Results?

And my crappy Lazarus analogy

Negative. Mayo Clinic has deemed the results negative, but did acknowledge an elevated level of glycosaminoglycans. They believe this to be from contamination, or could be a sign of some other disorder. So though the answer is not a perfect and resounding “NO!” it is more of a “Almost assuredly and mostly no.”

You would think I would have jumped for joy, but instead I felt immediate fear. What if the elevated levels mean that he actually does have Hurlers?! What if we have to repeat this test?! I CANNOT WAIT AGAIN! I will kill myself. I will jump in front of a bus. I will die because I cannot take one more ounce of stress. These thoughts were immediately followed by more fear that by me saying ‘I can not take any more’ that I was issuing a challenge to God to give me more pain and anguish to prove that I can take it. Cynical, I know.

I put too much faith in science and logic and exactness. Jesus knows that about me, and He wants me to trust in Him whatever the outcome, and I struggle with that–with saying, “Whatever the outcome, I love and trust in You.” Because a part of me, the sinful part, does not feel that way. I love Jesus when I receive His blessings and goodness, and I often lose faith in Him when “it’s not fair.” Jesus knows this about me. So, I believe He gave me a lab result that wasn’t quite perfect. And I reacted predictably–in simultaneous relief and despair.

I am reminded of John 11 account of Lazarus. Jesus loved Lazarus and knew he was very, very sick. Despite this, Jesus stayed where he was for 2 days and said (paraphrased), “This will not end in death, but this will be for God’s glory, and God’s Son will be glorified through this.”

Y’all. Lazarus died. He had been dead for 4 days by the time Jesus came into town. Lazarus’ sister Mary told him,”If you had been here, Lazarus wouldn’t have died!” And then Jesus opens the tomb of a dead man, tells him to get up, and he DOES! Like a mummy, Lazarus walks up out of the tomb. Seriously on the mummy part. John 11:44 says his hands and feet and face were wrapped in cloth 😱

What I’m trying to say, and probably failing at, is that God rarely gives me expedient, nice, and tidy answers. He gives me halfway answers, prolonged waiting times, and frustrating questions. I forget that an answer of “maybe” is not the same as a hard “no,” and sometimes I forget to be grateful for that. Jesus is working for something huge, here. Bigger than huge, even. My despair is caused by putting my faith in the world instead of the One who created it. Shame on me. Jesus is healing my baby. I’ve seen proof of it over and over again, and I still doubt. And today, He answered our prayers. Thank you for your prayers. I am blessed beyond measure by those who love and pray for me and my baby.

Clark is an overcomer, and we are mighty when we unite in prayer. Love to all ❤️

EDIT: I was hesitant to submit this update because my pediatrician wanted to talk to geneticist to clarify the confusing results. I decided to believe in the negative result. I pressed submit and my pediatrician called me immediately. He said that the Mayo Clinic geneticist said the elevated level was from craniosynostosis and NOT Mucopolysaccharidosis. You will never convince me that wasn’t Jesus. 😭👏🏻🙌🏼❤️

There’s a lot of ugly here

My most brutally honest post to date

I’m mad at God. I mean, I am really, really pissed off. Let me back up a minute and fill you in on past events. As usual, prepare yourself for my rambling overshare–

Ben graduated! Yes, he really did. He graduated with his bachelor’s degree in Engineering. He had multiple job offers and accepted an awesome job before he even graduated. I. Am. So. Proud! We left Ohio with big plans and it’s happening, y’all. Ben has changed careers and has started work as a structural engineer as of Monday. I’m winding down my school year and have been re-hired as a PRN nurse on my old unit for the summer. I finished my awful research class. Basically life is awesome, right?

Then life throws you that curve-ball. I hate, hate, HATE to be cryptic, but I don’t want to share exactly what’s going on quite yet. I need another few days before I can confirm everything and share it with whatever readers may exist. Believe me, I hold no illusions of having this huge platform of captive readers. I’m not that into myself, so I can’t see that I have more than a few close friends/family member that actually have an interest in the Rayners’ going-ons. Anyway, I have this need to word-vomit– to get my anxieties out onto these blank pages and overshare. So here goes.

