Each person deals with stress and grief in their own way. Some find external things to help them cope. It might be food, drink, exercise, religion, etc.
For me it is to reach back to my Mennonite roots. Since diving into cooking traditional recipes and comfort food just isn't an option, I dive into a different aspect of my culture and dress in plain clothes. For much of Little Cub's life I have dressed in such a manner as it has helped me feel closer to God and has helped me deal with the stress of her medical conditions. The prayer kapp helps remind me to stay centered and to ask God for help with things I just cannot understand or cope with on my own. It is a reminder of hundreds of years of tradition and makes me feel surrounded by the love of all those who have come before me.
Recently, I stopped dressing "plain" for several months. I put away my prayer kapps and pulled out my old "fancy" clothes. I will fully admit that I enjoyed wearing jeans, makeup, and jewelry again. I also enjoyed going into stores without getting strange looks from people. But the main reason I stopped wearing my plain clothes was because certain family members seemed to be uncomfortable with my choice in clothing. I tested the theory by dressing in "fancy" clothes (jeans, a cami, and a plaid over-shirt) to see how they responded. The response was overwhelming. Everyone commented how nice I looked and how glad they were to see me in my "farm garb". It broke my heart because I realized my suspicions were correct. So I put away my dresses and prayer kapps and let things be. I didn't want to cause a bigger rift in the family then there already was- FPIES can tear a family apart and cause great misunderstandings and hurt, if everyone isn't on the same page or willing to accept that a child is sick with a strange and rare condition. It certainly wasn't something I wanted for my child and I have a very hard time to this day saying that I have a "special needs child" because saying that means that Little Cub really does have health issues that I cannot control. I know that the family members that are having a hard time with FPIES and with the restrictions it brings, aren't trying to be hurtful but simply just don't want to or cannot understand the significance and severity of FPIES. Especially because Little Cub, "looks fine. She is doing better, right?"
So rather than cause that tension and rift to be even bigger, I changed how I dressed.
Then this past week happened and while in the depths of grief, Little Cub came to me and said "hat", pointing to her prayer kapp. I put it on her head and she looked up at me so seriously and pointed to my head, "Hat". "Ok, Mommy can wear her hat too". I put it on and pulled out one of my dresses too. Instantly I felt like a huge weight had been lifted off of me. I felt better and could breath easier. I looked down at Little Cub and she smiled at me. I felt so grateful to have such a wise little one at that moment. She knew, even when I didn't, what I needed to feel better again.
I realized that in trying to appease others feelings, I had put my own to the sideline and that wasn't healthy.
In this long marathon of life, especially one where FPIES or any serious medical condition is present, we have to remember to take care of ourselves as parents. Finding something that helps you stay balanced and healthy is extremely important. So if you dress a bit differently, who cares?! You are taking care of yourself and your child through some very trying times and if wearing a prayer kapp (or eating chocolate, or doing yoga, or running actual marathons, or ___fill in the blank) keeps you sane then no one has the right to make you feel guilty for your choices.
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.