365 Days With A Food Allergy

 The single most popular statement of observation Food Allergy (FA) parents hear is how hard it is for others to understand our predicament. That's a prickly feeling to hear to be honest. Probably because FA parents live and breath food allergy thoughts around the clock, so it becomes unfathomable to think others haven't given them a single one. It seems absurd that with peanut-free schools and planes, and with growing story-lines about anaphylactic reactions to food in the news, that this is just a completely foreign conversation, or that the mind has never wandered there. A problem for just us FA parents alone to be concerned with? That we need to understand why others don't give it a thought or bother to care, however, it's irrational that we expect that they do care? That as a nation we're more concerned that our children have freedom of food choices than safety of foods and food labeling. Ignoring that the cause of this growing food allergy epidemic is still un

Seeking out the responsible culprits causing allergic reactions is an all encompassing role as a FA parent.  When your child is touch allergic in addition to ingestion and airborne exposures the speculations are greater. I cannot count how many times my little one has had an allergic reaction to something unknown to us, leaving us to retrace every movement we've made.  Could something be on the neighbors ball that we just played together with? Could it be something in the rubber on the balloon? Maybe something on the outside of a plastic grocery bag that a grocery clerk transferred proteins to after touching others people's milk items first? Did someone wear their shoes in our home and leave residual milk proteins somewhere? Where is this invisible milk protein lingering so we can clean it or avoid it?! It's a perpetual feeling that you didn't think of "everything" and you let your child down. We really do think of things on a microscopic level, and that's

Perusing through blogs and FaceBook posts I see the tug of war amongst food allergy parents. It ranges from "put your kid out there in everything and let them live life" vs. "hold on to them cautiously and monitor them closely". I've heard comments like "it's in God's hands", or "you can't expect others to change". To start my thought,  I have an inexplicable respect for any parent who manages Food Allergies in a world so content on supporting the wrong end of the cause. I think that the tug of war comes from the social frustrations accompanying our lack of control and trust in society. Frustration that we aren't going to be able to control things so we have to give up a little of that control and put responsibility on others. By doing this you are allowing a little room for error and therefore leaving the control in "God's hands". An example of this invisible trust is sending your kids to school and trusting o

A Little Food Allergy Etiquette  I would imagine that being in unfamiliar territory around a person with a life threatening food allergy is about as awkward as it is having one. There is always an ambiguity about what the expectations are, and if you're willing to work with them. My experience is that most people do not want to be a part of any accountability for themselves or their children, so our greatest struggle in our unique roles as FA (food allergy) parents has been consistency with relationships. It's a constant struggle between trying your hardest to make social settings work, and throwing your hands in the air with frustration toward others.  So what is food allergy etiquette? It's all about honesty, communication and compassion. FA parents plan ahead for everything, so there are very little allergen loopholes that can arise if you're communicating with us. The goal is to keep our children plugged in socially without making them feel inadequate for circumst

Most people who learn about our daughter's "condition" look at us with pity. They say "poor Sophia", "what do you all eat?", "how can you do anything", etc. It's an understatement to express how much I dislike that type of mindset. Our daughter is healthy, happy, and well-adjusted to her sense of self, compassion to others, and her young, but moral compass. Although her allergy presents a great number of obstacles, it's also a constant reminder of how precious our lives are. That really has been the greatest blessing for my family. We don't just go through the motions -we feel and connect our way through everything.  The fact of the matter is that Sophia's well-being is 100% dependent on the environments she is subjected to, and we all contribute to that. She is so so aware of this fact that she, her 4-year-old self, is conscientious to others needs in return.  People choose to think everything not about them is someone else&

Perspective is Everything-- Here's Mine: For my family, our milk allergy journey has presented two things to know: Where's the milk contamination (so we can avoid it), and Learning to understand how to live milk-free, and find the foods we need.   Once we figure out the what and the where, we Have to figure out who. Who can understand our life and/or is capable of "getting it", and who do we need to avoid to keep our daughter's life safe? These (really) three components provide the tools needed to parent a child with life threatening airborne, touch, AND ingestive reactive food allergy. With our daughter's severe allergy, everyone in our household plays by the same rules. They're real simple: NO cows milk allowed...ever!  We've learned that foods are rarely what they claim to be. We're eons beyond being sold by fancy labels and false claims. Some brands mention cross contamination - some don't (even though the 15 million Americans with a food

