I can count on one hand the times Max has complained about not being able to eat something because of his food allergies. It’s easy to take advantage of his good attitude and assume he is unaffected, but I was reminded again this week how he is taking it all in.
The concession stand at our neighborhood pool sells a number of items that are off limits to him. Claire, who is all about fairness, never asks for what he cannot have. For the most part, when I give them money, I encourage them to buy either a frozen slush or a frozen lemonade, both of which — while not that nutritious — are somewhat hydrating, or at least that is how I rationalize it in my mind.
One of their good friends loves soft pretzels. After a few shared snack times, Max asked about whether they were safe for him. It wasn’t a casual question tossed out before ordering or on the way home from the pool. It was a careful question asked at the end of the day after story time and before sleep. Nonetheless I gave him a pretty casual answer. We are the pool a lot. I have seen the lifeguards take the box from the freezer. I knew the brand was safe, but I also suspected they coated the pretzels with butter before serving them. Since Max isn’t the biggest fan of hard pretzels, I suggested to him that we try them at home first. If he liked them, then we could see about the possibility of getting one without the butter at the pool.
A couple of days later at snack time we brought out the box of pretzels. Max immediately noticed they were smaller than the ones at the pool. Claire and I weren’t sure (turns out they were), and we went about following the instructions to coat them with salt and bake them in the oven. They both liked them. The next day we had three remaining. This time we mixed up some cinnamon sugar (which is the other option at the pool), sprinkled and made another batch.
I asked them which they liked better. Claire immediately said “salt.” Max said he wasn’t sure. I teased him, “Who should I ask to find out then?” He said,”Well, at the pool they put the salt and cinnamon sugar on after they are heated.” He thought this could affect the taste. I asked him how he knew this about the pool ones. He said “I’ve watched.”
It turns out he knew a fair amount about all the menu items at the concession stand, including more than anyone should about the different rainbow-colored wrappers the ice cream treats come packaged in. Oh my gosh. I think it must be so hard to watch things like that and know it’s not safe for you to eat. Then again he’s never known anything different. He wasn’t complaining. He was just answering my question.
Still, you can be sure I decided he needed to try the pretzels at the pool. I told him we would pick a non-busy time and ask one of the lifeguards (preferably a friendly one he sort of knew) if they would make him one without the dairy. He and Claire have been taking refresher swimming lessons (although it’s mostly diving they are working on) for a few weeks. There is only one other kid enrolled in their group, and they often have three lifeguards teaching the lessons, which means they get a lot of personalized attention. Theirs is the last lesson on Saturday mornings before the pool opens. We decided first thing after the lesson, as the pool opens but the teacher lifeguards were still there, would be the time to try out the pretzels.
Jason usually takes them then. He is pretty good at negotiating these kind of things. We discussed the plan. I packed the epi pens and sent them on their way. It turns out the lifeguard was happy to make the pretzel sans butter. The cinnamon sugar stuck to the pretzel better than the salt and Max and Claire were both super happy. They have since had pretzels a couple of times. The lifeguards never seem to mind. Max handles the special ordering himself now. Just yesterday when Max had a friend over with him Claire asked if he minded if she got butter on hers, and he shrugged and said no. She liked it even better but said she wasn’t always going to order it that way.
All this pretzel talk reminded me of when I was a teenager learning to bake. The Betty Crocker cookbook I was using had the best recipe for soft pretzels. It would put the Super Pretzel Co. pretzels to shame. I couldn’t find that recipe for you, but I did find this one from Alton Brown that looks great. I am going to try making it (substituting dairy-free margarine for the butter and maybe adding in some whole wheat flour) with some sauerbraten next week.
I can count on one hand the times Max has complained about not being able to eat something because of his food allergies. It’s easy to take advantage of his good attitude and assume he is unaffected, but I was reminded again this week how he is taking it all in.
Half-gallon of soy milk, $3, quart of soy ice cream, $7 (gulp), dairy-free double chocolate syrup, $3, cherries, $3, straws and cups (already on hand) brings the grand total to $16.
Enjoying it more than a regular dairy-ladden one. Priceless. Well sort of. $8 a shake is still a bit much. I’m thinking of experimenting with our own ice cream recipe to see if we can get the cost down a little, but these really are good.
Recipe courtesy of the Food Allergy Mama: http://www.foodallergymama.com/2009/03/31/dairy-free-chocolate-shakesyum/
Food allergies are tough. There have been plenty of times I’ve felt bad for Max when he’s been left out of a special treat. Maybe I’m showing some gender bias here, since Claire has no food allergies it’s impossible to know for sure. In terms of emotional responses nothing has gotten me as worked up as an incident last year surrounding Claire’s alopecia.
