With all this updating going on, I’ve been mostly talking about Zac. Jed, however, has not been idle this whole time! He’s had lots of stuff going on in his life. Most of it, though, has to do with leaving the confines of our home, so it’s a good time to flesh out the Ladies Prayer Retreat (as I promised to do over a month ago).
Shortly after Zac was diagnosed with FPIES, I asked someone at church that I thought would know who I needed to talk to about the children’s programs during Sunday School and church hours. Obviously, with the boys food issues, we were going to have to come up with some solution for how to keep them safe.
This person never gave me any answers about who to talk with. Instead, they went into a dismissive diatribe about how “I shouldn’t expect them (the church) to stop giving the kids food” and told me “don’t you worry; we’ll keep them (my kids) from getting into anything they shouldn’t.”
As Zac was already starting to crawl and get into things under our own watchful eyes, Jed was a mischievous 2 year old getting into EVERYTHING, and I’d recently observed my baby nearly die and spend a week in the hospital, you can imagine my reaction to her words.
When I told Darrel, his response was simple and concise: “Well, that’s it for us for church. We can’t go any more.”
And we didn’t.
We have only been to church twice at Easter and once at Christmas since then, and all three times I was a nervous wreck. How on earth would we keep the kids safe when our church is BIG into food and that was the attitude the people there had?
Every visit just solidified our need to avoid going to church.
But here’s the thing: I missed church. I never wanted our lives to be so cloistered and small.
From the beginning, I wanted my kids to go to church. I’d visualized Sunday School, summer camps when they are older, extracurricular activities like Boy Scouts and martial arts, maybe even public schools if homeschooling didn’t seem the right fit.
Instead, we’ve been shut-ins, essentially, for the last two and a half years.
I can control things at home. I can keep the boys safe at home.
But at what cost?
It’s been draining me, this necessary self-imposed isolation.
Every year, our church has a Ladies Prayer Retreat. Every year that I’ve gone, I’ve been spiritually “re-filled” by the end of the session and very glad I went.
I haven’t gone the last two and a half years. I wasn’t about to waste any hard-earned frozen breastmilk on something that wasn’t absolutely necessary.
This year, Darrel encouraged me to go. He knows it’s good for me. After some back-and-forth, I signed up.
The Retreat was held back in the first part of March. Sessions started Friday night, as usual, and I was happy to see so many faces I knew and hadn’t seen in so long. Sure, it was annoying to sit down to dinner with everyone and have to eat food I brought for myself instead of the buffet everyone else was enjoying, but I’m pretty used to that by now. Since nearly everyone there knew our situation, none of the retreat ladies batted an eye at my home-cooked meal.
Saturday we continued our session, and that’s where things got a little off-kilter for me.
Check-out at the hotel was at 11:00 a.m. I’d requested a microwave for my room to heat up my food. Lunch was scheduled for noon. So in the morning, I called and asked if it would be possible to check-out at 12:30 p.m. instead, so I’d have time to run back to the room and heat up my food for lunch.
The hotel agreed, and I headed down to the convention room.
When we broke for lunch, I ran back to the room to heat my food and gather my bags. Only the room key didn’t work.
I hiked the substantial distance to the front desk to get the key re-set, and hiked back to the room again. By the time I’d done all that hiking, heated my food, gathered my bags and headed back to join everyone for lunch, it was 12:30 p.m. and every seat in the eating area was occupied.
I felt frustrated. Unlike in previous years, I wasn’t feeling particularly inspired or spiritually filled as we neared the closing session, and that made me feel down. Then my special dietary needs put me in a situation where I was going to have to scarf down my food instead of leisurely noshing and enjoying the conversation with some very lovely ladies.
And now, even though the facility knew how many people were expected to eat in the room, there wasn’t a chair for me.
I went back to the empty session room and ate my food alone.
Feeling bummed and frustrated slowly grew to sadness and anger.
I don’t expect the world to stop turning because my family has problems. I don’t expect every person in every place we go to completely change their ways of doing things to accomodate us. I don’t expect special treatment.
But I’d sure LIKE it if someone, somewhere, gave a damn enough about me and my children to TRY to make us feel included!
I’d sure like it if I didn’t feel like there was no place in the world that we could go without being on edge and nervous about our safety.
That’s no way to live.
And we’ve been living that way for years.
