I have been thinking about finding a community of people for support outside of the hospital. Don’t get me wrong, my family is AMAZING. The outpouring of support from my family is overwhelming at times. If Mark or I need a break during a feeding (they take at least an hour every three hours), there is almost always someone there to hold her. Also, family members have taken the time to learn how to use her pump and what medications she needs. However, it would be nice to have friends out here who understand what it is like to have a kid with a feeding tube. It would also be nice to have another mom that I can ask . So, I have been searching.  So far I don’t know anyone where I live, but I have found http://www.feedingtubeawareness.org/.

On this site, I found one very key page: For Friends and Family

I wanted to cry reading it because it hit the nail on the head for some of the things I experience and things I wish people knew. It showed me that it’s not just me. So, I have copied what it says below:

Dear Friends and Family,

We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do.

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many children with feeding tubes do not look sick. Many conditions that can require tube feeding aren’t things you can see. See our condition list. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it may take a lot to keep our kids looking and feeling healthy.

Here are some things we would like you to know:

Getting child care for a tube fed child is very difficult
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Moreover, a number of our children have added equipment for respiratory issues (or other conditions) that require additional training. Even those of us with family nearby may not have family members who are willing or able to learn. We would welcome the support because we all need a break. It might be hard to believe, but quite a few tubie daddies do not even know how to do everything.

If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. We appreciate being asked. Don’t assume we will not go. Like any parent, we might have things that come up that require us to change plans.

Some environments can be very challenging for our children
Birthday parties with lots of kids can be loud and boisterous. Many tubie kids are overwhelmed because of their sensory issues. This may lead to crying and vomiting. Tubie parents may want to know a lot more about the environment, the number of people, noise levels so they can vet the environment and weigh how their children will do. Moreover, tubie parents are concerned about exposing their kids to germs. A simple cold for a healthy child may land a tubie child in the hospital. Unfortunately, this is true.

Tubie kids may also get overwhelmed at holiday gatherings where eager relatives rush over to hug or kiss them. It may take them time to adjust to a new environment (and realize nothing bad like a medical test is going happen there). Moreover, holiday gatherings have a lot of food. Some of our kids want to eat, so it can be hard to limit food to what is safe for them. We would appreciate that food be kept out of reach of our kids and that a parent’s permission is received before any food or drink is served to our kids. For ex. Some tubies can’t have thin liquids because it will go directly into their lungs when they swallow, but if offered water or juice they may accept it.

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can’t be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. Wait staff may even take it upon themselves to bring your child food (this has happened to a number of parents who are then left to explain why their child is unable to eat).

We are tired
There are a lot of things that keep tubie parents up at night. There really isn’t such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren’t always the best sleepers. Some vomit in the middle of the night. Parents may have to investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues and you are looking at a mom who is wondering when the last time she had enough consecutive sleep to dream.

We can also be emotionally drained
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. Families may not realize how stressed tubie parents are. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress…you are just waiting for something else to go wrong.

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn’t have to see. Many of us shouldn’t have seen our kids intubated and connected to so many wires you aren’t sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons.

We don’t expect sympathy or necessarily want sympathy from you
We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don’t particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job.

It may seem silly to you, but it might be cause for celebration for us if our kids eat even a small amount
A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.

A lot of tube fed children eat and drink some, but not enough to grow and develop
Just because you see my child have a bite or two of something, doesn’t mean they can eat or drink enough to sustain themselves and grow. And, a tubie child may turn his head away from the cookie you think he is going to eat. “All kids like cookies!” may not exactly apply here. It takes a lot of work to overcome feeding issues. It isn’t that we haven’t stumbled upon that favorite food our kids want to eat. Believe me, we have tried everything. Also, there are a lot of medical reasons why kiddos can’t eat. Those don’t often go away overnight.

Some of our kids are on SSI, Medicaid or Medicaid Waivers. Many children on feeding tubes are entitled to certain services. Please don’t think we are milking the system or are lazy.
Some tubie parents qualify for WIC, too. Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them and current legislation does not require it in many states. Medical formula can cost upwards of $1000 a month or more to feed a preschooler. On top of that there are copays for doctors, ER visits/hospital stays and other medical supplies. Some medical supplies aren’t covered by insurance at all. Moreover, many tubie families have to have at least one parent home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. So, money can be tight.

Many of us have encountered negativity, inappropriate comments and a lot of staring from strangers. Understand, we may be sensitive. Please think about what you say to us.
People always think kids are cruel, but often children are the most understanding. They ask questions and we are very often happy to explain. Children accept and move on. It is adults that are usually cruel. We have been told to feed our kids in bathrooms or not feed them at all, because it may make others uncomfortable. We may have asked what is wrong with them or shouldn’t they be in the hospital in unkind ways. People think we cruel for making small children wear backpacks or that we have them on a leash if we carry their backpack for them. We could go on and on. Just remember we are talking about how our kids get their nutrition and hydration.

And most importantly, to keep our kids nourished, it is all worth it.

So, I haven’t found anyone in person to talk to, but at least I now have a Facebook group and a website. As always, if you ever have questions about Lyra, her various conditions, and what how she is doing, I am an open book. Just ask.