Monday, November 20, 2017

Thankfully here

Today someone asked me what my college degree was and whether or not I thought I would work again. It’s been a while since someone asked me anything like that. Years ago I would have felt inferior in unexplainable ways. Right now I’m sitting outside by a fire in the glorious Florida coolness (64 degrees) considering my stage in life and how it is no where near where I thought I would be. But also, how I’ve found contentment in ways and means I never imagined. Is there more that I could achieve and truly enjoy? Yes. Maybe I will or maybe I won’t pursue my interests in the workforce. I don’t even know. I do know that life has afforded me experiences that I never saw coming, struggles that I wouldn’t choose, and simple pleasures that cannot be beat. I am not striving for what I once was. I know many people that are unsatisfied. For many years I have simply strived to appreciate the little things around me. That focus has made all of the difference in my world view and contentment. 

This Thanksgiving, be thankful. Be thankful for the big things- the people you know, your house, your job- all of it. And then, look for the little things. The birds outside. The trees blowing in the wind.

The smile a stranger offers back at your smile. The details of life- that’s what you need to notice. For me, it has made all the difference. Live in the details of your life. 

Saturday, May 20, 2017

Food Allergy Interview with my 13 Year Old


This week, May 14-20, is Food Allergy Awareness Week. Every year during Food Allergy Awareness Week, I wonder how to make it a significant week. When my son was very young, I decided to interview him about his allergy. I thought it would be a good tool to see what he understood. I thought it would be a good way to make him more aware. What I discovered was that it opened up conversation in a new way. We talked beyond the questions I had planned. We continued to do the interviews for years until we stopped because our busyness got in the way.
When I mentioned Food Allergy Awareness Week to my teenager last weekend, he asked if we were going to do an interview.  I didn't expect that. Last night we sat down together and did our food allergy interview. As it was before, I started with some set questions and added as we went along. We talked even more than I anticipated. We had a thoughtful conversation and even debated how allergies should be handled. It was invaluable.
I'm sharing the interview to give others insight. It was hard to type as quick as he talked. And, like I said, we talked off script quite a bit. My hope is that this causes at least one person to consider what it is like to have a food allergy, that someone will appreciate the struggle more, and maybe, just maybe it will make a difference. Whether it does or not, I had a great conversation with my son. I believe we both learned from each other.



Food Allergy Interview with my 13 Year Old

Question: What are you allergic to?
Answer: Peanuts
Question: What would happen if you ate a peanut or a peanut product?
Answer: I would have trouble breathing. I would get hives and I would need my lifesaver.
Your lifesaver? An EpiPen
Question: Have you ever had to use your EpiPen?
Answer: No. I have used an expired one on an orange and one on an apple.

Question: Does the EpiPen make you nervous.
Answer: Yes. Carrying it around, no. But, thinking about it very much- ya.

Question: What are you nervous about?
Answer: I would be nervous about using it and messing up. Or just using it in general because I don’t like needles.

Question: So, you self-carry your EpiPens. If you had a reaction, do you think you could self-administer it?
Answer: I think I could for the first one but after that, I don’t’ think I would be calm enough to do two. I would probably be panicking too much to do it twice. I’ve thought about it. I would need to take my phone out of my pocket.

Question: Is it hard to remember to carry it everywhere?
Answer: No. I also keep my inhaler in the case. I need my inhaler more often.
Question: How do you carry it with you?
Answer: We put it in a Kangaroo Pouch. It has a kangaroo on it and it’s a pouch so I call it a Kangaroo pouch, which is really a sports case, and I throw it in my pocket.
(He carries a RooSport Plus. It's made so you can put it at your waistband, but he prefers to use it and put it in his cargo shorts pocket.)
Question: Someone you know offers you food and says it is safe, what would you do?
Answer: It depends. Is it a food brand I know? Is it still in the wrapper? Even if I have had it before, I could check the label.

And if it is out of the wrapper… that’s disgusting. It could be Hershey bar that someone had their sweaty hands on.
Question: What if it’s something they made for you?
Answer: It depends on the scenario. I might take a cupcake at the end of the school day to be polite and then throw it away. I would probably not have it. Sometimes, being honest, I will make up an excuse like I am too full.

