Over the last two years I’ve spent a lot of time on message boards for FPIES families.
A LOT of time.
As a result, there are many FPIES families I consider “friends”, even though we’ve never met in person and, to be honest, probably never will.
One of those families, it turns out, has family and friends in Arkansas, and sent me a message: We’re going to be in your area next week…want to meet up?
YES! WE DO!
So Friday last week the kids and I headed over to Terra Studios to meet our first ever, in real life, face to face FPIES family.
I can’t begin to describe how awesome it was.
These last two years I know the message boards have helped me keep my sanity. The online friendships have sustained me and educated me, helped me cope and keep my sons healthy.
The message boards are great!
But being able to chat face to face with folks who are going through the same thing as you, well…it’s even better than the message boards.
Like us, this family has two kiddos, but they have girls. H is 5, and has outgrown her FPIES (thank you, Lord!) and only deals with Fructose Malabsorption. B is 2.5 and is still in the thick of her FPIES, along with some other complicating factors.
Can I just say…the boys fell in love with the girls; H especially!
(Now, I did ask the mom about what I could share in this post, and she said she was fine with whatever pictures I wanted to share. It still felt weird putting someone else’s kiddos photos up, so I put little hearts over their faces. I promise you, the girls were adorable and precious!)
Wherever H went, the boys were soon following.
They found a puppy doggie wandering around and all fell in love. H decided this dogs name was “Allie”, despite the fact the he was most definitely a HE.
They chased that poor dog all over the grounds, but he loved the attention!
H is a whole year older than Jed, and just enough taller that she was able to carry and swing him. Bless her heart, she kept trying to get Jed to swing her, and he tried! But he just wasn’t able to do it. She was at least 3 inches taller, and every time he tried her toes still dragged on the ground.
The good news is that she enjoyed swinging the boys, and they ate it up.
It was so nice to see the boys play with other kids. They just really don’t get the chance to do that very often.
To be honest, the parents didn’t get as much time to sit and chat as I would have liked, thanks to keeping track of 4 rambunctious, running kidlets. The times that we were able to talk, though…what a breath of fresh air!
There was none of the preamble; the lengthy explanations and ground-work laying. We were able to jump right in to “what tests have you had run?” and “what specialists are you seeing?”
We chatted about our food issues and didn’t have to rehash the previous 4-5 years of our experiences before we could get to the nitty-gritty.
It was wonderful.
Food was also not an issue. Sure, B had her Nutra to nosh on, and H got a cookie from the snack stand at one point, but the whole “food is the reason we’re here” thing that non-food allergic moms seem to think is the norm just did not happen.
Turns out? It’s totally doable to get a group of kids together for three hours and NOT provide them with a snack!
Poor Miss B was not feeling very well. She had caught a cold early in their travels, and the remaining cough triggered her asthma. Her blood sugar was all over the place, too. By the time we’d been visiting for a couple of hours, their home team of specialists had advised them to take B to the ER for a steroid.
They decided to take her to Arkansas Children’s Hospital (where Zac was hospitalized and diagnosed) since their family lives closer to Little Rock than our neck of the woods. Just in case.
We had to get a photo of the kids together before we left, so after much chasing and verbal guidance, we got them all lined up on a swing.
Once again, I was reminded of how difficult it is to get more than one child to cooperate when taking a photograph!
The other parents got one shot where both of their girls are looking at the camera and smiling, but the best I got only had sweet little B looking at the camera and smiling. H was sticking out her tongue, Jed was covering his eyes, and Zac was looking at Jed.
When it was time to leave, Jed got sullen. He really didn’t want H to go! If it was up to Jed, we’d move that family in with us so he could play with H and B all the time.
As they were loading up the car, I took a series of photos that just tickled me. Reviewing them on the computer was like watching time-lapse photography, and it’s so indicative of my kiddos personalities.
H is walking off with Jed, and Zac is helping close the car door and waving good-bye.
After I got the kids strapped in the car and started driving, Jed starting crying that he wanted H. I told him that they had to leave, because B was sick and needed to go to the hospital to get helped by the doctor.
At that point, he got VERY concerned for “that baby”; he really didn’t want her to have to go to the hospital and “get poked” (get shots) by the doctor!
It’s been three days now, and he still talks about playing with H and asks if B has gotten poked by the doctors.
I wish we had had more time to visit. This brief three hours brought to light just how isolated I feel most of the time. Even though we have, for the most part, supportive friends and family, it’s different talking to another parent about FPIES and FructMal.
They get it in a way that is hard to explain to non-FPIES/FructMal Parents.
They’re part of the “tribe”.
I really enjoyed the visit, and now I wish I had other FPIES/FructMal families near me even more than I did before.
Have you had a chance to visit in person with other FPIES families? Did you think it was a breath of fresh air, too?