While I will continue this personal blog, join me also at www.eyeonchildabuse.blogspot.com where I am on a mission to end child abuse.

Wednesday, January 6, 2010


People collect things.

Collections usually tell us something about the collector. Ben collects IRL driver stat sheets. Phillip is collecting Transformers and Molly collects everything! My parents seem to be collecting doctors' bills and Angelina Jolie collects children. What we collect can be very revealing.

Collections can range from the ridiculous to the pricess. For a while, as a child I collected dryer lint (I'm still not sure what that says about me). Tony collected newspaper and magazine articles about athletes that interested him. The father of my fellow allergy mom, Melissa, spent his life collecting watches.

Some collections are of your choosing, but others are thrust upon you. I suspect my sister-in-law doesn't really intend to collect snow globes. But even in that, the collection reveals something about her.

Collections are usually a work in progress. They are in an unvarying state of unfinishedness, which is perhaps what draws people to them. A constant "something to acquire" list -- or perhaps a driving "to do" list; or "more is better" philosophy; it probably depends on the collector.

Recently I've been fascinated with collections as my father unearthed my grandmother's cross collection. It was something I had heard about over the years, but as my grandmother passed away when I was just three-years-old, it was more lore than something tangible to me. I had seen bits and pieces of the collection -- including losing a cross when I dressed as a nun for Halloween at age 8! But this Fall, my dad pulled out every piece of it. All 400 plus crosses.

The captivating part of collections is the stories that accompany them. And boy do these crosses have stories.

It began during World War II when my grandfather was the pastor of a Disciples of Christ church in Kansas City, MO. He gave a $5 bill to members who were being sent overseas in the military and asked them, "to be on the lookout for an interesting cross for Willina," (a.k.a Grammie). Crosses arrived from Europe and around the globe.

As a school teacher, my Grammie was drawn to studying the various forms and history of the cross and created a presentation which she gave to dozens of groups. A number of newspapers even featured articles about her and her collection. One cross is covered with woven human hair; and the oldest cross is from the 13th century. My grandfather added crosses he made out of alabaster to the compliation, and my father even added a glow-in-the-dark beauty to the grouping! Grammie lovingly placed it next to some of the most "valuable" crosses.

While the stories of the majority of the crosses died with my Grammie, my father decided that it was time that the collection had a new story. So he chose a select number of crosses to go to First Christian Church in Boulder, CO where my grandfather served as pastor and where the collection came to its final form. Those crosses belong there -- sharing their stories with all the people who walk past their display. Following Ben and Molly's recent baptism, they were allowed to peruse the collection and choose the crosses that spoke to them. Both of them beamed with pride at their choices and keep them in a treasured spot. I have selected a cross for Phil when it is time for his baptism.

My siblings and I also selected crosses that caught our fancy. I can't wait to find the perfect spot for my stained glass beauty. I need to hang it where I will see it every day. It is a concrete reminder of my dad, my Grammie and my history through God. But that's not it for this collection. After the personal crosses had been picked out, my father put the remaining 350 plus crosses on display for the congregation at our current church. He invited each individual present to select one or more to take home with them.

I watched as a 10-year-old girl gleefully skipped up to me to show me her cross, and I watched as a quiet Asian immigrant contemplated the cross he chose as he left the church that morning. I received an email of thanks from one older member as he shared with me his affection for my folks. The people were as diverse as the crosses. I can't tell you how much joy watching that collection dissipate brought to me and my father. It was the right thing to do.

A colelction can be a stagnant grouping of meaningless things that do nothing but collect their own dust, or a collection can be turned into a dynamic statement of love and affirmation of life. for these are the things we truly should collect!

A True Christmas Tale (Dec. 05)

Shortly after my parents were married, they came across a Creche set in a small store in a small town in California. They were taken by its simplicity and beauty and bought what they could afford -- the holy family -- although there were many more pieces that were a part of this set.

Each Christmas they added another piece to the set and as their family grew, so did the set. A little boy, a little girl and an angel were all added to represent the births of each of their children. They added animal figurines on years when their family did not expand.

It was a tradition they loved.

Even when they moved from California, my parents were able to "mail order" pieces for it. -- a big deal in the era before internet shopping.

But when the store in Sausilito closed, it seemed the Creche set would forever remain as it was. It was magnificent! There must have been some 20 pieces to it by then, including three kings, a shepherd, and creatures of all sorts.

