Our peanut allergy research journey. November 19th
Tonight has been a marathon of sprints.
He finished football practice at 5:30.
He was starving but he needed a shower.
He also needed to take his dose of peanut powder.
He can’t dose until one hour after he showers.
He can’t sleep for two hours after he doses.
He has to decrease activity for the rest of the day.
He has to take the dose on a full stomach.
So I need to make supper.
He has a test to study for; let’s do that for the hour-ish between the shower and supper.
While I’m mixing the dose, you read that four page review sheet out loud to me.
Ok stop reading because I really need you to eat this dose so I can set the two hour timer and monitor for symptoms.
Dang, it’s quarter after seven.
I need to take my shower and get things ready for work tomorrow.
By the way, did you get your doctor’s note signed today?
I can’t take a shower. I’m scared to take a shower. Yesterday was updose day. They jacked him up with 240 mg of peanut powder while he was lying in a hospital bed next to a crash cart. Tonight, I’m feeding him the same amount at home, alone, Benadryl and epi pens within reach, and a hospital 15 miles away. I’m monitoring him for symptoms of anaphylaxis. How the heck am I supposed to do that while I’m in the shower? What if he starts swelling or stops breathing? Those are not irrational “what ifs”. The are exactly what I’m supposed to be watching for.
He’s tired. His body is fighting hard now. It’s not the 3 to 6 to 12 mg updoses that we began with five months ago. I can see a change in him and it’s eating at me because I know we had a choice and we chose to do this.
I’m exhausted, drained, running on fumes and all I have to do is show up. Mix the pudding, set the timer, drive him to practice, quiz him for the test. Just show up. He has to DO THIS! He has to eat the pudding and his body has to fight with all of its might to not go into anaphylaxis. He has to learn the material and actually take the test and then take the hit when he gets a bad grade. He has to get up and get dressed and do everything everyone else is doing and then go home and eat the thing that could kill him so that he can someday eat it without dying. My God, what are we doing here???
I’ll tell you what I’m doing, I’m falling apart. I did this because I lived my life in fear and I don’t want to any longer. I did this because I told him that I would not let this peanut allergy stand in the way of him doing whatever he wants to do. Well, it got in the way. And we have a chance for it to get out of our way.
I am an old gal with a long fuse and a big spirit. Peanut allergy has reached the end of my fuse. I am fighting mad at it. When I get fighting mad, I am pretty likely to win the fight. BUT THIS ISN’T MY FIGHT AND IT’S KILLING ME! It’s HIS body, HIS weariness, HIS life.
Any mother would take the beating for their kid. We all know this feeling. There are too many moms who know this feeling in a much more critical setting. You moms who have children suffering with unimaginable disease, unlimited developmental and physical obstacles, mental anguish and substance abuse… you moms. My soul is screaming out for you. Screaming words that can’t be deciphered because “I can’t imagine” is just a cliche slap in the face. “It’s a roller coaster.” Are you kidding me? People stand in line to get on a roller coaster. You are spinning on a yo-yo over a canyon and you did not ask for this. Can I be honest? I’m actually afraid of you. I am self righteous and self centered and your pain and turmoil is too big for me to understand or manage. So yeah, I sidestep you and crawl into my own little, very little, mess of misery.
“I did this because I lived my life in fear and I don’t want to any longer.” This isn’t going to take away my fear! When will I learn? My fear is in my clutch and there is no magic ImmunoTherapy that will take it away. And fear just looks STUPID on me. How dare I declare the strength and providence of my God and walk in the arrogance of fear?
“I did this because I told him that I would not let this peanut allergy stand in the way of him doing whatever he wants to do.” I don’t have the power to take anything out of his way! I don’t have the power to decide that anything is standing in his way! That paradoxical power looks STUPID on me! How dare I declare the mightiness of my God and walk in the arrogance of a power trip?
I confess the mixed messages that come out of my messy, sloppy, faith with its self inflicted wounds. I’m sorry. I know you don’t see it in me, I’m a horrendous hypocrite, but I really do believe that God is all powerful and He takes away all fear. I have lived in his power and given him my fear but I don’t stay there. I grab the yo-yo and swing over the canyon and act like a damned fool.
I don’t know how to turn this one into thirty days of thanks and giving. I know I’m not damned. I know I’m forgiven. I know I want your forgiveness for sending mixed messages, but I don’t need it. I only need God’s forgiveness and I have that. Over and over and over, I go on a power trip until I trip the breaker and fall back at His feet where he takes my remorse and gives me restoration.
I really don’t know what made my heart so raw tonight but let me speak to you mommas, you caretakers, you who love others as though they’re your own… your children and their struggles do not define you. Those trenches that are shoulder deep do not define you. You are a child of God. If that isn’t how you are defined and recognized, then run to Him now. If my son was having an allergic reaction he would run to me now. I’m clinging to the edge of a sinkhole and I have no one to cry out to except God. Trust God.
I’m thankful for your prayers and encouragement through this very, very amazing opportunity. But please, no rah-rah’s tonight. I don’t want to hear what a wonderful mother I am or how strong I am. I don’t want this attention. If your heart is touched by Coleman’s story, then please look around for someone who is truly suffering with no answers and no hope and bring them to the throne of Grace and the feet of the Almighty. If you are that person, leave a comment because somebody needs to pray for you just as much as you need their prayers.
This passage is often spoken as words of encouragement, but what if we read it tonight as I think it may have meant to be read… as a command?
“Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” Matthew 11:28-30