By the time the room started filling up with women again, I was not in a good mental place. Sitting in the front row with no one in front of me to see, I started silently crying.
Quiet as I was, within a minute, there were three women wrapping their arms around me, hugging me, holding me, comforting me. It made me cry harder.
These women are so compassionate, so kind…and even with people like that around, still there is no way to accommodate my children?
Talk about feeling hopeless.
When I started voicing that thought, though, they shut me down right away.
“You got some bad input from someone two years ago. That is NOT the way most of us feel!” Then they told me who I needed to talk to about keeping the kids safe at church.
A small flutter of hope started to bloom in my heart. Could they be right? They COULD be right…right?
I pulled myself together enough to not be a spectacle, and nervously approached one of the ladies they’d told me to speak with.
Do you know what this wonderful woman said to me when I said I’d really like to bring the kids to church, but that I hadn’t because I didn’t know how to keep them safe and hoped she might help me figure out how to do so?
“Of course! We would love to have you come back, and we’ll do anything we have to do to keep those boys safe.”
Yes, I sobbed again and grabbed her in a gigantic bear hug.
Then she started in with the questions. What can they drink? Would it be better to just put all snacks away? What do they need to know? What do reactions look like?
I mentioned something about bringing snacks for their Sunday School class, since she said it’s never more than ten kiddos in there, and her eyes lit up. “That’s a great idea! I’ve been trying to figure out how to get the kids to eat healthier, and I know what you feed your kids is incredibly healthy. That would help all the children! If you want, you could give me recipes and I could make them.”
Then she said the thing that made me start sobbing again. “Part of what we want to teach the kids is how to reach out to people and show compassion and understanding. They need to learn to walk in someone else’s shoes, and this age group isn’t too young to learn that lesson. Your boys will be a great way to show them how to do that.”
Could a Food Allergy Mama’s heart possibly melt any more at that sentiment? I think not.
I came home from the prayer retreat as buoyant as a helium balloon, and excitedly told Darrel what had happened. I could tell he was trying not to get his hopes up, but he was pleased with the news and we decided to go to church the very next day.
That night I made a double batch of blueberry muffins for Jed and the other kids, and Sunday morning we made a batch of Zac’s banana muffins for him.
This is very new for me; as I said, we’ve been shut ins for so long, I really wasn’t prepared to teach other people how to care for my kids. To be honest, I’m a little nervous about “letting them go”, so to speak. They’ve been under my watchful care for so long, and even with the best of intentions, caring for my kids is complicated.
So, with the Sunday School teachers all on board, we agreed that for a while I will stay with them in class, helping the teachers teach, assisting with the other kids, and figuring out what they need to know to keep my kids safe.
As soon as I feel like they’ve got a handle on keeping the boys safe, I’m heading back into Sunday School classes for myself and regular Church services.
I’m sorry that I took that one persons words and assumed they were speaking for the entire church, but in my defense, I was a little shell-shocked when that exchange happened. Darrel and I were sort of “walking wounded” two and a half years ago, and any hint of anything less than full support sent us running.
Last Sunday, I actually entertained the thought that it would sure be nice to get the boys settled in to class and leave to go to my own class.
I think I might be ready to stretch the leash that far sometime soon.
The other amazing thing that happened at the Ladies Prayer Retreat came about from some small talk one evening. There are two amazing sisters at our church who have been 100% supportive of us from Day 1, and, coincidentally, both have children right around my kiddos age.
One mentioned casually that she had signed her son up for tee ball. Since he’s 6 months younger than Jed, I knew Jed was finally old enough for this activity. (I tried to sign him up last year but he was too young.)
She shared the information on how to sign Jed up, and by Monday morning, he was!
I know I’ve mentioned Jed’s tee ball activities, but this is how it came about. Coming home from the Ladies Prayer Retreat was enough to keep my head spinning! So much NEW stuff to add to our world!
Our newfound engagement with the world hasn’t been effortless or painless, but it’s been worthwhile in so many ways. As I tell more Jed stories, I’ll go into more detail about the good and bad of engaging with the world with severe food allergies/intolerances.
I really am sorry that we’ve missed out on so much life these last few years, but honestly, I don’t think I could have handled it back then. I’m just grateful that these beautiful women blessed us with love and support on the weekend of the retreat, and gave me the hope that we could, finally, find safety outside our own four walls.
Was it hard for you to engage with the world after your kids were diagnosed? What helped you make the leap?