it is well

Stevenson, WA

I wake up every morning with a deep ache. My heart feels heavy, my stomach often ill-set, yet it is well with my soul. I go about my days wanting someone I can’t have; missing what could be and what was. Each week that passes I wonder, will I ever get used to living without him? Will I ever lay down my head and go to sleep feeling satisfied though I cannot kiss his cheek or tuck him into bed? No need to visit his room in the middle of the night and make sure he’s still breathing, because he has already drawn his last breath. With every sunrise my heart breaks over and over and over again, yet even in my brokenness it is well with my soul.

Stevenson, WA

Every year that comes and goes just puts more space between us, allowing others to assume time is healing the wounds, when in actuality I wish he wasn’t such a distant memory. The further removed I am from his death, the more final and empty it seems. I will live the rest of my life navigating through the stages of grief as they repeat at random and without predictability – plunging me in and out of depression and then back into denial – but this is just me forever loving him with the same growing intensity as I do my living sons. When his 5th birthday passes uncelebrated, and there’s no discussion about where he will go to school, no teaching him how to ride a bike without training-wheels…. I will feel every missed milestone like a knife to the chest but it will STILL be well with my soul. I have no idea what eternity looks like – whether or not I will get to raise him and experience the things I long for with all my being – but even without knowing what’s to come, I trust that it will be better than my simple mind could ever fabricate and therefore, it is well with my soul.

Stevenson, WA

I now have tangible proof that there was illegal practice involved with my son’s mistreatment, along with many warnings that I should not speak such things unless I want to be taken for all I’m worth, but somehow it is unexplainably well with my soul. I could place blame on the negligent individuals for their actions, letting anger and bitterness boil up inside like a smoldering mountain, but instead it is well with my soul.

Stevenson, WA

Though sometimes it seems easier to go the way of hatred, I have found that forgiveness let’s me live more free. The emotional stress tends to be physically taxing, but letting my burdens lay at the feet of Jesus instead of dragging them behind me like a deadweight… well this allows my mind and body to find retrieve. Understanding that I can do all things though Christ, yet NOTHING without Him is a dependency that even my wildest-of-hearts gladly yields to. Like discovering a thought-to-be-mirage is in fact a REAL spring of water in the desert, I continue to soak up refreshing nourishment in the most dry places, and I’m reminded that it is miraculously well with my soul.

Stevenson, WA

And to the naysayers that would challenge my choice of beliefs, you must know that even if all these things my faith-eyes see turn out to be nothing more that a fantastical idea that got me through the worst of my travels, the peace that goes beyond my comprehension would still make it worth it all — so, IT IS indeed WELL with my soul.

Horatio Spafford wrote the hymn “It Is Well With My Soul” after the death of his 2-year-old son, and the 1871 Great Chicago Fire. The Spaffords later had three more children, then on February 11, 1880, their son, Horatio Goertner died (the age of four) of scarlet fever. I plan on getting the words “it is well” tattooed on my arm soon, as it speaks to me in so many ways. If you’d like to buy this it is well tee (or any of the cute items from @ShopHelloGrace), she has kindly setup the code: MCR15 as a special discount for my readers! Love you ALL and thanks for stopping in❤

XOXO,

 – Brittney

“When peace like a river, attendeth my way,
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul

My sin, oh, the bliss of this glorious thought
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, o my soul

And, Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll,
The trump shall resound, and the Lord shall descend
A song in the night, oh my soul!”

It is well, it is well, with my soul”

by Horatio Spafford


It Takes an Army

If you saw this “picture perfect” post pop up on my Instagram feed last week, you might’ve made some inaccurate assumptions about the events surrounding how that sweet mama-moment came to be…

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… So I feel there is something that needs to be said:

