"Why can't I eat that?!"

So far this is not a question that has come up too often. As Christopher grows and he is exposed to more children, parties, and events where there are lots of food that he cannot eat...we are preparing ourselves for this question. Right now Christopher more often asks, "Is that Christopher-Friendly?" And seems satisfied with the answer, "No...because it has too much fat." I think it has also been really helpful for him to see that different kids and adults are at times limited in what they can eat. His cousin and another close friend are both severely allergic to peanuts...and mommy can't eat strawberries...and someone else can't have gluten. The other day we were eating a cracker and he asked me, "Mommy is this Kristina-friendly?" To which I said, "No sweetie." "But why?" "Her body does not like gluten very much." In that moment, I found myself grateful that all of our bodies are a little different...so he doesn't have to feel like his is s-o-o different.

Although it would be nice if these small conversations would be enough, I realize it will not always be this easy. And truthfully there is definitely part of me that has had to grieve the foods I wish he could just try (flavorful cheeses...rich chocolate brownies...or just plan old chocolate!) or the fact that he will never be able to go into a restaurant and get just "whatever" he wants off the menu. I worry about how we will encourage him through peer pressure and help him process some of his differences, and yet I know we will face these challenges head on as they come. Currently, two main tips have challenged me as a parent.

First Tip: "Don't feel sorry for him." I can feel sad that he can not try some yummy brownies, but the fact of the matter is, there are a lot of other yummy foods he can have! A dear friend reminded me that I need to sort through my own grief about his food so he can better develop his own perspective. She said, "Honestly, he may not be the type to care. And if he isn't and you teach him to feel 'sad' about his condition or his 'limitations' you will make it harder on him. Let him be sad or frustrated if at some point he feels that way...but be okay if this is not the emotion that he puts with diet." And so I find that I try to be careful when we mention that he cannot have certain foods. I try to make sure my tone is nonchalant instead of pity-filled. I think it also helps that we try to keep mainly Christopher-Friendly foods around the house so there are not lots of food in his daily reach that he can't have...home becomes a safe food place for him.

Second Tip: "When he gets to school try to make his lunches look like the other kid's lunches as much as possible...even if they are not." It hadn't crossed my mind, but makes so much sense. I mean there will be some things we just can't adapt. Then there will be the apple, raisins, box drink , pretzels that are in many children's lunches. Do you know how excited I was when I found fat free cheese and a special peanut butter called PB2? Yes, I realize that grilled cheese sandwiches, pizza and peanut butter and jelly are not the most nutritious choices...but to know that we can make an equivalent made me so excited and hopeful for some of his future social interactions around food. (PB2 has been wonderful! Who knew that they made powdered peanut butter where they extract the fat out...so it has only a tiny amount of fat in it! And the company has been amazing in trying to understand Christopher's disorder too!) I just feel like as he grows he will have to spend quite a bit of time explaining his diet and disorder. I hope that days with his special PB2 sandwhich, fruit and yogurt will not have to be one of those days!
"Why can't I eat that?!" And so we move forward and answer his question by looking on the back of packages when they are available. We show him the number next to the word fat and explain that there are too many of those fat "catipillars" running around in this particular food item. He responds, "Oh..." and takes a nice big bite out of the juicy strawberry he has in his hand.

Did you know fat chains have different sizes? Who knew?!

There were a lot of things I didn't know or understand about the body before I had a child with LCHADD. In college I took environmental science classes and so even basic anatomy was a little out of my league when I first started trying to understand what was really going on inside of Christopher's body. One of the many fascinating things that I learned was that fat exists in various sizes. Then when you consume fat your body begins to break it down into smaller and smaller forms of fat, to use for energy. I quickly learned that there are very long chain fats, long chain fats, medium chain fats and small chain fats. The length depends on the number of carbons that are connected together. And how your body processes these fat chains depends on the length.

As I was studying about fat and fat metabolism, I began contemplating how I would explain this all to Christopher. All of the drawings that I saw of fat molecules looked way too complicated ...and so the more I read about fat, the more I began visualizing them as caterpillars. The above picture is an excerpt from the children's book I wrote about LCHAD, VLCAD and TFP. I wanted to share it with you so you could visualize more clearly that fats have different sizes.Most of the foods we eat are primarily comprised of long-chain fats (the ones that Christopher has a hard time breaking down) but there are short and medium thrown into some of your fruits and vegetables too! Coconut is a little different. Over 90% of coconut's fat is medium chain. This is actually what Christopher's special MCT oil comes from! Although MCT oil has a low smoking point so we don't sautee with it; we can sprinkle it over food, make special butter with it (we made sugar cookies with this butter last Christmas!), and even make a "Christopher-Friendly Pesto" for pasta. This oil is really a life source for Christopher because it gives him a longer form of energy than just glucose and protein to use. We give him this oil and his special medical formula throughout the day to try to give him constant energy. If we know he is going to the playground we give him the oil in food right before we go and follow up with coconut water or Gatorade (which is another great energy source for LCHADDers)

Race and Fundraising Update!

Okay, so pictures from last Easter were probably not what you expected to see under this title. But lets be honest, is there anything more glorious than a child running after Easter Eggs (especially when he is still at the age that it is more about the hunt of the egg rather than what is inside...)! And while we are being honest, looking back on pictures like these remind me not only how lucky we have been with Christopher's health...but encourages me to continue training for our Sprint Triathlon, even when it is difficult.

Difficult? Yes! I am not going to pretend that I have gained some super athletic power sense being in the hospital. Even Ryan is feeling quite challenged by the swim! But we are training hard. We take Christopher on bike rides with us once or twice a week. And he can still squeeze into the jogging stroller so we try to do a couple mile jog together once a week. Then we go to our local "Y" for lifting , running and swimming. Two weekends ago we did our first 16 mile bike ride without Christopher and tried a two mile run afterward. The bike ride went great. Ryan felt great...I was a little exhausted. Then we started our run. 5oo yards into our run I tripped and fell. I remember (as I was flying through the air-literally) that I needed to land in such a way that I didn't hurt myself too bad...as I came down on my hands and knees I mostly succeeded. My knees were busted open, and my hands scratched up...but no broken bones, chipped teeth...I did great! Well, that was until fall number two. (Can you believe I fell twice during one run!) So maybe it was the uneven sidewalk...or maybe it was just being tired...but that second fall I sprained my ankle...which left me healing for about a week before I tried to run again. I knew that training would be painful, but honestly I haven't scrapped my knees since high school and those boo-boos hurt when you are old! Who knew!

This week we are training strong...and hope to do another 16mile bike and complete a two mile run (and maybe our swim) in a couple weeks. We will see! In the meantime pray that I keep my balance and lift my feet off the ground when I run...lol!

On a fund raising note so far we have raised $1, 475 for the clinic. Emory keeps track of donations that are coming in with the various codes that are posted on them. We are so appreciative for all that you have contributed so far! As we see support come in, we are reminded of the vast community that is around us! It is our hope that we can raise $10,000 for the clinic, so if you have not donated yet, please consider this possibility! I keep thinking if we can just find 400 people to donate $25 we will meet our goal!

Thanks for all your love, letters, thoughts and prayers!