Take me out to the ball game (or not)

I am so excited to get Trac-E. I am thinking of all of the ways she will make my life easier. I cannot wait to get her. I spoofed a song about my allergy as I got up and practiced one of my survival strategies. Cooking!!! I made homemade crepes for my family this morning. I spoofed “Take Me Out to the Ball Game,” because I was thinking of a bag of Crackerjacks that I sold to a customer at the Troop 695 snack shack that my scout troop uses as a fundraiser. Here is the spoofed song. I hope that you enjoy it. 🙂

Take me out to the ball game.

Only if it’s nut free.

Don’t buy me some peanuts and crackerjacks

If you do I’ll never get back,

But I’ll root root root for the home team.

If they don’t win it’s a shame,

But it’s three, or two, even one nut I’m out of the old ball game!

As we are only two weeks from heading to Colorado for training and to pick up Benjamin’s service dog, here is a great tribute to our family’s new dog Tracy — from her first puppy-raiser. (Thanks, Ted!) It also has some more back-story on her early years, age, inclinations, etc.

Please see me

This was an assignment to write a poem for my English class. Here’s what I wrote:

Please See Me

The picky allergic kid who has no real allergies is not me.

The kid that could die from his food allergies is me.

I am not defined by my allergies.

I am the kid that loves to bike, swim, and run.

I am the kid that does not give up even though it would be easier.

I am the kid that loves music and reading.

When I was a child I started reading in preschool.

I was the child that loved soccer and came home with grass stains on my knees.

I was the child who created worlds, and then told stories about them.

I was the child that created the world of the stuck pipe.

I was the child that made the lions Freddie and Tanga to live in the stuck pipe.

I was the child that had three imaginary dogs named Moov, Tree, and Treefreefactous.

I was the child that had three airplane pilots named Sweatyabanga, Abouduadango, and Lazy Tom.

I was the child that tried to explode water in the back yard.

I was the child that played in a mud pit, and tried to build bricks for a house out of mud.

I was the child that learned to climb a tree to get over the fence.

My allergy is a real part of me and it is dangerous.

Please try to see me through my allergy.

Please see me.

Anaphylaxis in Rome (part 2 of 2)

After one bite of the cashew-contaminated pasta sauce at our table in Rome in Summer 2010, Benjamin’s eyes were wide when he told us something was wrong. Joel and I both saw the look. The tsunami of emotions hit me again.  This time the symptoms were moving fast. Faster even than the second grade anaphylactic episode.

Hayley writes about the speed with which we recognized anaphylaxis, gave an epi pen, and got to the hospital. My own memory is that it felt like everything was moving in slow motion:  Watching the symptoms roll in, one after another. Throat closing, vomiting, hiving…  Joel holding Benjamin while I gave him the epi pen. My talking him through the whole event.  “I have to give you your epi now.  You are going to be fine. Let’s count together, 1,2,3,4…10”  “You are so brave.  We are going to take care of you.”  Joel grabbing all of the food bags and shoving them in a bag, lifting Benjamin up, and heading out the door. Me, checking in briefly with the law students that had come for dinner, and promising Natalie that we will take care of Benjamin.  Carrying Benjamin down the rampa (think of a LONG slow series of wide steps). Getting to the street, around the corner to the main road, and waving frantically to the first passing cab. He passed – and left us standing on the sidewalk. Joel keeping a constant eye on his watch.  The next cab coming by fast and me frantically waving again. Being passed by once more.  An Italian couple with a baby looking our way with puzzlement on their faces.  A third cab coming. This time I ran in the street waving and doing my best Italian dramatic beg. “Please, please, mi bambino, hospitale, anafalactico shock!!!” He stopped. He nodded. We climbed in. He took off fast. We later found out he wasn’t even on duty, just an angel along the way who helped us.

