My Favorite Reason To Never Give Up

 

@shopjumpingjack tee

Today I’m sharing the story of a newly found IG friend, Sarah. She is the owner of @shopjumpingjack, home of the “you are my favorite reason to never give up” tee. I fell absolutely in LOVE with Jumping Jack when I came across a pic of this signature shirt on my feed, because even though losing Cruz can sometimes put me on the brink of giving up all-together, he’s also the very thing that keeps going –– I HAD TO HAVE this shirt! Sarah lost her sweet Jack to SMA (the #1 genetic killer of infants and young children) when he was just over 6 months old, yet she managed to launch her own business-with-a-cause right in the midst of it. 1 in 40 people unknowingly carry the gene responsible for SMA, however there’s currently no treatment and no cure. SMA hinders the ability to walk, stand, eat, swallow and breathe… meanwhile parents can do nothing to stop it but be there to comfort them until the deterioration takes its final toll. I know how much I would appreciate someone sharing Cruz’s story and raising awareness about OTC deficiency, so I do NOT hesitate at the chance to do the same for someone else. Here is Sarah’s story:

@shopjumpingjack

Meet Sarah

Meet Sarah

I have always loved crafting; creativity is a part of me. When my husband and I found out we were pregnant with our first, we were beyond overjoyed. I immediately began creating his custom nursery full of handmade items. We dreamed of the beautiful future with our baby boy. The day I held him in my arms for the first time, was the best day of my life. We named him Jack.

After his birth, we started to notice Jack could not move his muscles like he should. He never held his head up, or moved his legs. After a week stay in the hospital, Jack was diagnosed with the #1 genetic killer of children under 2, Spinal Muscular Atrophy or SMA. We were told he had the most severe type and had just 6 months to live. Six months. Our world fell apart. We were going to lose the person we loved most.

Jack required multiple machines to stay comfortable, he needed to be fed through a feeding tube, and was on oxygen. Since he was unable to lift or use most toys made for babies his age, I decided to make him a small tag blanket that had crinkle material inside for him to explore. He loved it! From that moment, I continued to create more tag blankets and crinkle toys. I opened my Etsy shop a month after Jack’s diagnosis, and named it Jumping Jack in his honor. Crafting was very therapeutic to me during the horrible rollercoaster we were on. Jack took his last breath in my arms when he was just 6 ½ months old. We made unforgettable memories each day. We are so lucky to have had this beautiful boy a part of our lives, but would have given anything to watch him grow up. He is truly the strongest person I know.

Today, Jumping Jack has evolved into much more. We were blessed with a healthy baby girl and she has brought so much joy into our lives. She also inspired new products in the shop – headbands, bows and apparel! I love that Jumping Jack will always be a part of him and I. I love that each item I make brings joy to other little ones. I love that Jack’s story can inspire others to live each day to the very fullest. Jack is my #favoritereasontonevergiveup.

Baby Jack

Meet Jack

WOW. Isn’t she so inspiring!? I feel the weight of her story so heavily, and my eyes well up with tears as I look into Jack’s big, round eyes and think about the fact that he’s now gone. I find Sarah to be quite the amazing mama, and such a beautiful example of someone who is turning grief into greatness (which is a whole other blog post I am publishing soon)! It’s hard enough just to get out of bed sometimes and face the day knowing a huge part of you is missing, yet she runs her own company and raises awareness in Jack’s honor. (I love her tagline so much that I want to get it blown up on a huge print for the boys’ playroom!) She sums up the struggle of my grief-process into one, short/sweet sentence: I have a valid reason to give up – because a huge part of me is now dead – yet it’s BECAUSE of his death that I ultimately refuse to stop trying. He fought so hard… the least I can do is keep fighting for him.

Here are some pics of me and the boys wearing some of our favorite items from Sarah’s shop, plus a few others I have on my must-buy list! $5 from every “You Are My Favorite Reason To Never Give Up”  tee purchase is donated to the Gwendolyn Strong Foundation. Plus, enter special code: CRUZLOVESJACK20 at checkout to receive 20% off anything in her shop, as a thank-you to my readers for supporting SMA research! I love it when I buy something and know that a portion of my money is going towards a good cause! Don’t YOU!? 

"You Are My Favorite Reason To Never Give Up" Tee

The “You Are My Favorite Reason To Never Give Up” Tee

@shopjumpingjack tee

Matching Toddler Tees (booties from @sheshemarieboutique)

 ^ TWO of my precious-precious REASONS to NEVER GIVE UP ❤ ^

my favorite reason to never give up

@shopjumpingjack tee

@shopjumpingjack tee

@shopjumpingjack tee

 

She has lots more cute stuff in her shop that I’ve been ogling…

Checkout these other FAB items from @ShopJumpingJack!

  Etsy Shop: www.jumpingjackjack.etsy.com

Instagram: @shopjumpingjack

Email: shopjumpingjack@gmail.com

If you would like more information about SMA please visit www.thegsf.org, or watch this video https://www.youtube.com/watch?v=osPYUVGB_aw 

#CuretheCycle2015

Thanks for reading! Remember to use code: CRUZLOVESJACK20 for 20% off!

(offer valid 11/20 – 11/23)

❤ together we can cure SMA ❤

@shopjumpingjack tee

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California, here we come! 


