Policies....help or frustration

"Mommy, are you going to send in cupcakes for my class too?" inquired 6 year old Tori.

"No, baby. You're school won't let me send in homemade cupcakes like this for your whole class, but I will send you a cupcake just for you in your lunchbox." I informed her as head began to drop because I had said no. You see, she only wants to be like her classmates whose parents send in cupcakes for parties or for birthdays.

As a mom of two children with food allergies I get attempts by schools to protect children from unknown allergens that could be in homemade goodies. Afterall, that makes the most sense right?

Sadly, and frustratingly, policies such as these only highlight the problem and make my children feel that much different from their peers. You see all those prepackaged items contain all those allergens the policy is "protecting" my child from. Bakery cakes will definitely contain eggs and milk (and yes, probably traces of peanuts). Little Debbie snack cakes all have egg (if there is one that doesn't, then I would love to know which one). Pre-made Rice Krispie treats contain milk. Prepackaged donuts contain eggs. Marshmallows are made with corn syrup. The list could go on and on. So in the end unless the parent knows of any special food items being had ahead of time, the food allergic child gets excluded. If it is known and the parent can send in a comparable item, the child is still different because the food items in front of them are not the same.

You say that shouldn't be a problem. I agree to an extent. There are many things my babies have learned that many of your children haven't yet....it's okay to be different, food isn't the center of the world, sometimes you have to sit out/not be part of certain activities for safety reasons, how to read food labels, and sadly, they've learned how to paint on a smile while inside they are crying. Crying because even though they are mostly okay with being different, it is still part of human nature to want to just blend in, be part of the crowd every once in a while.

Although I know it would cause a major outcry, and yes, even end up on the news in the society we currently live in. Chances are it would also put my children in danger of being further excluded. I would much prefer to see a policy excluding any foods from being brought in. You want to "party" or celebrate holidays....do it WITHOUT food. Plain and simple. Party favors seem to be extremely popular, bring those in for all students in the class instead of a cupcake. Holiday celebrations...make some crafts.

Don't get me wrong. I LOVE making special food items for my children and I will continue to do so for as long as I need to.

What I don't love is having to disappoint my child because sometimes it gets overwhelming to be different. There are so many things they've had to be mature about at such an early age, that I don't blame them for every once in a while expressing their disappointment with a head hung low and a quiet "okay".

Where is God?

As I read and prepare for leading a group at church each week, I learn so much and discover all sorts of questions to really get us thinking.

One challenge I've read about recently is to ask everyone to really pay attention to when they have seen God during week. The idea is to start your sessions with a focus on where you have seen God instead of simply talking about how our week has been. If we are to really, truly put God first, shouldn't that be who we talk about seeing from the past week.

In preparing for tomorrow nights session and thinking to myself about where I personally have seen God at work for the past week, I am simply blown away at where I've seen him at work in just the past seven hours.

Years ago I would have to take Bradley in for blood work once in a while at Lab Corp. Amazingly the same ladies are still working there although I doubt they remember Bradley from all those years ago. Recently, because of being placed on methotrexate, Bradley has started getting regular blood work done because we have to keep an eye on certain counts. Two weeks ago we got started and boy was it hard. The ladies there were absolutely patient and wonderful with us as he ran a few times.

Today, was one of those days that I wasn't quite able to put on my shield of armor to do the tough mom job. It was hard to keep from getting misty eyed. Partly because it gets hard at time to keep doing what has to be done and partly because I knew God was at work. He has given us some wonderfully patient ladies to see every two weeks for this blood work. If they ever thought in the back of their minds, "Oh no, here he is again." they never let on. As Bradley ran the second time today and we waited for him to return from the bathroom where he had gone to, I profusely thanked the ladies as I'm quite sure they are probably not thanked enough. Trust me I know of at least one patient and her friend sitting in the lobby at that very moment that had done nothing but complain about the ladies who were working.

Tonight I was once again able to see God at work. I won't lie, I didn't really want to go to the school talent show. I just wanted an evening off. But at 6:30 I found myself seated in the 4th row with Bradley ready for the show to begin. There was a variety of talent, but where God's light was shining was through the choices of songs the students performed to. I am blessed beyond measure to work in a district and a school where prayer is still said and we don't let the mention of God in a program throw us into a tizzy. So tonight mixed in with Shakira, Celine Dion, High School Musical songs, Justin Beiber and many others we got to hear vocal performances and enjoy interpretive dance to the likes of Break Every Chain, Jesus Take the Wheel, Shout to the Lord, God's Got It, and many many more.

It is yet again through the children. They do not fear sharing the Lord out in public and it was proven once again tonight as each one got up to perform and in their own way share about God. So what keeps stopping us as adults from following Jesus command to us to follow him and go out and make disciples? Be fishers of men?

My challenge to myself and to anyone reading this: Stop, reflect, where have you seen God at work in the past hour? Day? Week? He's there we just have to open our eyes and ears.

A Family Affair

When your child has food allergies, it becomes a family affair. When two of your children have food allergies, it becomes a family affair. When one of those children gets put on a feeding tube because of so many food allergies and a rare disease called eosinophilic esophagitis, it continues to be a family affair.

