This is what OIT looks like. Pretty mellow. At this moment, James is on his second lego kit of the day. He sits there quietly putting together his legos, and drinks roughly 1ml of a highly diluted solution of sesame every 15 minutes. I sit next to him with my Kindle and watch and wait. Overall, it’s supposed to be a boring day. The goal for today (rapid updose day) was for James to dose 19 times.
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The Fiercest Love
Someone posted something on social media last week that really got my goat. To be fair, they said nothing inflammatory. They were celebrating a recent decision by our State Department of Education that would affect both of our boys, especially J, negatively. I’ve been here many times before. I’m sure with social media, many parents have been here. I’m reading this in my news feed, I’m reading the comments and I’m thinking to myself, “But, that’s MY baby you are talking about. That’s MY child you are rooting against.” So, of course, I posted a lengthy comment expressing my p.o.v. (not without a little bit of snark) and went on my way. To be clear, I knew what was posted wasn’t personal. Yet, it still hurt me to read it. So, instead of letting it go, I climbed on my virtual soapbox, said my peace, congratulated myself, smugly dropped the mic and moved on.
I blame motherhood for my temper tantrum. When I became a mother, I had , for the first time in my life, an inkling of how much God must love us. Motherhood is the fiercest of loves. That’s the only way to describe it. It is a fierce, fierce love. It is a love that says, “I will move heaven and earth to keep you safe. I will follow you into hell if you are lost. I will never give up on you.” It is that kind of love that prompted me to search for a solution to J’s life threatening allergies. It is that love that fights through every anxiety, every “what if?” and continue on our path to OIT because, I believe God led us to this answer and that this truly will be a cure. If we, as mere mortals can love that fiercely, imagine what God’s love can do.
My little episode last week is small potatoes compared to what has been out there since the election. The social discord in our country is at a pretty high peak. Madonna fantasizes about blowing up the white house, Steve King sends out his “somebody else’s babies” tweet, democrats upset by the election results are called “snowflakes”, people who voted for Trump are called bigots, if you are against abortion but not for helping refugees you aren’t a Christian, if you voted pro-choice you aren’t a Christian. The list goes on and on and on. It’s hard not to get caught up in the fray; especially on social media where we can hide behind our posts and comments, spar with an unknown friend of a friend, and stir up more anger, misunderstanding and hate.
My death and dying students and I talked about this not too long ago. A vast majority of my students take my classes on their way to applying for nursing school. When we get to the section of our semester on how different cultures and religions interpret death, we inevitably talk about compassion. I share with my students a concept I learned while researching my Master’s thesis called the “web of meaning”. All of us has one and it makes up our beliefs and shapes our decisions throughout our lives. It starts with the parents we are born to, the environment we come home to, the schools we attend, the communities where we find ourselves. It is built by our families, extended families, friends, the teachers and coaches we have. Every person we have ever encountered is a part of it. It is woven by the places, the ideas, the beliefs that mean the most to us. Each silk is a composite of all the love we know, and all the pain and suffering we experience. The web in its fullness creates the story of our lives, and gives meaning to all the decisions we make, all the beliefs we have, and it is the map we use to navigate our world. It makes me, me and you, you.
So, how can I fault someone for believing differently than I do, for voting differently than I did? Each of us has a web of meaning as unique and intricate as our DNA. I remember a dear friend once told me: “In God’s economy nothing is wasted and when we all give of ourselves from a place of love, there is no want, there is no need.” These days I find myself often thinking about that statement. God created us in great LOVE, the most perfect love, the fiercest love. I wonder if He looks down on us in our division right now, slinging our insults at one another and says, “But that’s MY baby you are talking about. That is MY child you are rooting against.”
