Tag: allergies

I Just Want to Just

It’s been a hard day.

It’s been a hard week.

I’m texting with a friend who’s been having a hard month.

We both have kids who, for different reasons, have special needs, and it is EXHAUSTING. Don’t get me wrong, any parenting of any child is exhausting. But there is a different kind of fatigue I’ve come to know since I was introduced to the “norm” my children don’t fit into. It’s an ongoing fatigue, with no promise of anything ever getting easier. Today was difficult, and tomorrow likely will be, too. Today I worked my butt off to maintain a sense or normalcy or to meet my child’s unique needs, and it will do little to affect tomorrow, so I have to do it again. And again. I can never just…. JUST. I can’t just drive through a fast food restaurant and feed my children anything from the menu. I can’t just send my child to school and expect the day to go well. I can’t just take my child anywhere and expect it to be uneventful. I can’t just watch a kid’s movie with any deaths or sad moments (so scratch every single Disney movie ever). I can’t just watch Shark Week. I can’t just Google an answer and have the question be finished.  I can’t just eat at any place in the city, can’t just accept offers of casseroles when I’m ill, can’t just enroll my child in school or watch him play soccer or introduce him to someone new or go anywhere without needing a bag for an EpiPen and Benadryl. And with the limitless access we have to blogs, and the freedom we have to write them, we’re given the unique opportunity to get a peak into the lives of other families that may not look like ours… or to feel understood by families who look very similar. I’m not alone. WE’RE not alone. There are many, many parents who, despite their beliefs or location or socioeconomic standing, all want one thing.

Parents of kids with allergies. Parents of medically fragile kids. Parents of premature babies. Parents of kids fighting cancer. Parents of kids with autism. Parents of kids struggling with their identity. Parents of kids with emotional disturbances. Genetic disorders. Mitochondrial disorders. Eating disorders. Sensory processing disorders. Mood disorders. Attention deficit disorders. Kids with IEPs. Kids with diabetes. Kids with developmental delays. Kids who can’t travel anywhere without a piece of medical equipment attached. Kids who can’t travel anywhere at all. Kids who fight authority and kids who will likely never live alone. Kids with below-average intelligence and kids with above-average intelligence. Kids who teachers don’t “get” and kids who doctors can’t help. Kids who get stared and parents who are judged.

Parents who are misunderstood. Parents who are exhausted. Parents who feel isolated. Parents who spend their free time on research and their savings on co pays. On weighted blankets. On medical strollers. On home healthcare nurses. On surgeries. On treatments. On medications. On conferences. On books. On organic ingredients. Parents who have cancelled plans more often than they’ve kept them. Parents whose schedules are mostly ruled by their kids’ needs. Parents who have hung their heads in the gaze of disapproving strangers. Parents who advocate and fight tooth and nail to keep their child from falling between the cracks. Parents who never imagined their life as it is now. Parents who just want to JUST.

Just want to eat at a Chinese or seafood restaurant. Just want to be able to leave the kids with a babysitter. Just want to spend a few dollars on something for themselves. Just want to see their friends more than they see doctors or therapists. Just want to be able to leave their child alone with their other children. Just want to walk through a store without bringing attention on themselves. Just want to enjoy their child’s laughter without the interruptions of medical equipment beeping. Just want to hear their child laugh at all. Just want to go through a day without fearing – or getting – a phone call from the school. Just want to fill out paperwork without needing extra room for all of the conditions or medications to be listed. Just want an answer so they HAVE a condition to list. Just want to be able to meet new people without having to explain anything. Just want to know that the school is meeting their child’s needs. Just want to not live in fear. Just want to dream and plan for the future. Just want to be able to attend birthday parties. Just want their kids to make friends. Just want their kids to see how amazing they are. Just want the rest of the world to see how special and loving and wonderful they are. Just want to know that it’s going to be okay.

All parents want some silence from time to time. All parents want to pee alone, go on a date, and have a healthy child. All parents want different versions of the same things. But some parents, just for a little bit, just want to JUST.

Yes, there are plenty of parents who struggle with situations “worse” than food allergies or high IQ. But that doesn’t make the very real difficulties of parenting kids like mine any easier. We’re grateful to know our kids, grateful to have been trusted enough to care for them, grateful for the access we have to modern medicine, alternative medicine, doctors and forums and blogs and therapists and support groups. But we’re tired. And sometimes we want to just JUST.

It’s Not You, It’s Me – Life As An Allergy Mom

We’ve all cringed when someone’s snotty, hacking child comes hurdling towards our babies, hands outstretched, ready to infect them. Doctor’s offices, restaurants, grocery stores, church… people LOVE touching babies. They’re soft and squishy and instinctively grasp your finger. But babies have very sensitive and weak immune systems. Their bodies can’t fight like ours, and they’re affected much more strongly by simple bugs. So we protect them, turn away from strangers, put covers over their carseats, or just avoid public places altogether.  When you realize how contact with other people can harm your child, you go to great lengths to protect them, shield them from that harm until their bodies are ready to fight it off.

But what if their little bodies never can?

I am the mother of an allergic child. Two actually, but one isn’t severe. He is allergic to peanuts and amoxicillin, both only causing hives and both easy enough to be avoided. My really, severely allergic child is the baby. She’s 19 months old and already has a laundry list of no-no foods and environmental allergies, each with its own reaction ranging from hives to bloody diarrhea to anaphylaxis. We carry an EpiPen and Benadryl everywhere we go. We avoid restaurants and potlucks and pre-packaged snacks. Birthday cake is as accessible as Atlantis. Grocery shopping takes twice as long and costs twice as much, between the constant label-reading and the price of buying organic. Oftentimes there are at least three different meals being served to our family of 5. I’m constantly checking and re-checking ingredients, watching for signs of a reaction, holding my breath if she finally gets to try a new food, keeping an eye out for the green poo that parents of allergic babies know all too well, Googling plant families and related vegetables… It’s a lot of work. Of course, it’s all worth it. I’m an info-aholic, so I crave knowledge, am always looking for new sources and new information on her numerous allergies. Sadly, her allergies seem to be increasing, so I find myself back at Google fairly often. Anytime she cries out in her sleep, I immediately grab my phone and quadruple-check the plant families of everything that was in her dinner. All this to say, I am ON TOP of this allergy thing. I research and ask and avoid like a boss.

