Some Real

I am taking time out from my extensive to-do list for today, to self-medicate-through-blogging.

Let’s get really real for a second.  It’s been a rough week.  I don’t mean since the week started yesterday or this morning – I mean since last Monday, the last seven days, it’s been rough.

I don’t know what’s up with Kiran for sure, but he has been … you know, it’s almost like he entered the terrible twos but in his time, now, at age three.  Almost.  The hair-pulling, which I have been trying to teach him is not okay for the past two years – this week, it just seems like it was way worse.  I don’t know that it actually was, given everything else I’m about to get into.

The glasses.  Kiran had been doing SO well leaving his glasses on his face and not messing with them.  This week, it’s been a constant battle.  It’s almost like when he first got them – he is constantly taking them off, and they go – guess where? – straight to the mouth.  I’m the mom, so I win every battle, but man, sometimes I get tired of fighting them.  I know consistent redirection is important for him to understand and learn appropriate behaviors, so I do my best.  When it gets really bad and we both need a break, I put them back on after the fifth or sixth time he’s taken them off in a row, and then I say, “Okay, let’s take a break.  Glasses off.”  And then *I* take them off.  Cause again, I’m the mom, and if we are going to get anywhere with this, he has to understand that he doesn’t get to just arbitrarily choose to take his glasses off and leave them off.

Who knows if I’m handling anything correctly.  It’s been two years and I’ve tried several different techniques, and he still pulls my hair 873,462 times a day.  I am beginning new habits with this one.  One of the worst times is when I put him in his bed – that’s when he grabs on, hard, at the base, and grabs my glasses off, and – it’s just a mess.  This week, I started actually holding him close and pinning his arms under mine while I lay him down.  It takes some getting used to, but I know that not only can he not grab my hair then, but it’s also easier on my back doing it that way.

I brag about Kiran’s sleeping often.  He has always been such a good sleeper.  This week?  He has apparently decided 5-5:30 am is his new wake-up time.  This mama has always been adamant that we don’t get up before 6 am at my house.  6 am is early enough.  This morning, he decided to up his game by somehow (I actually think I know how) falling out of his bed and onto the floor.  Mind you, he gave no indication that this happened – I didn’t hear it, he didn’t cry or fuss – he was just in there, chatting like he always does, starting about 5:15.  I ignored him, like I always do, and walked into his room at 6, only to find him on the floor.  Talk about mom guilt.  He hugged me hard for a long time.  He’s good at playing up the mom guilt.  So now I’m solutioning my way through that.

And guess what else?  What is the single biggest rollercoaster we are constantly going on with Kiran?  Oral eating.  He had been doing really well.  So well.  And this week – he’s coughing at pretty much every single meal.  He isn’t as eager to eat as he has been.  He’s even had some issues with his nectar thick water, which doesn’t generally happen at all.  And I have even actually heard him swallow wrong a couple times this week.  It is scary, and it is SO discouraging.  I feel like we have taken a giant step backwards this week, and I have no idea why.  I haven’t been doing anything different – and in fact, I have started backing way off and even skipping some oral meals to give both he and I a break – but it makes me nervous going into feeding therapy tomorrow.

But really, the biggest thing about the past seven days, as I was dealing with all of these things and all of the regular things – and not getting really a break at all because his dad was out of town – in the back of my head, because of the genetic results, all I could think is: “Am I going to be able to do this for the rest of my life?”  What if pulling my hair is just a behavior he will always do, because he never quite grasps that it hurts me?  What if he is non-verbal forever, and I will have to constantly guess what each behavior means – why is he pulling his glasses off every five minutes?  Why doesn’t he want to eat when he’s been so eager?  How did he fall out of his bed?

I know the genetic results were inconclusive.  We don’t know anything for sure.  Our wonderful genetic counselor has reminded me several times, and my own brain has to keep jumping in and reminding me as well.  But the biggest fear that comes from what we do know, about these five other patients with gene mutations in the same gene….is that all five had “absence of speech”.  Of the six kids (including Kiran) who have been identified with a gene misspelling in RAB11B, ranging in age from 3 (Kiran) up to 13 (one of the others, when the data was collected), all of them are non-verbal.

I want to be positive about this.  Optimistic.  I knew it was a possibility Kiran would never talk – it’s been something I have grappled with for the past year as we found out more about his body.  And we won’t stop speech therapy – we won’t stop working toward speech or other alternative forms of communication.  We aren’t ever going to give up on Kiran.  Even if it was definitive; even if a doctor said to me “Kiran will never speak.”  It wouldn’t change what we do for him, to help him progress and learn ways to communicate with us.

But it is an overwhelming thing to come face-to-face with.  It does break my heart.  And it does bring up a lot of fear for me, about the future.  His future.  My future with him.

I am overwhelmed.  There is so much uncharted territory we are coming into.  Things are constantly changing with him lately, it seems.  We have logistics to figure out within the home, we have equipment needs to figure out for him, feeding is an ever-changing challenge, and it just feels like we have added some heavy diagnoses this past year.

I struggle with change and I struggle with uncertainty.  And our life is chock-full of both.


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