Years passed and although the Creche set didn't grow or change, the family continued to grow and change as the children became teenagers. The one thing we all agreed on was the beauty of that Creche set. Every year it brought us together. Each Thanksgiving my dad brought the box down from the attic and we eagerly unwrapped each character from its tissue paper shroud.

Ten years after we ordered our last figurine, my parents went to New Orleans to celebrate their 25th wedding anniversary and take a Mississippi Riverboat cruise. As they were wandering around the city of New Orleans prior to boarding, they meandered past a small store. In that small store's window was their Creche set -- looming larger than life.

The Creche set on display was indeed by the same artisans, and as the Riley family had grown, so had the number of pieces available for the set. My parents inquired about ordering figurines and went home excited to continue the tradition that had started so many states and lives ago.

And once again, on Thanksgiving, my family would get out the Creche set, set up the pieces, look at the order form and decide upon a figurine to add to the collection -- ordering each year from that small store in New Orleans. It was a tradition we loved.

There were years when money was tight -- so a snake or a mouse joined the set. And there were years when money was not as tight and a bear or a baby elephant ambled onto the scene.

There were years when grandchildren joined the family, and they too were represented with figurines. A lifelong friend passed away and another angel joined the set. The set now had some 40 pieces to it.

And then came Hurricane Katrina...

Horrified at the devastation, my parents also knew in the back of their minds that it must be the end of the store that carried our Creche set pieces. There was no way that small store could have survived. And there was a new grandson to honor with a figurine.

Two months after the hurricane, my parents tried to contact the store. But the phone just rang and rang and rang. Just before Thanksgiving my mom decided to give it one more try -- she just couldn't give up. She dialed the number and the phone rang and rang and ... was answered. The store was back in business!

This year, the day after Thanksgiving, the Creche set came out and a figurine was ordered.

God is good.

Friday, December 4, 2009

Ben's going to camp; Am I crazy?

It's true. I am sending my six-year old, highly allergic son off to sleep away camp.

Now before you call in Child & Family Services, I need to clarify that he is going to sleep away camp with his grandfather. It's a "Grandparent & Me" camp.

It's a wonderful opportunity. Ben gets to experience sleep away camp, but I get to send a guardian angel with him. Ben is also blessed to have some one on one time with my dad, and my dad is blessed to get the time to spend with his oldest grandchild.

Although I know my dad will be with him to monitor the whole food allergy thing, I am still a bit of a nervous wreck.

There are a million "What if's" racing through my mind. I am trying to remember what camp is like, so I can anticipate any challenges that might arise, but it has been so long that I have even been associated with a camp, that I am not sure I can do a very good job predicting needs.

I am going to provide all the food for my dad and Ben. That's one thing I can control, and since it's only a three-day, two-night camp, it's a pretty realistic requirement.

Although Ben has multiple-life threatening food allergies, as well as other food allergies, I am pretty sure that the nervousness I am experiencing is a universal experience for ALL parents sending their first child off to camp.

And that though is actually pretty comforting to me.

Going to camp is an important rite of passage, and more importantly, it's a normal rite of passage.

As parents of food allergic children, we are always seeking how to balance safety with normalcy. It's a tough line to find. But it's important that we continue to challenge ourselves to let our children go and enable them to experience the "normalicies" of childhood.

So as parents of food allergic children, we must figure out how to navigate school, play dates, dining out, birthday parties, sleep-overs, summer day camps and yes, even sleep away camp.

You can prepare, prepare, prepare. But at some point, you also have to have a little faith.

You have to believe in other adult's abilities to listen and learn. You ahve to believe in yourself that you can let go. You have to believe in your child's ability to advocate for himself. But most of all you have to believe that the food allergies are not in charge of your child's life!

Finding the Line (August 2006)

As parents of food allergic children, we are constantly challenged ot find the line between safety for our child and respect for the "rights" of the non-allergic community around us.

Sometimes in this quest, we are truly misunderstood. We have been called "overprotective" and even "hypochondriacs."

On Slate.com (featured on MSN's home page), author Emily Bazelon says that it is increasingly difficult to discern the "rationally neurotic parent with the extremely allergic kid" from the "crazy neurotic parent with the slightly allergic child."

As much as I hate to admit it, she may have a point; parents of food allergic kids sometimes exaggerate risk.

Why does this happen? A raging case of Munchausen-Byproxy? Probably not. A raging case of fear? Probably so.

When food allergic parents let fear win -- we all lose.

I am a big proponent of respecting diferent families' comfort levels. Because allergies and related response are so individualized, families have a range of experiences. Those experiences shape how those fmailies move forward into this world.

However, I am genuinely worried about "The-Boy-Who-Cried-Wolf Syndrome." I am worried that people may start to tuen out the message becuase the threat fails to materialize.

There are some very real ways that we, as the food allergic community, can help prevent this from happeneing.

We can push our doctors for answers and for recommentations that are not overbroad. We can ask them for their professional assessment of risk, and then ask for realistic guidelines for keeping our children safe.

We can push for, and financially support, research on food allergies. Many times the allergies tsimply don't have the answers to give us because the research just isn't there.

The Food Allergy Project, Inc. is actively workign to increase the federal resources dedicated to food allergy research. It is also working to fund scientific studies that will elad to a cure for food allergy.

We can continue to push manufacturing to provide us with the best possible information about the way food items are made. I fear that some companies may be using the "may contain" and "made in a factory..." verbiage to protect themselves, rather than offer accurate information to the food allergic community.

As parents of food allergic children, we alos have a role in helping people to learn to accomodate our children's needs. We can determine the approach that is "least restrictive" for everyone involved.

For example, we have had our peanut allergic child sitting in the same room with another child eating a peanut butter sandwich and have not had any inkling of a reaction. Research supports that this would be true for most of you as well.

Because the risk of reaction from another child eating peanut butter in the vicinity of our child is really low, our family is comfortable with a peanut-free table in the cafeteria and a peanut-free classroom, but we do not feel that the school needs to be peanut-free in and of itself.

Additionally, as responsible parents, we need to be sure of our children's reactions to various allergens.

Our son was once "tactile allergic" to dairy, meaning that he would devleop hives wherever milk had touched him. He has, however, outgrown this -- although he is anaphylactic to dairy. Therefore we are comfortable with other children eating dairy around him (provided that any spills of milk AND any messy children are cleaned up appropriately afterwards).

So this leads to my second point of asking of others for what you REALLY need. It is important that we aren't "overbroad" with our requests. It is easy to play "what if" (a game every parent plays to some degree).

A more productive strategy than playing What If would be to teach our food allergic children to wash their hands often throughout the day. This is also very non-restrictive on their classmates, and in fact, good hygeine for all to follow.

We may strive for the safest environment possible, but even if our children didn't have allergies we still couldn't safeguard them 100 %. It just isn't possible and is an inherent factor of life.

Another thing we can do to find the line is to remove emotion from the issue of allergies (easier said than done, I know).

We may feel like allergies aren't fair -- and they aren't-- but the bottom line is that,"life isn't fair." Allergies may be our burden, but every family carries their own burden (addictions, learning disabilities, dysfunctional relationships).

I know I sometimes catch myself saying, "well if Ben can't have ice cream at the ice cream party, they shouldn't be having an ice cream party." Instead of asking for the party to be changed from an ice cream party to something else, perhaps an alternative solution is to offer to provide soy ice cream and dedicated utensils for the party.

We need to be careful not to project our own feelings of injustice onto our children. We can allow them to vocalize their true feelings without us directing how we think they should be feeling.

With the help of doctors, researchers, manufacturers and each other, it is my sincere hope that we can continue to educate the community at-large about allergies and the challenges of living with allergies.

Part of that education must include that fear goes hand-in-hand with allergies, but we are working on not letting fear influence the accommodations that we request for our children.

When Allergies Overwhelm Us (October 2006)

Every now and then, I find myself crying in the most unusual places -- the refrigerated aisle of the grocery store, a fancy restaurant, and this month is was at the Parent Faculty Organization (PFO) meeting at my son's school.

Sometimes I feel so overwhelmed with Ben's allergies that seemingly innocuous tasks send me tumbling into Pityland. The task at hand that set off this latest round was taking a sneak peek at the calendar of coming school events.

Every event -- even movie night -- had food associated with it. Because of my son's extensive food allergies, it means every event must be navigated so that he can participate fully and safely.

It is exhausting. I am packing lunch every single day and fixing dinner every single night. Birthday parties always mean a call ahead of time, not just for RSVPing, but for grilling the family about what kind of food will and won't be served. Simple play dates with friends turn into min-lessons about allergies, reactions and medicines. Going off to school in the fall means hours of preparations, meetings and follow ups.

Just when I am knee-deep in pity (for myself and my son), I get a lifeline ... a wake up call ... some perspective.

Yes, our life is shaped by allergies, but overall it's a good life. My son is health and happy and pretty well-adjusted. He dances, plays soccer, fights with his sister and complains loudly at having to clean up.

Although there will be challenges as he grows up (what will dating bring?), he has the capability to be and do whatever he wants. We might always have to do a lot of prepartion for the "normal" things in life, but at least we have the means to be able to do those things. There are lot of conditions in life that would be more challenging and disabling. I just have to remember that.

Being part of this support group helps me to remember that. Because of my participation in POCHA there's always someone to call -- someone who listens to my current crisis and offers advice (when wanted). And there is always someone to help pull me out of Pityland.

Living with allergies has taught us a lot about advocating and educating others. It has taught us how to speak up, even when we're uncomfortable. It has taught us not to be afraid of being "difficult." It has taught us how to reach out to others and work towards accommodating all individuals, recognizing everybody's needs.

It's okay to experience pity for outselves or our children from time to time. It's okay to recognize that life can be hard and is not fair. But it's important for the entire family that pity is short-lived and recognized for what it is.

Pity can't be the overall operating mode -- or we let the allergies win. Instead, we have to work to make allergies just a small piece of who are children are. It doesnt -- and can't -- define them.

Friday, November 20, 2009

Taking Care of Non-Allergic Siblings (Dec. 2007)

When Ben boarded the bus for the first time to head off to Kindergarten, I had already spent at least 20 hours with his teacher, the principal, the school nurse and various other representatives of the school's faculty.

When Ben's sister Molly climbed on the bus the very next year for her first day of Kindergarten, I realized that I had spent a total of five minutes with her teacher in a classroom during an open house visitation.

Such is the life of a sibling of an allergic child.

Allergies are hard. They're hard on our allergic children. They're hard on us as parents. They're hard on our school systems. And they are hard on our non-allergic children.

There are many issues involved in caring for our non-allergic children.

We must think about "equitable, not equal." It is important that while we might not do exactly the same thing for each child, what we do do with them must be equitable (while continuing to foster a safe environment for the food allergic child). For some families, this means taking non-allergic children out to a restaurant, while the allergic child is on a playdate with friends.

Food allergic children also tend to receive more attention than their siblings because of the nature of allergies, so parents must make a concerted effort to devote one-on-one time with each child in the families. This lets siblings know that they are worthy of parents undevoted attention.

Additionally, there is a fine line between age-appropriate care-taking activities AND relieving our non-allergic children from that burden. Young siblings can be taught that an older brother has food allergies and we have to read ingredients. Older siblings can be taught where the Epipen is kept and how to get adult help. However, siblings never should be put in the place where they are the gatekeeper of information or they are determining which foods are safe and which are not.

There are no easy answers when it comes to parenting in general. But when food allergies complicate the situation, through communication with your partner and constructive criticism of yourself, you can raise both food allergic and non-food allergic children to be well-adjusted happy individuals.

Managing Risk (October 2007)

"Risk." It's a funny concept. Economists, engineers, insurance companies and even fraterinities all study "risk." But parents do more than study risk, they live it.

There's risk in every day life -- a car could crash into you on your way to work or your house could explode from an undetected gas leak.

Life means risk. but if we get caught up in analyzing all that could go wrong, we lose sight of all that life has to offer and miss out on all that can go right.

As parents of allergic kids, we too get caught up in the risk associated of living with food allergies. Sometimes we let our concept of risk control our lives, rather than realizing it is our job to control the risk. We must engage in accurate risk assessment.

Two ways to do this is to practice strict avoidance of food allergens, while committing yourself to 100 % access to emergency medicine. Studies show that the reality of a fatal reaction associated with food allergies is very, very small.

On the surface level, controlling your child's ingestion of food seems very manageable. But this is a myth. The omnipresence of food, the existence of cross-contamination and the growing independednce of your child make this a challenging feat.

But this isn't that different from parents all over the world who are not living with food allergies. Dangers lurk in every corner -- from strings on hooded sweatshirts to the playground at the school. We cannot remove all risk from life or our child would not be living.

Instead of fruitlessly trying to control our children's lives --making both parent and child miserable -- we must focus on that which we can control.

What we can control is educating others about the seriousness of food allergies, teaching our children about how to keep themselves safe, and ensuring our child has ready access to life-saving medicine in the form of epinephrine.