Claire’s bald spot was getting bigger as it seems to do now every spring. She had just had a haircut and her hair was quite short. That was the only way the hairdresser felt she could continue to mask the spot and a second one that was developing. At the same time, her school collected about a zillion cereal boxes to donate to the needy. Her teacher selected her to attend a special breakfast/assembly with a live broadcast from a local weatherman to celebrate.
The celebrity weatherman was going around the room asking the students about their favorite ways to stay cool in the summer trying to get as many on air as possible. He got to her and mistook her for a boy. When she tried to correct him, he didn’t understand and did it a second time. A teacher on the sidelines explained. To be fair, he at first seemed embarrassed if not apologetic. While she had pink glasses and shoes, she had her school spirit shirt on which is gender neutral and I can get in a rush how it happened, although for the record I don’t think she looked/looks like a boy. I thought an “I’m sorry about that” might be in order, but he turned to the other adults and said “it’s happened before and I’m sure it will happen again.” It wasn’t what I would have chosen for her television debut. I initially thought it was kind of cool how she at least stood up for herself and didn’t let it ruin her day. (I checked on her at lunch and she was irked at him but fine.)
Then the next day I saw a link to the weatherman’s Facebook page where one of his fans was telling him she could sure see where he was confused and maybe now the parents would let that little girl’s hair grow out. It was followed by some ha ha has. Grrrr! I called Jason to see if I was overreacting. In the meantime, the weatherman bantered on with her about how he felt bad but, man, it really was short hair. OK, I’d had enough.
I wrote a private note to the poster explaining and asking her to remove her comments, which after she accused me of trying to make her feel bad (which, OK, yes, I was) she agreed to do. In the meantime, Jason wrote the weatherman who was on vacation at that point but almost immediately gave a seemingly heartfelt apology and removed the comments, blocked the original poster and offered to try to make it up to Claire if we could think of anything he could do.
So maybe that was a fight that didn’t need to be fought, but it sure did make me feel better. I really did appreciate the apology. With a year’s perspective, I realize we didn’t really change much. Maybe we created some new awareness about alopecia for two people, but I think the mama-bear way I approached it made one so defensive I’m not sure she even believed me.
It’s interesting to me that I was pretty philosophical about the incident until the fan questioned our parenting, saying we should have let her hair grow longer. It was the questioning that set me over the edge. I think with Claire’s alopecia even more than Max’s allergies I don’t always know what the right course of action is. This summer at the pool it is obvious her hair is missing. She doesn’t want to wear a swim cap. Should we encourage her to do that or wait and risk some teasing? I don’t know. At school that year, I had gotten her special permission to wear a hat, but she didn’t want to wear one. The hat was attracting more attention than the bald spot. I didn’t push. There’s no guidebook, and so when people judge without considering what we’re up against it stings more. It stirs up all my doubts about whether we’re making the right decisions. The kids, however, obviously have a pretty tough skin about this sort of thing. Maybe I need to be more like them.
No one in my family likes to hike as much as I do. Mother’s Day is supposed to be mom’s choice. I pull out my trump card and use that day to plan my more ambitious outings.
Last year we took on the Cedar Falls trail at Petit Jean State Park. This is a trail to a tall, often kind of wispy waterfall at the bottom of a canyon. The park has several places where you can stand at the top and gaze down at it. The views there are pretty but because of the geography your gazing must be done at some distance. To really get the full effect of the falls, you need to go down to the canyon floor and look up at the falls. As a bonus, the bottom of the falls are covered with rocks and boulders that are way more exciting than any playground for the 10-and-under set. In the spring, the path to the falls is covered with wildflowers. It may be the most beautiful hike in the state.
Still it’s not for the faint of heart. The park has placed warning signs at the beginning instructing visitors that the hike is strenuous. They sell t-shirts in the gift shop where you can brag you survived. At the same time, you regularly see dogs and toddlers on the path. Granted they might be being carried on the way back up, but it’s not an impossible journey. It’s about a two-hour hike round trip, although I’m sure park rangers or someone just really familiar with the trail could do it in half that time, or that was the calculation I made when deciding how long it would take medical help to reach us if a certain boy had an allergic reaction at the end of the trail.