In the cab, talking to Benjamin. “Are you feeling okay? How is your throat?  We are almost there.” Holding Joel’s hand from the front seat of the cab to the backseat where he was still holding Benjamin.  Getting to the ER. Rushing in and trying to communicate in English and Italian with the triage nurses. Their confusion. Handing them the emergency sheet where we had listed his condition in Italian had had it translated, and having them read it and then immediately start to take Benjamin’s blood pressure – but still not moving with enough urgency. The next angel of the night walking up from the rows of people sitting in the waiting room and starting to talk to the triage nurses in Italian, and then to us in English.  Whatever she said, we were back with a doctor within seconds.  “I had a little English in my school,” she said.  Bless her.  I will always love this woman whose name I don’t even know.

More shots for Benjamin.  A young female doctor carefully reading a medical manual on food allergy protocol.  She looked carefully through the food items that we had gathered and brought with us. She found the cashew in the Romano sauce.  Another doctor coming in and listening to his blood pressure. Two doctors agreeing that he needed to spend the night.  Benjamin tucked into a bed with a small chair beside him in a room of about 10 beds. The nurse pulling the curtains around our bed. All of us working hard to cross the language barrier and fill out the necessary forms. Joel leaving the hospital and heading back to Natalie late at night. Sitting beside Benjamin through the long hours of the night, praying, exhausted, scared, and cold for the first time since I had been in Italy. Really cold. I asked for a blanket as best as I could. Someone came and tucked one around Benjamin.  Waiting. Waiting. Waiting.

It was in Rome that Benjamin really learned that life was fragile.  He knows now how quickly anaphylaxis can steal him from us. I can’t protect him from that knowledge anymore.  He felt it. He knows.  He chooses to live with grace and courage. He doesn’t take unnecessary risks with food, for which we are extremely grateful, even though he sometimes is in situations where other people don’t understand how medically fragile he can be might still introduce risks around him.  Do I regret going to Rome?  I don’t know. I don’t think so.  Benjamin doesn’t regret going to Rome.  Even after this happened in Rome, we talked honestly about leaving early – and he considered it but chose to stay.  I think it is really important to live a full life as best as you can.  We hope Tracy will be able to help Benjamin continue to live fully as he begins to learn to be more and more independent.

Anaphylaxis in Rome (part 1 of 2)

These posts are hard to write.  In many ways, it forces me to relive moments that are very frightening and difficult.  It also forces me face the reality that these moments might happen in the future at any time.  We never know the situation, hour, or moment.  Anaphylaxis can happen to him and changes everything in the blink of an eye.  We work hard to never have an anaphylactic moment.  But the reality is I can’t fully protect my son from that as hard as I try. He must live a full life and I want him too!

Before even agreeing to go to Rome in Summer 2010, Joel and I had “the talk.”  Do we go or do we stay? What is the worst case scenario? We both agreed our worst case scenario is that Benjamin might go into anaphylaxis.  Could we take extra precautions and try to prevent that or is it best to stay at home?  We want our son to live fully.  He loves history, cultural experiences, and travel. Could we deny him the chance to try? We reasoned: if we don’t travel, how will he know how to travel when he is grown?  We would have to work really hard to make it work. We could do that. 

So, here is a short list of things we decided to do. We worked with the university to create a list of every nut in Italian. We wrote a summary explaining his allergy to restaurants and food workers and a friend at the university translated it into Italian.  We wrote a one-page summary about his condition, immediate medical needs, and other vital information (blood type, etc.) for emergency workers and doctors and had it translated into Italian. (We carried that with us 100% of the time.)  We brought extra epi pens and Benadryl  and had prescriptions written by our doctor for all them to get them through customs. I started studying traditional Italian cookbooks. I made a list of dishes that I noticed were using nuts. I read travel memoirs and blogs of Americans living in Italy so that I had more information about rhythm of life in Italy. I’m glad I did, too! I found out valuable information – and had fun reading and learning about Italy.

We chose an apartment near to the children’s hospital.  We notified everyone. Participants in the academic program where Joel taught, airlines, restaurants we were scheduled to eat at, and catering services.  I planned to mostly cook from scratch in our apartment.

We worked hard to eliminate risk.

But it’s hard to be 100% right.  And we missed one.  I missed the danger.  I can still feel the lump in my throat and the hot tears in my eyes just writing it now. I missed it.  It was plain jar of red tomato sauce at the grocery store.  I read the label. I consulted my list and I did not recognize the word they listed for cashew, which was embedded in the middle of the list of ingredients. In all of my research I’d never run across a recipe for a tomato sauce (a Romano sauce) that called for ground cashew.