Question: Does it embarrass you to have a peanut allergy?
Answer: No, sometimes it is just annoying to explain it. It is also embarrassing sometimes because people ask questions and then I have to explain. They ask questions because they are curious. I don’t like the attention.

Question: Is there anything you wish you could tell people about having a peanut allergy?
Answer:
A bit of advice. You better be glad you don’t have one!
Something to know about having the allergy—I get tired of all the attention. I don’t like to think about it that much.

Something to know about the allergy itself-  it’s scary.

Question: What is the scariest part of a peanut allergy?
Answer: Knowing that eating could kill you. Just eating a food could send you into anaphylactic shock.

Imagine this. You love eating. There's a food that can kill you and it's in a lot of other foods. And it apparently tastes really good. But you'd never know because if you eat it, you could die.

Question: Do you worry about that?
Answer: No. Because I don’t think about it until I need to.

Question: Do kids ever tease you about having a peanut allergy?
Answer: Um, people used to. In 4th and 5th grade they did. People I didn’t know. In middle school people don’t care. It seems childish. But in 2nd grade it was just annoying.

Last year we had a debate in school. Should peanuts be allowed in school? My teacher made me be for the side saying peanuts shouldn’t be allowed. I think they should.
Why do you think they should? Other people shouldn’t be restricted from eating food just because other people can’t have it. I would not like to be the kid that limits people from having stuff.

Question: Does it bother you to be different from other kids?

Answer: I’m already different. Everyone is different.
Sometimes at lunch, it’s uncomfortable. I had to politely ask someone not to eat something right then. Because some kids are really messy. I don’t like to restrict people. Sometimes I’ve seen people trade food or sandwiches so they aren’t eating it next to me. I don’t really like that because I don’t like limiting others because I was born with an allergy. They do it without me noticing. Or they try, but I notice.

Question: Do you mind sometimes not getting food that other people get?
Answer:  I don’t really care anymore. I used to care but now I am more laid back about it. I don’t care too much.

Question: Does it ever make you sad?

Answer: Not any more.

Question: Have you ever read about someone else dying from a peanut allergy?

Answer: Nope. Not that I know of.
(I haven't really shared news stories with him because I wasn't sure how that would affect him. We had recently talked about Oakley Debbs, an 11 year old from Florida who died from a nut allergy. We talked about that a bit more and about how he doesn't prefer to read news stories like that because it affects him deeply.)

Question: What do you think about people who think food allergies aren’t a big deal?

Answer: To be honest, they probably just don’t know much about it. I would probably ignore them because they aren’t educated about it.
If you don’t get a food allergy can kill someone, it’s like not getting a cat can scratch someone.

Some people say they have food allergy, but they eat something with their allergen and just pick it off. I don’t get that.


They [Someone who doesn’t think food allergies are a big deal] don’t have the whole perspective
Question: Do you think Food Allergy Awareness Week helps?
Answer:  I think it would help. But, first you have to let people know about the awareness week. Most people don’t even know it’s food allergy awareness week. It’s a random post, with random hashtags. I don’t know if that makes sense.
A teacher at school dyed her hair teal one day this week. I wasn’t able to ask her about it but I was thinking it was for Food Allergy Awareness Week. People might notice it and ask. If someone puts a post on facebook about a survey or interview- then people will know more.


If they had Aphasia awareness week, people might be interested in it but if you they don’t know it is that week, it doesn’t matter. If people hear about it, they will look it up. (He googled rare conditions to make his point and came up with Aphasia.)

It (Food Allergy Awareness Week) will help once it is more popular. People will start looking stuff up. They will learn about it. If gets more popular, it will make a difference.

Question: How many friends do you have with food allergies?
Answer: I can think of three off the top of my head. I think there are more.
Question: Is it getting easier to ask about food when you are out?
Answer: It is. I guess I realized that I won’t see the people again or most likely I won’t. So, they would never be like, oh there’s that kid.