It's been a while, but I'm back to share some things I've learned on my year long documented journey as a parent of a child with a life threatening food allergy to milk proteins.  I truly do not understand why there is resistance to learning about food allergies. If someone were to tell you that your x-y-z could harm them, or their child, why wouldn't you stop? When I was a kid the x-y-z was smoking. Second hand smoke itself was proven to be bad for us so the smoking public resisted changing and defended their right to smoke, while the non-smokers reasonably defended their right to breathe. Inevitably, the well being of all prevailed by limiting smoking opportunities in public areas that could negatively affect others.  The difference is we aren't talking about possibly getting cancer later in life from another's actions, we're talking about going into anaphylactic shock in 5 minutes because of another's action. I completely understand the unaware indi

Food allergies require people to read labels, learn what 6 syllable ingredients really are, and look into manufacturing and handling practices on foods to avoid cross contamination. Food allergies initiate the science of knowing what you are eating, where it is coming from, and who is handling the food before you touch it and it goes into your mouth. With all of this knowledge we are transformed out of the chronic stage of blissful food ignorance and into the enlightened stage of being terrified about what we are really eating and annoyed at the false advertising! With food allergies aside we are eating some pretty scary things! We are chemically wired (literally) to want  unhealthy high fat, high sugar, and over processed foods. The thought of having to remove these convenient comfort foods from ones diet stirs up some defensive responses in the general public. People struggle with this "sacrifice" so much that, even though the majority of these foods are unsafe around a chi

All parent's of young children living with a life threatening food allergy live in a constant, round the clock state of fear. Fear of the unknown, fear that our children cannot communicate their immediate needs and symptoms, and fear of putting anyone else in charge of managing this extremely dangerous allergy. Releasing control and delegating responsibilities is definitely where I struggle the most because, for me, handing that over to another person can be the biggest mistake I make. I'm not at all worried that a caregiver would not follow our rules and feed my darling junk food or too much sugar, let her watch too much TV, not use her manners, or let her negotiate her way on everything--- like most parent's would be concerned with. I'm worried that they might misread an ingredient, and show up at my house with cow's milk proteins lingering on their body or garments. I'm worried that they are oblivious to the MANY different ways that milk proteins are presen

When people hear the phrase "special treatment" they get concerned that someone is getting something that they are not. Just as I believe that, in general, people are innately good, I also believe that people are innately selfish. It is our human nature to be that way, it is our faith and life teachings that show us how to grow beyond that and find a state of grace. The thought recently occurred to me that the majority of conflict I face in trying to rally people into safe behaviors around my severely milk allergic child, stems from them thinking I'm asking for special treatment. This then leads them to think my daughter/family is getting something more than theirs, and nobody wants to feel gipped by compromising their own wants. It's true that I have a laundry list of non-negotiables when being around my daughter, but the reasoning should be understandable. Sophia's LIFE is in a constant state of jeopardy because of the environments she is subject to. Part of

Raising a child is an enormous endeavor and every parent adapts to this role in a different way. I guess that is what happens when people seem to change after they have children. Some people appear to lose themselves and not be what they once were perceived as to the people around them. That is probably what people would say about me. My views of the world and the people I know in it have taken on a new, different shape. I rest on people who are unconditional and validate my family's challenges. Living in a family with a life threatening food allergy is all-consuming, very real, and transcends into all areas of our lives.  Learning how to live fully through this challenge is where the hope, love, and peace are found (along with the relationships). Focusing on what brings us together is not about the menu, or how things have always been done. It's about the actions we take on to move forward keeping everyone together as a unit without discrimination. Every day I try to come up

