Tuesday, July 24, 2012

A Mother's broken promise

July 18th, 2012

"Emelina scraped toast corners into a blue enamel pail and ran a sinkful of water. 'I don't think I could stand to let Mason go off to Kindergarten next year if it wasn't for the baby. It kills you to see them grow up. But I guess it would kill you quicker if they didn't.'"
--excerpt from Animal Dreams by Barbara Kingsolver

From the moment I became pregnant, I made a promise to protect each of my children with every fiber of my being until the day I die. Feeling another human being growing inside of me; I can't explain how that feels, but it changes you. There is a special bond that connects us to our children, a love unlike any other. As a stay at home mom I have devoted my everyday to making sure my children get the best possible life. This includes: feeding them the right foods so they grow, teaching them the right things so they learn, playing with them so they have fun, and always, always keeping them as safe as I possibly can. Just as I promised them I would.

So when you fail to keep that promise you made to your children, it is the worst day of your life. You realize you are vulnerable, you are not Super Woman, and you don't have it all together. You do the best you can, but you will not be able to protect them from everything. It's a hard pill to swallow. Today I had to swallow that pill. After all the stuff we've had to deal with over the last few years you'd think we were done and get some reprieve. We would not be so lucky.

Today started off, just like any other. The kids watching t.v, me hoping to get a few more moments of much needed sleep, willing myself to not get another migraine. Late in the morning I paid some bills, took a shower, and made plans to take my car in for emissions testing after we ate lunch. As always, I asked the kids their preference. Mason asked for a peanut butter and jelly sandwich. It had been a while and I happily agreed it was a good idea. A simple and easy lunch as I was determined to get the day started. Realizing Sophie was now three, and could be given peanut butter, I made her one as well. At first she looked at it in the jar and was like, "ew, that's gross. I don't like that." But after cutting it into small star shapes she took her first bite and happily announced, "it's delicious! I like it!" And before I knew it she had devoured the rest, just like that.

A few minutes later she had to go potty and I rushed with her into the bathroom. As she sat there she started coughing and acting funny. "I choke Mommy," she told me. That usually means she's going to throw up. Then she started scratching at her neck and face and rubbing her eyes. I noticed the slight hint of a rash and my concern began to grow. Crap! Could she be allergic? Oh God, I hope not.

Me: "Are you feeling OK, Sweetie?"
Sophie: "I sick. I need to go to doctor."
Me: "You're sick? Like your stomach?" She had eaten three boxes of raisins earlier and I was thinking the horrible poop was on its way.
Sophie: "My heart."
Me: "Your heart?"
Sophie: "My heart," she repeats as she touches her chest.
Me: "Your heart, is it beating fast?"
Sophie: "Yes!" She is clearly upset now.

I try to check her heart, to find out if it is really beating fast; but I can't tell. She is looking kind of pale. I take her off the potty and run to get the phone. I call our pediatricians office, and after a few excruciating moments I talk with a nurse. Sophie is starting to act sleepy at this point and still itching--all over. It is determined that I should skip coming to see them and go straight to the ER, just to be safe. I'm not completely concerned at this point as she is breathing fine, no massive rash showing up all over her body, and no throwing up; she is just irritated and tired. Always erring on the side of caution, I do as I was instructed. I run downstairs to tell Fred what is happening, leave Mason at home with him and make the 10 minute trip up the road to the hospital; thankful we live so close.

Sophie looks like she might be trying to fall asleep. I urge her to stay awake. Despite this, she walks into the ER on her own accord; holding my hand, her baby bear and blankey in tow. And just like all the other times, she seemed to be pretty much fine by the time we enter the lobby. She was asking about stickers and toys as we made our way to the sign-in window. I had just finished filling out the form when I heard Sophie call my name and proceed to puke ALL OVER THE HALLWAY. Nothing was safe; her blankey, baby bear, my purse, our shoes, clothes, and anyone within our vicinity was covered in purple and brown vomit. I stood there trying to calm my daughter down, unsure of anything else to do, while she acted out a scene from the Exorcist. I see a puke pan on the counter and grabbed it just before a nurse came out with a bucket, ushering us out of the waiting room and into the Pediatric Emergency Department. I carried Sophia as fast as I could, listening to her attempts to grasp for air in between moments of vomiting. The next two hours will be the most chaotic, stressful, and horrifying moments of my life.