We had spent an unforgettable morning that day at a nearly empty Coliseum. We got up very early to take the kids. Our plan was to get across Rome early in the morning and be one of the first to stand in the long line. We already had our tickets.  It worked. We watched the sunrise from inside the Coliseum.  It was glorious. We took our time looking through the gladiator exhibit.  We left and walked down the main street in ancient Rome.  We wondered if the apostle Paul had walked where we were walking.  It was hot, dusty, but magnificent at the same time.

We left and made the long journey back across Rome to have lunch at home. It was hot, miserably hot.  We had invited some law students over for dinner and the kids wanted to have an easy pasta dish.  So, we stopped in the mart on the way home and bought the supplies.

At dinner time, the girls came over. We prayed and started eating and chatting about our day.  Benjamin helped himself to pasta and took a bite. One bite was all he had.  And then he said, “Dad, my throat.”  [to be continued]

Ironman Benjamin

This morning was the Minnesota Ironman Bike Ride, and the weather didn’t look promising.  The hail and lightning woke me up at 2 AM and it was so strong I went to make sure there wasn’t a tornado warning.  Not a good sign. When I got up with my alarm before 5:30 it was still raining buckets … but the radar looked like it might — might! — be moving through even though it was supposed to keep raining until 1 PM.  So we waited an extra hour and half and didn’t get to the Lakeville, MN start until 8:20.  We had not a single shower of rain on the entire ride — just some light mist in the first couple of miles.  We’re really thankful for that!

We had a great ride today.  Benjamin did great pulling his Burley trailer and didn’t run anyone off the road 🙂  (although one other rider tried to pass on the wrong side, unannounced, as nearly caused a collision; good riding by Benjamin saved it!).  We took several rest stops, but the actual riding portion averaged nearly 10.5 miles an hour, which was pretty good pulling a trailer and having some real incline to climb at times.  He never walked the bike at all, even on a steep hill.  We had a great time and he persevered.  (He’s been catching up on other stuff today for the week, but will post himself soon about the experience.)

Thanks to all who have been supportive of him!  We’ll keep posting on the blog as we get closer to getting Trac-E, even though the ride is over now.

The night before the Iron Man

Tonight is the night before I go on my Iron Man bike ride. Tonight, I am remembering how one of the scout leaders challenged all of the scouts to do the biking merit badge, when I was 11 years old. The merit badge consists of doing five 10 or more mile bike rides, two 25 or more mile bike rides, and one 50 or more mile bike ride. My dad thought that we could not do it. I decided to try, and I proved him wrong. Now I will ride thirty miles tomorrow, and I know that I can make it (even though I have my new dog trailer attached). I proved some important things to myself that year by earning the biking merit badge. I learned that I could handle pain. It hurt to go on the fifty mile bike ride, just like it will hurt when I bike tomorrow. I have learned, however, that the human body can handle pain for an extremely long time. You just have to decide in your head that you are not going to give up. What I look forward to when I bike is not the ride (although I enjoy that too 🙂 ), but it is when I get home and prove to myself that I could handle the pain and meet my goal. I saw an inspiring quote on the back of a tee-shirt recently, that I would encourage everyone to try to live by. I even try myself. The quote read, “Next time you want to give up, remember why you held on this long.”

Thanks to my scout leaders and friends and to everyone else who help me achieve my goals.

The False Security

Peanut free tables seem like they make everything alright at school lunches, but they actually make lunch much harder for me in the past. It is easy for a school to struggle over making a peanut free table safe. “No nuts” at my peanut free table became “no cross contaminated foods.” Then the school said “no bagged lunches.” Soon, I was sitting alone with no one to sit with, watching all the other kids talk and have fun. Now, instead of a peanut free table, I use wet wipes and wipe down the table. Then I can regulate what food comes to the table, instead of the school doing it for me. This is also safer, because I can verify that the table has been wiped down. With a peanut free table, the lunch ladies try to wipe the table down for you, but I do not know if they could have used a cross contaminated sponge. I also know that it is clean, because the lunch ladies are busy and sometimes forget to wipe down the table. If it is only a peanut free table for your lunch out of several lunch periods, that could be problem. I have been much more successful without a peanut free table.

