Last night, I heard the words that I knew would eventually come, “I’m getting tired of this.” I figured he would. Eating chocolate pudding mixed with pasty powder for 127 days in a row would make me gag. But the words didn’t come out of his mouth, they came out of mine.
It wasn’t really a distress call… just a sigh, boredom, exhaustion. I’m having relapses of mixing formula with one eye open when he was an infant. Just… tired. Ready to get on with the solid food, or in this case, the maintenance level of ImmunoTherapy.
The solid food was actually more work. It was messy, hit and miss, spit and spill… but it was the target that would set the pace for the rest of his life. Today he updosed to 240 mg. We hit the timer for the two hour monitoring and, this time, the two week final lap. Our next dose will be the target: 300 mg, the pharmaceutical powder equivalent of one peanut.
The gold dust comes home with us in a fold out box of blister packs. Each section has the exact dose to be mixed with the nightly pudding. The box bears no fonts or logo, just a label with the identification and lot numbers and codes in plain black text … the generic of all generic. It’s stored in the refrigerator and transported in a tote with ice packs. Every dose must be recorded in an electronic diary. The only things that can be discarded are the shells of the capsules that hold the peanut powder. Everything else must be returned to the research clinic.
It’s research. Antiseptic and calculated and tightly monitored and distributed. The daily routine, the collection of data, the updoses and targets are all reported and recorded. The steps to the intended outcome are clearly defined. But the outcome is not clearly defined. It’s research. It’s not predictable.
The day the clinic contacted us about this opportunity, my hopes were higher than they have ever been. They were quickly crushed when we discussed all of the criteria and discovered a deal breaker. My friend said, “another child needs it more,” and I had to check my gut. I would not ever take what another person needs. I found myself facing a brutally honest reflection of my faith. I had to decide then and there to trust God completely, or I would not survive one more step of food allergy survival. And that was it. Have faith or don’t.
Of course things worked out for us to be in the trial, but not without many moments of doubt and fear that knocked me to my knees. I tried so hard to KNOW what was going to happen, to figure it out and make it work.
My faith was compartmentalized. I had trials encapsulated and sealed in blister packs. I punctured them. I tried to build a tolerance to the trials instead of letting the trials help me grow. Every time. Every single time we approached another lofty goal in the screening, and even still with the updoses, I took out the box and punctured a package. Every time we had a setback, I punctured the package. When I was bored or when I was flustered, I punctured the package. I have repeatedly, ritually returned the box to God after puncturing my faith. I’ve poured out hope and trust and thrown away the empty shells and brought him the punctured packages.
You know what? He took the punctured packages and sent me home with a new set. His intent is for me to GROW instead of KNOW. This is a trial. For the research company, it’s a trial to develop a product. For me, it’s a trial to develop my faith.
Do you have punctured packages? Have you faced trials that have you still licking your wounds? Are the trials leaving empty shells instead of building strength? If God gave you a new box, what would you do with the trials in it?
I’m thankful for the punctured packages. I have HATED the raw moments of despair and fear and anxiety. I have hated the desperation I feel to get this lifesaving resource to others like us. I’ve hated the hope I dare to have! But I’m thankful that I can bring the punctured packages to my God who doesn’t need research or trials. He knows the outcome and I don’t need to. I just need to have faith.
“For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.” Isaiah 55:8-11