For those of you who follow my remodel blog, you may remember me posting about my love and admiration of the arguably-unparalleled icon, Jackie ‘O. I’ve long looked up to her in many ways… she’s had a lot of influence on my “fashion game”, and I even have a room in my house inspired by her beautiful boudoir. But talk about only seeing someone through their rose-colored glasses of glitz and glamour, then suddenly realizing, her life was hardly that. There’s a reason she stands out like a diamond, and I never thought I’d identify with her from this side of the lens.
you see what she WANTS you to see…
I can’t imagine the pain of losing Cruz being multiplied. The thought of burying another child sickens me like I can’t explain… it makes me cringe, then I have images of myself throwing up until internal organs start making their way into the toilet. SOMEONE PUT ME OUT OF MY MISERY, I BEG YOU!!! I’m realizing how impossible it must have felt for First Lady Kennedy to continue on, blazing trails and pursuing her passions after burying not one, but two children (+ a miscarriage). A part of her died with each passing child – I understand that now – then just three months into processing the overwhelming grief of her latest son, she hopped into a convertible the day of the infamous assassination. Wow. And people still found reasons to put her in the negative spotlight ??? But without the ill tragedies she survived, would she have grown into those one-of-a-kind, designer shoes that so many aspiring women struggle to fill? Would she have left the same mark on society that she did had she lived an ordinary, wife-of-a-politician’s life? I doubt it. Some days, I’d rather sleep than survive another “everyday”, but if anyone had an excuse to NOT get out of bed in the morning, it was her.
I’m learning that getting swallowed up by grief is a choice; you cannot avoid the waves (nor should you), and sometimes they knock you off your feet for days at a time, but I think you learn to wade em’ out. I find myself not wanting to talk to anyone, screening texts and isolating myself one day, then the next I’m suddenly reaching out and seeking relationship. Sometimes I need the meaningless things to lighten the weight sitting on my heart, and other days the meaningless things seem so meaningless that every conversation I have irritates me to no end and I question the whole reason for existing on this stupid planet. Heck, one day I’m ticked off that my friend could get so upset with Starbucks for messing up her DAILY high-maintenance/confusing/ridiculous drink order, but then the next day I’m the raging b**** who didn’t get her morning coffee because a. she didn’t sleep last night and now caffeine is necessary for immediate survival, b. the freakin’ Nespresso pods ran out and she forgot to reorder because who remembers to buy coffee online?, and c. she doesn’t own a grinder to just use the french press, and all the backup roasts just happen to be whole bean (+ the brief thought of maybe chewing up a handful makes her feel like a strung-out addict)! Rough life huh? Uhm… NO. It’s honestly embarrassing. So obviously I’m in the beginning stages of this whole coping thing still, and hopefully I’ll get better at the “wading” process. But – what if I wanna do more than just wade? Don’t we all???
I think surfing is an incredible sport, and in some other life somewhere I would’ve been a beach bum, walking the sand in my Australian Uggs, carrying a custom board and making sure I got my daily dose of vitamin D (and you best believe I’d be rockin’ the Double-C’s, because in another life I’d still be a designer junkie 😉 )
In my opinion, one of the most fascinatingly beautiful moments to capture on camera is right as a surfer passes through a perfect barrel. I’m sure it all happens so fast that they just kinda go through the motions, but looking back at undeniable footage like this they must think proudly… THAT WAS ME. (Or a perfectionist like myself might critique and challenge myself to do it even better next time.) Come hell or high water, because inevitably both with come, I wanna see myself like ^this^, manipulating a larger-than-life, uncontrollable force (of potential disaster) into greatness. You either own the waves, or the waves will own you.
If you haven’t experienced your personal hell-on-earth yet, you will. Don’t be mistaken, as I was, into thinking that there is any lifestyle, belief, or faith perspective that will keep you in some sort of bubble that just floats above the surrounding storm’s surface – because that’s not true – and you’ll be disoriented in your faith if that’s your perspective. It rains on the just, and the unjust alike; the sun rises and falls on the evil and the good. (Matthew 5:45)
We received the test results from my allopurinol challenge: Hereditary.