I’m worried. Why? Because I’m waiting on results again. Once again, I’m waiting. And I’m damn tired of waiting. I mean it. I no longer feel like I can wait in any manner that is socially acceptable. I cannot sit back and say, “I’ll know in God’s perfect timing, and that’s alright with me.” Because it is not alright. It is SO not alright. It is effing torture, and I am filled with fear and anxiety. I am also SO angry. I am angry that–once again– when life seems to be coming together that there is an insidious, lurking threat ready to destroy us.

I can’t pray this away. I alternate between feeling good and peaceful to feeling like the whole sky is falling down. Isn’t it, though? I don’t know how to deal anymore. I used to hit the pavement, you know? Throw on my raggedy tennis shoes and run until it hurt. That way I could at least feel semi-accomplished. Yesterday, I didn’t do that.

I googled worst-case scenarios, formulated hypothetical plans, and cried to my mother. I went to the grocery store to delay picking up my children. I grabbed a 6-pack of petit fours to binge on because I eat my feelings. My coping skills are 👌🏻. I then promptly dropped the box of petit fours onto the pavement while I was getting into my car, which should tell you exactly everything about how my life is going these days. I drove to daycare in defeat and then I carried my children out of said daycare, one in his heavy carrier, the other kicking and screaming because I wouldn’t allow her to continue playing in the water fountain longer than the 2 minutes she had already done so. This older woman (older than me by 20 years) was walking her children (grandchildren?) to the car. She stopped in her tracks, turned around and looked at me in disgust, and said, “Ugh. Y’all come on!” to her kids. Like I was an unfit parent for having a 2 year-old that was tantrum-ing. So, to you, 50ish, pudgy, short, dark-haired lady, “Screw you.” Seriously, though. Next time you look at me like that I will embarrass you soundly by saying, “Please offer me your *expert* advice since you are clearly not in favor of what I am currently doing. Please, do that. And in exchange I will share with you that the Carol Brady hairstyle went out of favor about 4 decades ago. See? We can help each other, you hag.”

Petty, I know. But I was not feeling like the bigger person yesterday. I wanted someone else to feel as bad as I do. I wanted someone else to worry and be anxious and understand the absolute hell I’ve been through the last year. I wanted to be understood. I wanted to enjoy the blessings in this life. I wanted to recognize all of the good, and I also wanted to be ignorant of the bad because I’m tired of knowing all the things and imagining worst case scenarios about the things, and honestly I just wanted to give up because I was so tired. The kind of tired that sleep can’t fix.

Truth be told, I have some ugly vices. I like to withdraw when I’m sad. I crave alcohol and isolation. And yet, because of Jesus and immense growth, I refuse to give into those temptations. Even though they’re there, they just aren’t that loud. I eat my feelings instead. Like yesterday, I ate 3 out of the six smushed-to-hell-petit fours instead. And have plans to eat the remaining ones today. I’m #healthy.

And, in the midst of my downward spiral–I’m reminded…that Jesus has not left me. That the moments of peace I have been blessed with are not of this world. The peace that passes understanding is a gift from my Jesus. My husband is a gift from Jesus, my children are a gift from Jesus. He loves my babies more than I ever could, and He has plans for GOOD. If I were the only human in creation, God would have still sent Jesus to die for my sins.  I don’t need to understand His ways. I just need to trust that He loves me, He is good, and He is sovereign. And if I step back for a minute, that’s pretty easy. It’s literally saying, “You are the God of all the universe. You hereby get to deal with this crap problem because I am tiny and human, and I cannot even.” And yes, I actually pray like that. I also say, “These are some shit circumstances, God, and I am majorly pissed off at you. Fix it, Jesus.” My favorite song right now, is called “Sparrows,” by Jason Gray. It’s based on Matthew 6:25-34. The chorus lyrics are:

“If He can hold the world, He can hold this moment. Not a field nor flower escape His notice. Oh, even the sparrow knows, He holds tomorrow.”

So there you have it. I am a sinful mess with poor coping skills. But I am okay with that. I am me. I’m still here. And Jesus loves me, the foul-mouthed and imperfect woman that I am. I will update soon. Love to all ❤️