Well, here I was all excited to tell you guys, “WE’RE ON OUR WAY TO CALIFORNIA!”, but I guess a lot of you thought we’d already left for Palo Alto because of the pics I posted from the going-away party last week lol! I think our send-off was thrown for us early because of schedule conflicts, but it’s made for some funny faces and awkward questions from people when they’ve run into me at Target and such, haha! But I still wanted to post this anticlimactic announcement because I’m looong overdue for a blog update (sometimes IG captions just don’t cut it), and what better time to answer some of your whos/whats/whens/wheres/whys than this 10+ hour drive! It will give me a distraction from my swollen feet, sore joints, muscle cramps, heartburn, baby kicking my bladder… you know… that end-of-pregnancy-glory! Let’s just hope I don’t get carsick from typing 🙂

                            

                                >> Q & A Time << 

WHAT!? You’re moving to Cali!? No! I’m headed to Palo Alto so that I can deliver Valor at Stanford University.

WHY am I delivering at Stanford? There’s a 50% chance that Valor is missing a vital enzyme called OTC (for short), like his late brother, Cruz. OTC deficiency is a liver disorder that runs in our family requiring immediate attention and an eventual liver transplant in order for affected boys to survive. Oregon, our hometown, does not offer infant liver transplants.

WHY leave a month before his due date? 
This was a request made by Stanford. They like all their out-of-town patients to arrive at about 36-37 weeks gestation to meet their new OB and any specialists involved (in my case the metabolic team, dietitians and geneticists), develop a strategic delivery plan, take you on a tour of the NICU, and to start a series of stress tests, fetal monitoring and regular checkups (mine start on the 6th)! This is also to lessen the risk of going into early labor while still in Oregon, which in my case could be detrimental if Valor ends up needing a liver transplant. That scenario would result in a $120K emergency life flight – believe me – been there, done that.


I’ve heard of OTCD being detected through amniocentesis… WHY haven’t you tried to pre-diagnose him this way?  
About 80% of OTC mutations are detectable through amino, but the specific OTC mutation that runs in our family is buried too deep within the genetic code to be read. At this point in time, science lacks the technological capabilities required to examine one’s entire DNA pattern.

WHAT are his chances of survival if he has OTCD? 75%


WHY have I mentioned 2 different due dates? 
Valor’s actual due date is July 27th, but the doctors do not want me to go into natural/spontaneous labor because there are certain geneticists, dietitians, and metabolic specialists who have to be present during my entire labor. Childbirth is one of the most dangerous times of an OTCD carrier’s life (that’s me), and Valor will need to be tested within moments of delivery as a potential OTCD affected neonate. If my ammonia levels begin to rise and proper procedures are not followed to bring those ammonia levels down, I as a mother am at risk for becoming non-responsive, suffering stroke-like damage to the brain, and possible death. They are not highly concerned about any of these issues with me in particular because – other than some low blood pressure issues, low oxygen levels, and fever – my past 2 deliveries have been relatively normal and asymptomatic. To avoid all of this scariness from happening, they are trying to control the date that he arrives, and that date is tentatively scheduled for July 20th. However, if I start having contractions before then, my induction might get moved to an even earlier date.


WHAT kind of induction? C-Section or… ?  
Still don’t know yet.


Will you know right away if he’s sick? 
No. Cruz did not show signs until he was 3 days old. There are a series of tests that have to be done, and some of those tests can start out normal and then begin to look abnormal the longer he is out of my womb – AKA – separated from my nutrient system and my body’s OTC supply.


HOW long will you get to be with him before he’s taken to the NICU? 
There will be no skin-to-skin other than the few moments while they’re cutting the umbilical cord. I’m pretty sure I will cry uncontrollably at this moment. I told my husband he’s not allowed to leave his side until they finish all my tests/blood draws and let me go visit him. This could be up to 5 hours:(


WHY can’t you nurse him? Nursing is SO crucial! 
I know that nursing is one of the most important things for a newborn, and it makes me REALLY sad that I can’t, but breast milk contains about 10X the protein an OTC deficient boy can handle. OTC is required to break down protein, so if he’s sick and I nurse him, this would essentially poison his system with ammonia and send him straight into a coma – just like Cruz.


WHEN do you get to come home if he’s healthy? 
Probably about a month from today. We will be there for precautionary reasons from July 1 until his induction date, but we’ve been told to allow up to 10 days in the NICU before an official diagnosis can be made. That puts us somewhere around August 1st… the day I HOPE and PRAY to be buckling him into his infant car seat and making the 10 hour drive home 🙂


WHEN will you get to come home if he’s not healthy? 
If he is proven to be missing his OTC enzyme like Cruz, he will begin his journey towards transplant. He has to grow/gain weight on a protein-free diet until he reaches the minimum transplant requirement of 11lbs (5 Kilos), and then once on the transplant list he has to wait for a matching donor type to arrive. Cruz actually had the most common blood type… let’s hope he and Valor at least have that in common! Sometimes donors arrive in 3 days, other times not for 3 months… And sadly, they don’t let parents be live donors except for in extreme emergency situations, due to the risk of complication. After surgery he’s kept to make sure his body doesn’t reject the new organ for several days, then he goes on to in-patient/out-patient treatment. The longest we could be gone is approx. 6 months, but hopefully it would be shorter than that because there’s an out-patient program at Oregon Health & Science University, the hospital in Portland only 20 minutes away from home.