An Uncertain Forecast

Last year’s Ironman Bike Ride was tough. Benjamin and I had ridden over 50 miles in Fall 2010, so we had trained ahead of time and were planning to ride the 30 mile version on May 1, 2011.  (The MN Ironman has distances of 100, 68, 30, and 17 miles.)

On the morning of the race, though, it was 34 degrees when we arrived in Lakeville. We were pretty cold to start, but thought we’d be OK – until we hit that uphill stretch, into about a 25 mile wind.  Ugh. By that point it was sleeting as well and later, by the time we made it back to the parking lot, the temperature had dropped to 32. When we reached the fork in the road on the course, we bailed out (it was really my suggestion more than Benjamin’s) and “only” went 17 miles.  We didn’t feel as bad – and got a good laugh – when we overheard someone at the rest stop staying that they had planned to do the 100 miler, then that morning it was cold so they decided on 68, and then once they started the decided on 30, and then they turned off to do 17 because they were so cold and windblown.  We didn’t feel so bad. 🙂

Right now the forecast for this Sunday morning’s ride keeps shifting and seems uncertain. At first it looked perfect and clear, but now there’s a 50% chance of rain with and a morning start of high 40s and a high for the day of 58.

Benjamin has practiced riding with his Burley trailer with me. (And we only almost crashed into each other once(!), since he’s a lot “longer” than before on his bike.)  And there was one day that we were going to take a long ride, but it was 45 degrees and solid rain so we opted not to.  We know that’s not a choice on May 6.

Benjamin and our family are accustomed to an unpredictable and uncertain forecast with his allergy – and when “skies are clear” we are grateful. Here’s hoping for clear skies for our ride, just as we hope for them for managing his allergy.  But we know we aren’t guaranteed clear skies anywhere – and we’ll ride anyway.

(If you haven’t sponsored Benjamin’s ride yet and would like to do so, here’s his flyer – and there’s a donate button in the sidebar. And if you haven’t seen his sister’s efforts to help, check out her book reviews of dog books at 30dogbookblog.  Thanks a ton to all who are supporting us – and to you for reading!)

Bread

Oh, how my family loves fresh bread. It is has been a part of the rhythm of my life as far as memory goes back.   Bread is central to my faith. Jesus is the bread of life. We eat bread together in my faith community as an act of remembrance.  We celebrate holidays with special family bread recipes. I have always made homemade bread on occasion. And we eat sandwiches every day. Benjamin in particular must take his own lunch every day to school and often to other events.  Bread is a staple.

But bread is now complicated. For a long time, there were plenty of choices in the stores for me to buy bread that my family would eat. Then we started to notice the warning labels increasingly on multiple brands of bread under the ingredient list: Warning: May contain traces of peanuts or tree nuts. OR  Warning: This bread is made a facility that uses peanuts and tree nuts.  Over and over again we began to see our choices dwindle to one or two. There was definitely a quality difference in what we could safely eat. The kids put their collective feet down and declared one brand off the list. I sighed. I understood. Bad bread is not really the same. I started working hard to make homemade bread again.

But, as I recently explained to a colleague of mine at work, it is really hard to be Ma in Little House on the Prairie in 2012 Minnesota. Work demands, car pool demands, and the pace of life began to make homemade bread making difficult.

We were down to really one choice of bread. Then, Costco quit carrying the line. (Please, Costco, bring it back!)  Joel and I shed quiet tears and then focused on staying positive and finding the creative solution.  Homemade bread it would have to be. We could share the bread making responsibilities as a family. And we found a wonderful book: Artisan Bread in 5 Minutes A Day.  It works! It is good. The children love it.

We appreciate our bread. We are so grateful to have our bread. Our home smells heavenly.  A food allergy is a journey.  You never know what is around the bend. It takes a lot of work to manage. But, blessings float back to you in ways that you would never expect.  Sunday nights I am laughing with my husband in the kitchen mixing bread and Monday morning I am slicing homemade bread and making sandwiches for my two children.