe with lungs that aren’t quite ready, for the newly widowed husband or wife of the hospice patient who’s finally resting peacefully, for the children dealt the difficult hand that need every resource available to live their best lives – always remember your why.”

I don’t think I need anything more to close this out with… I think his words are perfect.  And I think it’s safe to say that he’s already a great nurse… his heart is in the right place… and this is absolutely the right career for him!  Proud of you B!

Rocking the mic!

Pinning :)

Proud family/cheering section... only PART of the cheering section... Beech, Sheryl, Denny, Tiffany, and Whitney were also there.  This was just my early shot when I was trying to entertain the kiddos.

Throwback to 2014 - a very tired man looking over his very tiny Bug.

Bargaining: the future is still bright for our children

Let me start by introducing you all to something my colleagues and I are all too familiar with: the reaction roller coaster (allow some time for eye rolls from all Health+Fitness employees).  For those of you that aren’t part of my work family, this may be a new concept to you.  Let me give you a quick synopsis:  when presented with change, we all go through six different stages in our transition as we “embrace” the change… and we can progress through these stages at our own pace, even slipping back and forth along the slopes of this model.  The stages age: Denial, Anger, Betrayal, Ugh, Bargaining, and finally, Acceptance.  When late last week, a large school district in our county announced that they would be pulling their support of our county preschool program back to an in-house program, taking all of the kids on IEPs out of this county preschool program back into their district without having any details or plans ready to present on this topic, my reaction sped past Denial, and festered on Anger for at least 24 hours.  I was absolutely HOT about this.  Since then, I’ve had some time to think about exactly how to react and how to explain to the community what this actually looks like from a parent of a kid on an IEP.  So I’m not here to point any fingers or place blame.  I’m simply making this post so that those of you on the outside understand what DOES happen to kids on IEPs all over our state… and what we’ve come to know here in Shelby County.  And finally, I’ll give you all a glimmer of hope – teaser alert:  I’m solidly standing on “Bargaining” right now.  I don’t see myself moving past this, though. 

First, let me share a few stories of what is perfectly acceptable outside of Shelby County.  I’m not saying anything bad about these situations, but I don’t think parents in Shelby County know how different our situation is here.  For my friend living in an adjacent county, she brings her son (on an IEP) to his half-day preschool and they set goals just as we do.  She’s been told on multiple occasions that she should be conservative in her goals for him because holding the therapists accountable for meeting those goals seemed tough.  On top of his half day preschool, this family takes this little boy to an off-site therapy program at a local hospital for 2-3 appointments each week.  They also hire a private physical therapist to come out to their house to give their son additional PT because what he’s already getting isn’t quite cutting it.  Over the summer, this family has their little boy enrolled in another private therapy program that costs the family about $300/ month.  This is a healthy, good example.  This is a little boy that’s doing well and has parental support that is fighting like crazy to keep him on pace with his peers.  But were you keeping track of how much of his therapy had to be done outside of school hours?  How much of the therapy his parents were transporting to and from?  Almost ALL of it. 

Here’s what’s different at Shelby Hills: Ellie goes to preschool half days and is transported to and from school (I know that not all kids qualify for transportation… but some do).  Ellie gets 1:1 sessions of Occupational, Speech, and Physical Therapy every week.  She also has sessions where OT and ST push into her classroom and do sessions for her entire class (twelve kids) so that they’re all learning key concepts together and they have gym together as a class where they practice specific things worked on in PT.  Now that she’s out of Early Intervention, she does not have therapy over the summer, so we do have to supplement there… and we’ll likely take the same route as the family listed above next summer with the specialized therapy – but for the nine months of the school year (and through all of the Early Intervention program), we never had to go to a single outside therapy session.  And the note on IEP goals: when we sit through IEP planning and meetings in the spring, I’m sometimes shocked with how aggressive the goals are that Ellie’s therapists are setting for her.  However, these are people who know her very well – they work with her every week (no contracted out, rotating faces here).  As for this year, she’d met all but one of her IEP goals for this school year by the time we met for our first parent-teacher conferences.  While many programs would check the box as complete, Shelby Hills said, “Okay… let’s set the bar higher.  She can do so much more.”  So in October, we were already revising the IEP goals for this school year and shooting higher – suggestions offered by her therapy staff.  Does this mean more work for them?  Absolutely!  Because, let’s be honest, I’m a very busy mom… we spend our free time cuddling and playing… not practicing walking up and down steps.  The credit for Ellie’s success belongs firmly in the hands of those therapists who know her well and push her a little further each and every week.

Does the state mandate that Ellie have 1:1 therapy sessions?  Nope.  Does the state mandate that her class size in Shelby Hills only have 12 students in it?  Nope.  Here’s another fact:  Shelby Hills has a 1:1 ratio of typical and non-typical students in their classrooms.  So in a class like Ellie’s, there are six kiddos with some form of special need (likely on an IEP) and six more kids in that classroom that have no special accommodations (typical learners).  This classroom has one teacher (holding a master’s degree in special education) and a paraprofessional.  Some classes have additional aides in the classroom, too.  So the ratio of teachers to students is no higher than 1:6.  That, my friends, sets these kiddos up for plenty of individualized attention and success in their most formidable education years.  Do you know how many kids on IEPs CAN be in a classroom?  I think it’s 20.  If Ellie were in a classroom with 20 kids on IEPs, I cannot imagine that she could even focus, let alone progress at a noticeable rate.  And in case you’re in our shoes and pushing for full inclusion in kindergarten, it’s crucial that Ellie sits in a classroom where 50% of her peers are typical kiddos.  This benefits both the typical and non-typical learner.  I can shove studies down your throat on this if you want… but seriously, just trust me on this.