But this weekend, I was shaken. Within 20 minutes of arriving at my mom and stepdad’s house to swim, baby girl began rubbing her eye. She had only napped for about 10 minutes, so I thought she was tired. But then she really started digging into it, whining even, and I thought maybe she’d accidentally gotten some sunscreen in her eye. Nope. Her eye was getting bright red and she was getting really upset. I took her from my mom and noticed some pink splotches on her forehead. Being a super pale little thing, she has been known to get splotchy from crying, but this wasn’t that. Could there be an ingredient in the sunscreen she was reacting to? Reading the label twice told me no. And this reaction was localized. It started getting worse. The splotches were spreading, getting darker, and swelling. Her eye was nearly shut and her lip was almost twice its size. She was having an allergic reaction. We quickly dosed her with Benadryl and watched her. My mind was racing. EpiPen or ER first? EpiPen or ambulance first? But the worst thing in my mind was that I COULD NOT FIGURE OUT what was causing this. She hadn’t pet the cat. She hadn’t eaten anything. There was an actual line down her face where you could see the reaction – her left side was fine, her right side was swollen and red and splotchy. Something had touched her face.

But what?

Thankfully, the Benadryl did the trick. The swelling started going down and the spots began to fade. We took pictures of her for documentation, but they break my heart, so I won’t share them. She perked back up after an hour or so and had a great time swimming. But what had caused the reaction? The question never left my mind. I’m STILL racking my brain, trying to pinpoint what caused it.

The next night we had a church back-to-school swim party. I hadn’t slept well the night before, constantly checking on her in the night to make sure the reaction didn’t reappear once the Benadryl wore off. We hadn’t been there five minutes when I noticed a rash on her. This time on her legs. She hadn’t eaten anything. There were no cats. No one had decorated with burlap. She’d just been in chlorinated water the day before, so it couldn’t be that.

What was HAPPENING to my baby?!

I just about had a meltdown. For all of my research, all of my learning, all of my avoidance and diligence in checking labels and ingredients and packing safe snacks, everything I had done to protect her… there were still things that could hurt her. I could not control everything about the environment we were in, and I didn’t like it. Any time someone reached out to touch her, my heart leapt. What was on their hands? What had they recently eaten or touched? Did they have pets? What was in their lotion? Bodywash? Perfume? Could this person, innocently greeting my child, cause her to go into anaphylactic shock? There was a young girl, about two years older than my own, who followed us around like a shadow, constantly trying to touch or hold her. My chest started burning and I couldn’t catch my breath, hot tears were rolling down my cheeks. I was FREAKING OUT. My dear friend recognized the anxiety and took baby girl from me, my husband took the boys, and I leaned against the side of the pool, alternating between breathing and running worst-case scenarios in my head.

I know, I know. Anxiety is not of God. He has not given us a spirit of fear. Be anxious for nothing. All easier said than done when you’ve just seen your child have allergic reactions to something you can’t name, and therefore can’t avoid. The control freak in me was not handling it well. The mother in me was taking it even worse. To be honest, I haven’t calmed down much since then. My Google foundation has been shaken. I can’t tell you everything she’s allergic to, because I DON’T KNOW. I can’t keep her from the dangerous stuff, because I DON’T KNOW what it all is. I DON’T KNOW where to find it. I’m in the proccess of finding another allergist (one who actually became a doctor to help people), but know that even after extensive testing, she can develop new allergies. I’m praying and begging and pleading with God to heal her. I want her to be able to go to birthday parties and have cake, eat at potluck dinners and big family picnics, do late night fast food runs, eat the snacks in preschool. We’ve learned a lot about health and the disgusting ingredients a lot of the things on the shelves of grocery stores contain, learned to be smarter about what we put into our bodies. I am so grateful for what she has taught our family about health. But I am also desperate for her to be healed. And I’m desperate to protect her.

So if I cringe at you reaching for my baby, it’s not you, it’s me fearful of that amazing-smelling lotion you just put on.

If I turn my body away from you, it’s not you, it’s me worrying because I don’t know if you’ve just eaten peanut butter on your toast that morning.

If I decline your offer for babysitting, it’s not you, it’s me not being able to control the environment she’s in, or me worrying about your pets, or me being exhausted at the thought of going over the list of allergies, EpiPen instructions, Benadryl doses, and emergency contacts.

If I ask you not to feed my child, it’s definitely not you, it’s me protecting her.

If I don’t visit you, or don’t go to a restaurant with you, or don’t eat the food you cooked, it really isn’t you, it’s my natural reaction to avoid everything but my own home and my own cooking.

If I seem distracted, it’s not you, it’s me watching her like a hawk and running a thousand different scenarios through my head at once.

If I complain, I’m sorry. I love my baby and am grateful for the wealth of information available now about allergies. But I’m also a mess. I’m worried and hungry and so very tired.

 

So please don’t feed my baby. Please don’t be offended if I pick her up before you can. Please understand that the unknown for an allergic child can be life-threatening. She IS that child who can’t even walk past peanut butter. She IS that child who could have dire consequences from eating the candy you want to share. And she’s the child who has unknown allergies and severe reactions. Please wash your hands. Please don’t feed my baby. And please don’t be offended.