Immediately, there were 4 people in the room all doing something. Orders were being yelled, Sophie was crying, and then screaming, and then puking some more. The doctor ordered a shot of epinephrine, Benadryl, and a steroid. She confirmed Sophie's throat was closing and pointed out the now massive rash that covered her chin and throat. I felt the tears well up. I was doing my best to stay calm as things were being done but not exactly explained. I knew they were all there to help. The nurses struggled to get in the IV. Sophia was scared and her body, fighting off the allergy, were all causing her veins to constrict. They tried twice in one hand and then twice in the other before finally getting it in. Sophie's screams were more than my emotionally fragile state could handle. It was a sound a mother should never have to hear. Having to endure the fear and pain my daughter was experiencing, the room suddenly became like a sauna and I felt faint. I should have eaten lunch. I knew my vaso vagel was kicking in. It was the stress, the worry, and a lack of blood sugar in my body. In the midst of all this chaos, a nurse found the time to grab me a sandwich, juice, and a chair. I sat there holding Sophie's hand, unable to hold back my tears; the guilt overwhelming. I was the one who agreed to the peanut butter. I was the one who decided it was OK for Sophie to have. I was the one who fed it to her. How could I not feel guilty? I gave my child, my sweet, innocent little girl, food that ended up being almost fatal.

I've had many trips to the ER with both my children, and have always managed to remain calm and never cried. It must have been the knowledge that my daughter was experiencing full-blown anaphylaxis, or perhaps it was the knowledge of my best friend, who having gone into anaphylactic shock after eating a piece of candy, died from her peanut allergy in this very hospital almost 13 years ago to the date. She was only 20 years old. Possibly it was both, along with my guilt, that shook me to my core. The tears flowed and I tried to fight them back. I tried so hard to not show Sophie I was scared; to be that rock, that calm I know she so desperately needed in that moment. Holding her precious little hand in mine, all I could say through my sobs was, "I am so sorry, sweetie. I am so sorry." I kept repeating it, in between kisses, hoping she might turn to me and tell me it was OK; that she wasn't mad at me and that I was still a good Mom. She never did. She just kept screaming. It went on for at least and hour and a half. By the time she had finally calmed down, showing signs of the medicine kicking in and her health improving, it was mid afternoon and we were both exhausted.

As she slept on me, my thoughts drifted back to my friend. I wondered if this was what she went through in the moments before she left this world. How scared she must have been, the pain she must have felt. The tears welled up again and I quickly brushed them away; willing myself to think of anything else. Sophia slept on me for about 45 minutes, until Fred and Mason arrived. By 3:30pm she was feeling better. The doctor came by for a quick check. Sophie's vitals were normal, no more air restriction and the rash was gone; however, she needed to stay one more hour for observation to make sure her reaction didn't flare up again. By 4:30pm we were all restless and ready to go home. At this point, Sophie was playing with Mason and even laughing. It was like she was a whole new child. She had her spunk, her attitude, and her smile back. I even allowed myself to smile. Four hours after we arrived, she was finally discharged and we could all go home.

Within 24 hours of the whole ordeal, I sat down and wrote story you just ready above; my emotions still raw, but I knew I needed to get it out. In the days that followed I did the best I could to show a brave face while inside I was falling apart. When I could no longer keep it together, I hid in the pantry and sobbed. Terrified, overwhelmed, and feeling all alone I struggled with thoughts of where to start. When it came down to it I really knew nothing about food allergies. Then I remembered that I really wasn't alone, and reached out to those I knew with kids who suffered from food allergies. I have spent the last week immersing myself in websites, blogs and online support groups learning as much as I can about peanut allergies. I want to be as informed as possible, so I could then educate my daughter, our family, and our friends. This is our first and foremost line of defense. We cannot effectively protect her if we do not know how. As it turns out, I was right; I knew nothing.

