Rayanne closed the door to her little girl’s room softly, praying that she would not disturb the exhausted child. It had been another day of screaming, vomiting and diarrhea. Andrea had been inconsolable and eratic all day. Rayanne had been prepared for it this time, though. Yesterday had been an exciting day with a birthday party, friends and fun…at someone else’s house.
Rayanne worked hard at keeping her home a ‘safe’ zone for her and Andrea. They had meticulously cleaned the kitchen and thrown out everything that even hinted of wheat, barley or rye after she had been diagnosed with Celiac disease. The steep learning curve that she and her husband Gene had embarked on to learn about the disorder made them aware that Andrea was having similar symptoms to those that Rayanne had had before she had gone completely gluten-free.
They had approached a doctor and had Andrea tested and then endured the worst two weeks as they filled her full of food that made her violently ill. The test came back inconclusive but Gene and Rayanne decided it would be better for everyone if the whole family ate a Celiac diet. Once that decision was made a confident, energetic, cooperative little girl emerged. However, the fight for her health and her daughter’s had only begun.
Looking back Rayanne could see that what they had attributed to colic and general newborn crankiness was most likely Andrea’s reaction to food that her body did not want. Looking forward Rayanne wondered what things would look like once Andrea started school. How would they keep her away from food that was contaminated with gluten?
It was already difficult at family gatherings and social outings. Fortunately their church was well aware of the needs of Celiacs and made proper preparations for all those who were affected, including the church nursery. Church was safe. Some family were aware and did their best to accommodate their needs sometimes with success and sometimes they went home sick, but at least they tried. On the other hand, there were family members who felt it was just too much hassle and wouldn’t eat with them.
Rayanne reflected on some of the friendships that had been hampered by their dietary needs. They were not trying to be rude when they asked questions about where food had been prepared, they were just trying to prevent eruptions of the hidden beast that lay waiting to disrupt their lives.
As an adult Rayanne was learning to cope with her dietary needs and how to express what she needed but she wondered how a four year old would be able to cope in the public world of school, sandwiches and cookies. Both of them were sensitive enough that even small crumbs could make them violently ill. Would this isolate her daughter? Subject her to teasing or sideways glances? Would she get invited to birthday parties when the other kids found out that she would always bring her own cake? These are questions that Rayanne and Gene don’t have answers to yet. They do not know how they will interact with the school. All of this is uncharted territory, but territory that their journey will surely take them.