Being told that your child needs a feeding tube is hard. Having to make decisions about whether or not to tube feed is hard. Managing the care of a child who is medically complex at home is hard. But one of the hardest aspects of having a tube fed child is being judged and criticized during a time when you are already feeling vulnerable, helpless, and perhaps even questioning your own judgment.
People are curious, and some of them were born without filters. Strangers sometimes say stupid things without thinking. We learn to deal with that, as all parents have to at some point. Even more difficult than thoughtless comments from strangers though, are thoughtless comments from friends and family, whether or not they are intended to be that way. Here are some things that you need to know if you have a friend or family member with a feeding tube:
1. We are struggling to accept the tube ourselves. As such, we appreciate support in reaching a point of acceptance rather than reinforcement of the negative feelings towards the tube that we are trying hard to move past. Understand that the tube is not the enemy, and it is not the worst thing that could happen to your loved one. If you have a loved one who has a feeding tube, learn to love their tube because without it, you may not have your loved one in your life anymore.
2. Learn to be comfortable with the feeding tube, even if you’re not. Don’t be afraid to hold or play with the child. Caring for a child with medical complexities is stressful, and parents need a break every now and then, but finding babysitters is difficult. Be willing to learn about the child’s medical conditions, how to care for the tube, how to administer feedings, and what to do in emergencies. If you’re not comfortable doing it alone, find another friend or family member to help you. A couple of hours out of the house alone together can do wonders for the parents, even if they spend it at the grocery store.
3. Please, please, please do not criticize the decisions we make in our children’s medical care. We are not doctors, and we are doing the best we can with the information we have. If you do not understand why we have decided to go ahead with a surgery, medication, or treatment option, use your very best manners and ask, but do it in the spirit of coming to understand the decision and not to argue with it. Criticism only makes us feel worse about an already difficult situation.
4. Respect our wishes when it comes to the care of our children, no matter how silly the request may sound to you. For the safety of the child, listen to what we tell you and don’t stray from it no matter what you think the outcome may be.
5. Be patient with us. Our lives are in upheaval, and once we make it past the upheaval stage, we have a lot of upkeep to do. Most of us don’t get nearly enough sleep and are entirely overscheduled, so forgive us if we forget things or have to miss out on things. We don’t have time for some of the things we used to have time for and getting out of the house can be difficult, but it doesn’t mean that we value relationships any less.
6. There’s no need to feel sorry for us or tell us that you don’t know how we do it. We are not doing anything that any other parent in our shoes wouldn’t do for their children, and we’re not doing it because we wanted to. We are just doing what it takes to care for our children.
7. Bring over a box of tissues and some chocolate and volunteer to mop up the latest puddle of vomit while we cry into a cup of hot cocoa and tell you all about it. Seriously. Some of us have had our social interactions reduced to people under the age of 5 and medical professionals. We need something in between. We don’t need you to fix anything for us, we just need someone to vent to who will still love us even though all we have to talk about is vomit and medical supplies.
The bottom line is that tube feeding is a learning process for everyone involved. It is difficult, and the support of family and friends is critical.