Every time someone asks me how I am doing, a thought goes through my head – should I just say I am doing ok, or should I really speak my mind? Can the person before me, really handle the storm of thoughts in my head? Will the person understand the depth of my pain? Will the person give a spiel on how things will improve some day or how if I believe in it, it will happen?
I know and am well aware that I have a lot to be thankful for. In no way, am I not grateful for it. However, it is also true that there are more days that I focus on the issues we do have rather than the issues we don’t have. It may be because we don’t get good sleep most days of the week. Our daughter wakes up itching and needs cream to be applied to her face, neck and arms. Some nights she finds it hard to get back to sleep once she awakens, which means less sleep for all of us.
Maybe it’s because our daughter is now inseparable from her cream. She has to take it everywhere she goes and apply several times in the day. Maybe its because our daughter, despite our efforts to make her feel confident about herself, at age 3, feels embarrassed to put cream. Maybe its because she cries in the day to not put cream and begs at night for the same cream.
Maybe its because she has torn skin on her neck that make her scream in pain when she goes for a shower. She used to love the shower – could stay in there for a whole hour if I let her! Now she does not even want to think about it.
Maybe its because I have to work very hard to provide her with home remedies the whole day, prepare food from scratch for almost all that she eats, keep looking for safe options for her, make sure she has her homeopathy per the schedule and worry about her the rest of the time. Rest is not a word I understand anymore.
Maybe it’s because our daughter’s and our lives are not “normal” as is with her food allergies – but when she has outbreaks like these, she has further restrictions on her food. She cannot eat out, she cannot eat things she loves like scrambled eggs, chicken, cheese and strawberries, she is not supposed to eat anything her friends give her, she has not been introduced to chocolate. So she cannot eat half the things due to allergies and the other half due to eczema.
We cannot travel because she cannot eat out – unless I cook for the whole trip and make sure nothing goes bad or we rent a suite and I cook there! To top that, she has car sickness so we have to prepare food going in her AND coming out of her. Its just a lot of work and stress to even think of taking a trip out.
Eating out even locally is another stressful experience. Stressful to tell our daughter she cannot eat what we are eating, to makes sure she does not touch something that may have allergens. Usually in 15 mins, I am ready to head out of the place. Initially tears used to come to my eyes if I were eating a plateful of delicacies and my daughter could not; now I just feel angry.
Going for parties and gatherings is a similar experience. I have to carry her food everywhere, she has to go through the experience of not being able to eat when her friends are eating and we have to be careful she does not eat or touch something she should not. She is now used to the idea that she is a bit different when it comes to food, but we are still struggling with the fact. I think it has to do with the fact that, have been lucky to have had a carefree childhood and life with regards to food, and she does not know any better. She has cried in the past because some girl pointed out to the rashes on her face and kept asking what happened to her.
The scariest part of this journey is praying everyday that she remains safe – that she does not accidently eat something she should not, that she does not touch something that she should not, that she is not forced by bully to eat something she should not.
I know it’s a long journey ahead, for her and for us. We hope to teach her to take care of herself, to be confident in her own skin which flares up and will be an object of pointing fingers in school, to be safe, to defend herself. However, the fears and sadness we have are not figments of imagination. This is not a problem we can solve. We can only hope to avert problems. This is not something we can change and have to learn to live it with it – with a smile on our faces, hiding the fear and sadness we discuss as parents after she goes to school. I am grateful for a smart daughter who has every chance for a good life. So work hard to make sure that is what she feels, but I am so scared inside that it overwhelms me at times.
I don’t know what a vacation means anymore, but I would be ok with it if someone told me that magically one day my daughter will not have to worry about these things. However hard I try, there is no solution. Its not a viral infection that once expects to go away in a few days. It is not something she may outgrow. By pretending that it may, we may set ourselves up for failure. I know the power of prayers and positive energy. I just wish I could focus on that right now. I know I need to.
Of course, maybe there will be a scientific breakthrough – that’s ending on a positive note for all my well wishers.
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