As we move further along on our road to OIT, I am constantly confronted by this fierce, fierce love. I think about all the encounters, the conversations, the prayers, the signs that got us to this place. I think about all the times I have seen God’s hand of protection on our family, especially J, keeping him safe, keeping him alive. It the fiercest of love He has for all of us. We are all someone’s baby, someone’s child. We all deserve to be looked at with that distinction, because it humanizes us, it incites us to treat each other with compassion. I may not have any solutions about how to change our culture of social discord right now but I know the answer lies in love. God calls us to do this in 1 Peter 4:8 : “ Above all, love each other deeply, because love covers over a multitude of sins.” Love each other deeply, love each other fiercely. I think that’s a good place to start.
Vulnerability
I teach a couple of classes at a local community college. One of them, in fact, my favorite class, is Death and Dying. I teach for the Gerontology department and I primarily teach nursing students. We started the fall semester this past Monday and I was leading my students in an icebreaker where we were asking each other questions in order to get to know each other better. My students asked me what my favorite class was to teach. When I told them “death and dying” they reacted with a nervous giggle. Then they asked me “why?” I thought about it for a minute and then I told them.
I get it. Whenever anyone finds out I teach a death and dying class their eyes get really big, they either cough or giggle and say something like, “um..wow…that’s got to be…interesting….” Let’s be honest, it freaks people out. So, why in the world would I teach this class on the one subject no one in their right mind would want to really delve into? One word: vulnerability. I tell my students about how I became interested in death and dying. That over the course of a year and a half I lost three people who were very dear to me: my mother from colon cancer, my dear friend from a car accident, and my great aunt from an infection. I talk about how my mom was receiving an experimental treatment for her cancer and flying out to California every three weeks. I would get to go to her chemo appointments with her and take care of her as she was recovering. I saw the good and the bad: from the oncologist who was so kind and compassionate to the nurse who seemed to care less about my mom’s privacy. I tell my students that I started noticing that people with life limiting illnesses had different physical, emotional and spiritual needs and I wanted to know how we as loved ones, community members and healthcare professionals could respond differently.
But, what I don’t tell them (because in a state funded school I really can’t) is that when we are in pain (physical, emotional, and spiritual) we allow ourselves to be vulnerable in a way that we usually don’t. When I was grieving those three deaths after that year and a half I was raw. I was so broken open in my pain that there were no airs, no masks, just grief. I was probably the most vulnerable I had ever been. But, what I learned in that time was that God is invincible. He is the only one. So I could bring it all before Him and set it at His feet and let Him hold me up in my pain. And sometimes, yes, I came before Him angry, full of rage, feeling entitled; yet, He was unchanged. That time of vulnerability allowed me to run to Him and bring it all…the hurt, the fear, the deep, deep grief and slowly be healed.
What I do tell my students is that to study death, dying and grief requires us to be vulnerable and vulnerability is a gift. It’s not easy to open ourselves up to look at our losses and our grief experiences but, when we do we can heal. Then we are able to become more compassionate, more empathetic, and more generous. Hopefully, we can give something uniquely special of ourselves that helps others to have dignity in their dying and in their grief. That is my hope for my students and myself as well.
Tomorrow, we are traveling up to Cincinnati again for more food challenges for J. The last set: kiwi, coconut, and almonds went really well for him. He passed all with flying colors. No problems. The ones for tomorrow hold a little more risk for him: cashews, peanuts, and hazelnuts. Talk about feeling vulnerable! I don’t think anything proves to be more frightening for a mom then when the health of your child is at stake. But, God has been pressing thoughts of vulnerability on my heart this week so I know where to turn. To Him, the invincible one. Oddly, I am thankful for the reminder because that means I don’t have to carry it all…that purse of mine is already full.
Make way for Ducks
For days the boys and I had been seeing ducks everywhere. They were in our front yard, hanging out at our neighbors house, on the way to the Y, on the road to our house, picking up L from preschool. It was as if they were following us. Now, ducks in our neck of the woods are not uncommon, but, definitely not this …prevalent. On a whim after a particular duck heavy outing I decided to see if ducks were a symbol of anything. From http://www.spirit-animals.com/duck/: “You are being asked to take notice of your surroundings because a new opportunity is now being offered to you.” From http://www.signology.org/bird-symbol/duck-symbol.htm: “..a symbol of freedom.” and “..a symbol of eternal life: The link between heaven and earth.” I quietly sobbed. Talk about a confirmation….