WHERE will we be staying? 
We’ve had quite the array of housing issues… let me tell you! At first we thought we’d be able to find a place for cheap using Jared’s parents’ Marriott timeshare, but because of the busy time of year and how close we need to be to the hospital (within 20 mins) there was no availability. We’ve also been looking on our Airbnb and HomeAway apps, but nothing is even remotely in our price range! We’re on a waiting list for a one-bedroom apartment using the Stanford housing program, but so far we have yet to hear from our social worker who said she’d call when a room opened up. This would be the ideal situation, since they match Ronald McDonald prices at only $10/night! And we can’t stay at the Ronald McDonald until after he’s born because they don’t like to take prenatal patients, especially ones who don’t have a definitive diagnosis. Let’s pray that diagnosis never comes! All that to say, Stanford called us a few days ago and found us a hotel in a neighboring city that’s $110/night – much more than $10 lol – but it’s a good deal in comparison to the other hotels we’ve looked into. It’s an Extended Stay so we can be there for the whole month (July 1 – August 1) without having to change rooms numerous times… which makes me happy because I want Ezekiel to feel as comfortable/settled-in as possible by the time I go into labor. (The word “Stanford” makes him really upset and nervous, and he says he will NOT go there, so we’re just calling this a “vacation where Valor is going to come out of Mommy’s tummy!”) It’s still possible that while we’re at the Extended Stay we could get a phone call about one of those apartments becoming available, and in that case we will move over there in a heartbeat! It’s much closer, cheaper, has its own washer/dryer for laundry, PLUS it has a separate bedroom, living room and full kitchen! Much more accommodating than a studio hotel room. PLEASE, JESUS!


WHO’S coming with me?  
Jared’s driving me down, but he’s flying home after a couple of days so he can still work and run the evening services for The Bridge (our church). Z will stay with me the whole time, which is why my mom is also coming down. She will keep me company until Jared returns for the delivery, and she can also babysit for me while I go to my numerous appointments! Did I mention my little sis is in the back seat too!? Her and my mom are sort of a package-deal since Lexi is only 9 (yes, we’re full siblings, 20 years apart), plus she’s built-in fun for Ezekiel!

How am I doing? Am I excited or anxious? I will miss ALL my friends and family tremendously, and I definitely teared up giving people goodbye-hugs over the last few days. I can keep my composure when believing and hoping it’s just for a short while… but there’s a huge part of me that’s secretly scared of what lies ahead. When I try to imagine being in labor, I see myself having a panic attack that I can’t recover from, and needing an emergency C-section because I lack the strength and mental capability to push through. The only thing that gets a mom through the hellacious experience of labor is focusing on the reward that awaits on the other side…… I can’t figure out what to focus on this time:(   I’m sure God has some mysterious plan up His sleeve, as He always does… I just hope whatever happens will somehow bring redemption to my broken places, and shed some light on why Cruz’s story unfolded the way it did.

On a superficial note, pray we find a local POOL! The Extended Stay doesn’t have one, and I’m trying to figure out how to keep Z from total boredom while cooped up with all of us in a studio for a month in this hot weather! 😂

Thanks for reading! Can’t wait to check-in to our home-away-from-home!

20 To-Do’s #DONE!

We’re officially  d o n e  with the plumbing renovations here at the colonial! YAY!!! No more galvanized, rusty, clogged, leaky pipes ruining our ceilings and polluting our bodies. No more icy water that rudely screams, “wake upppp”,  when washing my face every morning. (I’d like to leave that delicate job up to my daily coffee from now on, THANK YOU VERY MUCH!) It’s amazing how adequate water pressure and access to both hot & cold temps can make life so much easier. Who knew??? With the exception of a few walls in need of patching here or there, annnnnd the dining room ceiling that’s still wide open and exposing naked pipes from the bathroom above (no pun intended), WE ARE DONE! So head on over one of these days for a visit and enjoy a glass of oh-so-clear, filtered drinking water from any tap in the house! Just ignore the occasional toilet flushing overhead while eating in my topless dining room… it’s an off-putting inconvenience we all have to deal with for now, until we knock a couple more things off our to-do list!  As always, one project perpetually leads to the next, and you might even feel like we’ve gone backwards if you focus on the rooms that somehow went from done to undone during the domino effect of the plumbing overhaul – but in hindsight – we’ve made major headway.

Here are 20 To-Do’s we scratched off the list during #theplumbingproject:

1. Tear Out Obstructing Wall in Kids’ Bathroom
2. Remove Kids’ Green Tub/Shower
3. Extend B/W Tile Flooring Where Kids’ Shower Used to Be
4. Gut & Expand Size of Master Shower
5. Remove Master Closet & Soffits
6. Tear Out Walls Surrounding Master Toilet 
7. Remove/Salvage Remaining Tile from Master Bathroom Floor
8. Remove Soffits & Cabinets from Laundry Room
9. Re-Plumb Entire House (+ install filtration system**)
10. Rewire Electrical in Kids’ Bathroom
11. Create Pass-Through Window Between Dining & Kitchen
12. Replace Missing Drywall (removed during #theplumbingproject)
13. Frame In Hallway Closet (affected by master shower expansion)
14. Skim/Smooth Texture & Paint New Drywall Throughout House
15. Tile & Panel Kids’ Bathroom Walls
16. Install Free-Standing Claw Foot in Kids’ Bathroom
17. Install New Fan & Light Fixtures in Kids’ Bathroom
18. Install New Fan & Light Fixture in Laundry Room
19. Lay/Grout Extra Tiles in Laundry Room (Salvaged from Master)

20. Buy New Toilet, Cabinet & Sink for Downstairs Bathroom

Kids’ Bathroom

v v  click to enlarge & scroll v v

Z's Mickey Mat

Z’s Mickey Mat

Kids BathroomIt’s exciting to see bits and pieces of my vision coming together, and it’s built-in reMODel motivation to live in a room I designed! The master en suite may be in shambles, and the 3 of us have had to temporarily trade quick showers for long bubble baths, but having the kids’ bathroom so close to perfection (minus the sinks/countertops) is worth the delay! Besides, I personally LOVE letting off some steam in a deep soaking tub. (DONT YOU!?) It may take 3X the time, but it’s soooooooo relaxing! I can’t speak for my 6’6” husband though… I’m sure he’s getting a little restless to finish the double-wide master shower!