I have another friend who I met while attending a class on how to enhance the educational success of children with Down syndrome.  In talking with this mom, she told me about her son, now in first grade, and strictly in a special education classroom.  When she started explaining how this happened, she said that when the district came out to assess him for preschool (this is called an ETR: Evaluation Team Report), they “couldn’t recognize American Sign Language as a legitimate form of communication”, so they rated him so poorly that he wasn’t able to attend a preschool classroom with typical kids and as a result, wasn’t able to attend kindergarten in an inclusive setting, either.  This mom went on to say that at the time of the ETR, her son was not quite 3-years-old and knew over 200 words in ASL.  And they said that he couldn’t communicate.  I looked at her with what surely was the most horrified look in my eyes.  Ellie was three at the time and signing about 150-170 words… communicating fluently with us through sign.  Kids with Down syndrome are generally very late talkers – Ellie especially so because she spent so much time completely silenced by her trach.  We worked our tails off learning sign language and teaching her as much as she would pick up… and boy, did she pick it up.  At three, when she finally started to sound out a few words with her mouth, we kept signing, but let the ASL drop off a bit.  When we enrolled in Shelby Hills, Ellie was assigned to a classroom with a paraprofessional that can fluently speak ASL.  She was literally speaking sentences in ASL to Ellie at open house… I was in tears.  Instead of closing that door on us… and putting us in the position that this other family was put in… they made arrangements so that Ellie could thrive.  Furthermore, Ellie’s class learned to count and fingerspell the alphabet.  Her classmates all learned enough ASL to communicate with her last year.  That’s incredible, y’all!  Incredible!  I’m still heartbroken for the family whose son’s vast vocabulary was written off and they were told that ASL couldn’t be recognized as a viable form of communication.  But the reality is… this stuff happens… more often that you’d ever imagine.  That same district would never tell the parents of a child with hearing impairment that same thing, I guarantee that… but for whatever reason, they felt like it was okay to say to a family whose child had Down syndrome.  Side note, that little boy is talking fluently, just like his peers, now… but is so far behind his typical peers and has never been in a classroom with typical peers… so his parents aren’t comfortable making the transition out of a specialized classroom.  Heartbroken.

I have stories like these for days.  Stories where other districts were working within the state guidelines… or justifying themselves just enough that parents felt like they didn’t have other options… and the services rendered were not up to par with what we’re used to getting at Shelby Hills.  Can I share just one more story?  This is a story from right here in Shelby County… but not from preschool.  This is a story about the dedication of staff at Shelby Hills (someone on staff that works with both Early Intervention and Preschool).  There’s a family in our county who has a little one who was doing great with therapy… but wasn’t growing much at all.  This little dude just wasn’t getting any bigger, despite lots of efforts from therapists and his pediatrician.  He was referred to a specialized feeding team at Cincinnati Children’s hospital.  When his mom told his Occupational Therapist about this appointment, the OT asked if it’d be okay if she came along.  For those of you not from our area, we live a full two hours away from Cincinnati Children’s hospital.  And for those of you confused at why OT would want to go, when babies qualify for Early Intervention services, OT usually serves as a feeding therapist for a long while, if needed.  Basically, this therapist was offering to drive all the way down to Cincinnati to attend this appointment for her patient so that she could meet the feeding team and make sure that she was on the same page as the feeding team.  She could share information with them to let them know what they’d tried from an OT perspective and they could give her pointers on how she could customize her treatment plan to better serve this little guy.  If you’re not completely amazed right now, you weren’t paying attention.  This OT went way, WAY out of her way… far beyond the expectation of her job role to make sure that she would give the absolute best care to this little boy and his family.  Why did she do this?  Because it’s not about her at all.  This same therapist came out to our house in the evenings when she was doing feeding therapy with Ellie because we were struggling with how Ellie was eating for one of our nurses.  She worked late and flexed her schedule to make sure that she was able to meet with our evening nurse and get Ellie’s feeding straightened out for us. 

So, are we spoiled in Shelby County with the service we’ve gotten at Shelby Hills?  Without a doubt.  We are absolutely spoiled.  But I don’t think all of the parents here know this.  I don’t think they know what losing a resource this great actually means.  But on the flip side, do I think Ellie deserves this kind of care?  You can bet your butt I do.  Without a doubt.  I’ve already been asked why I care so much about this change… after all, Ellie only has one (maybe two) more years of preschool left and we’re not even in the school district that’s impacted by the recent decision.  I care – I care with every fiber of my being that all of the kids in the county have the care that they need – not the minimum level of care that they have to have – but the amazing, over-the-top level of care that they really do need to thrive in life.  Even if Shelby Hills were able to function at the same capacity even after this change happens (which is unlikely), I still care so deeply... because it's about those kids.