You see, for the couple of weeks prior to this I had been a hot mess. Fear, worry, anxiety, second guessing myself, playing my favorite insomnia producing game “what if”, wondering if we as a family were doing the right thing. Back in the fall, when J started Kindergarten I had a lot of questions, particularly when it came to those special things that schools do; popcorn parties, AR events, and the like. Food is always a concern for any food allergy mama. My lovely friend and neighbor is friends with the PTO president. “I’ll text her for you and find out about the food,” she offers. “By the way, her daughter has food allergies too.” I found myself at the YMCA a couple of days later and ran into our PTO president. I introduced myself and we started talking about the things every food allergy parent gravitates toward: our kids, and keeping them safe. She asks me if I have heard of OIT (Oral Immunotherapy). Yes, I had. She said her daughter had started and all was going well. She would send me some information so that I could look into it myself.
Oral Immunotherapy is a way of building immunity to an allergen by slowly increasing one’s exposure to it in very miniscule amounts. In the case of food allergies you would start with a solution, build up to a powder until you are ingesting the actual allergen. The process generally takes anywhere from six months to a year. I did my research, as I normally do with anything, walked around it for a while, and looked at it from every angle. At J and L’s six month check-up with their allergist, I asked his opinion. He said, “It works. It’s not FDA approved, but, it works. No, J is not too young to start…” I said that Cincinnati appeared to be the closest office where they were doing it. He said, ” Well, if it’s the Bernstein Allergy Group; they are very reputable. Go for it and keep me posted.”
That day I went home and looked up the name of the practice doing OIT in Cincinnati. Sure enough, it was the Bernstein Allergy Group. I called and made an appointment for a month later. As the month went by I had doubts. For five years, for J’s whole life we had been avoiding his allergens. Our home is an allergen free zone, we take his epi-pens EVERYWHERE, we make people wash their hands and rinse their mouths out before they come near him if they’ve eaten something he’s allergic to. We have been unapologetically vigilant. And now it seems that with this new treatment we are leading him into the fire. I continually vascillated between hope and fear.. until, the ducks. Those adorable, ever present ducks everywhere I turned. Of course, God would use ducks to get through to me. One of my all time favorite children’s books is Make Way for Ducklings by Robert McCloskey. My mother always referred to me and my siblings as her “ducklings” growing up. I have often seen ducks followed by their ducklings in weird places: across major roads, at a mall, at our local splashpad. I always delight in seeing these duck families and in a way, makes me think of my own as well.
We are moving forward with OIT for our precious boy. And, yes, it is scary to face the unknown but, we have hope. “And hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us”. Romans 5:5. So…we are making way for ducks..for a new opportunity, for a treatment that can give our J freedom..and most importantly, we are making way for hope.
Landmines and Grace
Being a food allergy family can be hard. Hard, as in sometimes you feel like the whole world is just one giant…landmine. I remember the day I became a food allergy mama. My first born was nine months old and he reacted to a fingerful of hummus (literally, what could fit on the pad of my index finger). Within five minutes he broke out in hives all over his face, he rubbed his eyes, he got lethargic. Somewhere in the recesses of my memory I remembered a story told around my aunt’s dinner table. A boy in their neighborhood had died in his father’s arms after taking a bite of a peanut contaminated power bar. I called 911. The paramedics came, they rushed us to the hospital, my baby received a shot in his thigh on the way.
The testing and the waiting came next. We saw the pediatrician, who referred us to the allergist, who ordered the blood work. Then came the news…we need to avoid sesame, tree nuts, peanuts, eggs. I remember a fight I had with my husband about a jar of peanut butter in the house that he didn’t want me to throw away. I was being an extremist. He didn’t get it, not yet. But, to be fair he was out of town that day. He didn’t ride in the ambulance. He didn’t hold our baby in his arms while praying the paramedics got there in time.
