Struggling to find “Normal”

Do you remember your childhood? What are some things that you loved as a kid? Myself, I loved being outside all day, having sleep overs, and playing little league sports. I’m sure some of you would agree that those things were some of your favorites too. You might even say those things are “normal” childhood experiences.

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Myself playing little league softball. Age 8

Here is where my struggle begins. You see I want my children to have “normal” childhood experiences but my kids aren’t “normal”. My oldest son is 5. He is funny, sweet, and has an incredible vocabulary. He’s amazing if I do say so myself! But…. He has food allergies, Asthma, and is allergic to bug bites. So in my need to protect him and keep him healthy he often loses out on “normal” childhood experiences.

I was asked recently if I had signed him up for summer t-ball. Of course I didn’t sign him up for summer baseball! They play baseball out side in the evenings in Florida and the mosquitoes swarm in the evenings. When my son gets a bug bite his body reacts in a way that is painful for him. The bite will swell, itch and get hot. The swelling will not stop until the bite bursts and oozes. The swelling can last for days and the itching and tenderness can last for weeks. So, of course, I want to try and protect him from this. I could cover him in a DEET bug repellent but did you know that DEET has been linked to 3 deaths? Google it! So in other words, I could cover my first born in a chemical spray so that he can play ball outside…. UMMM, how about NO!! We have tried the organic bug sprays, the bracelets (one on each arm and each leg), and a few others but Florida mosquitoes are aggressive. I let the boys have lunch out side last week around noon; I put the mosquito bracelets on them just in case.

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Sawyer’s first mosquito bite. 

I was thinking that there should not be any mosquitoes out because its the middle the day. About a half hour later my middle child had 8 mosquito bites and by the next morning his eye was almost swollen shut! So no I did not sign my son up for a summer sport. I am a horrible mother! At least that is how I feel. I want him to have the experience of playing a team sport, of winning a big game, of having buddies that become life long friends. I want all of that for my kids but the short term pain they would suffer isn’t worth it… is it? How do I knowingly put them into a situation that will yield pain? Or on the other hand, will they remember the experience of playing ball, making friends, and having fun more than the constant pain and irritation of the bug bites?
This is my struggle!

Well, how about a sleep over? Why can’t my child do sleep overs? I mean those are inside so there won’t be any bugs. Sleep overs were the best when I was a kid: staying up late, eating junk food, watching movies, telling ghost stories, etc. Who doesn’t want their kid to experience that? Well, that is all fine until you get to the food part, or the going to bed part…. My oldest has to have several medications at night to keep his asthma under control and of course there are his food allergies to consider.

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Just some of Sawyer’s nightly medicines. 

It is a lot to put on a friend to make sure that they don’t accidentally kill my son by forgetting to read a label or assuming that just because the food doesn’t contain the allergen that it is safe. Cross contamination is one of my constant worries. I understand that most moms don’t have this worry. So here is how I see my sons first sleep over going awry: the Mom makes s’mores she uses chocolate bars that do not contain peanuts but are made on equipment that processes peanuts. My son has a reaction and his EPI PEN is not used quickly enough, 911 is not called, and my son dies! Okay, Okay, I know this is a long shot and I’m sure that I would give the mom plenty of training and information about my son’s allergies….BUT COME ON!! It is a lot to put on another person to say “Hey it’d be great if you could not kill my kid in the next 12 hours!” Again, this is my struggle: to give my kids the normality I know they deserve. I know my fear is keeping them from these experiences but my fear is justified, my fear is real and it is powerful. How do I overcome my fear and place my precious child in the care of some one who might not take his allergies seriously? If I had a dollar for each time a trusted family member has not been cautious enough or not taken this seriously, I’d be a very rich woman. So if his own family isn’t careful, how can I trust someone I barely know?

There are so many things that are more difficult because of my son’s allergies: going to the movies, flying on an airplane (I physically threw a bag of peanuts back at the flight attendant once! I didn’t hurt them, it was just an automatic response. It surprised both of us.), school, and well just going out anywhere really. Peanut protein can survive on a surface until it is wiped off with disinfectant or a really strong soap. So going to the park is really hard because I can’t wipe down the equipment like I can the seats at the movies or on an airplane. So when I see a kid running around eating his PB&J sandwich on the jungle gym.. don’t be surprised if I remind my son to not lick his hands, rub his eyes or his nose! IMG_2146Birthday parties are difficult as well because I always bring food for my kids. Other moms and especially the hostess can be offended. I guess I could call and have her go through each food she is going to serve and have her send me pictures of all the labels… but I know that she has a lot to do in planning a party for her child and guests. So I just bring safe foods with me. I’m not trying to be rude but I have to keep my son safe.

I wonder how it is going to be for my kid as he gets older? How am I going to deal with the new challenges, like say, a girlfriend? Did you know that my son is going to have to ask “What did you have to eat today?” before he kisses his love interest? Like your first kiss isn’t awkward and nerve wracking in itself! Kids are mean. I know because I am a former school teacher. Is my kid going to feel left out sitting at the peanut-free table? By the way, as a teacher, I know that this table is not always peanut-free… well at least it hasn’t been at the schools in which I’ve taught. The peanut-free table, the EPI PEN kept in the office and not with my child, and the food in the classroom were some of the factors that went into our decision to homeschool our son. It wasn’t the only reason but it definitely played a part. (I’ll explain more about our decision to homeschool in another post.) So now I struggle with that decision because he isn’t having the “normal” school experience his friends are. I am a worry wort, I know this and I own it but when it is your child’s life on the line the worry can be all consuming. So how do I give my kid a “normal” childhood without going insane with worry?

I pray. I think through all of the awful scenarios and then breathe. I come up with a plan and I educate others. There is going to come a day when my little boy is a man and I want him to look back on his childhood with fond memories of me cheering him on at a swim meet (Those are inside! Ha! See what I did there!!), having all of his friends come by for sleep overs, and taking him to fun parks. I don’t want him to remember my worry, my fear, or a constant NO. I have to teach him to be his own advocate, how to handle his own allergies, and how to be responsible for his own safety. So at five years old my son can tell you what his allergies are. If you offer him food he will ask you if it contains any of his allergens. He is able to administer his own daily medications, and he knows to tell someone if he doesn’t feel ok. What a champ, right?! Me? I am going to trust that it is okay to create our own “normal” and I am going to pray for a cure.

*******1 in 13 children suffer from food allergies and 1 in 12 suffer from asthma; so chances are you know a child / family that deals with creating their own “normal”. You could make a difference in their lives by educating yourself about these issues. Below are links to follow for more information.

https://www.foodallergy.org/facts-and-stats

http://www.aaaai.org/conditions-and-treatments/asthma

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