The problem with some district officials, I think, is that I’m not sure that they look at Ellie and really SEE her.  When you look at Ellie, do you SEE her?  Not just as a cute kid with a disability.  Not just as an obstacle in the classroom.  Not just as a means to an end.  Certainly not as a solution to a budgeting concern.  Not as a dollar amount that the state will send to your district for offering her a certain level of services.  Do you instead see her as a person full of potential, hopes, and dreams?  Do you see her as someone who deserves MORE?  More than the minimum necessary?  More than what the state mandates?  More than a few minutes a month of specialized therapy? 

I can promise you that the staff at Shelby Hills not only sees her as a child with hopes, dreams, and potential… they treat her like a child who has opinions and a voice that matters.  They treat her like a child whose complex history matters, but also as a child who is capable.  Capable of academic success and real friendships with all of her peers.  Worthy of dignity and an abundance of attention.  You see, parents… especially parents who are directly impacted by this change – those who ARE in the district impacted… the good news here is that you have a choice.  You have a choice when you sit through your IEP meetings.  Your child has a right to attend school in the Least Restrictive Environment.  So while this is all very daunting.  Know that you have power – you have the power of bargaining here.  We can ensure that our kids still get the utmost care – the level of acuity they deserve.  When you’re staring down your first (or next) IEP meeting, ask yourself the following questions.  If your district isn’t able to check the boxes in the way you feel is LEAST RESTRICTIVE for your child… then you have the right to keep your child in the school that does provide these things.  As parents, you absolutely know what is best for your child. 

•           What is the teacher to student ratio in your classroom?
•           How many aides are available in each class?
•           What resources are readily available for non-typical communication?  ASL trained staff/communication devices, etc.
•           Is your classroom handicap accessible?
•         What is the ratio of typical to non-typical kids in your classroom? (remember, if you plan to do full inclusion in kindergarten, this is a very BIG deal)
•           Is there a nurse available full-time in the building? (this is more of a concern if your child has any special medical equipment/needs… this is a biggie for us)
•           How many hours per month will my child have of 1:1 OT, PT, and Speech?  (not combined therapies… and NOT combined minutes with other students… that’s important)
•           What kind of modification ideas do you have for daily tasks? (I have some examples of what they’ve done for Ellie if you’re interested)
•           Ask to tour the therapy rooms to make sure the environment seems engaging and age-appropriate.
•           Will my child be working with the same OT/PT/ST throughout the year?
•           When/if my pediatrician orders additional therapy hours, how will that be handled in the school?

This is not an exhaustive list… just some ideas to get you thinking ahead of time.  I am picking the brain of a friend of mine who is a lawyer specializing in inclusive education advocacy to create a full list of things you may want to think about.  Contact me if you want a copy of that to use as you prepare for your IEP.  I do plan to post again on the benefits of an inclusive classroom.  Until then, friends, thank you for reading along and thank you for hanging in through this lengthy post.  And know - I haven't even scratched the surface on the list of ways that Shelby Hills, Wilma Valentine, and the Shelby County Board of DD has gone far above and beyond their call of duty for the families in our county.  Keep fighting the good fight.  Much love!

Update on my 20k/day Challenge

So it’s now been two weeks since I posted that I was challenging myself to walk 20,000 steps per day.  So far, I’m not doing too bad.  Here’s a recap of how it went down:

Step 1: This was the week before I started walking more.  This was the week where I was inspired to work on cleaning up and purging junk out of our house.  That alone was energizing and motivating, but of course, didn’t change a darn thing about my waistline.  But this was such a refreshing task, that I wanted to share it with you all.  I happened upon Allie Casazza’s blog and she had a 3-weeks to Minimalist Motherhood link at the top of her page.  My blog is in no way/shape/form sponsored by anyone, so this is strictly a plug for something that I found useful and wanted to share.  I did not purchase the package when I went through the free class – maybe I will later, but for now, the tips in the webinar were enough to get me rolling.  The thing I loved about it was that it wasn't so much about the stuff.  It didn't tell me that I need 5 shirts and 2 pairs of shoes.  The focus was on thinking about what kind of a mother you wanted to be... what kind of mother you deserved to be.  And for me, that was the ticket.  I’m far from perfect on this minimalism deal… but I’m a lot better than before.  No longer am I trying (and failing) to play catch-up.  This is silly, but one of the best things is that I’ve sworn off laundry all weekend.  Now, if they kids say, “hey, let’s go to the park”, we go to the stinkin’ park and can do so without feeling like I need to be doing something else.   Being able to go to the park or invite someone to stop over without freaking out about the house... that's some serious freedom... and certainly helps me be more of the mom I want to be.  So for me, step 1 was about cleaning up my space.