Kitchen-Dining Pass through

Hallway Closet

Laundry Room

v v  click to enlarge & scroll v v

April’s Projects

Over the next few weeks we’ll be working on the dining room ceiling (an absolute MUST), and the downstairs half-bath (finally). It’s time to make this old place more accommodating for company! We already have everything we need to complete the guest bathroom, I’m just trying to make a difficult design decision about the flooring before we continue. I want to keep this design decision a surprise for my readers – but let’s just say, hint hint – FIRST IMPRESSIONS ARE EVERYTHING, and CONTINUITY IS KEY to creating the illusion of spaciousness. << These are two major points that I’ll be covering in my next post, so meet me back here soon! We’ve got 20 things down, and 20 THOUSAND to go!

XO
 – B

** SIDENOTE for the Health-Conscious:

Water

We’ve not only brought this old colonial up to date, but we’ve upgraded it to a healthy living environment. Jared has to go in every 3 months for CT scans to make sure he’s still tumor-free, so we’ve tried to educate ourselves on simple life changes that can lessen one’s risks of cancer returning. One SIMPLE change is installing a filtration system at the source of your water supply. Everyone knows that drinking water should be purified, but rust, chlorine, fluoride, and other toxins are primarily absorbed through the largest organ of your body – the skin! During showers, we immerse ourselves in unclean water, and we inhale its vapors through the steam. This can lead to all sorts of medical issues, but can be easily avoided. We’ll never be able to eliminate the threat of contagions, but this simple change has put my mind at ease… and I suggest that EVERYONE do it. (On a superficial note, it changes your hair tint & texture! So if you paid a zillion dollars for that cute cut/color, and you want it to last longer than 4 weeks before it fades… bite the bullet and get a filter!)

I’ll be. . . home for Christmas?

If only in my dreams! I spent all year in anticipation of the coming holidays…. dreaming of turkey dinners (complete with Grammy’s signature stuffing), and an overly decorated house full of festive cheer and toes warming by an open fire. You know, just a typical girl, guilty of romanticizing the H-E-double-hockeysticks out of something so that nothing less can satisfy. I told myself – and pretty much everyone else – that I would GO ALL OUT trying to make up for last year, but then reality hit me over the head like a lead pipe.

WHO REPLACES THE PLUMBING AND MOVES IN WITH THEIR PARENTS OVER THE HOLIDAYS!? Oh wait… THAT’S US! As if spending last year’s Thanksgiving/Christmas in the hospital wasn’t reason enough to put it off and stay home, we thought it would be a good idea to have another season of abnormal. To be fair, the unfortunate situations we’ve found ourselves in over the last several months have not been by choice… they’re more-so forced upon us and we just have to roll with the punches. If you’ve seen the old slapstick comedy “Mouse Hunt” with Christopher Walken, you know what I mean when I say we were one rodent away from losing the entire house in one fell swoop (except for, instead of mice we had RATS, and we didn’t need the help of a gushing hose to collapse the colonial. It would’ve come down allllll on its own, in a heaping a pile of smelly sewage)! But why did this have to happen now? The holidays passed us by like we were standing still, then left us with no place to bang in the New Year. Oh well. It’s getting done, and one day we’ll be happy we did it.

Just to make sure you really, and I mean REALLY, grasp the brutal reality that was our “home for Christmas”, I welcome you on a little tour of my colonial reMODel, in all its guts/glory…

{{ MY FIRST VLOG }}

YouTube Vid

Now do you understand why we’re not living at home!? I’m hardly exaggerating when I say the house has been  d e s t r o y e d ! Not only is it dangerous for Ezekiel with all the holes in the walls/floors, but the putrid fumes coming from the pipes can NOT be good for my Jelly Belly Bean either (Don’t worry, I’ve been wearing gloves and gas masks when I come over here to work – it’s always better to be safe than sorry)! By January 13, the water should be running, the tub & toilet should be installed, the holes in the walls will be patched/primed/painted, and the thick layer of demo dust that’s settled on every single surface should be professionally cleaned; meaning we COULD move in with the ability to maintain hygiene and hydration, without the risk of rats finding their way in through open plumbing-passageways. THAT REMINDS ME! I still have to introduce you to Melvin <:3)~

Mel (the rat)

Melvin (the rat)

^^ inside the bathroom walls ^^

Sorry Melvin, I wish our goodbyes could have been more humane… but then again, I won’t miss seeing your red-beady-eyes in my home-sweet-home. I am impressed however, with your admirable abilities to stow away food from the kitchen (Ratatouille, anyone!?), and I hope you enjoyed your stay here at my colonial reMODel while it lasted 😉

MORE #plumbingproject PICS TO HIT THE BLOG SOON!

-B

xo

Demolition Day

That’s right baby! These walls are goin’ down and the master en-suite makeover has officially begun! Let’s be real, I can put up with the inconvenience of a small shower, but it’s more than just an inconvenience for my 6’6” hubby! You think there’s –what– maybe about an inch of clearance there? (IF that!) And he hasn’t even stepped up into the elevated basin!

hubby

poor guy 😉

How does someone of ^that^ manly size move his arms in a stall this narrow? He practically has to fold in half to get his head under the poorly placed nozzle… heck even I have to bend my knees slightly to get my hair wet! And why did they go overboard in the 60’s, building these low-hanging soffits like they were going out of style??? (Oh wait, because they WERE!) I’m assuming an architect woke up one day after bashing his head on the drop-ceiling and thought…. W.T.H. Then he turned his profanity into sanity and started designing houses with vaulted ceilings –#welcometothe80’s y’all!

