Happy Birthday, Maddy! Seven years old and one of the most brave people I have ever known.
Maddy’s birthday was celebrated with light sabers, Darth Vader masks and good friends in our back yard. Nine pals came bounding into our house - swim suits, towels, and flip-flops - dripping with optimism that the rain clouds would clear and fun would be had. The spread – Tie Fighter Ties, Vader Veggies & Sarlacc Pit Dip was ready. Yoda Sodas were poured, the piñata was hung and Pin the Saber on Vader was prepped - and the party had started.
In fact, the whole weekend was a party. Our weekend was jam-packed with family & friends as we celebrated Madeline’s seventh birthday. Finally, July 30th, after cake, ice cream & gifts, we said ‘see you later,’ whispered, ‘good-night’ to each other and hunkered down in bed in preparation for the following day – the first day of desensitization. You know that old saying – “Tomorrow is the first day of the rest of your life.” For us it held new meaning. We - Jason, Madeline, and I, were anxious, excited, nervous, not quite scared… just yet.
Our morning was much like you might think when you are on a tight schedule and in a hurry – late and hectic. Slept right through that stupid alarm & since Jason couldn’t go with us, I was uneasy with the drive so wanted to get a good start. Rushed, unshowerd, uncoffeed, and with sleep in our eyes – we marched on toward West Bloomfield & Dr. Mayer’s office, somehow making up time enjoying the scenic route to avoid construction.
As we entered the doors, Dr. Mayer’s staff ushered us toward the back wasting no time getting started. Lety, the nurse, gave us a customized plan for Maddy detailing her dosage plan – a blueprint for her entire desensitization program, really. It was encouraging and even hopeful. Dr. Mayer explained the strategy for the day – nobody would ask Maddy any specific questions. No, “Is your throat scratchy?” or “How’s your tummy?” These questions are too psychologically powerful and might sway her into feeling nonexistent itches, bumps or bellyaches. More general questions like, “how are you doing?” would more likely get honest answers, or as it turned out, sometimes none at all as she zoned out in front of her DVD.
Within minutes of these explanations, Lety checked vitals & was in with the first dose – peanut flour (dust, really) in a liquid solution. She showed it to me – illustrated its position within the list on the sheet. Madeline maintained complete composure in her presence, took the peanut solution in her mouth, turned to me, waited for the nurse to leave, and crumbled. Great big tears welled up in her eyes, her legs trembled, and she whispered, “my stomach already hurts, mom, it already hurts.” My stomach dropped to my knees. What was I doing to my child? How could I put her through this on purpose? How long will this take and am I cut out for this? Is she? It took every ounce of strength I had to not pick her up, grab our things and leave. Walk out the door and say forget it, we know how to live with a peanut allergy, we can handle that. What we can’t handle is deliberately feeding my peanut allergic baby poison … right? Right?
Instead, I held her, rubbed her back & helped her calm down, all the while holding my own tears back. Was this the right decision? To make my child feel such anxiety and fear? My heart ached as I decided to stay. Words of encouragement came from family & friends through e-mail, texts & Facebook even if they didn’t know what had actually occurred. As I spoke to her and held her, she calmed down, turned her attention to the television, she realized nothing was happening & slowly understood she not only could do this, but wanted to do it. She was not anaphylactic, she was not having a reaction, even a slight hive, stomach ache, or wheeze.
In this entire process – every 15 minutes more peanut solution with an increase in the concentration of peanut protein every other time or so – Maddy just became more comfortable with the process. I continued to update Jason, close family & even FB. I joked that with every dose increase, she was doing fine, but I was getting a tummy-ache & hives! I knew we were on the right track, though when I asked her how she was feeling and she said “Not good. Great!”
After a few more doses, though, a mosquito bite-sized hive on her belly told us it was time to stop for the day. We’d been there from about 9:30; she reacted just after 2:00. Fearlessly, she’d said, “I think that is just a mosquito bite from Saturday,” she was ready for more. Lety swooped in with Benadryl, Dr. Mayer, checked her vitals again and then we just had to hurry up and wait to see if other symptoms arose for an hour. We were leaving with a smaller dose than expected, but it didn’t matter. We’d started peanut desensitization, we were moving ahead. Maddy and I were both excited about it. Dosage instructions were given, questions answered… it seemed so simple.
In the hours I waited with Maddy, I only figuratively bit my nails & paced the floor. I poured myself into a creative outlet, and drank more coffee than I needed in one day, but I really just sat and waited with Maddy. Dr. Mayer actually commented on the fact that I was fairly calm… inside I was a jittery, explosive, mess lying in wait for the reaction that was inevitable. I’ve had much training in being calm for those I love and for Maddy I have always tried to model keeping my composure while remaining open & responsive, especially in times where it could be difficult for her. Prior to the appointment there’d been chats about this being scary, tough, or any other emotions this could cause, but that day, I was cool as a cucumber. Maddy has been through a lot in her seven short years, this whole family has. And she has always been stronger than I could imagine a child could be. She is the bravest little girl I know.
|First dose down the hatch.|
|Growl Tiger goes everywhere with us.|
|Dr. Mayer checks vitals after the reaction.|
“Sometimes the biggest act of courage is a small one.”