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Heavy stuff

(This is one of those keepin' it real posts, and I can tell you right now that it's not going to be all warm and fuzzy. I'm not complaining or looking for sympathy or attention, I just need to get things off my chest and talk my way through what I've been dealing with lately.)

When Raya was a baby and then a toddler, her medical issues were always at the forefront of whatever was going on with her. Managing her feeding, therapies, medications, appointments, vomiting, and all the other day-to-day things was all-consuming for me and I have recently realized that I have not spent much time in the last 4 years thinking about anything beyond the nitty gritty medical care. All of our focus has been on working towards what has always been the ultimate goal of resolving her GI issues and getting her to eat orally and eventually remove the feeding tube. When you have a child with a feeding tube and not much in the way of a diagnosis, that is the easiest and most obvious thing to focus on. I had never put a timeline on when I thought that would happen because without a diagnosis, it's more difficult to make any kind of prediction.

When she first came home from the hospital with an NG tube, I thought we would use it for a week or two until she got back to where she was drinking enough formula on her own and then we wouldn't need it anymore. After a week or two, I thought maybe we'd need it for a month or two, but no more than that. She hadn't been diagnosed with anything and nobody could figure out why she was throwing up so much and not eating, so it wasn't like anybody could tell us what an expected time frame was for her to get back to "normal". After about 4 months, we started to have to look down the road a little farther as we started talking seriously about getting a G tube. When we got the G tube, I thought maybe it would take a year or two. Then when I'd get asked how long she'd have her tube, I'd tell people that we had no idea but that we thought she may be off of it by the time she started kindergarten. With kindergarten coming in less than a year now, I can honestly say that there is no way Raya will be off of her feeding tube when she starts kindergarten, and probably not even by the time kindergarten is over either. 

I have always done my best to be optimistic and to spew optimism to anyone who asked me questions. I don't know why it is so easy to feel obligated to put a positive spin on whatever I tell other people. I'm sure part of it is my own need to hear myself keep it positive, and it also comes from a place of hope that what I'm saying will be the case, but that's not the whole reason. It is also because many times in the past 4 years, when I have gotten brave enough to tell it like it really is to a few of the people closest to me, I have been told that I'm thinking negative and need to be positive about things. I know people don't mean harm when they say things like that, but the sad truth of it is that reality is not always positive, and being realistic does not equate to being a pessimist.  People don't want to hear the truth if it isn't pretty. You know what though? I don't either, but I don't have a choice because this is my life. Our life. It is what it is, and whether it is okay with anybody else or not is not supposed to be my highest priority.

What most people don't realize or understand is that admitting that things are not going to happen on the timeline I would like them to happen on means accepting and grieving a loss. It means accepting the reality that I have spent the last 4 1/2 years fighting against. (and yes, this involves Donny and our whole family but right now I'm just speaking for myself) Beyond accepting the fact that we have no idea when she'll be off her tube and that it will likely be a few more years, it is also hard to accept that there may not ever be a cure for what ails her and she may struggle with digestive difficulties her whole life. Up until the last week or two, I have been operating under the assumption that over time, and with all of the effort that her medical team and her family put into helping her, all of her digestive issues would improve and she would get to the point of being able to eat a relatively normal diet and not need a tube. I don't know what changed or why it happened, but I have come to the realization that there is a flip side to that assumption, and that there is a possibility that she may never be able to eat enough to not need support from a feeding tube, specialized diet, and goodness knows what else in the years to come. Her digestive problems might not be fixable. There. I said it.