I’m constantly hearing other moms talk about how NOT glamorous their lives are in contrast to those around them; feeling inadequate and “homely” when comparing themselves to the PERFECTION that they see in other people’s lives. But I tell them this – the truth is, I highly doubt there are many photos being posted on IG that are really and truly as worthy-to-be-envied as they may seem. Behind every gorgeous selfie there are 150 outtakes, behind every home decor staging there’s the removal of everyday messiness, and behind the “mama-blogger-status photo shoots” there are the MELTDOWNS! It takes hard work getting kids to cooperate sometimes, and even more work on top of that to find a day where the sun’s shining, clothes are clean, hair is done, makeup is on, and we actually have a moment to leave the house in between naps! So let’s just cut the crap and get this straight: no one’s life is as flawless as it may appear, nor should any of us ever feel even a twinge of jealousy when scrolling through our social media feeds. Why compare somebody else’s BEST MOMENT (after all, they deemed it post-worthy) to YOUR behind-closed-doors REALITY. Parents: We’re all in this crazy human-growing gig together, and we all know how difficult the unfiltered ins/outs of parenting can be – so let’s encourage one another and be each other’s cheerleaders! Let’s celebrate the wonderful and exciting moments as a team, and be there as a support system when things are going…. well… NOT so wonderful. 2 Corinthians 10:12

Here are a few of my favorite outtakes behind last week’s ATTEMPT at a photo shoot! It took an army of help to get this scattered squad in line, but we pushed through the tears and  e v e n t u a l l y  had a genuinely fun time together. The end result: a precious memory, pictures of my boys wearing their matching “be still and know” tees in honor of brother Cruz, and one really good photo that made the stressful morning all worth while. It’s really one for the wall, you guys! (And by wall I mean, the imaginary family photo wall that I have YET to hang in the stairwell lol #dontjudge)

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Just seconds in, Valor was NOT having it, and Ezekiel was fighting his own tears about taking a break from cousin Jaden…

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Then Z was upset about wearing his coat, and pouting that I put his hair up in a man-bun. (He’s had this adorable haircut for a while now, but refuses to ever wear it up like this!) I just started laughing at their sudden onset uncooperative behavior…

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Ezekiel gave Valor a kiss which is a nonstop occurrence around our house, but of course his response was MORE TEARS haha!

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And now we finally arrive at the moment (20 minutes in), where Valor takes a huge breath – blotchy face n’ all – and decides he’s gonna be happy for no apparent reason:)

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^^^ Me saying, “I should have known this day would go like this…….”  ^^^

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Valor is clearly too big for this size 6 mo tee from @bestillclothingcompany, but these tops were the main inspiration behind the photoshoot to begin with, so let’s just take a moment to adore the big baby in a belly shirt!!!

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#MINORadjustments

if only he'd let me put is hair up more often :(
^^^  If only he’d let me put is hair up more often😦  ^^^

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Look how cute they were being! I love seeing their blossoming relationship unfold.

When Cruz was in the hospital, the owner of Be Still Clothing Company sent me an encouraging note about the faith-filled inspiration behind her brand, along with a thoughtful care package full of shirts and trucker hats for the family – one of which was a sweet little tee for Cruz. At the time, I wholeheartedly believed Cruz would be coming home with us, and I looked forward to the day I’d be dressing him and Ezekiel in their matching clothes. After he passed away, I put Cruz’s shirt away with all his other keepsakes, and thought I’d never want to put it on another child… perhaps I wouldn’t even have another baby??? So, you can only imagine what it felt like to retrieve this smaller-than-remembered-shirt from the attic and do these precious pictures with Valor! Life today often leaves a bittersweet taste in my mouth, but I feel so incredibly thankful and blessed beyond ALL reason that God gave me these two miracles to raise. With a 50% chance of needing a liver transplant, both of these little dudes live to remind me  e v e r y  day of the love my Father has for me❤  Every morning I wake to find them breathing, I feel grateful.

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^^^ this is one of my favorites ^^^

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style icon tip: sweatpants and pumps for an ironic combo

 

In case you’re wondering which came first – the post title or the army jacket that so fittingly goes with the title – it was definitely the jacket. It’s like, I knew when putting on my outfit of the day that I needed to be up for a challenge 😏😉  (the heels and sore feet however are another story!)

>>> to buy SUPER cute & inspirational clothing for you or your kiddos, click on the image below! <<<

Enjoy the rest of your weekend!

XOXO,

– B

be still clothing company

Psalm 46 (ESV)

10 “Be still, and know that I am God.

They Grow Up When We’re Not Looking!