As a mom of two children with multiple food allergies and one child without those allergies, you begin to realize just how much our society revolves around food. Birthday party...food. Class earned a reward for good behavior...food. Holiday....food. Anniversary...food. Get together....food. It is actually very difficult to think of events that don't revolve or include some sort of food.

As a mom of these same children, you want them to feel as much a part of society and the family as any other person so you do what you have to do. You Google recipes, use Pinterest to save your favorites under each child's name because of course they can't have the same allergies, you learn what makes the best substitute for eggs in pancakes and in cakes (trust me, applesauce for the pancakes, flax meal for the cakes), and you try your best to keep up with all the special "treats" that will be given at functions or at school.

But you also learn that you can't kill yourself to make an entire batch of cupcakes just for one cupcake so your child can maybe fit in just in case another child's parent send cupcakes to school for a birthday. You soon teach your children about getting the special foods on really special occasions such as planned for whole class/whole school parties or special parties they are specifically invited to. You teach them how to have fun Trick-0-Treating and then trade out the unsafe candy for safe candy because when you picked up some candy to give out you bought an extra bag of trade out candy just for your kids.

Mealtimes equal no option but to include your children's dietary needs because they really do have a medical problem with food....they are not just picky eaters. Trust me, I made that mistake for an entire year. Bradley is most definitely not a picky eater. His body really did cause him to gag on foods and spit it out/throw it up. But we didn't know that for a year because we thought he was being a "picky eater" with the foods we thought were safe. Who knew you could actually be allergic to chicken, beef, and pork? So yes, once we learned of his disease, we started listening to him more when he started to refuse certain foods. Sure enough, the next allergist visit, those same foods he threw a fit about, he ended up testing positive to for an allergy to that food. So meals are definitely a family affair and saying you have to eat something because I said so didn't always work.

Of course meal times and other food focused gatherings are more than just a family affair. Sometimes, they are a societal affair. You see, as a mom, you learn to find foods that are safe for eating out and you learn how to bring what is needed to restaurants while putting on your suit of armor ready for battle if any worker gives you a hard time for bringing in food from the outside. But what others outside the family don't know is that you still enjoy being invited out because you know how to take care of your family needs. Sure it is a little harder when your tube fed child knows exactly what he is missing out on, but it is still fun to go out. So don't stop asking.

Of course, we've been blessed by parents and grandparents of Bradley's friends so these societal outings are a little easier and even make me cry at times. These are parents who ask for a list of his safe foods so they can have some on hand at a party and then get me to double check the items. They are also the same parents who still include Bradley in on their outings and learn how to feed Bradley through his tube so he can be a normal little boy taking on the world with his friends.

We haven't entered this stage in life for Tori just yet.

But back to the family affair, eating is still a family affair even with a tube fed child. With Bradley he has to be fed about every three hours, much like you would feed a new born so schedules do somewhat revolve around this schedule. And it is so much a family affair at our house that even at 2 years old our youngest daughter learned how to feed her brother.  For her, it is only normal for brother to eat through a tube. Check her out in the video below.

Just because your child has some special needs doesn't mean you quit including them. As a matter of fact, it may just bring you closer together.

Who Needs Cake?

A year ago we celebrated Bradley's 8th birthday knowing that it was the last birthday cake for a long time. Our lives were about to take a drastic turn....

A year later, we all gathered together again to celebrate his 9th birthday. And boy do we have a lot to celebrate. From the drastic life change of Bradley going on a feeding tube and having almost every food taken away to having an amazing year of health and healing. He gained 9 pounds in the year and grew 2 inches. Something he hasn't done since he was a baby.

But cake is still not on the list of foods. So what do you do to celebrate a birthday?

You make homemade ice cream using a small spring pan and add a few candles. It may not seem like much, but when it turns into an ice cream party for all, you get a celebration where the birthday boy isn't left out.

Check out that face! Loving his chocolate ice cream with blueberries, pure chocolate syrup, and Enjoy Life Foods chocolate chunks.

Through the years, I've had to get creative on the foods I make for my children. From learning how to make eggless cakes that are tasty, moist, and don't fall apart to learning how to make lollipops and hard candy without corn syrup to homemade marshmallows without the corn syrup to homemade ice cream made from rice milk. The internet has been my friend in finding recipes, but even then it takes some know how in the kitchen to adjust even the recipes found online.

Thankful God gave me the ability to cook and for all the blessings of this past year.

Bradley Safe Ice Cream Recipe:
~about a cup of sugar
~3 cups rice milk
~dash of vanilla
~1-2 tbsp flax meal
and then flavor it.....
Strawberry.....add fresh strawberries until it looks about right
Blueberry......add fresh blueberries until it looks about right
Cherries........add fresh pitted cherries until it looks about right
Chocolate.....2-3 tbsp cocoa

Blend everything together in a blender. Taste, you want it to be super sweet because it will lose some sweetness in the freezing process. Pour in to a bowl and place in the freezer. Stir every 30-45 minutes. Takes about 3 hours.