Today I have something special to share: a guest post written by my Mom!
I often hear food issue families lamenting the lack of support they receive from friends and extended family, so I thought it would be interesting to hear what supporting a food issue family looks and feels like from someone outside the immediate family’s point of view.
I asked Mom if she would share her thoughts, and she said yes…so without further ado, here is my Mom (better known in our house as Grandma) talking about family food issues.
First, let’s get a new name for this. FPIES sounds like something good to eat. Let’s call it DooDooDisease (DDD) or Commercial Stuff is Clearly KaKa (CSICK)!
On a more serious note, life as the parents of a child with food issues is hard. It’s a 24/7 job filled with lots of stress and sleepless nights. They need support from family and friends, but, because FPIES and other food issues are so confusing, misunderstood and little known, they usually don‘t get any help.
Each family is different with different needs, but they all need the occasional break from the babies, a little financial boost (organic, specialty food is really expensive – not to mention the doctor bills), and, maybe most importantly, emotional support.
So let’s look at the ways families dealing with food issues need help, and how Carrie’s Dad and I have found to help.
As I said, everyone needs a break from daily demands, and that is where having someone with whom you can leave your precious babies safely is a gift from heaven.
But that is hard to do.
The terror of that caregiver making a catastrophic mistake keeps you from letting go. The potential caregiver lives in fear of making that mistake and is afraid to be left alone with your children. The consequences of one bad decision on their part is too horrible to even consider.
So how do you get past the terror?
First, and probably most importantly, is trust, love and training. We know that if we make a mistake and let one of the boys get something they shouldn’t have, Carrie is not going to go crazy on us. She understands that we don’t deal with this daily and that we are trying our very best. She also knows that we love these guys as much as we love her (and that’s a lot). And she is honest enough to admit that she has made mistakes herself so she can’t hold us to a higher standard than that to which she is held.
She has also “trained” us as to what is “safe” food and what is not, to recognize the signs of a reaction and what to do in an emergency. We, too, live with an epi-pen nearby at all times and know the quickest way to the hospital of choice. Speed dial is our friend! So, when (not if, but when), we make mistakes, we deal with the results of the mistake – and she doesn’t attack us. She forgives.
Second, Carrie supplies us with all the things that we need to feed these guys that we would not normally have on hand. Three years ago I couldn’t even pronounce quinoa much less know how to cook it! Before every visit, we get together on what my pantry needs to survive several days with the boys. She also supplies all the recipes.
There is so much “stuff”, it usually looks like the little guys are moving in with us permanently. We have dedicated one cabinet in our kitchen to safe foods for the boys. If it is in there, it is safe (at least it is this week!).
Third, we communicate. While she is gone we record the day in a food journal so that she knows what went on food and activity-wise while she was away. We try to write everything down as it happens with as complete a description as possible. We are old and have CRS (Can’t Remember Stuff!) so we write everything down.
We also talk on the phone regularly and she shares new developments with the boys with us as they happen. When we ask questions she explains her answer so we have a better understanding of why we are wrong or (occasionally) right.
We read her blog regularly to keep up on anything she might forget to mention. Contrary to popular belief, Carrie does do more than take care of the children and is a very busy lady. It is easy to forget whether or not she has told us something, The blog is a terrific tool to fill in the blanks. You don’t have to blog but you could do an on-line diary for the caregiver.
In the end, if we are not sure about a food or activity, we call her or Darrel before proceeding. We try to err on the side of safe.
We are retired and on a fixed income so we can’t really help a lot financially. But we raise chickens and eggs organically and we are trying to learn how to raise a garden and preserve the fruits of our labor. I make the boys’ Halloween costumes. I try to make their presents be something they need rather than something they want. I watch for great sales on clothes. Every little bit helps.
Even if you are not going to care for the children or can’t help financially, there are ways to help emotionally. You can make it possible to have get-togethers that are safe and fun. Food issue families sometimes feel isolated because they can’t attend gatherings because of all the food.
The last few years I cooked a Thanksgiving dinner that, while wasn’t completely safe for Jed, included a complete meal for him that was dairy, egg, gluten, sugar and soy free.
The organic turkey had salt and pepper only and wasn’t stuffed. The mashed potatoes were mashed using either the water in which they were boiled or goat milk, once he was safe with that. Green beans got some safe sea salt. There was a tossed salad made of lettuce and tomatoes. Baked sweet potatoes, black olives and sunbutter-stuffed celery sticks finished off the meal for Jed.
Just a little effort made Carrie, Darrel and the boys feel a part of the family celebration rather than separated by food.
We have also made changes in our life. We eat a lot better as we have eliminated a lot of the dangerous foods from the house lest the little ones get into them. We clean with safe cleaning supplies so they are not exposed to chemicals when crawling around and touching everything in the house and breathing the air.
Last, but not least, be there to listen to whatever they need to talk, or whine, about anything. Most people don’t want to hear about other people’s problems and tend to cut off contact. If they don’t see someone regularly, they forget about them. More isolation.
So pick up the phone and talk to them – or text or e-mail. It doesn’t cost much and it helps to keep them a part of the “normal” world.
Now you know how easy it can be to help your family and friends who are dealing with FPIES and other food issues. It can be as little as a phone call or as big as babysitting. Every little thing you do will make them feel more a part of the “real” world and ease the burden of caring for children with real life and death issues.
Yes, I know…my parents are awesome!
Just so you know, it isn’t always sunshine and roses. We have our share of misunderstandings, miscommunication, frustration, and general “head-butting”…just like all normal families.
That being said, what she wrote is right on the mark. Having parents who support us in every way they can is an enormous stress relief. In fact, if I’m perfectly honest, our lives would not be possible without their support.
Contrary to what she wrote, it isn’t easy to support a food allergic family in as complete a way as my parents do. It requires a lot of effort on their part to change their ways to accommodate us.
However, for the friends and family of food allergic children, remember that NO one is required to do all of the things just mentioned! Picking one or two of these tips to implement will make a HUGE difference in your relationship with your food allergic extended family.
For the food allergic families out there, if your family and friends need a little help understanding how to help you, send them this letter. Maybe hearing it from someone walking in THEIR shoes will help!
What’s the best support you’ve been given? Let’s give shout-outs to our loved ones today!
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