I feel like I’ve done EVERYTHING to cherish EVERY moment with Valor – because I understand how fragile and without-guarantee life is – yet somehow this little guy celebrated his half birthday yesterday (Z is already 4 years!) and I have no idea where the time went! I sometimes wish kids could stay small forever, but then again I’m looking forward to their future, full of so much anticipation and excitement! I think I just love and enjoy ALL the stages of parenthood… although, the current stage Valor is in might be my favorite with him yet! He’s such a ham, and I can’t seem to reach my fill of smooches and munches!

#ValorGrowthChart

He went from just laying next to his #ValorGrowthChart lightbox, to suddenly ^THIS^! What a little rascal!!!

(You can buy this fun @TypoShop lightbox for 30% off at CottonOn!)

#ValorGrowthChart

#ValorGrowthChart

OH, SWEET HAPPY BABY!

He really is the happiest, easiest baby!

(I think he knows Mama needed a little TUB OF JOY!)

 

MILESTONE CALENDAR:

  • all he wanted for Christmas was his two front teeth and he got them (well, the bottom ones anyway)!
  • Jimmy Fallon was right, Valor’s first word is “Dadadadadadadadadadada……….”
  • running into the kids’ table, rolling over my toes – Valor’s favorite event of the day is cruising in his Combi Car (aka his walker)
  • if his frustration and anger don’t get the best of him he may be crawling soon, but for now I guess we’ll settle for the pushup-scoot-scream-rollover routine. #temperTEMPER!
  • got milk? Valor can’t get enough of his booby milk and oatmeal, but has yet to acquire a taste for much else
  • this chubba is pushing 20lbs and wearing 18+ mo clothing…  so I guess we don’t need to worry much about his noted disinterest in food quite yet!
  • time to lower the crib… this feisty explorer has decided to start climbing his way through life, and he’s strong enough to do pretty much anything he sets his mind to
  • mommy is feeling like a new person, because teething-pain has finally subsided and V is back to napping and sleeping through the night again… WHICH IS WHY I’M BACK HERE BLOGGING!

I might be crazy but I’m already planning his 1st birthday! I figure time will fly by anyways so I better get a head-start, plus I think it’s therapeutic for me to put thought into things like CELEBRATIONS, especially when Cruz’s 2nd Deathiversary is coming up exactly one week from today. (Oh how I miss my little fighter boy!) I don’t feel bad for going a little over the top for Valor’s 1/2 birthday (do people usually blog about half birthdays?) and I won’t feel bad for throwing Valor an insanely BIG first birthday because I think  e v e r y  year our children are alive on this earth we should throw a huge party. I used to think birthdays seemed selfish – because it’s like the one day a year where our kids get bit by the it’s-my-party-and-I’ll-cry-if-I-want-to bug, and they think it’s ok to suddenly act spoiled rotten – but now it’s simply a day where my heart is rejoicing, and I want others to come and rejoice with me “prodigal style”😉 Luke 15:22-25

What are your thoughts, Mamas? Is it just me or are we gonna look back one day and wonder where those 18 years went with our college-bound BABY wishing we were still corralling our never-ending-question-asking kindergartener!? These are the days… oh yes, THESE ARE THE DAYS.

XOXO

always on the go...

always on the go…

 

Buy your own Combi Car HERE!

 

 

 

 

 

 

 

fashion + fitness + function = freaking amazing

I am SO excited to be teaming up with @albionfit!

You know that feeling when you wanna look cute, but comfort just sounds wayyyyyyy more appealing? Well that’s ME pretty much every day now that I have a new baby to love! I find myself without makeup on and running errands in whatever is easiest to throw on reallllll quick, but it’s always super awkward when I bump into someone I know or someone who follows me on Instagram WHILE LOOKING LIKE A TRAIN WRECK. But thanks to Albion, the debate (between choosing to go casual-comfy or to actually put some effort into my outfit for once) is over.