In order to expand the shower, we cut up and over to the left, removing the soffits and absorbing some of the space from the huge linen closet in the hallway located on the other side of this wall…

bridge leading to master bedroom

(bridge leading to master bedroom)

BEFORE…

I was the camera/clean-up crew (ps. remodel debris is HEAVY!), and my brother came over to help Jared with the muscle work (I have the best brothers)…

LOOK AT THIS TRANSFORMATION! It looks so much bigger already!

^^^     IS IT JUST ME, OR DID MY HUSBAND GET smaller!?     ^^^

Now we wait for the plumber…. and we have to move out while he replaces ALL the fixtures in our house! Dang galvanized plumbing is biting us in the butt right now – but once all 3 bathrooms, kitchen, laundry, EVERYTHING is redone, we will feel like a weight is off our chest! We have ceiling leaks, water damage and falling sheet rock in the kitchen and dining room (a ticking time bomb at this point), near-to-no hot water pressure in the kitchen sink, NO hot water whatsoever in the master or guest bath, 3 pipes that are completely corroded and plugged, and sometimes the water comes out brown/rusty! So needless to say, we’re anxious and ready to drop some cash, knock this thing out and get it behind us before something worse happens!

In the meantime, can’t wait to show you all the virtual designs of the master en-suite my sis is drawing up… so stay tuned!

 – B

xo

Remodel Therapy

Well guys, I’ve been working my butt off since coming back from Stanford, but my brain’s been on a major mental strike. “Don’t make me think, don’t make me think!” I’m maxed out. Emotionally spent. Writing’s been like… trying to draw water from an empty well – or –  maybe there are more words currently flowing than ever before but something is blocking them from forming on the page? I hope one day it’ll finally come spilling out in beautiful, glorious cohesion and not like a giant spew of vomit!

I’d like to start by thanking all of YOU for standing by as my husband and I continue to weather through the most difficult season of our lives. We’ve been absolutely blown away by this newfound, ever-growing support system of Instagrammers and bloggers! Our hearts still feel freshly wounded, the medical bills keep coming, and the bad news seems to just PILE on….. but your words, prayers, gifts, financial blessings ($23K+), and relationships, have carried us through; You have truly been His Hands and Feet.

I wondered if letting a whole year pass with just  o n e   single entry on this blog was going to plummet my readership, but I came back and discovered the exact opposite. I can’t believe how much activity this site has had, and I feel so, soooo honored (and flattered) that you’re still coming back to see what I have to say! (Oh the irony that NOW is when I’d experience Writer’s Block!) Starting on January 30th, the day Cruz died, My Colonial ReMODel had over 3,000 hits in just a few hours, and not a day has passed since that there hasn’t been people visiting from all over the world – 91 countries to be exact. I want to take the time to acknowledge my top ten, most-faithful foreign countries and say, “Hello, from little ol’ me in Portland!”  

U.S., of course, you’re at the tippy-top, my fellow ‘Mericans!

1. Canada – Hey! I have family and friends from BC… thanks for reading.

2.  Australia – G’day;) I have to thank IG for all 1,300+ of you!

3.  UK – Hello!

4. Switzerland – Hallo!

5. Germany – Hallo!

6. Sweden – Halla!

7. Mexico – Hola!

8.  Italy – Ciao!

9. Brazil – Ola!

10. France – Bonjour!

Interacting with ALL of you on Instagram is one of my favorite things to do in a day, and I try my best to keep up and respond to your comments/posts/tags (although I know I’ve also missed a ton, and for that I apologize). I’ve connected with many moms like myself, having buried one or more children, and I’ve even come across parents with surviving OTC deficient children. I’ve been in contact with bloggers and interior designers who I may have never networked with had it not been for this unfortunate situation. My small little social circle has expanded and exploded in a matter of months, and suddenly the world seems so much bigger (and my tragic loss doesn’t seem so unusual… most certainly not as unfair).

The occasional, unexpected run-ins have been the most fun, although it makes me think twice before running errands without any makeup on! It always starts with an awkward stare… at the mall, restaurants, (most surprising was at Skamania Lodge in Washington)! I can tell you’re trying to figure out why you recognize me, and then the question, “Are you Cruz’s mom?” usually follows. I am SO happy to answer yes, then within minutes we’re crying together, discussing how much he changed our whole perspective on parenting/raising kids; not taking them for granted, cherishing ALL the moments, having extended grace and patience… all because of my little fighter guy. + + +These interactions remind me that, though Cruz’s life on this earth was short, his purpose still lives on. + + +

I’m looking forward this new season (as strange as it may be)! I certainly never imagined being here. I’m so thankful I have something like My Colonial ReMODel to immerse myself in during my darkest moments.  I need big, in-my-face projects to distract me from my reality sometimes…. is that bad? I’ve never been someone to go with the grain, so I guess I shouldn’t be surprised that I’ve resorted to “remodel therapy” when the conventional thing in my situation would be grief counseling. There’s something to be said though, for everyone, about working with your hands. It’s SO THERAPEUTIC! On the days that I turn to TV or lying around thinking, “I just need a break”,  I only end up feeling depressed, exhausted, and anxious. Blue-collaring, as I call it, relieves stress, gives the mind something simple to focus on, and leaves you feeling accomplished at the end of the day.