Next came the anxiety. Panic attacks. Tears. I remember sitting on the stairs in our house one morning, crying, begging my husband not to go to work. I didn’t want to be alone with our baby. What if I fed him something that caused him another reaction? I could have killed him with that hummus. What kind of mother am I? Then came the fear, the hypervigilance. I would take him to the park and search for that insidious sesame. Was there a rogue peanut on the slide, could there be a lone walnut in the play tunnel? One Sunday we arrived at church only for me to realize we had left the epi-pens at home in a different bag I had carried the day before. I felt like we were sitting ducks. I made my husband hightail it out of there as fast as we could go.
The communication challenges came next. I had to tell my mother-in-law that no, it wasn’t okay to feed him french toast while I was upstairs packing. I told the (supposed peanut and nut free) mom’s club president that yes, my son did STILL have life threatening food allergies.. while she ate a bag full of trail mix in front of us. My baby got older, he became a toddler and then a big brother. I hit rock bottom with postpartum anxiety and depression about three months after his brother was born. I was looking for the next reaction. I had to be prepared that our new baby could be allergic to something too. The hypervigilance, and sleep deprivation was too much. I lost forty pounds in two months and couldn’t stop crying. My sister-in-law heard the distress in my voice over the phone, drove through three states and came to stay awhile.
Lo and behold, little brother DID have a reaction, first to bananas, then avocados and finally two different classes of antibiotics. But, over time, things got better. I found a doctor and a counselor who helped me with the anxiety. We quit the mom’s club but, found a loving MOPS group that had more than one kiddo with a food allergy in it. A friend in the neighborhood who’s son also has food allergies recommended a preschool to me. My son’s first year there was great, his second year even better. As a family, we have figured out a routine and a system for managing our allergic life. My husband is more than on board now. Traveling is doable but, sometimes a big old hassle (especially flying). We do it anyway. Eating out is very tricky but, we’ve found some places where we feel safe. We don’t do it often. I’ve become a pretty good baker from all that practice making allergy safe cupcakes and cookies for birthday parties and school events. We’ve made some amazing friends that we love to pieces and totally get the whole food allergy thing.
Now we are navigating Kindergarten, a new school, new teachers and some new friends. I miss the preschool years, his tiny school where everyone knew and loved him. Elementary school sometimes feels like a big, bad, scary place and sometimes it feels like a good fit. In spite of his food allergies, my boy is thriving. He is happy, healthy and loves science, swimming, Pete the cat, and jumping on the trampoline with little brother. But, my fear has remained. Some days I feel ready to take on the world and some days I want to lock the doors, homeschool him, and keep him in a bubble. I get jealous sometimes too. I hear about friends trying new restaurants, traveling new places. It sounds so easy. And everywhere we go we travel with coolers, packed bags, two different antihistamines, two epi pens. I wipe down the seats at the movie theater, bring a big blanket to cover the airline chairs, interrogate every waitress we’ve ever had. But, that’s life.
One day I was driving down the road, not too long ago, mentally preparing myself for the upcoming trip our family was making. I could feel the tension in my body as I was checking off my to do list in my head as I was in the midst of errands. I got angry, frustrated, and started asking God “why?” Would we, could we, ever get to a place where we could live without fear, without worry? Would we always have these landmines around us? Immediately, I saw a vision of myself in a stark valley surrounded by oppressive, black clouds of anxiety. I was desperately trying to grab onto them and hold on. In the next moment, as clear as day, I heard a voice say, “Do you trust me enough to bless you? Do you trust me enough to lead you out of the valley?” Although I didn’t know it at the time, that was the beginning. The beginning of our next step. The beginning of the grace that was to come. God’s beautiful, holy grace.
makewayforducks 