Friday, October 30, 2015

Peanut Allergy - 6 months later - Part 2: the feelings

I've written and rewritten this post so many times in my head. I never thought that 1. I would have a child with a food allergy and 2. that it would be so stressful and sad at times.
When Ruthie was diagnosed I was so sad for a few days and that really took me by surprise. After all, it's JUST an allergy...there are so many things that could be wrong with her that would be 100 times worse. But really, once I stopped and really thought about it, it is understandable. I mean the kid will never be able to eat a Reese's cup or boiled peanuts and that in itself is pretty heartbreaking. But seriously, this is life changing and has the potential to be life threatening. For the first few weeks it was absolutely terrifying to go anywhere for fear that we might run across a peanut and the thought of going anywhere other than Chick-fil-a (which had gotten the all clear from the allergist) to eat was terrifying. As time went on though we learned which foods generally have peanuts and which don't. We learned how to spot a peanut or peanut butter from a mile away and we learned to scope out the "landscape" for any potential hazards when we go somewhere new. If we take a meal to the pool, park, zoo, etc and we're eating with other people you can bet that I know exactly what every other person is eating (and so do my big girls but more on that in a minute).

The thing about a food allergy is that it affects not just the child with the allergy but everyone else in the family. For us Ruthie's peanut allergy means that nobody can eat peanut products in the house. My big girls LIVED off of peanut butter before Ruthie's diagnosis (most days they ate pb and jelly for breakfast and lunch). I teared up a little when I told them we couldn't have peanut butter anymore. My heart hurt for them and what they had to give up. I went to the store and bought every other kind of "butter" and made a fun event out of trying them all to see what we liked best. Ellie was all about trying the new ones. Emmie wouldn't touch them for a month or two. But the great thing? The girls understood that this was serious and they never once complained about not getting to eat peanut butter anymore. Ellie loved the sun butter and almond butter and while Emmie wasn't willing to eat any other "butter" she didn't complain about switching to turkey and cheese. As time went on Emmie grew to love sun butter and even though she can take pb & j to school for lunch she actually prefers the sun butter!

One of the most heartwarming things to see as we have learned to live with a food allergy is the way my big girls have become Ruthie's best protectors. When we picked up Ruthie's first Epi Pen Ellie wanted to learn how to use it. When we go anywhere where there is food they are always on alert for peanuts. When we drop Ruthie off in the nursery they tell them Every.single.week. that Ruthie can't have peanuts. When babysitters come over they will give them the third degree about what they have eaten all day which is really funny when it's dinner time and they their quizzing the babysitter about her breakfast! It just melts my heart to see them taking care of Roo.

This month brings another "sad" moment. Halloween. See, it's not just Ruthie that can't eat candy with peanut butter but her sisters can't either. Ruthie is really too young this year to realize we're taking candy away but the big girls will be very aware. This means that before they eat any of their candy we will have to go through it and take out the candy with peanut butter. Our dentist's office will pay kids for turning in their candy so I think we'll probably do that with all our peanut candy. The really great thing? Today Ellie trick or treated at school and I told her she could have a piece of candy when we got home. She immediately wanted me to look through her bag and take out anything with peanuts (there wasn't anything...even better!). She didn't even think twice about the fact that she might lose some of her candy.

So what are my fears for the future? I'm very nervous about when she goes to school. Preschool isn't so scary because they only eat a snack there and the teacher hands it out and I know that the teachers are very diligent about watching out for allergens. The idea of her going to elementary school however where the teacher isn't watching what everyone puts in their mouths is very scary. While Ruthie has never had an anaphylactic reaction to peanuts we know now that she very likely could at some point and the idea of that happening when her type A, control freak, nurse Mommy isn't there is almost paralyzing.

So, how can you help a parent when their child has been diagnosed with an allergy? The best thing that anyone did for me when she was first diagnosed was give me a hug. I had posted on Facebook that Ruthie had a peanut allergy and the next morning when we went into preschool Ellie's teacher at the time came over and gave me a hug. That meant more to me than anything else. I felt that she understood that this was hard and it validated my feelings and my sadness. I think after that I really allowed myself to grieve over the lost Reese's cups and boiled peanuts and in grieving I was able to overcome the sadness and much of the fear. Mrs. Elizabeth probably had no idea how much that simple hug helped me.
Another way you can help is to not think allergy parents are crazy. If we're out eating with friends and they have peanut butter I'm ok with that because, as I mentioned above, I'm always aware of what everyone else is eating. I don't expect you to change your life because of my child's allergy but I might ask you to wash your child's hands after they finish that pb&j if they're going to be playing with Ruthie. My fear is real and I will do anything to protect my child. What I really love is that most of our friends are already super careful when they have peanuts around her and I generally don't have to say anything about hand washing because they're already on top of it. I love this community we have that helps us so much.
When Ruthie goes to kindergarten I hope her teachers will understand my fear, especially that first year, and will be patient with me and my 500 questions about how we're going to keep her safe. I am glad that Ruthie is the third child so I will have built relationships with these teachers and administrators. I think one of the reasons I don't worry so much about preschool is because after three years I know these teachers and they know me and they know Ruthie (seriously, pretty sure they all know her name and she's not even in preschool yet). I know that they will do everything in their power to keep her safe. I hope I have that same relationship with the elementary staff by the time Ruthie gets there. (I feel like I already know the ones who are out front in the afternoon: "hey, there's the mom of Emmie...Emmie's the kid that NEVER hears her name when it's called over the speaker and always looks at her mom's car like she's never seen it before"...not even kidding...every.single.day.)

I'm so thankful for all of those who have supported us on this journey. Those who have asked us questions about her allergy, who have been so understanding when I ask before their child's birthday if there's peanut ingredients in the cake (I like to ask ahead of time so I can take a treat for Ruthie if she can't have the cake being served at the party). Those who have helped me keep an extra eye on Ruthie if there's peanuts around and those who have been a listening ear when I'm worried. The people who have acknowledged the seriousness of the allergy and have been understanding about our hypervigilance. We have great people!
Most of all I'm thankful for my sweet little curly headed ball of energy. She is always so happy and full of life (and always up to something!) She will sit and claw at her eczema covered legs but you never hear a complaint out of her. She doesn't complain when we tell her she can't have a certain food (citrus does horrible things to her skin) or has to sit in a different spot because someone has peanut butter. We love this girl who's as wild as her hair!

*Thank you as well to our friends who are participating in the Teal Pumpkin Project! If you're not sure what I'm talking about check out my blog post here...it's not too late to participate and make Halloween more inclusive for kids with food allergies (and their siblings)!

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