After months of people praying for healing, for good news, for favor, for miraculous results, I opened the email (shaking from nerves) and read the words, “you tested positive for high amounts of orotic acid, therefore, you are a carrier of OTC deficiency.” I was all alone, my husband was at work, Ezekiel was upstairs talking to his Cars in his playroom……. I slumped down in the entryway and just sobbed. All this time (since December 2013) of waiting, wondering, passing one test and getting “inconclusive” results on another had created a spark of hope that maybe, just maybe, this was all a fluke. Then BOOM. I get punched in the stomach all over again. I couldn’t move, I couldn’t process. I zoned out like a droid who’s normal function had been temporarily disabled. Dark thoughts took over where light had started to reappear, and hellish words streamed across my frontal lobe like the bottom banner on a TV screen…”See, there’s no point in prayer… What is IS, and that is that… Life is predetermined, you fool… You’re just a pawn in a master game plan, tricked into thinking you could ask and receive the things that you need… You serve a God who’s moving and acting according to His will, His bigger picture, not your heart’s desires… this pain will never be in your past, it’s only the beginning… your life will be full of stress and heartache, and your husband will resent you for it… “
Now realizing that I had to call Jared with the news, it suddenly hit me that this was the part I had dreaded most all along. What woman wants to tell her man, “oh by the way, if you mate with me there’s a one in four chance that we’ll have a son with a failing liver… so hopefully you give me girls!” (Since the father determines the sex of the baby, one of the running jokes among friends and family has always been that Jared and I would only have boys; that with his obviously healthy amount of testosterone he’d be incapable of producing the X chromosome! Irony? I dunno but that joke won’t be funny anymore.) This feels like I’m calling to tell him that I’m barren! What if he secretly wants to leave me?
Just then, Ezekiel came down the stairs…. He was dressed up like his favorite superhero, wearing black and yellow and a concerned look on his face. “What’s wrong Mama? Why you so sad? Is you friend going to the hospitohh? ” (It made me even more sad, at first, to see a toddler immediately associating crying with the hospital). Knowing he had no way of comprehending what I was actually crying about, I just replied with, “No, Mama is just feeling sad today, Bubba”. He had seen me cry many times before… but for some reason he could sense that something was different. He began rubbing my back and uttering consoling little ohhhhs and aahhhs… it was seriously the CUTEST thing. After a minute or so, he pulled back to look up at me and said, “it’s OK, Batman can make you feel better!” Then he wrapped his arms around me, cape n’ all, gave me multiple kisses, and snuggled me tight. As I sat there, tears streaming down my face and holding my little bat boy, hopelessness dissipated. “This precious babe was born from YOUR womb, Brittney, don’t you see!?
