365 Days With A Food Allergy

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