And I'm not going to let anyone accuse me of being negative or pessimistic or overly dramatic just because I said that things might never get better than they are right now. Acknowledging the possibilities, both positive AND negative, does not mean that I am giving up on her or giving up on myself or giving up on the situation either. It's just that I owe it to myself to be honest, and the ugly side of the honest truth is that it is possible that the way things are right now could be as good as they ever get for her, and it could even get worse. Having a medically complex child means having layers of heartbreak. They don't come all at once, and for us, there was no diagnosis made to tip me off to the fact that we would be facing years of this. We've had ups and downs along the way, and some of them have been really difficult to handle, but I've always gotten myself past them by reminding myself that things will get better. Living her whole life believing and assuming that things would happen one way and then suddenly realizing that they may NEVER be the way you've always envisioned is heartbreaking. I don't know why it took me so long to get to the point of realizing and really internalizing all of this, but it has been quite a blow to me these past couple of weeks.

Now, all that being said, I still have hope and I believe that things will get better as she gets older. I just think that it will take longer than we have ever thought it would take. I am realizing more and more that as much as I want to fix things for her, that is not in my power to do. My biggest roles moving forward will be to keep doing research and looking for ways to treat her symptoms as they evolve and change, and to help her learn how to manage her own health and medical conditions. Obviously at this point and up until this point, we have had to do pretty much everything for her. She helps with things like putting her monthly supply shipments away and bringing me a new pump bag every morning. Over the next few years though, she is going to have to learn to listen to her body and work with what her imperfect digestive system can do. Recently, she has started to be more able to tell me when her belly hurts. She is not quite able to discern between intestinal pain and stomach pain, but I doubt that most adults could either and she's 4, so I think she's doing pretty awesome. We have to give meds through her J port if we want them to be absorbed in any reasonable amount of time and if we don't want them to end up getting drained back out of her G port. By the time we do her meds and flush the J with enough water to not clog it, we've pushed in about 20 minutes' worth of fluid within a couple minutes. I go as slowly as I can, but I can only go so slow. It usually makes her not feel good for a few minutes. As crappy as the situation is, she has gotten a lot better at telling me when she is having visceral pain. It's horrible to high five my 4 year old for telling me that her stomach hurts and she needs a Farrell bag plugged into her G port, but I have been so proud of her for learning how to express that she is feeling pain, and ask for something that she thinks will make her feel better. She is also starting to use more phrases than just "my tummy hurts" to tell us how she's feeling. She will now tell us that she's full, that her tummy hurts because she's hungry, and that her tummy just hurts. Just those breakthroughs in communication alone are huge, and we can continue to build on that to help her get better at expressing how she is really feeling, both physically and emotionally. So yes, I still believe that things will get better and she will eventually not need a feeding tube anymore, but I have realized and am working on accepting the reality that she may not. Acceptance is a good thing.

 Part 2:
We are now fast approaching Raya's elementary school years, and although the medical issues are still significant (and worse than I had once thought they'd be by this point) they are not the only thing we are dealing with. There are other problems that I have occasionally mentioned briefly, but have mostly kept private. It's a lot easier to talk about things that are purely medical in nature because there is less room for judgement and stigmas. Behavioral and mental health issues are a different ballgame. (for the record, I hate the word "behavioral" because it implies misbehavior, but that's not what "behavioral health" means) There are stigmas attached to mental & behavioral health issues, whether the world wants to agree with me on that or not. I also don't want Raya to look back and be embarrassed by what I have shared. Not that she has a reason to be. Nothing she has been through, whether physical, emotional, behavioral, or anything else, has been her fault, nor is it the result of a naughty child or bad parenting. So no matter what I say, do not judge my daughter, and do not judge us as parents. Period. The other thing that makes sharing some of this difficult is that nearly every time I have tried to talk about it with anyone, my concerns are brushed off as typical age-appropriate behavior and either they don't understand or aren't willing to acknowledge that it is not. It is frustrating and disheartening and makes it difficult to want to talk about certain things when you feel like the people you are going to for support are downplaying the concerns you have. I have been deeply grateful for the select few that have not done that to me, and I have learned a valuable lesson from the experience.

