The Darkness

I can’t ever bring myself to write when I find myself stuck in the dark.  I am realizing today that it is probably a time I should write, because it might be beneficial for people reading this to see my complete humanness.  I am not always strong.  I do not always see the bright side of things.

In fact, this past week, it has been incredibly, excruciatingly difficult to find the joy.

This is for so many reasons.  My brother would have turned 34 last Friday, the 19th.  A very beloved family friend died that day, and though I had the privilege of standing beside her hospital bed to say goodbye, it was difficult to not be able to go celebrate her life with all who loved her this weekend (We opted to stay home, because we really need to keep Kiran healthy – more on that in a future post).

Wrapped in and around all of those things, with all of the emotions they bring, we have continued struggling with Kiran’s health and his feedings.  It is so difficult to not know why he pulls away from the bottle when he has generally been a very good eater.  It seems we finally have him (mostly) over the viral thing he has had the past three weeks, but he is still fighting some feedings.

We decided two things yesterday morning before Arif left for the week: We would go ahead and start him on the acid reflux medicine to see if it makes a difference (We have had the prescription filled for about a week now but were reluctant to give him medicine when we aren’t positive that’s the issue), and we reinserted the NG tube (He had pulled it out on Thursday but feedings had gotten progressively more difficult with less volume intake).

Every time we go back to the NG tube (which has been quite the back-and-forth this past month), I find myself feeling simultaneously relieved and frustrated.  I wish he could tell us what it is that’s bothering him – it seems he is starting to develop an oral aversion due to something.  Sometimes it seems like it’s a tummy issue – possibly even just bad gas – other times, I think his mouth hurts (This kid has to be teething – hands in the mouth constantly, slobber all over his chin, red cheeks….) – and sometimes I do think it’s acid reflux.  Perhaps he’s just old enough now to associate whatever is going on with his food, and that is why the problem is surfacing now.  I don’t know.  I have spouted theories until I am blue in the face, and I feel completely helpless in this situation.  I am calling the doctor this morning to get a referral to a GI doctor so we can start getting some answers.

But then – that is hard too.  He already has so many appointments for so many medical issues, and now we have this to worry about.  Sometimes I just feel so weighted down by all of it, and I physically can’t make another phone call to another medical person to discuss another issue.  It overwhelms me, and I feel like I am drowning.

But the biggest day-to-day thing I struggle with, with the NG tube…I have so much anxiety around it.  I am getting a little bit better at managing it, now that I realize it may need to be a more permanent fixture in our daily lives, but I worry about it getting pulled out.  I feel like I don’t allow Kiran to play as much, I don’t hold him as close…I’m just so scared of the damn tube!  The good news is – see, I never write until I have the good news to counterbalance the struggle – since realizing this last week when the tube was out (as we were realizing it would likely need to go back in), I have been able to relax myself more this time around.

I still have days where I just hate all of the stuff he has to have connected to him.  Overnight is the worst: his foot brace, the pulse ox, now his ng tube….I am so jealous, sometimes, of people who just get to walk in and pick up their baby, with nothing attached to their little body.  Now that his brace is just 14 hours a day, I have grown to cherish the moments where I get to just play with him, hold him … and that is another reason why I struggle with the feeding tube.

It is so small in the grand scheme of things.  It really is.  And it is a huge blessing – feeding times were becoming stressful, and now I know he will get what he needs, either orally or via tube.  But sometimes the daily struggle is harder for me than the big picture stuff.

I work very hard at being strong for my family, and I work very hard at remaining as positive as I can possibly be.  But sometimes, I just can’t.  The advice I always give people is to allow yourself to feel however it is you feel.  I am trying to take that advice, but it’s hard.  When I struggle to find the joy, I feel like I am failing my family.  Kiran fights so hard and has been through so much – I just feel like he deserves so much more from me.





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