My 10 Hopes as a Parent of a Child With Severe Food Allergies

Last year during the holidays, we were in the dark. I was in the final leg of a race to find an alternative solution to exclusively breastfeeding my toddler on a diet of eight foods. We were exhausted and lost. At that point we had not yet heard of the term food protein-induced enterocolitis syndrome (FPIES) and were feeling hopelessly alone. We didn’t know what we needed then, much less how to ask for it.

This year I can feel the ground beneath my feet. My daughter Lemon is growing and so is her food list, albeit slowly. As the clouds part, I feel clearer about what kind of support we could use from family around the holidays. This is a list of my hopes for this year. It’s for my family, and for every family growing children with severe food allergies and other rare conditions.

1. I hope you will listen.

We may have a lot to say about the journey with Lemon’s health. We like it when you ask questions and are curious and open-minded. It feels good to have a space to share it with you.

2. I hope you believe what we are experiencing is real. 

Lots of people don’t believe what happens to children with FPIES. It isn’t as important to understand it as it is to accept it. Our number one priority is to keep this child safe. There are plenty of others who will question the validity of her food allergies or the path we have chosen to heal her body. What we need is validation.

3. I hope you trust us as the experts in what our child needs. 

What’s going on with Lemon is rare enough that most practitioners have never seen anything like it. I have made my peace with that, and I ask that you join us in our belief that we know best for her. There is no agency outside of us that can tell us what she needs (except for the coach we pay to read her stools and walk us through food trials — and she is the bomb). Mama and Daddy know best.

4. I hope you won’t look inside the drawers or closets unless absolutely necessary. 

This is just a stress you don’t need to experience. To put it plainly, there isn’t enough mental energy for Lemon’s healing and functional closets. I know you cleaned them out last time you were here. Just don’t look. Thank you for understanding and not judging.

5. I hope you can embrace the unavoidable detox that is a week’s stay at our house.

Just look at the visit as a great way to shake that sugar addiction, lose five pounds and start the new year on the right foot!

6. I hope if things get intense, which they will, you will give us a little space.

The survival of our small family depends on us being able to work through tough moments together. When the raw energy has served its purpose, we will regroup and reconnect. Thank you for knowing it isn’t about you.

7. I hope you ask us the golden questions. 

“Is there anything we can do to help?” at one point felt impossible to answer. If you wait long enough, I may get past “I don’t know” and find the wisdom buried underneath.

8. I hope you visit with no agenda. We are separated from one of the greatest cities on earth by but a few miles and one beautiful bridge. But you won’t go there. Not a chance. Maybe next year? It feels more realistic to hope for a shower. 

9. I hope you encourage me to build a community of support.

Sometimes I need an extra push to take care of myself and my people. Remind me that the whole family will benefit if I create a support system.

10. I hope you can accept that until further notice, we will be hosting family visits.

Lemon’s dietary requirements prevent us from traveling to visit family. It’s that simple. In order for us to maintain her food supply and keep her safe, she needs to be home. You can invite us to your house, but until she is off broth as her main food, we will likely be at home, standing next to the stove. We will let you know when we are travel-ready.

I am grateful the holidays give us a chance to slow down and appreciate family we don’t get to see often enough. While we get to practice asking for what we need, our loved ones get to understand us a little better, and hopefully everyone feels connected to something bigger — to love, to community and to the hope that we will continue to show up for each other no matter what.

Follow this journey on Therapist Mama.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness during the holiday season. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.