I should probably tell you that, for a while there I was wrestling with this whole “remodel blogger” concept… feeling internal conflict over whether I should be wasting my time with things so materialistic and lacking all seriousness. I didn’t want to bag the blog all together, but what if I had lost my passion and vision for it? So…….. I finally have people reading and I’m just gonna walk away??? (Sidenote: Right after you lose someone you SWEAR you’ll never take interest in anything carnal EVER again, and you’re frustrated with those who still do. Then you eventually realize that if life is ALL serious ALL the time, it’s too hard, too stressful, too mundane; lacking joy, fun, excitement, variety, and flavor. You’re not really living. For some reason or another, you NEED the meaningless things to lighten the weight laying heavy on your heart.) While going back and forth with myself, I stumbled across this image in my phone, a screenshot I’d taken of my morning devotions while still in early months of pregnancy with Cruz:

months of pregnancy with Cruz

I know this verse is more metaphorical than literal, but it’s funny how Scripture can take on new meanings and interpretations depending on where we’re at in life, and it’s as though I had taken note of this KNOWING I’d need to read it again at a later time. As pastors, Jared and I have dedicated our lives to “rebuilding” ;  spiritually parenting the fatherless/motherless youth in our ministry… helping recovering users… intervening in hurting marriages… and as fulfilling as our job can be, we can also get discouraged when we put so much work into a non-tangible problem or situation and see it continue to fall apart. So, having a physical job to get our hands dirty with, i.e. My Colonial ReMODel, is exactly what we need to bring balance to our lives. It’s drastically different from what we do for a living, yet so cohesive because it all revolves around this concept of rebuilding – not building from the ground up – but REbuilding that which is broken. I’m so thankful for this verse, because without it I think I’d still be contemplating where to go from here.

As promised, I added a tab to my ^menu^ called #iheartcruz. This is a link to my new, personal blog, LOVE HURTS || LOVE HEALS. You can casually follow from here, or go and subscribe to be notified when I post – either way – it will now be the only place where I’ll make entries about Cruz, future family planning, adoption, test results, etc. For my sake and for yours, I did this because I needed to start compartmentalizing and keeping my messy life separate from the remodel. {{“Don’t mix business with pleasure” …or in my case… NOT-pleasure.}}  I’ve also redesigned a few pages, given you direct access to my NEW shop @B_ART_STUDIOS, and soon you’ll even see video tours coming to My Colonial ReMODel! (Yes, all the vlogging requests finally got to me, and I finally got over the nerves of talking in front of the camera… sorta…) Also, I’m collaborating with my sister-in-love (who happens to be an uh-mazing interior designer!) to build a “Dream with B” page… full of future 3D virtual designs for each room! This way you can grasp my vision room-by-room, and see the end goal behind all the little projects we have going on ’round here!

I’m super excited about what’s to come… Jared and I are just days out from starting on some MAJOR projects – the biggest projects we’ve done since the initial demolition! We’ve been saving for a while now, and thanks to some of YOU, the medical-money-pit hasn’t impacted our remodel reserves. The only sad news is, we found out we have to redo ALL the plumbing, which is gonna run about $6K and destroy our beautifully finished walls 😦 This will eat into our kitchen budget as well, so we have to wait for Spring to start on that now. BOO-HOO! But (there is a but), our contractor came out on Thursday to go over plans for our master on-suite and the downstairs bath, so we should be “breaking ground” (so to speak) on these projects by next week! EEEEEK!

Once again, WELCOME to all you newcomers, thank you EVERYONE for your friendship and LOVE – let’s do this thang.

 

XO,

– B

 

 

 

Death of a Thursday

but first, a little throwback to an unfinished entry titled, “Thankful Thursday”

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Thankful Thursday 

(Drafted November 16, 2013 (3 days before Cruz was born)

I know, I know… November is the cliché month to give thanks and recognize those things we often take for granted… but it’s in the midst of need that we’re suddenly aware of how much (or how little) support we have. From family to friends, I am blessed with SO many quality people in my life who truly-madly-deeply care about me. I haven’t always felt this way. I’ve gone through seasons of my life where I desperately needed what I have now, but felt like I had nowhere to turn. It’s comforting to know that the next time I experience trial, I won’t have to bear it alone.

So, how does a person adequately express their thankfulness towards someone when the generosity itself has left them at a loss for words??? I’m not quite acquainted with this sort of speechlessness , so I guess I’ll just jump off! –

Thanks to my sisters and some of my dearest friends, I had the BEST baby shower a girl could ask for! Not only was I pampered by ALL who came spoiling me with diapers, wipes, and gifts GALORE, I left feeling undeservingly blessed to have finally………..

(End of Draft) 11/16/13

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Death of a Thursday

……. And here I am, in the midst of another trial. Wow. If I only knew, blissfully driving home that night with a car-full of baby stuff, that I wasn’t going to need ANY of it. Now looking back at the past valleys I’ve walked through, I can see how every journey has taken me oh-so-slightly deeper into pain’s crevasse; each one just toughening me up a bit, bracing me for the day I’d eventually step in sinking sand. Sitting here, suffocating at the bottom of the pit, it’s frightening to recognize that this fractured ground could give way again, and I might find myself disoriented by an even greater fall.

For the past few years, I’ve been toying with the idea of writing a book on love. I have the title, the cover design, a general outline… but one thing was missing. Without running on with divulging details, I will just say, Cruz’s death finished the book. I had always wondered if losing someone is losing someone, is losing someone… and in fact, for me, it IS one-and-the-same. Whether losing someone to death, rejection, betrayal, unfaithfulness, what-have-you, the emotional-transcending-physical heartache feels the same, just at totally different dimensions.

I think we as humans were designed to be resilient; able to bounce back from major impacts by evolving and learning to move/live on with whatever our individual struggles may be. But – because of this ability to cope, we often gain a delusion of independence and underestimate our inherent need to be reliant.