You see there’s a tradition: a lot of hikers bring food and have a picnic at the bottom of the falls. This was a real dilemma for us the first year. Having never been there before and not really knowing much about the trail, I decided not to risk having Max eat at the bottom. That was not a popular decision, especially when we got to the falls and saw other hikers had a couple of rather elaborate picnics laid out before them on the rocks. I reassured my family we had a lovely picnic back in the trunk of the car, but there’s no doubt our picnic envy marred our enjoyment of the falls. I know the rumbling tummies made the hike back up the canyon seem about three times longer than it should have as well. There may even have been some what I like to call “llama drama” feigning fainting from hunger, and I may have countered by bringing up the third world and starving children and how certain people had a lovely breakfast and should be thankful. Mostly I tried to block that part of the trip out of my mind.
Since I’m pretty good at blocking unpleasantness from my mind especially with the passage of time, it was with some excitement that I proposed going back there this Mother’s Day. Claire was sort of willing, but Max was not happy. After considering it for a few minutes at dinner one night, he drew an analogy that I must say threw me for a bit of a loop. Jason didn’t get it at first, but I knew as soon as he started just where he was going with it and what he meant. He said his not wanting to go back to Cedar Falls was like how after he ate the Burger King burger and had the allergic reaction and had to use the epi pen, he no longer wanted to go back to Burger King. (See the second part of Our Journey.) He knew it wasn’t quite the same but after he went to the falls and had a bad time and was hungry he no longer wanted to go back to that same place. “I don’t like to go back to places where I have bad memories,” he said. It became clear to me at that point that we definitely needed to go back to the Falls. That spot is way too beautiful to let one non-picnic tarnish it. I am less sure if we need to go back to Burger King. I get his reluctance there.
Anyway, after briefly considering a few other hike locations, we did decide to go back to the falls. I played my Mother’s Day trump card. Having had some time to get used to the idea, Max was mostly OK with it, or he didn’t cause much of a fuss at least. I decided a picnic at the bottom was in order this time. We stocked up on the benadryl and the epi pens. I made sure to pack only foods that are part of our regular menu. It didn’t seem like a good time to experiment with lobster or caviar even if it was Mother’s Day and that does sound elegant now doesn’t it? It turned out fine, even better than fine really. The weather was perfect and the crowds were thinner than usual. It may not be every mother who wants to go hiking on her day. I was glad I did, and I felt quite blessed my family loved me enough to go along with me. Now we’ll just have to decide about Burger King.
One of my favorite snacks to take on hikes (which I obviously should have taken the first time we went to the Cedar Falls trail) is granola. I love the tropical version here: http://www.usaweekend.com/article/20060226/FOOD04/91015002/Great-granola, but they are all good. It’s easy to improvise. I cut the oil by about half, and it still tastes great.
There is a story that has become legend in my family over the years. The year was 1970. My parents were newly married and sharing an apartment not far from where my Dad had his first (and turns out only, he would retire some 35 years later) job teaching sociology at the local university. I was just a twinkle in my Dad’s eye at this point. It was a hot summer. A neighbor brought over a container of apricots to share with the new kids in the building. My Mom turned them into a from-scratch pie. Dad, who previously had favored chocolate pie, never looked back. Perhaps the memory has grown sweeter over the years, but to hear him tell it today it was close to the best thing he’s ever eaten. Apricot pie has been his favorite ever since.
This story and the aftermath had both good and bad repercussions for me. On the bad side is that I’m not personally that fond of apricot pie. It’s usually a little on the tart side. Really I’m not that big on pie in general, yet growing up with him it was on the menu a fair amount. On the good side, it’s an easy gift to give to a guy who can be hard to buy for. His other favorite things are tropical fish and train books. Since he seemingly has every one of those ever written, those can be kind of hard to pick out. A fresh apricot pie is always a hit. On the bad side, apricots have a short season and can be hard to find. Once my mom and I attempted to fool him by subbing in peaches. Afterwards he claimed he could tell but said he didn’t want to hurt our feelings. We didn’t try to fool him again just in case. When I visited my grandmother when I was in college, she showed me how to rehydrate dried apricots, which is a clever trick but time consuming and on the expensive side. Also on the bad side, pie is not exactly healthful, at least prepared the traditional way as my Mom was doing it.
There were many happy pie eating days. Then everything changed. In 2003, my Dad was on his way to the bookstore (for more train books, go figure), when he started having chest pains. He took a detour and drove himself to the hospital instead. After making a wrong turn and walking into an administrative area of the hospital and having a volunteer tell him he couldn’t take a shortcut down a hallway, he returned to his parked car and drove himself back around to the emergency department where they diagnosed his major heart attack and placed two stents to reopen his clogged arteries. Realizing just how close a close call he had had, he got super serious about changing his diet. He became fanatical about exercising and has been a regular at the gym ever since. It is really inspiring, and he deserves a lot of credit. Overall though the diet changes seemed to be harder for him than the exercising. While he was more philosophical than I thought he should be about the hospital mix up, it didn’t take him long to start bemoaning the loss of his favorite pie or of pie in general.