Step 2:  This is where I started actually USING my desk treadmill.  I wrote about this a bit earlier, but it was really my first week where I cleaned up my routine.  It was nice to add another level on top of my clean space… I’m not at all a person who can adopt 7 new habits at once.  I’ve tried and failed at that many times.  I can start with one new thing, then slowly add more.  Maybe you’re like that, too.  Right now, I keep telling myself that if I keep adding a new layer each week or so, I’ll have all kinds of good habits in place six months from now.  So week 1 of this part was using my treadmill desk – and that week, I averaged between 14,000 and 15,000 steps a day.  Week 2 of this challenge is when I wrote my last post – challenging myself to get in 20,000 steps per day.  This took a considerably larger commitment on my part.  About halfway through that week, Brandon challenged me to drink a gallon of water a day, too.  Eeek!  To recap on these challenges:  I haven’t been perfect – that’s for sure.  I am able to get 20,000+ steps on weekdays because I spend 8+ hours behind my computer… and it takes about 3.5-4 of those hours walking at a slow enough pace that I can still type/write/speak during meetings for me to get in 20k steps.  Not too shabby.  I’m not as great on the weekends – and I’m okay with that.  I did realize that I needed better insoles in my shoes – more arch support, please!  When you add a gallon of water, you get about 4,000 steps in per day just walking from your desk to the bathroom and back – for real!  And I realized that I’m quite the sweaty beast at work now.  It’s a darn good thing I do work from my house.  I’m going through more clothes (because I cannot walk all day in jeans/capris) and when I’m off work, I’m thankful for the freedom of flip flops and to get my feet out of the socks and tennis shoes they’ve been roasting in all day.  Is that TMI?  Ha. 

Here’s the result of this, though:  my resting heart rate is down about 14 beats per minute.  Whoa!  That was a completely unintended benefit.  I don’t check my blood pressure often (because it’s never been a concern), but I can say that my high-strung hubby has greatly reduced his blood pressure by walking with me.  The first week of walking 20k steps/day resulted in a weight loss of 2.4 pounds.  Yahoo!  Remember, I didn’t do more than just that – I was still eating fast food and ice cream.  In fact, I probably ate MORE ice cream that week because I knew I was about to add a diet to the plan and I wanted to pack in all that frozen deliciousness beforehand.  That’s how I roll.  This week ended with a night out with friends – what a way to end my pre-diet week, right?  Awesome!

Step 3: Last week was my first week jumping back on the Keto bandwagon.  I know this will come with mixed reviews, but trust me, with an exercise physiology background, I’ve had more than my share of classes on nutrition.  I understand how my metabolism works… and no, not just from hokey websites and such.  I researched ketogenic diets for about a year before I tried it for myself.  I tried it in March this year – but only made it about two weeks before I lost motivation.  At that time, it was just me… without much accountability… and dang it, social gatherings made it hard and I just gave up.  I will say that my family loved the meals I was making and I felt pretty darn good after the first three days, so I knew that when I added the diet layer to my new routine, keto was my go-to.  As someone who’s had a weight complex (with either real or perceived concern) since high school, I’m certain I’ve tried just about everything.  This time, my husband was on board to try this with me.  I pulled a ton of recipes from dietdoctors.com and continued to read and absorb as much about this lifestyle from others I could.  If you have Netflix and totally dig documentaries, watch “The Magic Pill”.  This is the film that solidified this diet for me.  The results for brain function and development were incredible.  We have one kiddo with crazy ADHD and if we can stabilize some of that with diet, I’m in.  And Buggy – if we can give her brain the clarity it needs to function at its highest possible level, of course I’ll do it.  Now – Brandon and I are on a strict ketogenic diet right now – the kids still have some grains and fruits in their diets, but we’ve eliminated some of the processed yuck they were eating before.  So far, no complaints.  I take that back… the boys complained that we didn’t have Pop Tarts.  I said, “Sorry, I’m not buying Pop Tarts anymore.”  And that was the end of it.  After the first week of keto, I was down an additional 4.4 pounds.  That’s 6.8 pounds in the two weeks that I’ve been tracking weight.  That alone is enough motivation to keep me going.  The fact that I’m not hungry all the time and have freedom to function at full capacity without really thinking about food much – that’s incredible!  Clearly, step 3 is all about cleaning up my diet – I imagine I’ll be on this step of the journey for several weeks before I add anything else.  I’ll keep you posted.

I feel pretty great (although my legs are sore some days from walking so much), my house is clean – for the most part, I have more energy, I am not hungry, and I’m sleeping great.  Those are the biggest benefits for me – I’ll take any weight loss as a result, though!  So who wants to hit me up with their best Keto family recipe?  Fat bombs that are to die for?  I have some that I’m sure I’ll share, too.  Yum.

Here’s to feeling better and jumping into the craziness that is summer with a few new habits.  Here’s to staying accountable.  Here’s to taking care of myself and my family!  Here’s to being a little more like the mom and wife I WANT to be each day.

What happened when I started a 20k/day step challenge?

Okay, so let’s take you back a few years for some background info.  Two years ago, I was on track – working out, reducing portion sizes… getting my act together and trying to finally stop taking my able body for granted.  It worked.  I dropped 42 pounds in nine months and could run – really run – without wanting to kill over.  What a wonderful feeling.  I managed to keep that weight within just a few pounds for about six months after I stopped the weight loss challenges (about a year total).  At that point, I changed birth control.  We knew we weren’t having more kids and I felt okay going with a 5-year plan that I didn’t have to think about at all. 