There’s nothing quite like a humbling wound to the soul that sends us desperately seeking help from someone/something/somewhere beyond ourselves. We’re wired for relationship, we crave community, we live for love. But even (after trying psychological and physical solutions to aid the pain, or simply allowing enough time to pass) if I’ve truly had an encounter with my Creator, I find that I lean into Him jusssst long enough to regain my strength and wits about me, then I leave the nest regardless of whether my wings are still broken. Just because something’s no longer raw, doesn’t mean it’s cured; just because you’ve learned to ignore bloodiness, doesn’t mean you’ve stopped the bleeding and yet, well, you’d think I’d learn.

When answering the trite Christian-question, “how are you doing spiritually?”, I would honestly say I felt close to God……… but what does “close” really mean??? Any religious, disciplined person can read their Bible, pray, make all the “right” decisions, and still be absorbed and governed by their own feelings and selfish nature. There’s no other relationship in my life that would survive such narcissistic behavior, so I suppose that answers my question of closeness.

I feel like my priorities were so out of whack before this whole thing that I’m not quite sure how I ever justified it in my head. I was due for a wakeup call, I suppose. If I’ve somehow painted an image of a harlot or hypocrite in your mind, that’s not at all what I’m saying, I just mean I may have had other gods in my life, such as my children, home, and earthly treasures; I guess this is me pleading guilty of idolatry. I don’t think I brought this situation upon myself, nor do I believe that God is a God of vengeance, but sometimes bad things happen to good people, and I think our response to these “bad things” is what sheds light into the deepest places of one’s heart.

It’s hard to feel happy these days… but then that begs the question… was my previously-so-called happiness rising from a foundation of joy? Or, was my happiness subjective, suspended between ever-changing, unsecured circumstances? As children it’s pounded into our brains at Sunday School that “ I’VE GOT JOY, JOY, JOY, JOY, DOWN IN MY HEART – TO STAYYY!”, but we’re not taught how to practically live that song even if/when we grow up and find out that after generations of a hereditary disorder laying dormant, YOU are the one who was born with the defect that will someday kill your son.

If I’m honest, I’ve been dealing with thoughts and temptations so foreign to me there might as well be some stranger whispering terrible-nothings in my ear, in a language I hardly understand… and if I listen… the things that used to be black and white start to warp and meld into shades of gray, and the foundational belief system of my faith is called into question. Perhaps this is how Eve found herself allured by the snake? It’s easy to judge when she APPEARED to have everything she could ever want already, but let’s just say she too, had a nagging void within her rendering her vulnerable and susceptible to deception. If she could be convinced that God didn’t have her best interest at heart, I think that’s all it takes for anyone to begin questioning the difference between good and evil.

It’s disillusioning when your personal absolutes suddenly seem subjective. God is good. Evil is bad. But then many have implied that perhaps Cruz was chosen to be some modern-day sacrificial lamb that would lead many to Christ… as much as I try to see that as good, I CAN’T. The God I thought I knew provided Abraham with a lamb so that Isaac didn’t have to die. Where was my Shepherd as I watched Cruz drowning in his own fluids for his last what-seemed-endless hours, struggling for  e v e r y   s i n g l e    b r e a t h. “HE’S ONLY A BABY! JESUS, PLEASE!” My cries seemed to have fallen on deaf ears and for that whole night I felt…………… abandoned.

Multiple doctors were in his room, but one of them was standing over me as I fell to the floor having loss all color, my left arm numb, chest cavity so heavy I felt like death itself was clenching my lungs; I was dying on the inside AND out. I had heard multiple “adult code-blues” blaring over the intercom during my stay at the children’s hospital and I was sure, I was next. As my heart began to palpitate, my body violently shaking, it was as though I was preparing for the birth of something only I assure you, labor pains don’t even compare. Everything began to fade out, both sight and sound, but there was ONE thing that gave me the strength to hold onto my fading consciousness. His name, Ezekiel. “YOU CANNOT LEAVE HIM, BRITTNEY, GET IT TOGETHER! HE NEEDS YOU JUST AS MUCH AS CRUZ HAS NEEDED YOU!” Then I’d think about little Cruz (who was just handed off to his father by the mother who had always been near – never afraid, always holding his hands and cheering him on)… WHAT IF HE’S SCARED!? WHERE AM I IN HIS GREATEST TIME OF NEED!? GET UP AND GO OVER THERE! I had heard about females in the animal kingdom dying after the loss of their young, and part of me was afraid that if I held him again, as much as I ached to, my heart would go into cardiac arrest. || Even as I try to recount these all-too-fresh moments, the frightening, familiar, paralyzing pain is gripping hold, convulsive cries are making it hard to type, and tears are flooding my eyes, streaming down my chest. || I knew this was the last hour because it was getting harder and harder for me to function, and it was requiring so much medication to keep him comfortable that he would soon overdose. It took every ounce of my existence to lift myself from the disgusting blood-spattered floor, like going for that 100th and final push-up when muscles tremble and joints give out… but I willed myself to crawl over and sit at my husband’s feet. The closer I drew to Cruz, the closer I felt to death. I reached out, determined to make myself known to my suffering babe, touched his swollen hand and spoke as many words as I could mutter. I think I knew he was waiting for me; I knew the sooner he sensed my presence, Cruz would feel like he could stop fighting… and sure enough… moments after my voice touched his ears, I looked up at the monitor just in time to see his last two heartbeats before the flatline_________________________

 