So the next chapter of our story is that we are to a point of needing to address the source of Raya's sleep difficulties, and the source of her difficulty with attention span, focus, and self-distraction. I should say sources, not source, because as with everything else, there are multiple factors involved. Shortly after she turned 3, I took her to see a developmental pediatrician. I really had no idea why we were sent there, I just took her because her other doctors told me I should. What came of that appointment was that Raya was having anxiety that was affecting her ability to function in other areas of her life, like going to sleep on her own for naps or at night. She suggested a few things and told me that if I ever felt like I needed to come back for any reason, that we were welcome to come see her again. I really didn't think we'd ever need to go back but some things have changed for the worse over the summer and when we saw the neurologist a couple weeks ago, she suggested seeing the developmental pediatrician again.

Raya has a hard time focusing. She has a hard time sitting still. She finds ways to distract herself whenever she's faced with anything she doesn't want to deal with, big or small, and she takes selective hearing to a whole new level. She's fidgety. She's constantly on the go. She gets more and more wound up as the day goes on, and by about 4:00 in the evening, she is bouncing off the walls. Her body gets worn out and exhausted but her mind just gets more and more alert and won't stop. And while many of these things are common among 4 year olds, the degree to which they affect her is not. (Let's not forget that I have had 3 other 4 year olds, and I know what typical 4 year old behavior looks like.) It's not normal or acceptable for a 4 year old to be able to stay awake until 4:30 in the morning. It's not even normal or acceptable for a 4 year old to willingly go to bed at 7:00 and then lay in bed for 2 or 3 hours, unable to fall asleep. (and no, melatonin doesn't work for her) When we go to any doctor's office other than her GI doctor, she gets anxiety. Last week, she had such awful anxiety over knowing that we were going in for a blood draw after her therapy appointment that she threw up during therapy for the first time in probably 3 1/2 years. When we go to some appointments, she pulls the shade on the stroller down as far as it will go and curls up in a ball in the stroller, and sometimes even refuses to come out during the appointment. All of those things are becoming greater concerns as she gets older and we are not seeing improvement. If she is going to be successful in school as she starts full-day kindergarten next year and beyond, we really need to address all of these issues.

The reason we went back to the developmental ped this week is because we have seen a decrease in Raya's ability to focus and pay attention to things. (I hate to use the word "regression" but basically yeah.) We used to be able to give her 3 part instructions and she would follow them. Now we give her a single task to do and have to remind her several times of what she's supposed to be doing. These are not complex tasks either. They're things like putting her shoes on the shoe shelf after we get home from school. When I say she has a hard time holding still or sitting still, I mean she can NOT hold still for more than a few seconds at a time. She is constantly in motion. After discussing all of my concerns with the developmental ped and going through some testing with Raya, she has concluded that Raya does not have ADHD. It is more likely that her issues are related to anxiety and GI discomfort, and the lack of good quality sleep on a consistent basis. She was happy to hear that we have an appointment coming up next week with the sleep specialist, and also suggested that we get in touch with a counselor or psychologist to evaluate Raya and help us address her anxiety. I am still playing phone tag with people about the behavioral health part but I am looking forward to the sleep specialist appointment. It's something we probably should have done sooner. I feel like at the moment, we have a great band-aid solution in the sleep medication we're using, but if there is another way to address whatever is causing her to have difficulty going to sleep and difficulty staying asleep, then by all means, bring it on.

Now I feel like I'm just rambling, but the point is that there has been a lot of heavy stuff weighing on my mind & heart lately. Being a parent is hard. Being the parent of a child with so many complex issues is hard in a different way. And now, before I fall asleep at the computer, it's time to go pulse some seltzer water through her partially clogged J port, pump another bottle for Piper, give Raya her night meds, watch her sleep for a few minutes so I can marvel at how relaxed and still she is, get some decorations up for Kaida's birthday tomorrow, and then take a 2-3 hour nap until the feeding pump beeps. Hard or not, I love my life and I am grateful for every one of our kids and all of the lessons they each have taught me, and the ways that each of them enrich my life.


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