Well, that backfired big time.  I hadn’t changed much else about my new eating habits, but packed on about 35 pounds in six months!  Holy Hell!  I was working on portions and trying to keep up on some kind of exercise plan, but the scale kept climbing and I was overwhelmed.  I gave up.  Needless to say, two years later, those 42 pounds came back and brought 5 of their friends to the party.  Ugh.  I got rid of that birth control and now I’m out to try to gain back the freedom of feeling like I look okay in my clothes and can endlessly play with my kids without having an asthma attack.  So here I am, with a whole lot of weight to lose… and a plan set up… with you as my accountability partners. 

About two weeks ago, I was reading about and watching YouTube videos on minimalism and I had a new spark for that.  We’d worked on this before, but it was mostly Brandon’s baby and I was just along for the ride.  When I dove into what minimalism meant for a mom… I was sold.  So I spent some time purging my closet of the clothes that didn’t make me feel pretty (ummm… I was left with nearly nothing) and started changing up how I handled household chores.  I’m not going into that all here… I’ll save it for another day, but the feeling of having a house that’s clean enough for surprise guests is unbelievable, y’all.  It’s still not perfect, but it’s drop-in-guest-ready, and that’s incredible.  Maybe you’re always in that position – but that’s never been my reality – not even in college when I lived in a 10x10 box.  I suddenly had more energy because the stress of living in a mess was gone.  I had my evenings to do fun things with the kids because I wasn’t trying to play catch-up on the house.  My weekends were beautiful because I wasn’t drowning in a week’s worth of laundry and a house that had just gotten worse each day.  And the best part about it… my bedroom/office was finally clean enough that it didn’t stress me out being in it all day.

See, I work from home (if you didn’t already know this).  I’ve worked from a home office for nearly seven years now.  As we’ve moved homes, the structure of my office has changed dramatically.  When we moved into the farmhouse in August 2016, I bought a standing desk.  It’s really just an Ikea desktop ($10, I think) with extendable legs ($120 for 4).  It was a cheap way to get me off my butt.  It worked sometimes… but I’d end up piling papers all over my desk and eventually, I’d move my laptop out to the kitchen table where I’d sit for my work day.  Do you know how ergonomically awful it is to work from your kitchen table on a laptop?  Let’s just say that my neck and shoulders were an absolute mess because of this – which lead to severe headaches.  But I could never keep my room/office clean enough to feel refreshed in it, so the kitchen became my office.

About this time last year, I cleaned off that desk again and purchased a desk treadmill to go under my desk.  This made the whole set-up a lot more expensive, but doing it this way was still at least $1,000 cheaper than buying an actual treadmill desk.  I raised my desk up a few more inches to account for the height of the treadmill, and I went to work on it… for a few days.  I’d spend a few hours a day walking (slowly) on my treadmill while I worked, but my legs would get tired and I’d again move out to the table – or over to Brandon’s desk to relax a bit.  Last week, after my fury of cleaning and organizing and purging, I had a clean space again and a new found energy.  I was getting back on that treadmill.  I was challenged to a Workweek Hustle with Fitbit friends, and I nailed that challenge with just under 80,000 steps in five days. 

My Fitbit reading as I am writing this.

 This is my desk set-up.  I love it.  The control panel for the treadmill is the little bar on the right side of my desk.  And for those of you with a keen eye, yes, those are spare G-tubes tucked in there behind the ream of paper.  We have a lot of spare medical supplies, y'all.

This was a HUGE improvement from the activity level I’d had before, and after the first 3-4 days, I wasn’t so sore.  I started sleeping better and waking up before my alarm went off (WHAT?) even if I didn’t jump out of bed right away.  When I rested, I rested well – and again, had more energy than the week before.  I was onto something!  I was averaging about 4,500 steps/day two weeks ago (bleh) and about 15,000 steps/day last week.

That brings me to this week:  stepping up my goal for steps… and trying to clean up my diet some (I’ll post about that later, too).  I’m also starting a very low-end daily workout to get my muscles back into some semblance of shape.  I have a long way to go, folks… but I am literally taking the first steps.  My goal this week is to get at least 20,000 steps a day (I was inspired by a friend of mine to try this).  I killed it on Monday – even after spending some time taking Ellie to a GI appointment in the morning.  Let’s see how I end up today with ½ day of PTO to take Ellie to Genetics – appointment days always mean lots of time in the car and sitting in waiting rooms… and we have a lot of appointment days.  I’m also going grocery shopping later this week to make sure we clean up our diet.  I’m hoping that with these changes, I can start seeing some progress… start feeling like me again.  I’m not using any fancy supplements… no magic pills or potions… just me, some movement, and a meal plan that is very practical and lasting for our family of five.  I’m no short order cook, here, so if I’m making something, we’re all eating the same thing.  I’m not going to sip on a special drink while my family eats.  We eat together, around the table… and that’s not changing.  And a funny little observation if you want to do a similar challenge:  if you’re the owner of a negative thigh gap (like yours truly), do yourself a favor and make sure you’re wearing comfy yoga pants for your stepping adventures.  Jeans and shorts are not friction’s friends.  On that note, wish me luck, y’all.  I’ll update here and there to keep you all posted on how things are going.

