(A condensed version of today's post will be appearing on the "All Things Tubie" blog on the Feeding Tube Awareness website.)
We can all use a little help: Friends and Family
What can friends and family do to help or be more supportive? What would you like them to know about tube feeding?
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 medically complex child 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. There was a period of time when Raya had an NG tube and a cranial orthotic to correct her congenital plagiocephaly. A man once asked me, "Does she have that helmet because you dropped her on her head?" Really?! We learn to deal with comments like 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. Frequently being asked questions like, "When is he/she going to get rid of that tube?" and "Is he/she eating yet?" do not help. 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. This is a process in and of itself. We are over 3 years into feeding Raya with a tube, and I have felt myself reach new levels of acceptance along the way but it has only been within the past few months that I have really, truly accepted the reality that the tube will be a part of our life for years to come. I know that it has been a hard pill to swallow for me, and I'm the one who is the most heavily involved in the process, so I can only imagine that acceptance will be harder to come by for those close to us who do not get the same information and experience that I do.
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. Again, this can be a process. Raya is our fourth child, but once she got that NG tube, I felt like I was brand new at being a parent of a newborn. Holding her was awkward at first. I didn't want to mess anything up. When she got the G tube several months later, I was afraid I was going to hurt her. It was something that I had to get over very quickly as her mother. Don't let fear of the feeding tube hold you back from maintaining the relationship you want to have 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. I can count on one hand the number of times I ever left Raya with anyone other than Donny during the 6 1/2 months that she had her NG tube. The first time, I left her with my best friend while I helped another friend pack, and within 15 minutes of me leaving her house, she called to tell me that the feeding pump was beeping and I had to have her turn it off until I came back. The other time, I left her for a couple hours with a friend who was a nurse in the emergency room of a local hospital. True to form, Raya managed to rid herself of her NG tube while I was gone and my friend was getting ready to put it back in just as I got back. 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 babysit. 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. Nearly every parent of a child with a feeding tube has experienced a conversation that included something like, "Well, my coworker's cousin has a nephew with EXACTLY the same problem as your baby and they did XYZ and it cured him." My daughter's own doctors have struggled to identify the causes of her digestive problems and she remains largely undiagnosed even after 3 years of testing her for everything under the sun. Many parents are in the same boat. If fixing the problem was as simple as giving the child some kind of herbal supplement or visiting a chiropractor, we would have done it a long time ago. In reality, your coworker has never seen her cousin's nephew's medical chart, nor has she seen my child's medical chart. She has no idea if their problems are "exactly the same," nor does she have any idea what treatment options have been tried or are even appropriate for my child's situation. Parents understand that the intentions are good, but really these types of suggestions are antagonizing at best. 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. I've heard stories from parents about family members giving their children food that they were allergic to simply because they thought the parents were exaggerating or that the allergies couldn't possibly be as serious as the parents claimed. Many children who are tube fed are unable to safely chew and swallow food, or swallow thin liquids without aspirating them into their lungs. I once had a dear friend who, despite my objection, put a small piece of popsicle in Raya's mouth. I had warned her that Raya would gag and vomit, and sure enough, she threw up all over my friend's kitchen counter. I didn't say, "I told you so," but I was thinking it. 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 or how innocent your intentions are.
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. Don't stop inviting us. There were times when I was sleeping for less than 2 hours at a time well beyond the age when my other children were sleeping through the night. Raya slept, but I had to be up and down several times at night doing medications and starting or stopping feeds. I couldn't remember IF I had even eaten lunch that day, never mind what I actually ate. I know that I forgot important things and missed things that I wouldn't have otherwise missed. We had 130 medical appointments in the first year of Raya's life. 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. If anything, it means more to us when we ARE able to get away for an hour to meet up for ice cream late in the evening or even just talk on the phone. I specifically remember going to a baby shower one night shortly after Raya had gotten her G tube. She was vomiting blood, I was struggling to keep up with the medication & feeding schedule she needed, I'd had a hard day, and I truly needed to get out of my house. While everyone else was talking and laughing, I sat there at the table thinking about my baby and her declining health and felt like crying most of the time that I was there, but I really needed to be out of the house and among friends with no discussion of anything medical for a while and was SO grateful to have been invited.
6. There’s no need to feel sorry for us or tell us how amazing we are and 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 doing what it takes to care for our children just like you are, only for us it includes a monthly shipment of medical supplies delivered to our door. I have a hard time with this one. I really appreciate the nice things people say to me in regards to being Raya's mom, but I know that the people who are saying those things love their children just as much as I love Raya. If the tables were turned, they would be doing everything I'm doing.
7. If you really want to help, 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.