Sophia loves stories. She mostly loves the emotional journey a story takes you through that ends with everything being okay. She likes to see other people's struggles and how they work through them. She will stop what she's doing to hear about somebody who's sad or hurt. I've thought about this in the past as her being nosy or a bit of a drama queen. Now, I see it as her compassion for others and maybe her own coping mechanism for the emotional demands of her her condition To a 3 year old, a life threatening food allergy can be traumatic. There is, in it's own right, an emotional process coupled with uncomfortable physical reactions. It's scary and hard to understand. My lingo with Sophia is telling her that I will keep her safe. That's my way of communicating with her that she can relax and have fun, and Mommy will make sure that nothing scary happens to her. When she has  contact reactions she cries in fear and pain and runs to me telling me to "kee

We try very hard to keep Sophia engaged in the world around her and protected from the milk proteins in it. She knows not to touch just anything but she is a toddler after all. She wants to play with children in her life and share their toys and play in their homes, but she cannot. I'm usually assumed to be an overbearing mother holding her back from having fun, but the truth is that each tiny exposure she gets (for the sake of a little fun) increases her immune resistance to milk proteins. Each time she increases she's that much closer to a fatal reaction. There is so much that she is exposed to that I have some level of control over. For instance taking her to an open-aired park and protecting her with long sleeves, pants and wet ones.  I just cannot put her into someone's else's environment that I can't control but have to be responsible for. This makes for difficult relationships.  People either understand and stick around or don't understand and leave. I

Allergic reactions can manifest into a plethora of symptoms. Sophia's allergic reactions started with vomiting and lethargy at the very beginning. It later developed into vomiting AND hives. She was prescribed Bendryl for these reactions. The allergist told us that we must be avoiding all milk --when we thought had been! I did my own research and found 66 hidden ingredients that mean contain milk in some fashion. Even with the avoidance of all of these ingredients that contain milk, Sophia still has allergic reactions mostly every day. She has allergic reactions as a result from contact with or the touch of even the slightest measure of a milk protein. She is still treated with Bendryl and has an Epipen if it becomes life threatening. She hasn't ingested even a trace amount in over 2 years, but she has now become anaphylactic to the touch of milk proteins or the proteins in the air (I cannot even comprehend how she would react to actually ingesting milk). Upon touch, she deve

As I write these posts I think "why would anybody care to hear a daily account of our little life and how a food allergy controls it". I realize that it may not be that interesting to everyone, but I'm reminded of why I started this blog. I want to share our challenges, show our perseverance, and remind myself every day that my faith in everything important to me is huge. After being told that Sophia will not outgrow her allergy, but will continue to grow in severity, I am no longer holding onto the concept of a cure. Instead, I have faith that Sophia will learn how to manage the complexity of her condition and persevere through her life stronger for having gone through all of this. This is a much more realistic and obtainable goal. I have faith that people will understand that the safety of my child often means missing out on moments with their child, or them individually. Because the nature of Sophia's food allergy is so unknown and the knowledge underdeveloped, I

I love rainy days when staying at home has a reason other than recuperating from an allergic reaction or preventing one. Our lifestyle and perspectives are developed with food allergy safety being our first criteria. This is something we have honed in on and it is the greatest difference we have with everyone we know. It's a constant level of decision making that goes beyond general parenting. It's similar decisions that need reevaluation over and over again. We've had family in town and have managed to pull together to have fun and create safe environments while doing it. When people come together to help focus on similarities and not dwell on the differences, life is always beautiful. We are so blessed to have a family dedicated to making the efforts and loving us all through the gray areas. The biggest things we require are patience, understanding that our hearts are in the right place, and effort. We aren't on this journey alone because we all share the same world.

It's a new year, new opportunities and new adventures. 2012 was a great year for us. Here's our recap: We made it through the whole year with NO life threatening anaphylactic reactions! That is an amazing accomplishment when you figure Sophia's allergic numbers are in the top 2% in the country, and milk is everywhere. Sophia has become very aware of her allergy, and how everybody has differences and that's hers. She saw that there are plenty of ways to spend our time that are fun AND safe for her, and she made some new friends who could see that too. She watched her baby sister grow into a walking little toddler (and playmate) with a BIG personality. We had an opportunity to fly our whole family to NYC to see the top Allergist in the country (some say in the world)! There's a feeling of confidence that comes with knowing Sophia is HIS patient and under HIS radar. Our home became a completely milk-free environment for her safety and our friends and family helped to