Today’s weight: X

[Yes, we’re doing it algebra style because I’m not telling a soul what my actual weight is.  As I lose some weight, I’ll post it as “x-5” because I’m a giant nerd like that and math is my friend (again, friction is not… I hated physics).]

So this is what Day 1 looked like for me... not too shabby.

Jumpin’ Jehosaphat!

Do you remember the very first time your child successfully jumped?  I do.  Wanna know why?  Because A) it just happened this past weekend, and B) this is something we’ve been working on for a loooonnnngggg time.  I honestly thought we were still quite a ways off.  But it happened. 

At 3 years, 6 months, and 21 days old – Ellie jumped.  And today, she even showed her therapist at school that she is now jumping.  I also know the exact day when she took her first solo steps – and jumping came exactly 1 year, 2 months, and 8 days after learning to walk.  Boy, oh boy, did this momma cheer.  It also happened while we were at the Boonshoft Museum of Discovery and I was worn thin from a long day of running and chasing kiddos… and Ellie was being grumpy.  I’d just changed her diaper (which she vehemently protested while laying down) – but once up, she jumped… and turned my grumpy into pure joy.  This kid – I tell ya!  Okay.  That is all.  I had to put this in the blog for posterity.  Carry on with your day!

A big shout out to the MVDSA for hosting our World Down Syndrome Day celebration at the Boonshoft.  Crazy fun - which lead to crazy tired.

Playing in the sandbox/landfill - rubber "sand" is a brilliant idea.

 

Building a tower... and knocking it down with great laughter.

Fossils??  Lance was in his element here.

This is just funny.

Mary and I rode down together.  Her kids were much more calm than mine - JEALOUS!

Here they were all watching the animal demonstration.

Mack and Ellie working in the pizza cafe. 

Logan & Ellie making pizza.

Kaleb was taking orders.

Logan & Ellie learning about recycling... errrr, spinning the gears.

Kaleb & Ellie at the giant water table.

Lance petting the hedgehog

Grant petting a hissing cockroach.  This makes my skin crawl.

Okay - Ellie just drug a whole bag of puff corn out and if I don't go catch her, it's likely to all be eaten in the next 3 minutes.  Monster!

What does World Down Syndrome Day mean to a family like ours?

I thought long and hard about this question over the past week.  See, in our household, we celebrate ability on a daily basis.  We cheer for every inchstone and welcome friends with Down syndrome into our home and into our lives on a regular basis.  Our boys see right through the diagnosis and celebrate the child or adult behind it.  Thank God for that! 

Actually, that’s a little bit of a lie.  They see Down syndrome – they can pick out a person with Down syndrome in any room.  But their world is much different than the one I knew.  See, the day we received a Down syndrome diagnosis for our unborn child, I wept.  I wept for a long time.  My heart was shattered thinking of all of the things my daughter wouldn’t do – or I wouldn’t get to experience as a mom through my daughter.  I had no idea.

I made these shirts for the boys to wear today for World Down Syndrome Day.  When I excitedly showed them to the boys, Lance wasn’t a fan.  When I finally had time to sit him down and talk about why he didn’t like this shirt, something he said really struck me.  He repeated it yesterday when I told him we were taking this photo later.  He said, “I don’t like that shirt because it says that my sister has MORE of something than someone else.  And Mom, it’s not nice to brag.”  WHAT?  At first I was a little taken aback.  I thought maybe he was ashamed to be wearing the shirt… announcing to the world that his sister is different.  Turns out, he was hesitant to wear the shirt because telling the world that she had Down syndrome was bragging. 

Oh, thank you sweet Jesus! 

I didn’t have the heart to tell him that we’re wearing it to CELEBRATE Down syndrome in a world where other countries are celebrating the elimination of babies like his sister.  I didn’t have the heart to tell him that his sister will be seen as “less than” to some people… and we are busting our tails to change that.  I couldn’t tell him that kids like Ellie are institutionalized and marginalized all over our world even today.  I didn’t have the heart to be completely transparent about how I used to feel about Down syndrome.  How would he feel if I told him that knowing his sister had Down syndrome had me in tears for so long?  How would he see his sister then?  I can’t bear to think of that.

To Lance and Kaleb, Ellie is Ellie.  They know she has Down syndrome.  They know that means she has a lot of appointment and that she had therapists at our house all the time.  They know that it will take her a little longer to learn to do some of the things that other kids do – but they also know that in time, she’ll conquer all of the things she sets out to conquer.  Kaleb is jealous that Ellie gets to ride a school bus because she has Down syndrome.  How funny is that?  Well, he just knows that she gets to ride a school bus because she had lots of therapy when she was little and the other kids who ride her bus also had therapy.  But he also knows that she had therapy because she has Down syndrome. 