Everywhere I go I get compliments on my items from Albion! I’ve lost count on how many people have come up to me while I’m wearing my Slate Antigua Leggings to ask, “OK, where did you get those amazing leggings???” Or, when I wear my Go Long Crew, everyone wants to know where I found a basic long-sleeve tee that has thumbholes (because is there anyone in this world who doesn’t secretly love the way their hands look in thumbholes?)!  I feel so good about myself whenever I’m wearing anything Albion, and I am positive you will too.
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I love the fit, the feel, the fabric that won’t fade, and the fashion statement that is @albionfit. I don’t know about you, but I’ve grown tired of buying $30 yoga pants every couple of months because they’ve already developed holes along the inner thigh, or because they look super old and ratty after just one wash, or they literally attract every little bit of hair/lint/fuzz because they’re a static-cling-nightmare! #NOthankyou
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I’m so ^happy^ to have found this company – mostly because of their awesome floral leggings that have all the right flowers in all the right places (if you know what I mean) – but also because I kind of adore their backstory. They’re a husband/wife team who fell in love at the office (Jim & Pam style), and they share a mile of memories together at an incredible place called Albion Basin (which may have the most beautiful wild flowers EVER),  and the two of them decided they wanted to share Albion Basin with the world. I think it’s worth noting when a couple not only shares the same dream, but when they are able to work together in order to see that dream unfold.
Wildflowers below Devil's Castle

Albion Basin

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Here are the links to buy the items featured in my Albion shoot:

the Antigua Extend Leggings (slate)  I’m wearing a medium

Don’t forget to enter our GIVEAWAY on IG! I’m collaborating with Albion to give you an opportunity to win a FREE pair of leggings for you & your BFF, because I know once you try a pair you’ll be hooked😉

rules::
follow @albionfit
like the photo on IG
tag a friend (BOTH OF YOU WILL WIN!)

BONUS ENTRY** you can pin your favorite Albion item on Pinterest and leave the link in a comment!

Let’s go! It’s time to UP our legging game, girls!

XOXO

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But it’s TRADITION!

Up until my life didn’t allow for it, I was a Holiday snob who was adamant about keeping traditions alive. I grew up going to the same tree farm every year, hanging the same eclectic ornaments, setting out the same sentimental trinkets, decorating the same mint-frosted gingerbread men, using the same singing-snowman cookie jar… and heaven forbid anything ever be different! However these past few Christmases have been anything but traditional. We bought our house in 2012, yet (if all goes well) this will be our very FIRST year to celebrate Thanksgiving and Christmas at the colonial! Can you believe it!? I can’t tell you how fun it was to go back to Hagg’s tree farm this year with a baby!

Although it was sad to take this extended-holiday hiatus, it was also quite refreshing. I was obviously frustrated that last year’s #plumbingproject hijacked yet another year of home-for-the-holidays, but I fully enjoyed the once-in-a-life-time situation of living with my parents as a married woman. I mean, who doesn’t want 3 months of Mom making dinner most nights and offering to help you with the laundry???  I’d rather have those unordinary occasions logged away in my memory-library than have  e v e r y t h i n g  go according to plan just for the sake of ritual. I’m not saying my sentimentality or desire for normality has evanesced, but often the things that (we think) mean a lot to us are not important at all. (We might place meaning on something, but that doesn’t make it meaningful.) My BEST Thanksgiving to-date was Thanksgiving 2013, spent in a hospital bed with Cruz. While most of the country was gathered ’round tables garnished with turkey and stuffing, my little babe lay starving… so I chose to fast instead of feast. Now, how’s that for untraditional?!

But although I may not seek or rely on consistency in my own life as much as I used to, it’s still important to me that I provide a more “reliable” environment for my kids while they grow up. In an ever-changing/unpredictable world, traditions are a great way of creating the feeling of stability. I’d like my boys to look back on their childhood someday and have anchoring memories that will hopefully draw them home for Christmas, no matter how far away they may be.❤

Christmas 2015

If you’re anything like me, I had a hard time figuring out which traditions I should and shouldn’t carry into adulthood. When you get married, suddenly you’ve got twice the amount of parties, twice the gift-exchanges, twice the dinners…… which equals twice the time, money, AND extra pounds! I found myself feeling anxiety instead of relaxation, and suddenly the hilarious Vince Vaughn movie Four Christmases became all-too-real!

So… this predicament many of us find ourselves in just begs the question: HOW DOES ONE ESTABLISH THEIR OWN FAMILY TRADITIONS???

