The weeks that followed Maddy’s Rush Day were a test in this mother’s patience, faith and nerve. Only a fraught mother of a child with a severe food allergy could feed her child poison two times a day for the sake of protecting her “in the long run.” I believe in Dr. Mayer’s plan, have confidence in his staff & in the end product, and trust that we are doing the right thing, nonetheless each time I drew the medicine out of the bottle, placed it in Maddy’s mouth & waited with her, I second guessed myself just a tiny bit. When I give her Tylenol, Motrin, or other medicine I check and recheck the dosage. Imagine my unease in the case of peanut protein and my peanut allergic baby. Best case scenario – I was doing it right. Worst case scenario – I had the epi-pen handy. Just as anytime she’d taken a bite at a new restaurant, a new food, or when I’d seen the school’s phone number flash across my cell, I held my breath for the worst.
That first day of home dosing was the worst… for me. I planned nothing. She & I did nothing. Fortunately we are in the stage of our summer where we are okay with pj’s, coffee and terrible TV all morning if we darn well please, thank you very much! This gets us into trouble later when school starts, but for this particular morning it was perfect. However, I watched her like a hawk, nervous as could be. The rest of Maddy’s weeks with this dose went truly well. She took the 1 ML of Solution C with great confidence every day, reminding me each morning and night of the time if she thought I forgot - yea right! And letting me know of every single itch on every spot on her body for the following two weeks… and we looked at every itch, tickle, or bother that she couldn’t see to be certain that there were no hives taking over her body, but by day four they were none. She did have a few hives the first few days, small bumps that if I didn’t know any better I would not have even thought were hives, but they were gone a few days in. That was it – her body was becoming desensitized to the amount of peanut protein in the solution. How cool!
|1 ML of Solution C, 12 hours apart daily.|
Physically, she has been taking the dose great. Emotionally, it took a bit of time to stick, I think. Maddy is much like both her dad and myself when it comes to showing real emotion. She is funny, of course and uses her humor to deflect any pain or upset that she may be feeling. Sometimes, she may not even know what or how things may be affecting her when they are. This started young and I’ll never forget when I realized it. Her daddy was going through his first round of chemotherapy after being diagnosed with colon cancer and having colon resection surgery at age 32. We thought she was just fine, even though she was just four years old, we had all powered on around her making her life as normal as we could. She attended a great cooperative preschool that helped us so much, we remained very positive and we had that amazing network of family & friends we hold in our bubble surrounding us. Jason even shaved his head in preparation for the treatments in September and for Halloween that year, Maddy went as Annie, he as Daddy Warbucks, and I got to be Miss Hannigan – fun times! Through the pain there was laughter and much fun, but of course there were tears and, at times, distress. I remember this time in particular because it made me think twice about how I treat my emotions in front of her. I had my moments, my meltdowns – making the bed, making dinner, laundry, taking a shower, when I simply needed to sit down and cry. Maddy found me in my moments every so often. Rather than tell her what I was upset about my line was, “Mommy’s just really tired,” then picked myself up & got back to my mommy business. Mommy was tired, but that wasn’t the whole truth – I mean come on, I was crying about all of the other things – cancer, chemo, and the other unspoken possibilities that come with “The Big C.”
So, when Maddy melted, she had a “I just need to cry because life is getting to be too much for me at the moment and everyone keeps telling me my Daddy is sick and what the heck does that mean because sometimes I get sick and does that mean I’m going to have cancer and have to get chemotherapy and what is chemotherapy I know you told me but I don’t really get it and I saw kids at the hospital with cancer and they were really sick and am I going to have to go to the hospital and it was really sad when dad was in the hospital and I don’t want him to go to the hospital again because” meltdown, but she only said, “I’m just really tired.” I hugged her and we both cried. I knew what she couldn’t verbalize. Just as I couldn’t always, but when she said that to me, I started to tell her more of what I was sad or mad about. I started to tell her that Mommy was sad that Daddy was sick from the surgery that took the cancer out, or that he was sick with the medicine that they gave him to make sure no cancer would come back. I wanted to give her more words. She may have been just four, but she was dealing with so much. We all were.
|Maddy doesn't always let you in on any worries.|
So, when a few days into desensitization Maddy shakily whispered, “Mom, I don’t know why, but I feel like I want to cry.” I knew the pressure of this was getting to her. As a dad, Jason wanted some answers, rightfully so. He wanted, “Did something happen to you? Did somebody say something to you?” answers. But as a mom, I just knew, this was my baby telling me she was just tired; one of those moments. Pressure was building. She needed mom to help her put it into words, give her some consoling, and hug it out. I learned a lot about myself as Jason has gone through cancer and treatments, too, that I can’t do all of this alone, that I need other people to help me, to walk through this with me. I have reached out in the last few years to people I had never considered that I even needed – church, co-workers, Facebook support groups, friends and family; and in ways I never knew I needed – organizations, creatively in projects, writing this blog, pouring myself into work, by sometimes taking a break, and by simply just crying. In what ways do kids have to work out their emotions? They don’t know how yet. It is my job to help her figure that out in safe and caring ways. I hope and pray that I am doing it right.