As the timing went, it just so happened Jason and I were dealing with the aftermath of Max’s anaphylactic reaction to dairy and diagnosis with multiple food allergies at about this same time. (See Our Journey.) I am ashamed to say I wasn’t all that sympathetic to my Dad. I had a hard time seeing beyond my own struggle right then. It seemed to me, my giving up dairy, egg, wheat, soy, peanuts/tree nuts and seafood to be able to continue to nurse Max was a much more restrictive diet than what he was facing, although looking back on it I think it was the realization of the permanence of it for him which made it more difficult. Luckily for him, my Mom was more sympathetic. She did some research and eventually landed on a crust recipe from the American Heart Association. It was not exactly low fat, but it replaced lard or Crisco used in traditional recipes with canola oil and water which meant it at least featured the good fats instead of the bad ones. Much to his delight, she promptly started making pies again. The bonus good news there was once Max outgrew his thankfully short-lived wheat allergy, pie became one dessert everyone could enjoy.
The rather serious wrinkle I found with this new crust recipe was I could never get it to work well. At one point, I became convinced that Mom must be holding out on me. I was sure that she must be adding some fourth ingredient beyond flour, oil and water to her crust because when I made it is almost always resulted in a gloppy, gooey mess. Sure with enough coaxing I could eventually work with it long enough to get something to present to my Dad, but it was never easy. To his credit, my Dad always appreciated my efforts. Then again since my Mom taught me to bake when I was a teenager, he has always been careful to play us against each other — stoking the competitive fires and trying to get more baked goods out of the bargain. I am sure it worked some of the time. I was ready to give up on this pie crust though. I even went so far to have my Mom make it in front of me one day. Then she watched me make it again. She said I used too much flour, and I know now (being one myself) that moms are always right. Still when I got home reducing the flour didn’t seem to make any difference at all.
Since I was still struggling and since Dad gift-giving holidays kept coming up, I began to ask my friends for help. They had various suggestion. Several said the dough needs to be super cold (that does help some). Another suggested I roll the dough out between wax paper. That didn’t seem to help with the pie, but it was and is a great tip for making egg-free sugar cookies. Then just recently I wanted to make a pie crust on a day I knew my Mom was off at one of her Red Hat club meetings. I decided to google the recipe instead of waiting to call mom for it or, you know, looking in my recipe file. A revelation: milk. The recipes, and there were several with the AHA seal, all had a fourth ingredient: milk. Some of them also said not to bother rolling out the crust but just to press it directly into the pie plate. I can’t tell you the validation I felt. A fourth ingredient. You press not roll. Yippee!
So once I came back down from that high, I realized I did have a new problem. Max couldn’t eat a pie with dairy. Would soy milk work just as well? I gave it a try. It still wasn’t easy, but it did work much better. I half-rolled it out, half pressed it. Just knowing that others had found it difficult to roll out gave me new found confidence and determination. I have let the kids start helping me with making the crust again. They love using the rolling pin. I was reluctant to include them when I knew rolling out was going to be a struggle, but somehow now I don’t mind so much. We don’t just stick to apricot. Sometimes they eat more of the crust then we use in the pie. I still don’t know how my Mom manages, but with my new recipe and an early apricot crop, I can tell you already what my Dad is getting from us this Father’s Day.
Heart-Healthy Dairy-Free Pie Crust
One 9-inch pie crust
1 1/2 cups all-purpose flour
1 teaspoon salt (optional, I leave out for my Dad)
1/2 cup canola oil
2 tablespoons cold soy milk
Preheat oven to 425 degrees. Sift the flour and salt into a mixing bowl. In a small cup, whisk together the oil and milk and pour over the flour mixture. Using a fork, mix until completely dampened. Press the dough evenly into a 9-inch pie plate, then up the sides and over the rim. To use as a baked shell, prick the surface of the dough with a fork several times and bake for 12 to 15 minutes; cool and fill per recipe. To use as an unbaked shell, fill with the desired pie filling and bake according to specific recipe.
When Max was 4, one of Jason’s closest childhood friend’s son, who is just a little older than Max, was diagnosed with diabetes. It was Christmastime 2006 and Max was having his own medical crisis. It was the crisis that would eventually lead to surgeons placing a shunt, but at the time we were still hopeful it would be able to be resolved with medication and careful monitoring. Anyway, after getting off the phone with the friend, Jason told me how much he felt for them. I nodded somewhat sagely and probably with an inappropriate hint of smugness said “me too but they will adjust.” He said words to the effect of at least we aren’t dealing with something like that, something that chronic. Once I picked my jaw off the floor, I replied “Umm really? Yes that is good. That we don’t have to deal with anything chronic like that.”
