Dealing with the Frustration of A Child with Reflux
Today I am frustrated. Frustrated that Ella is having a flare up... Even more frustrated by the lack of understanding and plain ignorance we have recently encountered. As I took a minute for my own little "pitty party" I discovered that I was not even close to being alone in this problem.
After getting quite a bit of feedback and e-mails regarding my blog entitled "Dear Mommy I have GERD" I realized that many parents are in the same position that I have been in the past, just wanting people to "get it". The following blog is a compilation of things that the parents I have worked with over the last 6 years have wanted people to "get".
If you know someone who needs a wake up call feel free to send them this blog from me, with love. ;)
1. Reflux parents want more than anything to be able to feed their child "normally". Telling them they should feed their baby "this way" or "that way" is not helpful. While they welcome loving suggestions the finger pointing has got to go! Most moms with reflux babies already tell me that they feel like they are failing their child. They ask me, "Aren't all moms supposed to be able to feed their babies?". It is a devastating feeling for a mother. Trust them when they say that they have tried everything to get their child to eat! If it were that simple there would not be a problem. Support don't criticize.
2. If you feed a reflux child something with out asking the parent first it is very likely that you will cause the child a significant amount of pain. It will not prove that you can get their child to eat when they could not. What it will do is cause, in some cases, weeks of pain for a child who you will not be dealing with and possibly incur medical bills you will not be paying. Many of us reflux parents joke that our children should have t-shirts that say "Don't feed the reflux baby". This also applies to overstuffing refluxers and (knowingly) giving other children things the refluxer can't have in front of them. I know my four year old does not listen to reason when someone else is eating something she can't have.... she just cries.
3. It is always about their child and seldom about you. If they miss an event, leave early or arrive late it is not because they are avoiding you. Please do not take their absence as an insult. Instead ask how you can make it easier or even simply ask them if they are ok. One parent noted to me that their family was irate that they had not been bringing the new baby to see them. Little did the family realize but every time this mom put her child in the car seat the child would vomit everything in his stomach!! It would end up all over himself, the car seat and whatever else was in firing range. Certainly makes outings a bit more difficult! Try to be understanding. These things are far more frustrating and inconvenient for the parent then for those waiting for them.
4. Comments along the lines of "Oh it's only reflux" or "At least it is not [fill in the blank] disease" only serves to minimize what these parents are going through. We all know that it is a blessing our children do not have these other diseases. That having been said, a little compassion goes a long way! Put yourselves in these parents shoes and imagine your own child in pain, chronic pain that you can do very little to quell. Then imagine staying up every night just to hold your child upright so they can sleep with out pain. Think how you would feel if your child stopped breathing or developed recurrent pneumonias, asthma, or couldn't even swallow due to their condition. Think of how tiring it can be to clean numerous episodes of vomiting, find (and pay for) special foods and give numerous medicine doses on little to no sleep... all while listening to that blood curdling reflux scream. It makes you rethink the phrase "only reflux" doesn't it?
5. Most reflux parents just want you to understand. They know only others who have been there will really get it but they want you to try to put yourselves in their vomit covered shoes. Just simply saying that you are sorry their child is in pain and that you realize how hard they are working to help their child can mean more to them then anything!
There is nothing worse then dealing with the stress of your child being in pain and feeling alone. I know because we dealt with that when our oldest daughter Melina had reflux. When Ella was diagnosed and subsequently stopped breathing due to her reflux we wondered how we would get through it again. Thankfully we had extended family move into the area and found a wonderful church family to lean on. The difference was like night and day. Even though Ella's reflux and other GI issues have more severe symptoms and have lasted much longer than Melina's the support we have gotten from our church, family and her fantastic doctors made for a totally different outlook.
If you are reading this and know someone who has a reflux baby. Please be the person who supports them on the "reflux rollercoaster". If you can't be supportive, then please... just keep your mouth shut!