My boys have their faults, just as every other kid does, but their perspective on inclusion and acceptance is remarkable.  I wish that every family had a chance to experience life as our family is experiencing it – I really do.  It’s incredible.  In a world where the “R” word is still used on a daily basis, we desperately need kids who have grown up with a sibling, cousin, or friend with a disability.  We need their innocent love and respect for all of humanity.  We need others to see that we really do have something to brag about when we know and love someone with Down syndrome.  We need the world to see the ability.  We need the world to see the beauty – even in the midst of struggle sometimes.  We need a world that is proud of diversity instead of a world trying to eliminate it.  We need people with Down syndrome – and they need us to speak up against discrimination and bullying.  They need us to show the world just how amazing life is with them in it.  They need us to educate the public and push for more accurate delivery of a diagnosis.  And I need my boys to show me the way because I did not grow up with a sibling who had a disability.  I did not grow up knowing this beauty.  If someday they’re sitting with their future wives and receiving a diagnosis – I pray that they celebrate it, knowing how lucky they truly are and how lucky their friends and family are to experience this with them.  I pray that they’re eternally better people because of their sister.  Those same little boys fight over who gets to live with Ellie when they’re grown if Ellie doesn’t want to live on her own (notice I said “doesn’t want to” and not “isn’t able to”).  They want to take care of their sister – they absolutely adore her.

THAT, my friends, is what World Down Syndrome Day means to us.  Side note:  this is the first year that we've planned ahead for WDSD and made up materials and such for the kids to bring into school - and the snowpocolypse of 2018 arrived and delayed those plans.  Soooo - looks like we'll be wearing our crazy socks to school TOMORROW and bringing stuff for our classes.  Oh well.  I guess it's appropriate to have patience for something like this, right?

About the shirts:  we're actually having a bunch of these made - with custom verbiage so that anyone in our giant Down syndrome network could order one.  We'll have shirts that say, "My sister has more chromosomes than yours does", but we'll also have ones where sister is replaced with: brother, kid, grandkid, cousin, niece, nephew, and friend.  If you can think of something else you'd like on these, we might be able to work that out.  We'll start selling these soon as a fund raiser for Walk Your Socks Off 2018 (which will be held May 19th).  If you're interested in buying a shirt, keep an eye out for my post soon.

We sent out reminder cards to classrooms that included facts about Ds for parents.  Lance will be reading a book to his 1st grade class and they'll be coloring these butterfly pages.  There are facts about Ds geared for kids on the back of the coloring page.  Each kiddo in Lance, Kaleb, and Ellie's classes will get a sticker with the Ds ribbon that says, "Together we can make a difference" and a bag of colorful goldfish crackers with a note saying, "World Down Syndrome Day March 21st - We are more alike than different"  Cards and coloring page are compliments of Three with a Twist

We didn't celebrate Ellie's 1st WDSD... because it was our 1st day home from Cincinnati.  We celebrated by training our first home health nurse and having a mental breakdown.  The photo above was from 3.21.16

World Down Syndrome Day 2017

Here is a close up of the shirts.  The math nerd in me was super excited to make Ellie's 47>46 shirt, too.  I wish B had taken a picture of the shirt he made last night and posted it... it's pretty stellar.  I made these shirts... the ones we'll sell as a fund raiser will be much better quality - screen printed ones.  

Have I told you that for Pi Day in high school, I made shirts that were covered in colorful bubbles on the back and each bubble had a number in it... I wrote out Pi to the 20th decimal, I think.  The math nerdiness is strong with this one!

Faith in the Valley

Last Friday, I sat through some great discussion at our Life Group meeting.  A topic came up concerning a child who was recently diagnosed with an aggressive form of cancer.  The woman sharing the story said that it was remarkable how strong the faith is in the mother of this child.  She said, “If I were in this position, I don’t know that I’d be that strong and that sure.”  “Yes you would,” I said.  Because I knew for sure what that looked like.  I shared a story with the group that I’ve never shared before… maybe not even with Brandon.  Three years after this event, the feelings were still so raw and deep that I couldn’t get through the story without my voice breaking up.

As I’ve shared many times, a few days before Ellie’s first heart surgery, we were told that the future looked dim for her.  The chances of her surviving the surgery weren’t great – and the chances of her having any success afterwards were nil.  I’ve shared that… but I don’t know that I’ve shared what happened between that day and her surgery. 

We’d just been transferred from CICU (where the staff knew her and me) to the PICU to wait for surgery.  We weren’t familiar with PICU… and we were meeting all new staff members at a time when I was a complete wreck.  I basically spent the next two days sobbing.  At all times, my face was red and blotchy.  My eyelids closed wonky because of how swollen they were and my eyes were terribly bloodshot.  I wasn’t sleeping – who could sleep under those circumstances?  I spent my days rocking Ellie (and bathing her with tears) and sitting in front of my laptop looking out the window at the cold, bleak world in front of me.  I listened to the choppers land on the helipad above us and to Matt Hammitt’s “All of Me” album on repeat and prayed endlessly.  I knew I was about to hand my baby over to surgeons and anesthesiologists – I knew there was a decent chance that I’d never see her alive again.  So I sobbed and prayed and stared out a window, vacant of anything but hurt.  I’m sure that the nurses already had a call in to get me some psychiatric help if things didn’t go well.  I looked like a busted up mess and rarely looked up to meet anyone else’s gaze.