Still filled with some bit of hope or perhaps denial, my adrenaline raged and I had a burst of strength pulse through my body, throwing myself overtop of him. I screamed his name loudly against his cheek, his body jolted, and my heart leaped, only to look up at the doctor to be informed this was “just a COMMON reflex”.  T.O.D. 7:44am, THURSDAY. I proceeded to vomit everything in my stomach until there was nothing left. I stood to my feet, took a deep breath, felt an unexplainable burden lift itself from my shoulders, then the words, “Well done, daughter” penetrated my spirit. Suddenly, this feeling of abandonment was replaced with nearness, and I felt as though my Father was standing next to me, smiling, with an empathy that only He knew. I did it. A piece of me was gone, and I was certainly not the Brittney I was even the day before, but I survived the impossible. I looked over at the body that once contained the soul of my precious, precious son, it was already so shockingly pale-green, but somehow I could separate the fact that he was no longer there, and my life-long fear of death was replaced with a calming peace beyond my understanding. As I watched them remove all of his needles and wires (for the first time in 2.5 months), some sort of freedom came over me, and I felt the same liberation I used to feel as I’d pass the baton at the end of an excruciating relay. He was out of my hands. We had fought the good fight. Now it was time to REST. This is when the Psalm 23 image of Cruz and Jesus walking hand-in-hand painted itself over my bleeding heart, and I felt healing, refreshment, cleansing – renewal. Cruz was alive!

Though he walked through the valley of the shadow of death, Cruz wasn't afraid, because Jesus heard his cries and comforted him; led him to green pastures, still waters, prepared a feast in the presence of his enemies (for his starving little tummy), and now Cruz will live in the house of the Lord FOREVER.

Though he walked through the valley of the shadow of death, Cruz wasn’t afraid, because Jesus heard his cries and comforted him; led him to green pastures, still waters, prepared a feast in the presence of his enemies (for his starving little tummy), and now he lives in the house of the Lord, FOREVER.

I don’t know what I think about God or the God I thought I knew… I struggle with feeling mad at Him but my love for Him has SOMEHOW increased. Did God plan such a tragedy? Isn’t He good ALL the time? Full of mercy, love, and grace? It comes down to the ongoing theological debate between predetermination vs. free will. Where I stand on this subject is neutral. To think it was premeditated and orchestrated ruins my belief that God answers prayer – without prayer I have no faith, without faith I lose hope… along with my ability to trust in anything. But to think God’s first design was for Cruz to live and that His plan got derailed by man’s sin-nature and the foolish mistakes/mistreatment in Portland, (although it takes the fault off God), it suggests that evil prevailed. So now God is the lesser of two powers at war??? I believe God could’ve intervened at any point and released Cruz of the ailments that bound him, but He didn’t. Why? It’s not like there wasn’t enough of us praying for him! I could entertain unknowns and what-ifs that’d eventually drive me straight to the psych ward, but correct treatment or not, thousands of prayers or none, this all started because he was formed with a failing liver, and that’s the part I struggle with. God intricately and purposefully formed him within my womb. He knew his every part. (Psalm 139:13)

I’ll admit I’m getting nervous as time goes on. My genetic screening was supposed to take 3-5 months (I think I’m down to 0-2) and although part of me is anxious to hear and get on with my life, part of me doesn’t want to know. Right now I can still have hope that the worst is over, and I don’t want ANYTHING to take away this hope. Now that the shock is beginning to wear off, the permanence of death is setting in. Cruz is gone. His cute little body I used to gaze upon is now rotting beneath the ground. His precious fingers that gripped mine so tight are now lifeless and cold. I COULD NEVER DO THIS AGAIN! I could never watch another one of my babies die… BUT, if I never try for another, how will I ever move on?! What will keep me from obsessing over what happened? I can’t get stuck here.

This goes without saying, but I’m obviously at a turning point in my life… we all get a few of those. Am I going to let circumstances destroy me or build me? Am I going to get bitter or better? Am I going to drown in self-pity or let the waves of grief spur my creativity? Am I going to thank God for His goodness and mercy regardless of my pending DNA results, or will I be overcome with anger and resentment if things don’t go the way I’d hoped? What if this isn’t an isolated one-time tragedy because the very fabric of my being is flawed!? This IS what will break me or make me; This has the potential and potency to imprison me or propel me down a road less-traveled.

I could easily live the rest of my life blaming God and overlooking all my many blessings because I feel shortchanged – but then I’d be just like Eve – forsaking all the other fruitFUL trees in my garden because I’m captivated with the one that I don’t understand; infatuated with the one I think I want/need most, the one God obviously set apart… and convinced that I know what-would-have-been best, distrusting that God could possibly have a better plan. I was blessed and chosen to be Cruz’s mother for the short time he was here, that IS good. I wouldn’t trade the opportunity to meet Baby Cruz for anything.

The brutality and finality of death remains unmatched. If I didn’t believe in something eternal, the Brittney we all know would surely disappear, buried alive in this insurmountable heartache; but I’m a firm believer that this life isn’t all there is. Cruz is alive, happy, healthy, stronger than ever and better off than he would’ve been on this hell-of-an-earth… he’s just not with his mama. And that’s actually ok with me, somehow. I know that I know that I know, I WILL hold Cruz again someday, and that someday-moment is what gets me through my every waking hour.

 

Moving on from here:

I PLAN to get back into blogging, I just need to get past the new-found superficiality of it all. It seems so pointless to talk about design and decor, but then again, I have never been so thankful for My Colonial Remodel as I am now. Having the ability to lose myself in projects has been a healthy distraction as I go through the motions of mourning, plus, 10 months of pregnancy hormones preparing me for the busy life of “taking care of baby” have left me with all this extra energy that I need to spend somewhere! Someone once asked me if I was going to seek grief counseling, and as of now, working with my hands has been my preferred therapy. I hope everyone else can move on with me, obviously never forgetting Cruz, but helping me pick up where I left off here.

Thanks for all your love, support, prayers, endless gifts and happy-mail… every day is delivery day here at My Colonial ReMODel! I am surrounded with the best of the best and I love you ALL dearly!

 

TRULY MADLY DEEPLY,

– B