This is a major lifestyle change for us and I would be lying if I said it was going to be easy. I now carry an Epi Pen with me wherever we go, another one stays at our house, while yet two more are slated for my parents home, and Sophie's preschool. We have been advised to avoid not only peanuts, but also tree nuts until we can get her tested by an allergist. My biggest fear is not that we can no longer have peanut butter. Yes, it sucks. I love me some PB&J and Mason's favorite was PB and Fluff. However, its not like we ate them on a daily basis. Quite the contrary. PB was almost like a treat in the house, something we only ate every so often. Mac n Cheese, Chicken Nuggets, and such are more of a staple in our house. Besides, I don't like foods with nuts it them anyway. I've never been a huge fan, so that part is not a big deal. At least for me. Fred, well he likes himself some nuts (I mean he lives with us right?). Seriously though, he loves nuts. Still, we rarely have a can of nuts, or a bag of peanuts in our house. Again, a non issue. Done. No nuts. We're over it. Move on. Except that's not all of it. What terrifies me the most are all those foods out there with the hidden danger. The ones that have possibly been exposed or might have traces of peanuts in them. Foods that would never have crossed my mind as being life threatening to my child. It is astounding the number of foods we have eaten on a regular basis that have "manufactured in a facility,"or "manufactured on equipment" that also process peanuts written in the nutrition section. Something I never noticed, or rather never even attempted to look for because there wasn't a need. These are all now on the don't even think about it, no seriously just forget you even knew this food existed list. No more chocolate chip pancakes; no more M&M's with our popcorn on movie nights; no more going out for ice cream or frozen yogurt; no more Twix for me, Snickers for Fred, or any candy bar for that matter (I can Halloween is going to be a hurdle); no more running up the road to Harvest Bread Co. for their delicious homemade breads and rolls; no more cake or cupcakes from the bakery (birthday parties are going to be a bitch); no more cookies from the snack bar, or treats from the sample booth; and good lord, going to a restaurant now puts me in a panic. And when I think of how the kids get excited for haircuts just so they can get their packaged cookies from Ms. Holly it breaks my heart, because they can't have that anymore. The threat of cross-contamintion on any single food is extremely real and down right terrifying. Even those who mean well and try to make nut-free cookies, treats, or other foods for my child could potentially be putting her life at risk if they didn't properly wash their equipment, hands, utensils, and surrounding area. How can this not be a parent's worst nightmare?

Right now we are waiting for her appointment with the Allergist to arrive and crossing my fingers we have no more allergic reactions between now and then (and well never again. But I figured that was a given). In the days and weeks to come I am hoping to have the answers to my questions and at least some of my fear subsided before Sophia starts school in the fall. At least I have the small comfort of knowing her preschool is a nut-free facility and that allergy notices are posted in the classroom as well as the kitchen. Yet still, I freeze in fear at the thought of her not being under my supervision, or rather at the mercy of others, for three hours every day. As if I wasn't already the neurotic, paranoid Mom about ticks and Lyme Disease, a peanut allergy HAD to be thrown in the mix. How am I going to get through this? How am I going to not freak out and worry every second of the day that she is not in my presence? I was so excited and ready for her to go off to school, to spend that time away from me, and now I can't find the strength to let her go. Does it get easier? Will I always worry? Am I going to become that Helicopter Mom my husband warns me I am turning into? Will I die of a heart attack, or ulcer from worry before she comes close to ever having a reaction again?

I suppose the answers to those questions will come in time. For now, I am going to pour myself a glass of wine, sit down with my favorite TV show, and will myself to relax. If only for a few fleeting moments. Stay tuned for more posts about this peanut allergy as we navigate our way through this challenging diagnosis.
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