Question: Do you think it is harder or easier or the same now that you are a teenager.
Answer: Kinda easier. Like people used to not know what my inhaler was. Kids are scary sometimes. They ask a bunch of questions. Teenagers tend to know more stuff.


I think as I get older it will get easier because people will know about it more. Now most people know about it. It would be weird if it got harder.



Tuesday, April 25, 2017

Love conquers all

Last month, we let some friends borrow our RV. They were on a whirlwind trip to Florida and they wanted to camp at Fort Wilderness and go to Disney World. The family of five used our RV for half a week, maybe not even that. I can't remember right now and those details don't matter. We never gave it a second thought. We wished we could do more. The mom, a girl that I grew up with- starting with girl scouts and ending with graduation from high school- was dying of cancer. She died this past Saturday.

I hadn't seen Shannon in over 20 years. We'd reconnected on Facebook and commented on pictures from time to time. When I saw her at the campground, I was struck by her strength. Physically, she didn't have much strength left. The medication she was on left her in such a state that she would start to fall asleep mid sentence. But her words were strong. She spoke of her family and her love and it was all strength. She was knew what was coming and she told me she wanted the trip for her family. She wanted to be everything she could for them. She wanted to be strong as possible so they wouldn't remember her sadness.

When I found out she died on Saturday, I was sad. We knew it was likely, but her death was hard to realize. It was hard to grasp, even though it was expected. She was young! I mean, she is my age. She has 3 children. It just isn't fair. So much in life isn't fair. I tell my kids that. But this, this unfairness hurts my soul.

And yet, when I think of her, I think about how she decided to be strong. Strong in the face of death.

Months ago, my pastor made a point one Sunday that resonated with me. We are all dying. Every one of us. Right now. We are dying. No one will escape death. And somehow hearing that absolved me from fear. Death is inevitable. In the end, our earthly decisions determine what death means. How we approach death impacts those we know and love. Shannon approached death with strength. She did not want to die. When I was with her, she talked about one more possible, but unlikely, treatment possibility. She was unsure the treatment was possible for her. She was certain about what she wanted. She wanted to be with her family and for her family to feel love. She seemed so strong, even with her body failing. I did not see fear. I saw love. I saw how much she loved her husband, her kids, her siblings. That will continue to impact me for years to come.

Love conquers death. And while I know she died, I know she lives.



Monday, April 10, 2017

Dear Siblings of Allergy Kids

It is National Siblings Day, according to Facebook, anyway. It got me to thinking about my kids and their relationships. I am thankful for my kids. I am thankful for how they all deal with having food allergies in our family. I spent a few minutes writing a letter to siblings of food allergy kids.


To all of the siblings of food allergy kids,

I know it isn't easy.
I know it isn't fun. I know it is frustrating. You can't go places with the family to eat that you would really enjoy. You can't have food that is down right tasty. It's not fun. It out right sucks sometimes. I know.

I know. I also know you care. I know you worry. I see that you care, even when you wish it was different. I know you care because you don't complain (much). I know you care even when you make jokes.
Those joke are a release of sorts. I get it. I don't always allow it. I get frustrated with it but I get it. I know.

I know that you avoid foods because it isn't safe for your sibling- even sometimes when you aren't with your sibling- just because.

I also know that sometime you jump at the chance to have something that you can't normally have, when you food allergy sibling isn't around. That's okay. It's also okay to feel weird about it. It's okay to love those moments, too. You need to know, I'm right there with you.

I've seen you give a safe treat to your sibling, when you didn't have to. I've seen you really appreciate your food allergy sibling sharing his unsafe dessert from a sports event. You know he didn't have to take one but he got it for you. You know there are ups and downs. I know you feel good and bad about things. I know.

You've told people time and time again that your sibling can't have an item because of food allergies. I know that you hate it. I do, too. But I know you get it. I know you sacrifice. You understand. I know that despite how much you wish it wasn't real, you know it is.

You've shown time and time again that you understand and that your heart is bigger than your appetite. I wish everyone could think and act the way food allergy siblings do.

Thank you for your love, understanding and respect for your food allergy sibling. It means the world. It really does.