Jared came home from work, directly after hearing my cries over the phone, and took Ezekiel and I on a date. We went to one of our favorite spots in town, Bridgeport, and just walked and talked through the situation we now found ourselves in. He was SO calm, so steady, and reassured me that this changed NOTHING. I was honestly shocked at his response, being that mine was so emotional and extreme 😉 We started dating when I was only 15, and I remember him sharing about his desire to have lots of kids (5!), and I told him I shared these same desires… which is why I thought this news would be devastating to him. Instead, he encouraged me, comforted me, and reminded me that God has a plan for our family – we just needed to figure out what that plan was. Do we keep having natural children? Do we adopt? Do we do both? Are we willing to take the risk of going through this hell again? We talked about how interesting it was that this wasn’t the first time our ability to procreate had been threatened. It was obvious now that the enemy had his sights on this specific area of our lives… but maybe that meant we just needed to turn it right back in his ugly face. After fighting through testicular cancer while I was pregnant with Ezekiel, Jared was told his fertility had been cut by 50%… and if the cancer ever returned, he’d no longer be able to get me pregnant. It’s never returned, and we got pregnant again – with Cruz – on the very first attempt to have another! We rejoiced in the gift that he was, which is why we named him Jesse Cruz (Jesse means “gift”). Fast forward to today, and how the tides have turned. Our ability to have kids is now being attacked from both sides, but our response to this had to be faith, not fear. With a 25% chance of having another Cruz, we have to take the approach that the other 75% is a potential Ezekiel. God knows all and sees all. “Be fruitful and multiply… fill the earth and subdue it… take dominion over every living thing that moves on the earth”. Ok God…… that’s just what we’ll do. (Gen. 1:28)
After 4 months of trying to get pregnant and failing, we’re now 12 weeks pregnant with our 3rd! Being that it’s a “high risk” pregnancy, we did an early (non-invasive) gender detection test using my blood, and waited patiently on the results for 10 looooong days! We FINALLY heard back from the genetics lab on Wednesday, and the child growing inside my belly is –no surprise – another BOY! A girl would not have been at risk for needing a liver transplant, so hearing the news that this baby is male (XY) increases the odds of him being sick to a 50% chance. At conception, either my healthy X or my X containing the deletion was copied… if my good X was copied, he will be perfectly healthy like Z; If my mutated X was copied, it means there will be no communication in his DNA telling his body to develop the vital OTC enzyme, and he will be born with a failing liver. He will need a transplant to survive, and we will walk through another critical medical journey.
Am I fearful? No. Am I anxious? Yes. Do I feel in my spirit that this child is sick? No. Do I feel in my spirit that he’s healthy? No. However, I do believe one thing with my whole heart: this child’s life has a specific plan, a specific calling, and specific purpose. God not only ordained this conception, but He has knit him together in my womb EXACTLY the way he is to be. Should I pray for healing? Should I pray for miraculous intervention where there might be disorder? I would appreciate all the prayers in the world from those of you who feel compelled, but I am going to spend this pregnancy in prayers of thanksgiving – “Thank You for the child who grows within me, thank You for the gift that he already is and who he is going to be, thank You for the blessings You have poured into my life overflowing, thank You for your good and perfect will, thank You for remaining the same yesterday, today, and forever!” It might sound dumb, and it might sound strange to not pray for health, but I know that my prayers would be empty and faithless. I spent all day, every day, praying for Cruz to be healed… and his body continued to fail. So for me personally, I don’t know how to pray for such things and believe that they will actually change the final outcome. I will take assurance in what I know… and what I KNOW is that Jesus himself said, “When you pray, do not heap up empty phrases as the Gentiles do, for they think that they will be heard for their many words. Do not be like them, for your Father knows what you need before you ask Him.” (How comforting!) “Pray then like this: Our Father in heaven, holy be Your name. Your kingdom come, Your will be done, on earth as it is in heaven. Give us this day our daily bread, and forgive us our debts, as we also have forgiven our debtors. And lead us not into temptation, but deliver us from evil.” Matt. 6:7-13
When I think about all these things at once, I get overwhelmed… and when I first received the news about having another son, I almost started hyperventilating. “WHY CAN’T I JUST HAVE A DAUGHTER!?” But once again, Jared was level-headed and pulled me back to stable grounds. Heck, he was EXCITED! He’s so stoked to have another son! We may have our ups and downs in our marriage – as most marriages do – but the one thing I can say is that we balance each other out. I’m the quiet, cautious one, who’s done more research on OTC deficiency than I know what to do with, and he’s the faith-filled, overcomer/subduer that just goes after things without looking back or thinking twice. The two of us are creating a team that will be unstoppable.
Whatever tomorrow brings, we are ready. We CAN do hard things.
“Do not worry about tomorrow, for tomorrow will worry about itself.” Matt. 6:34
“I can do all things through Him who strengthens me.” Phil. 4:13