I remember my response because that was the year my New Year’s resolution was to give up sarcasm, and I remember I just couldn’t help myself (although looking back at it now I think it underscored why I was right to try to give up sarcasm that year). Incredulously, Jason, who was to be fair probably pretty tired at that point, still didn’t get it. So I pushed the point. “We don’t have to deal with anything chronic and food-related like that. Huh? Did you want to do the shopping at the grocery store this week? You wouldn’t want to read the labels on the food because, you know, we don’t deal with something chronic like that.”
To be sure, I’m not making light of diabetes. It’s a serious disease. Dealing with insulin injections and monitoring blood sugar requires major lifestyle changes. There are very definitely life threatening consequences to getting it wrong, but hello the same is true of food allergies. I know it’s wrong to compare diseases. It does no good to try to sort out who has it worse. To an extent, I actually got where Jason was coming from. We were in the midst of dealing with this other health crisis, and we’d been at the-coping-with-the-food-allergies thing so long that he’d sort of internalized it. At the risk of sounding like even more of a jerk than I already do from the previous example, I think I’m going to take some of the credit here too. Since I did the vast majority of shopping and cooking and the preschool teacher snack negotiating, the day-to-day burden of coping with the food allergies at that point was more on me as well. It certainly hadn’t slipped my mind like it had his. I immediately saw some parallels between the two boys’ situations. I also immediately felt a little stung by Jason’s reaction or non-reaction.
It is funny (odd not ha ha) how when your child has a serious medical condition you almost are never jealous of healthy kids, but I can remember several times of being jealous of kids with other conditions. It’s hard not to compare. For some reason, people take a diagnosis of juvenile diabetes a lot more seriously than they do food allergies even life threatening ones. In the hospital, Jason’s friend’s child got the assistance of a whole team of diabetes specialists. They made sure he and his parents had specific training before they let them leave the hospital. That’s perfectly appropriate, and I am glad for them. It was hard not to compare. Max’s doctor handed us a fact sheet, a script for an epi-pen and advised us to get some cook books when he was diagnosed. At subsequent visit, pediatricians would sometimes ask if he was getting enough calcium. Sometimes.
In sum, I know it is insane to be jealous of a kid with diabetes, yet I totally briefly was. I have had the same feelings when I’ve seen kids with select other chronic neurological conditions. There are clinics to help kids with epilepsy. They bring together all the doctors and they have one set of appointments. They often have a nurse case manager who you can call and get help with questions and services. Heck, they have an exam room in the pediatric neurosciences clinic covered with framed informative posters and racks of brochures. I know because Max always ends up in that room when he sees the neurologist. It’s room 13. By comparison, when the pediatric neurosurgeon diagnosed Max’s sinus thrombosis and raised intracranial pressure, he said he had seen five cases like it in his career. He was not a young guy. Then he added that even those cases weren’t really like Max’s. He wasn’t sure how it would play out. Then he and the neurologist spent another day or two arguing about what to call Max’s condition (which is still an issue that comes up) and how to treat it before another neurosurgeon with more experience with Max’s issue came back from out of town and weighed in.
It has always felt as if we had to patch together a medical team. I remember the eye doctor who was following Max closely in this period between the first diagnosis and the shunt being placed two months later asking me if I would tell the neurosurgeon his rather gloomy report for that week. He threw in that he trusted me to do it as if this were a big compliment. I politely declined and explained I’d prefer they communicate directly lest I get some important detail wrong. He said he understood and asked the nurse to get him the number. She asked where was she supposed to find it. He suggested the phone book. Sigh! At least I wasn’t the only one with a sarcasm issue. Clearly this teamwork thing was new between these two doctors anyway. In that moment, I was jealous of families of patients who had protocols and established teams.
Yet, I know we’re not alone in this jealousy. I have a friend whose child has now been diagnosed with mitochondrial disease. It’s just about as terrible a disease as you can ever imagine: progressive and degenerative, it often causes excruciating pain. It affects all the systems in your body and for that reason it can be tough to diagnose. Occasionally during the years, when she and her husband were struggling with what seemed like a number of varied yet serious individual issues, she mentioned she was jealous of other kids with more solid diagnoses. She didn’t mention being jealous of the healthy kids. I don’t know why we do that? If you asked a grief expert, it’s maybe part of the bargaining process. We’re willing to accept that something has to be wrong with our child because we see the symptoms, but we want it to be something we perceive as somehow more manageable. In her case, that makes perfect sense. In my case, it still doesn’t, but I was.