But here’s the thing:  about 24 hours before we were set to send Ellie off to the OR, something washed over me and my prayers turned from begging – to surrendering.  Looking back, I’m not even sure how this was possible, and I can’t imagine doing it again.  But I can tell you with absolute certainty that when you reach the depths of what your heart can endure, God steps in and lets you entrust your future in Him.  It’s hard to explain.  But imagine that your child is scared or hurt… happens to all of them, right?  What do you do?  You bring them in, cuddle them under your arm, and say, “I’ve got you.  You can trust me.  I’ll take care of you.”  Right?  Well, let me tell you, God is that parent… but His love is even stronger than anything you can imagine.  When I was pouring my soul out then, He brought me in… He held me tight and asked me to trust Him.  I knew He’d take care of me.  My prayers changed that morning… and with that, I found some peace, and still had plenty of sobs.  I reached a point in my sorrow where I honestly began to repeat, “Your will be done”.  I had no idea what His will was for Ellie in that moment, but I knew that I was completely powerless in the situation.  I knew that we were either in for a miracle or the most extreme heartbreak imaginable.  Either way, I had no say in how the next 24 hours would go.  I had to hold on tight and let someone else steer.  God looked down and saw his daughter staring in the face of her enemy – petrified of what would be - hope waning as she held her own baby.  He gave me strength and peace in surrendering Ellie over to Him.  

In the wee hours on the morning of surgery, I was up holding her, rocking her in her sleep.  I was humming the words to the Matt Hammitt song I loved so much (humming because I couldn’t physically make any words that morning).  When the nurses came in, Brandon and I gave her the pre-surgery bath of cholhexadine and the smell of those wipes is still ingrained in my memory.  We handed her off that morning and fell into the arms of our parents as we waited those long hours.  But the tears were gone… maybe I’d completely run dry of tears.  The awful period where I poured my soul out for days on end was over.  There was a peace that wrapped around me like a warm blanket.  It allowed me to talk and laugh and focus on our family while we waited for her surgeon’s report.  God was there.  He pulled me in just as I have my children many times, He held on to me and begged me to trust His plan.  He let me know that He’d take care of me no matter what and He loved me.  Never in my life have I been so sure of who my heavenly Daddy was! 

I’ve met countless other parents (mostly moms) who have walked similar paths.  I can tell you that everyone prays in that surgical waiting room.  I can tell you that when things are the worst, faith runs full throttle.  If you want to see faith that can really move mountains, talk to a parent whose child is critically ill.  Is it awful that faith shows up stronger than ever in times like these?  Maybe.  But I can speak with absolute confidence when I say that we have a God who protects, who loves, who strengthens the weak.  We have a God who nourishes and speaks life into you when you cannot go on.  He takes you in under His mighty arms and asks you to trust in Him.  He performs miracles and gives peace when the miracles don’t happen on this side of heaven.  I know this because I’ve seen it with my own eyes and felt it in my own heart. 

We don’t have to be at the end of our ropes to trust in Him.  We know that.  He loves us and cares for us in our tiny “emergencies” just as He does on our darkest days.  Over the past week, I’ve been trying to focus on getting back to the place where I heard His voice… back to the place where I knew He was there beside me every day.  I don’t want to be back in the hospital to know this.  I need to seek Him out in my daily life because I know what it feels like to have Him sit next to you and wrap you in His endless love.  I need that on my worst days, of course, but I need to seek it more on my good days, as well.  I have a few people in my life who are staring their enemies in the face right now… women who are walking into some of their worst fears.  I pray that they feel God’s presence in a tangible way right now.  I pray that they can see that the enemy is a liar.  There’s a song by Zach Williams called “Fear is a Liar” and it’s been running through my brain lately – I think it’s a song that can help these women… and can really speak to us all.  I love you all and pray that you feel God’s presence in your life… that you know He takes you into His embrace to bring you comfort and peace – even in the midst of a storm.

A look back at that very dark time for us… plus some recent happiness below.  Thank you for following along.  If you need some more musical inspiration… Toby Mac is one of my favs.  Listen to “I just need you”.  He quotes Psalm 23 in it… and it’s perfect.

I couldn't look at the camera with my busted up face.  

Holding Ellie before we had to give her the pre-surgery bath.

Can you feel the weight on his shoulders?  Ugh.

Buggy right before she was wheeled into the OR.  I'm pretty sure she's praying, too.

Fast forward to the present:

Kaleb during his wrestling banquet this weekend - with coach, Daddy

Earlier last week - a sick Kaleb

And a sick Buggy... finally sleeping.  She's a monster when she's sick.

We had one nice day in Ohio... nice enough to play outside after school

Kaleb painting the planets for his solar system

And Lance - with a little more precision in his painting.

Kaleb at the playground (on the one nice day)

And Lance spinning on the swing

Ellie reading a book to her baby... sooo sweet.

Psalm 23

1 The Lord is my shepherd, I lack nothing.
2     He makes me lie down in green pastures,
he leads me beside quiet waters,
3     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
4 Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

5 You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
6 Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.