Extended family get-togethers grow so large after you + all your siblings/cousins start having kids, and eventually some of us have to go our separate ways to start something new. I think the temptation with traditions is to try continuing allllll the silly little things – the food, the activities, the gatherings – but just because you’ve always done something doesn’t mean you still have to! The pressure to live up to “the good ol’ days” can almost squelch one’s ability to enjoy the NOW-moments taking place; while you’re busy stressing over an under-appreciated 12-course meal, you could be sitting with the kids sipping the homemade hot-cider you made for the first time. The gift budget may have fallen short of your unrealistic expectations, and the peaceful-present-opening might seem a bit more chaotic than you remember it to be, but these odd and unfamiliar happenings are not bad, and they might even be the NEW traditions starting to unfold for your little family. So revel the perfect imperfections, and stop trying to recreate the past!

Your Holiday Tradition Guide

When picking/choosing your family’s traditions, it’s best to keep it real simple. I used the old English rhyme for brides (minus the something blue)……

Something Old

This one is sentimental. What are the things you and your spouse did as children that meant the absolute most to you? You may or may not have grown up with similar traditions, and some of you may have come from different beliefs or religious backgrounds, so pick 1 – 2 things each of you did, and be willing to compromise with conflicting traditions (i.e. You always opened presents Christmas morning, but he opened at midnight on Christmas Eve, etc). When the two of you cannot agree, maybe it’s time to consult the kids!

Something New

This one is personal. What is something unique/special to your family that could become a NEW custom? Maybe you happened to go on a movie-date after your first Thanksgiving together as a couple…  so why not make that the end to every turkey dinner from here on out!? Maybe you were so broke your first year of marriage that you bought nothing but lottery tickets for each other… so why not put Holiday Scratch-Its in the stockings every year!? (and be THOSE parents who reminisce with their kids about the same thing over and over😉 )

Something Borrowed

This one is casual. The best way to establish an arbitrary custom is to adopt a preexisting tradition from someone else. What have you seen your friends doing with their families that looks enjoyable/entertaining? What’s trending on social media? Read the December issue of Family Fun magazine to see what Disney is suggesting, or look up the Top 50 BEST Traditions online… there are some GREAT ideas out there! (And don’t be afraid of the ones that are out-of-the-box or opposite of how you’re used to doing things.)

Something TO:

This one is charitable. Christmas should never become about us… it should always be about others, right?! Every year, giving TO a cause or charity should be of highest priority, and you can make this process fun for the whole family! Whether it’s taking your kids to Target and letting them each select items to fill a shoebox for a child in need, or writing/drawing thoughtful cards to the child or soldier you support…… this tradition of giving instead of receiving will become the most fulfilling tradition of the season. Checkout these #GoodforGoodness’Sake ideas!

 

Note that these are my suggestions for creating new traditions, but I’m in no place to suggest what you should do with ongoing family commitments etc. My husband and I get invited to 6 different family gatherings every Christmas, plus 2 work/ministry related parties, and we don’t even come from blended families. I can’t imagine what it must be like for those of you who have more! Before we had Ezekiel, we did our best to make an appearance at each location, although most of the time the get-togethers would be scheduled for the same day/time… so we had to alternate years. But now that Ezekiel is older, we’ve made it a priority for him to see his immediate cousins, aunties/uncles, grandparents, and GGs (aka great grandparents), but we don’t stress over making it to everything else. If we happen to be available for anything broader than that – which RARELY occurs – then we feel blessed to have an opportunity to reconnect with the families we grew up with as well! I wish life wasn’t so complicated/busy, and it’s sad that family traditions have to go through these awkward and sometimes hurtful changes, but I feel like I’m doing the best I can to keep  e v e r y o n e  happy.

If you still want more ideas, here’s a list of The Strickland Family Traditions!

I hope I helped solve at least one dilemma you’ve been dealing with in regards to the starting/stopping of family traditions, and please feel free to share YOUR unique ideas for everyone to read in the comments as well! I WANT TO HEAR THEM!

Happy Holidays, Everyone! Just 16 days and counting!!!!!!……

Baby's 1st Christmas

>> Baby’s 1st Christmas <<

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

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!