Skip to main content

Day 37-39 The necessary "sheltered" life

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've learned not to get wrapped up in any outside personal relationships because people usually reduce the severity of her condition after seeing how well-maintained it is. It's a balancing act that needs 100% participation.

Sophia has contact reactions almost every day. It's usually some unknown cause and, depending on the intensity of the reactions, lingers around for a couple of days coming and going on it's own accord. Parenting a child with a life threatening food allergy is a constant state of observing, protecting, and treating. That is why it is so graciously appreciated when the people in our lives are careful, mindful, and cooperative with our needs. Thankfully we have a few people to help buffer the fear between us and the dangers in the environments. Every child deserves to be kept safe ours just requires more effort.

Comments

Popular posts from this blog

Day 59-65 "What is anaphylaxis"

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...

Perpetuating circumstances...

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...

Healthier Food Allergy Awareness Week!

Good day food allergy families and family members! It's Food Allergy Awareness week, so I wanted to share some intriguing and magnificent news that I've learned in hopes to educate and support others.  *ALLERGIES INSPIRE HEALTH As a "food allergy mom" to a child with a milk allergy (among other new ones), I've learned more about food than I ever thought I'd have an interest to. Removing your child and family from the billion dollar milk BIG BUSINESS industry has changed our lives. As most people look at us with pity and bewilderment about how a human can survive without milk, we find ourselves soaring into unchartered territory and thriving! We've learned so much about the food industry that has completely changed our lives ...for the better. It's a one way road to the effect that once you learn something, you can never "unlearn" it. In fact, the challenges that food allergy families face come more from lack of compassion toward safety, unwil...