Skip to main content

A little epiphany

Tonight I was talking with my dear friend Brooke about some of the things that go along with having a child with special needs. She has a darling 8 year old daughter with Down Syndrome, so she gets it. :) I was telling her how the last couple of times I've talked to Raya's GI doctor I've told her how frustrating it is for me to not have a label for Raya's health problems, and that at the same time, I don't understand why I have such a need to put a label on it. Why would I want to label my child with a disability or syndrome?? 
While Brooke and I were talking (well, mostly I was talking and she was listening :), I was telling her about some of the blogs I stalk on a daily basis that are written by moms of children with heart defects. Why do I stalk heart moms? It started out when I was looking for blogs that had anything to do with feeding tubes. I found quite a few that caught my interest, and it just so happened that they were all kids who had either had heart surgery or were waiting for heart surgery. I was so drawn to these blogs because I admired the community of support that all of these heart moms had for each other. I felt a kinship with them because I understood life with a feeding tube and frequent trips to doctors and hospitals and having tests done and blood drawn. At the same time though, I didn't belong to their community because my baby's heart was perfect except for a small, almost undetectable murmur, and although her issues were serious in a way, there was never a time when we wondered if she woud live or die.
Then Raya was diagnosed with cerebral palsy. I thought to myself, okay, now we're getting somewhere. Still though, CP is not Raya's biggest challenge. There was no visible lesion on her brain so her diagnosis was based solely on her physical symptoms of increased muscle tone and hyperreflexivity (is that a word??). CP did not explain her serious vomiting problem, nor did the diagnosis offer any sort of relief or change of plans for the management of her vomiting, and she is a very mild case so she really is not affected the same way that other kids with CP are. Then there was the sensory processing disorder diagnosis. That tied a few things together and explained a LOT of things, but it isn't totally to blame either. I'm so sick of not having a better answer than "We don't know what's wrong with her, she just throws up and doesn't eat or drink." when people ask me why she has a feeding tube or how long she'll have it. I only WISH I could just rattle off an answer like, Oh, she has XYZ syndrome.
Throughout the last 18 months, I have been so very blessed to meet moms who can relate to me and who I can relate to because our children have similar issues, but as I was talking to Brooke about it tonight, something finally clicked. Maybe it's not that I'm desperate to find a label to stick my child with, although it would be nice to know exactly what we're dealing with so that we might have a better idea of what our future will look like. Maybe what I've really been searching for is a place that we belong. I can relate to moms of kids with heart defects because many of them have feeding issues as well. I can relate to moms of children with autism or genetic syndromes because many of them have sensory issues as well. I can relate to moms of kids with feeding tubes because let's face it, Raya has the mother of all feeding tubes. It doesn't get much more invasive or unnatural than a GJ tube. I can relate to moms of children with anatomical abnormalities that affect their digestive system because Raya has had digestive problems, even though they pale in comparison. I can relate to moms of kids with a lot of different types of special needs purely because I now understand what it's like to have one, but that relation only goes so deep because my daughter doesn't have the same thing that their children do and vice versa. There are such great support systems out there for families of kids with specific challenges, but so far I don't feel like we really belong with any of them.
Now that I've typed that, it sounds pretty dumb. I still don't know why it matters so much to me and I need to let it go. We may never know what is at the root of Raya's chronic vomiting so there might not ever be a label, just the same long list of little labels. At this point, I am just SO grateful that we FINALLY have the puking under control. It took 9 very long months of throwing up multiple times a day followed by 6 very long months of balancing medications & bile drainage to get us to where we FINALLY are now. She hardly throws up at all anymore and that is nothing short of a miracle. She did throw up a couple days ago but that was my fault for running her daytime formula into her stomach a little too fast. Lesson learned. The only time she has really thrown up recently is when I forget to plug her stomach drainage bag in at night and she ends up throwing up whatever is in her stomach in the morning. Other than that, she's better than she's ever been. It took giving her stomach a 7 month break from food to get her there though, which just makes the mountain she has to climb that much higher.
Well, I'm rambling now and I feel a little silly even posting this because it's a little bit crazy, but sometimes life is a little bit crazy and that's okay.


  1. You are an amazing mother, that's all there is to it!

  2. It's not crazy. I can't totally relate, you know, Henry has a label, a couple of them, but I get the wanting to be a part of a community that can help. And the semi-refusal to label my child 'defective' or having some syndrome. Facebook has several heart defect groups, but most of them are dominated by HLHS families,and with good reason. They're looking at multiple surgeries, multiple issues (feeding included), and we're not. I too follow a lot of their blogs, even though they don't exactly relate to us. It's a knowledge is power thing, even if it's more knowledge than I need. However, this morning on one of the group pages, someone posted a group just for Tetralogy of Fallot. YES!!! Finally, a home with families in similar positions.
    I know, this is all not what you're going through. I have the luxury of a label. I can't imagine how frustrating it would be to not have some larger syndrome to link it to, even if you don't really want to, some proven plan of action. But I think what you're doing, following others with similar individual issues, is a great start. Until you have the blessing (?) of a label, you're doing everything you can to research, compare and get the best information to help her. Easier to have it all fit in a nice little box, but hopefully one day she'll understand how hard you've worked to make her life work easier. If nothing else, I admire your determination, selflessness and unconditional love. Your texts and comments about gut issues when we were in the hospital were a tremendous help and awesome perspective. (I'm very behind in the thank you's from that time, but THANK YOU.) And this got all rambly huh? Not crazy. We all just want answers. You're doing a pretty good job, from my view.


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …